Spanish and Portuguese Societies of Internal Medicine consensus guideline about best practice in end-of-life care

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Over the last 20 years, the age of patients hospitalized in internal medicine wards has increased by 8.3 years.<a class="elsevierStyleCrossRef" href="#bib0005">1</a> Furthermore, in recent years, the number of hospital discharges in internal medicine departments has progressively increased. In Portugal, there were 155,981 discharges in 2008 and 188,107 discharges in 2015, a 20% increase.<a class="elsevierStyleCrossRef" href="#bib0010">2</a> In Spain, there were 461,175 discharges in 2005 and 705,791 discharges in 2015, a 53% increase.<a class="elsevierStyleCrossRef" href="#bib0015">3</a>There was an 86% increase in patients older than 75 years. However, deaths during hospitalization remained stable at 10%. In 2015, 168,942 patients died in public hospitals in Spain; 44.5% of them died in internal medicine wards.<a class="elsevierStyleCrossRef" href="#bib0015">3</a>In recent years, various laws have been enacted in Spain and Portugal on the rights and guarantees of individuals at the end of life and in the dying process.<a class="elsevierStyleCrossRefs" href="#bib0020">4–6</a> These laws consider people in the dying process to be those who have a severe, irreversible illness with a fatal prognosis who are terminal or are close to death.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a> In addition, they define palliative sedation as the administration of drugs in the doses or combinations required to reduce the consciousness of people who have a terminal illness or are close to death in order to adequately alleviate one or more refractory symptoms after obtaining explicit informed consent.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a>The UDVIMI study was a multicenter study conducted in Spain and Argentina that included 1447 patients who died in internal medicine wards. Its results showed that there was insufficient recording of the end-of-life care provided in the medical records and that there were significant differences between patients with and without cancer.<a class="elsevierStyleCrossRef" href="#bib0035">7</a>MethodsObjectives of the guidelinesThe objective of these guidelines is to produce recommendations on good practices for internists who care for patients who die during hospitalization.Target populationThese guidelines provide advice on caring for patients hospitalized in their last days of life.Guidelines development processThe Spanish Society for Internal Medicine (SEMI) and the Portuguese Society of Internal Medicine ordered the creation of these guidelines with the participation of the Advanced Age and Polypathological Patients and Palliative Care working groups of the first society and the Palliative Care and Bioethics working groups of the second. The Boards of Directors of both societies recruited experts whose interests include caring for patients at the end of life.Composition of the panelA committee of 12 members, ten Spanish and two Portuguese, was convened (Appendix B, Annex 1, Supplemental material). Of them, 11 were internists and one was an internal medicine resident. The committee members did not have any conflicts of interest related to the objectives of the guidelines.Development of the recommendationsTwo committee members (JDM and LAMS) carried out a literature review and developed recommendations on patient care in the last days of life. These recommendations were reviewed and agreed upon by the remaining committee members, and were grouped into seven blocks: identification of patients; the patient’s knowledge of the disease, values, and preferences; information; the patient’s needs; attention and care; palliative sedation; and care after death.Delphi processA total of 150 experts, 125 from Spain and 25 from Portugal, were invited to participate in the Delphi process (Appendix B, Annex 2, Supplementary materials). Of them, 105 were internists (90 Spanish and 15 Portuguese); 20 were physicians in other specialties (15 and 5); 10 were nurses (8 and 2); five were patients or representatives of patient associations (4 and 1); five were lawyers and/or bioethicists (4 and 1); and five were others, including managers, politicians, and journalists (4 and 1).An internist was considered an expert when he or she met all of the following criteria: professional practice with direct patient care for at least ten years, having cared for at least 100 patients who have died in the hospital or at home, and having cared for at least 10 patients who have died each year. For the remaining healthcare professionals participating, only ten years of professional experience was requested.Each participant was sent a questionnaire with 37 statements for them to quantify their degree of agreement on a scale of 1–5, with 1 indicating strongly disagree, 2 disagree, 3 neither agree or disagree, 4 agree, and 5 strongly agree.The Delphi process was carried out in two rounds. In the second round, only statements on which there was not a strong consensus or unanimity were sent.Degrees of consensus and strength of the recommendations. The degrees of consensus used for the recommendations are shown in <a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>.<elsevierMultimedia ident="tbl0005"></elsevierMultimedia>Results of the Delphi processIn the first round of the Delphi process, 105 (70%) of the 150 invited panelists responded to the questionnaire. Of them, 47 were men and 58 were women. Respondents were between 34 and 73 years of age, with a median age of 51 years. Of the 37 recommendations, there was strong consensus on 28 (75.7%), weak consensus on 8 (21.6%), and discrepancy on one (2.7%).In the second round, 95 panelists (63.3%) answered the questionnaire. In the end, there was strong consensus on 33 recommendations (89.2%) and weak consensus on 4 (10.8%). The results are shown in (Appendix B, Table S1, Supplementary material 3).RecommendationsIdentification of patients<elsevierMultimedia ident="tb0005"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe European Council and the laws recognize the right of patients with advanced-stage diseases to receive palliative care.<a class="elsevierStyleCrossRefs" href="#bib0040">8,9</a> Patients with palliative care needs must be identified early.<a class="elsevierStyleCrossRef" href="#bib0050">10</a> However, the definition of patients who should receive palliative care is not uniform.A systematic review has proposed considering data on the patient’s health status and the care they are provided. To consider a patient as a candidate for palliative care, he or she must have a progressive, life-threatening disease; have no possibility of achieving remission, stabilization, or modification of the course of the disease; and the care provided must be focused on maintaining the quality of the end of life.<a class="elsevierStyleCrossRef" href="#bib0055">11</a>Some situations point towards the need for a palliative approach to the disease. They include repeated, unplanned hospitalizations; deterioration of performance status with limited reversibility; dependence; loss of weight and muscle mass; persistent symptoms despite treating the underlying disease; request for more help by the patient’s caregiver; and desires expressed by the patient or caregiver for palliative treatment, to stop treatment, not to start treatment, or to focus care on quality of life.<a class="elsevierStyleCrossRef" href="#bib0060">12</a>There are different tools to identify patients who need palliative care, some of which have been specifically developed for patients with cancer.<a class="elsevierStyleCrossRefs" href="#bib0065">13,14</a> In our setting, one of the most used tools is the NECPAL scale.<a class="elsevierStyleCrossRef" href="#bib0075">15</a> There are indices that can help establish a patient’s prognosis and, based on the results, orient towards a palliative approach.<a class="elsevierStyleCrossRefs" href="#bib0080">16,17</a><elsevierMultimedia ident="tb0010"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationAccording to the World Medical Association’s Declaration of Venice, it is the physician’s responsibility to allow a patient to die with dignity and in comfort.<a class="elsevierStyleCrossRef" href="#bib0090">18</a> Therefore, it is essential to identify patients whose death is expected within hours or days.<a class="elsevierStyleCrossRef" href="#bib0095">19</a> This way, it can be guaranteed that the patient will die according to the attributes of a so-called good death.<a class="elsevierStyleCrossRef" href="#bib0100">20</a> They include death according to the patient’s wishes, in comfort, with organized care, with true information, accompanied by family, and with respect for their beliefs and values.Multiple scales have been developed to predict a patient’s risk of death. Among the most used are the PALIAR; GSF-PIG; Palliative Performance Scale; Palliative Prognostic Index; ECOG-PS; and Karnofsky, CrisTAL, and Walter scales.<a class="elsevierStyleCrossRefs" href="#bib0085">17,21–27</a>Diagnosing that a patient is dying is a complex process. The scales for identifying patients in their last days of life must be able to be applied quickly, be based on clinical judgment and a value judgment, and provide enough data to establish a prognosis.<a class="elsevierStyleCrossRef" href="#bib0130">26</a> The characteristic signs of imminent death that patients present with in the last three days of life have been described.<a class="elsevierStyleCrossRef" href="#bib0140">28</a><elsevierMultimedia ident="tb0015"></elsevierMultimedia>Degree of recommendation: weak.Rationale for the recommendationIn addition to pain, patients may experience various symptoms of discomfort when death is near. Among them, dyspnea, dry mouth, lack of appetite, or difficulty sleeping can significantly worsen quality of life. To guarantee that all patients’ needs are attended to, it is recommendable to approach them in a structured way.There are instruments and scales that help comprehensively approach the different palliative care needs. They include the following: SPARC,<a class="elsevierStyleCrossRef" href="#bib0145">29</a>Edmonton Symptom Assessment System,<a class="elsevierStyleCrossRef" href="#bib0150">30</a> MD Anderson Symptom Inventory,<a class="elsevierStyleCrossRef" href="#bib0155">31</a>Condensed Memorial Symptom Assessment Scale,<a class="elsevierStyleCrossRef" href="#bib0160">32</a> and the Milford Palliative Care Assessment Tool.<a class="elsevierStyleCrossRef" href="#bib0165">33</a> There are Spanish and Portuguese versions available for some of them. When death is near, a patient’s needs may change. The Needs Near the End-of-Life Care Screening Tool<a class="elsevierStyleCrossRef" href="#bib0170">34</a> can be used to evaluate them.Some panelists stated that the scales can supplement, but not substitute, the clinician’s evaluation.<elsevierMultimedia ident="tb0020"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationDifferent studies have shown that the condition of the terminal illness is only recorded on the medical history of 50% of patients.<a class="elsevierStyleCrossRefs" href="#bib0035">7,35</a> The underecording is greater among non-oncological patients.<a class="elsevierStyleCrossRef" href="#bib0175">35</a> When comparing patients with or without a record of a terminal condition on the medical chart, those who had it recorded on their medical chart received opioids, palliative sedation, and do-not-resuscitate and discontinuation of medication orders more often.<a class="elsevierStyleCrossRef" href="#bib0175">35</a>The Council of Europe recommends organizing care so that it is provided by a coordinated team and following the best possible standards.<a class="elsevierStyleCrossRef" href="#bib0040">8</a> This is not possible if there is no record of the end-of-life situation in the patient’s medical chart.The patient’s knowledge, values, and preferences<elsevierMultimedia ident="tb0025"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0030"></elsevierMultimedia>Degree of recommendation: strong.Rationale for recommendations 5 and 6Portuguese and Spanish law recognizes the right of patients to receive detailed information on the nature of their disease, the estimated prognosis, and the different clinical scenarios and treatments available.<a class="elsevierStyleCrossRefs" href="#bib0020">4–6,36</a> Likewise, they recognize the patient’s right to participate in his or her treatment plan and to accept and reject treatments. These rights are recognized in medical codes of ethics,<a class="elsevierStyleCrossRefs" href="#bib0185">37,38</a> in the World Medical Association’s Declaration of Venice on Terminal Illnesses,<a class="elsevierStyleCrossRef" href="#bib0090">18</a> and in the Council of Europe recommendations on the protection of human rights and the dignity of terminally ill and dying patients.<a class="elsevierStyleCrossRef" href="#bib0040">8</a> However, communication with the patient continues to be insufficient.In the UDVIMI study, conducted in Spain and Argentina, only 19.6% of terminal patients who died in the hospital knew their prognosis, only 28% of terminal patients were competent for decision making, and only 1.6% had advance directives.<a class="elsevierStyleCrossRef" href="#bib0035">7</a> In a study from the United States, only 37% of patients with cancer had spoken with their physician about the end of life in the four months prior to their death.<a class="elsevierStyleCrossRef" href="#bib0195">39</a> Therefore, it is frequent for family members to be the main receivers of information and those in charge of making decisions.Some clinicians may be afraid of communicating to the patient that the advanced stage of their disease may be harmful. The evidence does not support this perception. In a review of good practices by the American College of Physicians, it was observed that communication with the patient did not increase depression, anxiety, or lack of hope.<a class="elsevierStyleCrossRef" href="#bib0200">40</a><elsevierMultimedia ident="tb0035"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationOne of the problems detected in palliative and end-of-life care is insufficient recording of the patient and family members’ care process.<a class="elsevierStyleCrossRefs" href="#bib0035">7,41</a> To guarantee good quality and continuity of care, all professionals who intervene in the care process of patients with advanced-stage diseases must know their clinical, emotional, family, and spiritual situation. Therefore, it is essential that these data are available and recorded on the medical chart.<a class="elsevierStyleCrossRefs" href="#bib0185">37,38,42</a><elsevierMultimedia ident="tb0040"></elsevierMultimedia>Degree of recommendation: weak.<elsevierMultimedia ident="tb0045"></elsevierMultimedia>Degree of recommendation: strong.Rationale for recommendations 8 and 9Advance directives, also known as a living will, are instructions on healthcare and treatment that an adult, freely and with sufficient capacity to do so, states in advance in a document so that they will be complied with in situations in which circumstances do not allow the person express them personally.<a class="elsevierStyleCrossRef" href="#bib0180">36</a>The right to issue advance directives is stipulated in the Oviedo Convention, signed by the Council of Europe member states.<a class="elsevierStyleCrossRef" href="#bib0215">43</a> Advance directives are regulated by law and there must be a national registry that stores these documents and allows for healthcare professionals to consult them.<a class="elsevierStyleCrossRefs" href="#bib0180">36,44</a>When a patient has an advanced-stage disease and is admitted to the hospital, it is likely that the clinical condition may worsen and at a certain point, he or she will not be able to express their will. Therefore, it is recommended to consult the advance directives registry in these cases. It is necessary to remember that when a patient is capable of freely expressing his or her will, this must prevail over what has previously been recorded in their living will.Information<elsevierMultimedia ident="tb0050"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0055"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0060"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0065"></elsevierMultimedia>Degree of recommendation: strong.Rationale for recommendations 10–13The rights to information and to confidentiality and privacy are stipulated in Spanish and Portuguese law<a class="elsevierStyleCrossRefs" href="#bib0180">36,45</a> and are individual rights. Therefore, only the patient can authorize or limit to whom information on their condition is given.<a class="elsevierStyleCrossRef" href="#bib0030">6</a> The right to information can only be circumvented in some cases stipulated in the law, such as the patient’s disability or therapeutic need. The information contained in the advanced directives document is also subject to the duty of confidentiality.<a class="elsevierStyleCrossRef" href="#bib0220">44</a>The Patient Autonomy Law establishes that it is obligatory to record the information provided to patients in the medical record.<a class="elsevierStyleCrossRef" href="#bib0180">36</a> Other laws ratify this right in the dying process.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a> In addition, it is obligatory to provide information while upholding privacy.<a class="elsevierStyleCrossRefs" href="#bib0180">36,45</a>Being accompanied by family members, caregivers, and loved ones is one of the principles of a good death. Therefore, it is essential that not only the patient but also his or her family members know that the end of life is near. This is recognized in the quality standards of the National Institute for Health Care and Excellence.<a class="elsevierStyleCrossRef" href="#bib0230">46</a><elsevierMultimedia ident="tb0070"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationTo guarantee respect for confidentiality and privacy when providing information, it is necessary for there to be adequate spaces to do so. Likewise, the duty to provide information will be considered another clinical activity of professionals. They will have enough time to do so with the appropriate rigor and calm.The patient’s needs<elsevierMultimedia ident="tb0075"></elsevierMultimedia>Degree of recommendation: strong consensus.Rationale for the recommendationMedical ethics codes stipulate the duty of recording all patient data necessary for facilitating care in the medical chart.<a class="elsevierStyleCrossRefs" href="#bib0185">37,38</a> In addition, the annotations must be made as soon as possible and the patient’s medical record must be available at all times during their hospital stay.<a class="elsevierStyleCrossRef" href="#bib0235">47</a><elsevierMultimedia ident="tb0080"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationTo guarantee optimal palliative care at the end of life, it is necessary for healthcare professionals to be trained and have readily accessible clinical practice guidelines according to their functions.This recommendation is stipulated in the quality standards for end-of-life care from the Irish Hospice Foundation.<a class="elsevierStyleCrossRef" href="#bib0240">48</a> It has been observed that the implementation of these protocols allows for detecting areas for improvement in quality and missed opportunities in patients who die in the hospital.<a class="elsevierStyleCrossRef" href="#bib0245">49</a><elsevierMultimedia ident="tb0085"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0090"></elsevierMultimedia>Degree of recommendation: strong.Rationale for recommendations 17 and 18Laws on the rights and guarantees of a person’s dignity in the death process stipulate that it is obligatory to share decisions to limit treatment efforts among the various medical and nursing professionals.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a> This recommendation is also stipulated in the clinical practice guidelines of the National Coalition for Hospice and Palliative Care.<a class="elsevierStyleCrossRef" href="#bib0250">50</a>Spanish autonomous community laws also establish that it is healthcare professionals’ duty to maintain the records in the medical chart. In addition, it is necessary to record the identity and opinion of the professionals who make the decision to limit therapeutic efforts.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a><elsevierMultimedia ident="tb0095"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationA systematic review that included more than one million patients in 38 studies across 10 countries found that 33%–38% of patients received some treatment that was not beneficial at the end of their life and that 33%–50% of patients with do-not-resuscitate orders had diagnostic tests performed that were of no benefit.<a class="elsevierStyleCrossRef" href="#bib0255">51</a>Avoiding obstinacy by not performing therapeutic actions and futile diagnostic tests, is a duty of healthcare professionals stipulated in the laws<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a> and professional codes of ethics.<a class="elsevierStyleCrossRefs" href="#bib0185">37,38</a> To facilitate not providing futile treatments, measures have been proposed that include training physicians who care for patients at the end of life, educating the population on the limits of medicine and the need to plan for death, as well as reforms in the hospital setting.<a class="elsevierStyleCrossRef" href="#bib0260">52</a><elsevierMultimedia ident="tb0100"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationIt is necessary to differentiate between a cardiac arrest, that is a sudden occurrence in a patient who is relatively stable, and death understood as the end of a progressive, irreversible process of decline.<a class="elsevierStyleCrossRef" href="#bib0265">53</a> Whereas in the first case, resuscitation may be justified, in the second, it is necessary to accept that we are at the end of life and that resuscitation would be a futile maneuver.There is still a great deal of variability in the adoption of do-not-resuscitate orders, and on the consensus on them with the patient and family.<a class="elsevierStyleCrossRef" href="#bib0270">54</a> However, the adoption of these decisions in patients at the end of life has been associated with a lower number of admissions to intensive care units and greater quality of life in the last week of life.<a class="elsevierStyleCrossRefs" href="#bib0275">55,56</a>In addition, in patients with cancer, when a do-not-resuscitate order was signed by the patient, higher quality of care at the end of life and a higher score on good death scales were observed.<a class="elsevierStyleCrossRef" href="#bib0285">57</a><elsevierMultimedia ident="tb0105"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe Parliamentary Assembly of the Council of Europe has recognized the need for providing emotional, psychological, and spiritual support to patients and their family members as part of quality palliative care.<a class="elsevierStyleCrossRef" href="#bib0290">58</a>Spanish and Portuguese law recognizes spiritual and religious support as a right and an integral part of palliative care.<a class="elsevierStyleCrossRefs" href="#bib0020">4–6</a> People of different religious faiths who gathered for the PAL-LIFE Expert Advisory Group of the Pontifical Academy for Life have made the same recommendation.<a class="elsevierStyleCrossRef" href="#bib0295">59</a> In a systematic review, Oliver et al. have identified various tools for evaluating spiritual needs at the end of life.<a class="elsevierStyleCrossRef" href="#bib0300">60</a>Attention and care<elsevierMultimedia ident="tb0110"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationA sufficiently private setting is necessary to guarantee privacy and confidentiality in the last days of life. Individual rooms provide this space. In addition, some laws stipulate this guarantee.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a>Due to limitations in the number of rooms and certain healthcare circumstances, it is sometimes not possible to care for patients in their last days of life in individual rooms in many hospitals. However, hospitals must make every possible effort to guarantee sufficient privacy.<elsevierMultimedia ident="tb0115"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationIn a study conducted in the United States, the presence of family during death was, after absence of pain and being at peace with God, the most highly valued aspect by patients. For family members, physicians, and other caregivers, it was the most important aspect after pain control.<a class="elsevierStyleCrossRef" href="#bib0305">61</a>The care and company of family is considered one of the attributes of a good death.<a class="elsevierStyleCrossRef" href="#bib0310">62</a> The law recognizes the right to be accompanied by family in the dying process and death.<a class="elsevierStyleCrossRefs" href="#bib0020">4,5</a><elsevierMultimedia ident="tb0120"></elsevierMultimedia>Degree of recommendation: strong.<elsevierMultimedia ident="tb0125"></elsevierMultimedia>Degree of recommendation: strong.Rationale for recommendations 24 and 25In the last days of life, nursing team members are the healthcare professionals who are closest to the patient and family. In addition, they are in charge of evaluating patients’ needs and guaranteeing their well-being. Therefore, it is essential for each patient to have an individualized care plan that is adapted to their preferences and personal wishes.<a class="elsevierStyleCrossRef" href="#bib0315">63</a>The Spanish Society of Palliative Care’s nursing care guidelines include the most frequent needs and appropriate plans for addressing them.<a class="elsevierStyleCrossRef" href="#bib0320">64</a><elsevierMultimedia ident="tb0130"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationEnd-of-life care, like palliative care, cannot be divided or interrupted. Our recommendation is in accordance with the National Palliative and End of Life Care Partnership, one of whose ambitions is for care to be coordinated by a team and provided 24 h a day, seven days a week.<a class="elsevierStyleCrossRef" href="#bib0325">65</a><elsevierMultimedia ident="tb0135"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe justification is the same as for recommendation 21.Palliative sedation<elsevierMultimedia ident="tb0140"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationWhen all reasonable means within our reach have been provided and it has not been possible to control the symptoms of patients in their last days of life in irreversible condition, the option of palliative sedation must be considered. This is recognized by the National Hospice and Palliative Care Organization.<a class="elsevierStyleCrossRef" href="#bib0330">66</a> The right of patients with a terminal illness or who are dying with refractory suffering to receive palliative sedation is recognized in the law and professional codes.<a class="elsevierStyleCrossRefs" href="#bib0020">4–6,37</a><elsevierMultimedia ident="tb0145"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationIn palliative care, all decisions must be made jointly with the patient. In the case of palliative sedation at the end of life, a process with irreversible consequences, the final decision must always be made by the patient if he or she is mentally competent. However, a recent multicenter study on palliative sedation at the end of life showed that only one of every three patients is competent for decision making.<a class="elsevierStyleCrossRef" href="#bib0335">67</a> Therefore, the clinician must guarantee that their directives are followed by consulting previous instructions, whether expressed in a living will or directly to family members.<elsevierMultimedia ident="tb0150"></elsevierMultimedia>Degree of recommendation: strong consensus.Rationale for the recommendationBefore giving palliative sedation, it is necessary to confirm if the patient has symptoms refractory to treatment. Therefore, palliative care societies recommend that a multidisciplinary evaluation be made before deciding to administer sedation.<a class="elsevierStyleCrossRefs" href="#bib0330">66,68</a><elsevierMultimedia ident="tb0155"></elsevierMultimedia>Degree of recommendation: strong consensus.Rationale for the recommendationPalliative sedation cannot be administered indiscriminately or injudiciously. American and European palliative care societies have developed recommendations on the administration of palliative sedation.<a class="elsevierStyleCrossRefs" href="#bib0330">66,68</a>The departments that care for patients in their last days of life must have protocols for palliative sedation. This would allow for uniformity in its administration and would facilitate auditing.<elsevierMultimedia ident="tb0160"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationAll of these aspects are included in the documents on palliative care from the European Society and American Society of Palliative Care.<a class="elsevierStyleCrossRefs" href="#bib0330">66,68</a><elsevierMultimedia ident="tb0165"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe UDVIMI study reported that the level of palliative sedation was only monitored using a scale in 16.9% of patients.<a class="elsevierStyleCrossRef" href="#bib0335">67</a> The National Hospice and Palliative Care Organization recommends that sedation be carefully controlled and proportionally titrated in order to achieve alleviation of symptoms and sedation scales be used for this.<a class="elsevierStyleCrossRef" href="#bib0330">66</a>Given its simplicity, we recommend using the Ramsay Sedation scale, although other scales such as the Richmond Agitation-Sedation Scale can also be useful.<a class="elsevierStyleCrossRefs" href="#bib0345">69,70</a><elsevierMultimedia ident="tb0170"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe convenience and obligatory nature of recording all circumstances of end-of-life care in the medical chart have already been included in previous recommendations. However, the UDVIMI study showed that the level of recording in medical charts leaves room for improvement.<a class="elsevierStyleCrossRefs" href="#bib0035">7,67</a>Care after death<elsevierMultimedia ident="tb0175"></elsevierMultimedia>Degree of recommendation: strong.Rationale for the recommendationThe duty of preserving an individual’s dignity continues to exist after death has occurred. To guarantee dignified treatment of the now-deceased person’s cadaver, a care protocol is recommended.<a class="elsevierStyleCrossRef" href="#bib0355">71</a> The guide from the National Nurse Consultant Group can be useful for developing one.<a class="elsevierStyleCrossRef" href="#bib0360">72</a><elsevierMultimedia ident="tb0180"></elsevierMultimedia>Degree of recommendation: weak.<elsevierMultimedia ident="tb0185"></elsevierMultimedia>Degree of recommendation: weak.Rationale for recommendations 36 and 37Death is an irreversible loss and always entails feelings of grief in the deceased person’s family members and next of kin. Healthcare professionals must respect this reaction to the death. It is advisable to facilitate the greatest possible amount of privacy, accompany them until other family members arrive, and provide an opportunity for saying goodbye to the deceased person.Spanish law stipulates that healthcare centers must guarantee care for the grief of family members and caregivers as well as promote the prevention of complicated grief.<a class="elsevierStyleCrossRef" href="#bib0025">5</a>There are factors prior to the death, such as previous losses, exposure to trauma, psychiatric medical history, type of bond, and the relationship with the deceased, which predict the onset of complicated grief. Violent death, the quality of care, the experience of death, relationship with the deceased, spousal closeness and dependence, and lack of preparation before the death have also been associated with complicated grief.<a class="elsevierStyleCrossRef" href="#bib0365">73</a>Conflicts of interestThe authors declare that they do not have any conflicts of interest." "textoCompletoSecciones" => array:1 [ "secciones" => array:10 [ 0 => array:3 [ "identificador" => "xres1447741" "titulo" => "Abstract" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Aim" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Results" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] 1 => array:2 [ "identificador" => "xpalclavsec1320601" "titulo" => "Keywords" ] 2 => array:3 [ "identificador" => "xres1447742" "titulo" => "Resumen" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0025" "titulo" => "Objetivo" ] 1 => array:2 [ "identificador" => "abst0030" "titulo" => "Métodos" ] 2 => array:2 [ "identificador" => "abst0035" "titulo" => "Resultados" ] 3 => array:2 [ "identificador" => "abst0040" "titulo" => "Conclusiones" ] ] ] 3 => array:2 [ "identificador" => "xpalclavsec1320600" "titulo" => "Palabras clave" ] 4 => array:2 [ "identificador" => "sec0005" "titulo" => "Introduction" ] 5 => array:3 [ "identificador" => "sec0010" "titulo" => "Methods" "secciones" => array:6 [ 0 => array:2 [ "identificador" => "sec0015" "titulo" => "Objectives of the guidelines" ] 1 => array:2 [ "identificador" => "sec0020" "titulo" => "Target population" ] 2 => array:2 [ "identificador" => "sec0025" "titulo" => "Guidelines development process" ] 3 => array:2 [ "identificador" => "sec0030" "titulo" => "Composition of the panel" ] 4 => array:2 [ "identificador" => "sec0035" "titulo" => "Development of the recommendations" ] 5 => array:2 [ "identificador" => "sec0040" "titulo" => "Delphi process" ] ] ] 6 => array:2 [ "identificador" => "sec0045" "titulo" => "Results of the Delphi process" ] 7 => array:3 [ "identificador" => "sec0050" "titulo" => "Recommendations" "secciones" => array:7 [ 0 => array:3 [ "identificador" => "sec0055" "titulo" => "Identification of patients" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "sec0060" "titulo" => "Rationale for the recommendation" ] 1 => array:2 [ "identificador" => "sec0065" "titulo" => "Rationale for the recommendation" ] 2 => array:2 [ "identificador" => "sec0070" "titulo" => "Rationale for the recommendation" ] 3 => array:2 [ "identificador" => "sec0075" "titulo" => "Rationale for the recommendation" ] ] ] 1 => array:3 [ "identificador" => "sec0080" "titulo" => "The patient’s knowledge, values, and preferences" "secciones" => array:3 [ 0 => array:2 [ "identificador" => "sec0085" "titulo" => "Rationale for recommendations 5 and 6" ] 1 => array:2 [ "identificador" => "sec0090" "titulo" => "Rationale for the recommendation" ] 2 => array:2 [ "identificador" => "sec0095" "titulo" => "Rationale for recommendations 8 and 9" ] ] ] 2 => array:3 [ "identificador" => "sec0100" "titulo" => "Information" "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0105" "titulo" => "Rationale for recommendations 10–13" ] 1 => array:2 [ "identificador" => "sec0110" "titulo" => "Rationale for the recommendation" ] ] ] 3 => array:3 [ "identificador" => "sec0115" "titulo" => "The patient’s needs" "secciones" => array:6 [ 0 => array:2 [ "identificador" => "sec0120" "titulo" => "Rationale for the recommendation" ] 1 => array:2 [ "identificador" => "sec0125" "titulo" => "Rationale for the recommendation" ] 2 => array:2 [ "identificador" => "sec0130" "titulo" => "Rationale for recommendations 17 and 18" ] 3 => array:2 [ "identificador" => "sec0135" "titulo" => "Rationale for the recommendation" ] 4 => array:2 [ "identificador" => "sec0140" "titulo" => "Rationale for the recommendation" ] 5 => array:2 [ "identificador" => "sec0145" "titulo" => "Rationale for the recommendation" ] ] ] 4 => array:3 [ "identificador" => "sec0150" "titulo" => "Attention and care" "secciones" => array:5 [ 0 => array:2 [ "identificador" => "sec0155" "titulo" => "Rationale for the recommendation" ] 1 => array:2 [ "identificador" => "sec0160" "titulo" => "Rationale for the recommendation" ] 2 => array:2 [ "identificador" => "sec0165" "titulo" => "Rationale for recommendations 24 and 25" ] 3 => array:2 [ "identificador" => "sec0170" "titulo" => "Rationale for the recommendation" ] 4 => array:2 [ "identificador" => "sec0175" "titulo" => "Rationale for the recommendation" ] ] ] 5 => array:3 [ "identificador" => "sec0180" "titulo" => "Palliative sedation" "secciones" => array:7 [ 0 => array:2 [ "identificador" => "sec0185" "titulo" => "Rationale for the recommendation" ] 1 => array:2 [ "identificador" => "sec0190" "titulo" => "Rationale for the recommendation" ] 2 => array:2 [ "identificador" => "sec0195" "titulo" => "Rationale for the recommendation" ] 3 => array:2 [ "identificador" => "sec0200" "titulo" => "Rationale for the recommendation" ] 4 => array:2 [ "identificador" => "sec0205" "titulo" => "Rationale for the recommendation" ] 5 => array:2 [ "identificador" => "sec0210" "titulo" => "Rationale for the recommendation" ] 6 => array:2 [ "identificador" => "sec0215" "titulo" => "Rationale for the recommendation" ] ] ] 6 => array:3 [ "identificador" => "sec0220" "titulo" => "Care after death" "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0225" "titulo" => "Rationale for the recommendation" ] 1 => array:2 [ "identificador" => "sec0230" "titulo" => "Rationale for recommendations 36 and 37" ] ] ] ] ] 8 => array:2 [ "identificador" => "sec0235" "titulo" => "Conflicts of interest" ] 9 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2020-04-21" "fechaAceptado" => "2020-04-28" "PalabrasClave" => array:2 [ "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec1320601" "palabras" => array:4 [ 0 => "End-of-life care" 1 => "Guideline" 2 => "Consensus" 3 => "Best practice" ] ] ] "es" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Palabras clave" "identificador" => "xpalclavsec1320600" "palabras" => array:4 [ 0 => "Cuidados al final de la vida" 1 => "Guía de práctica clínica" 2 => "Consenso" 3 => "Buenas prácticas" ] ] ] ] "tieneResumen" => true "resumen" => array:2 [ "en" => array:3 [ "titulo" => "Abstract" "resumen" => "AimTo develop consensus recommendations about good clinical practice rules for caring end-of-life patients. MethodsA steering committee of 12 Spanish and Portuguese experts proposed 37 recommendations. A two rounds Delphi method was performed, with participation of 105 panelists including internists, other clinicians, nurses, patients, lawyers, bioethicians, health managers, politicians and journalists. We sent a questionnaire with 5 Likert-type answers for each recommendation. Strong consensus was defined when >95% answers were completely agree or >90% were agree or completely agree; and weak consensus when >90% answers were completely agree or >80% were agree or completely agree. ResultsThe panel addressed 7 specific areas for 37 recommendations spanning: identification of patients; knowledge of the disease, values and preferences of the patient; information; patient’s needs; support and care; palliative sedation, and after death care. ConclusionsThe panel formulated and provided the rationale for recommendations on good clinical practice rules for caring end-of-life patients." "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Aim" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Results" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] "es" => array:3 [ "titulo" => "Resumen" "resumen" => "ObjetivoEstablecer recomendaciones de consenso sobre normas de buena práctica clínica en la atención a los pacientes al final de la vida. MétodosUn comité de 12 expertos españoles y portugueses propuso 37 recomendaciones. Se realizó un Proceso Delphi a dos rondas, con participación de 105 panelistas incluyendo internistas, otros médicos clínicos, enfermeras, enfermos, juristas, expertos en bioética, gestores sanitarios, políticos y periodistas. Para cada recomendación se envió un cuestionario con cinco respuestas tipo Likert. Se definió consenso fuerte cuando > 95% de las respuestas estaban totalmente de acuerdo o > 90% estaban de acuerdo y totalmente de acuerdo; consenso débil cuando > 90% estaban totalmente de acuerdo o > 80% estaban de acuerdo y totalmente de acuerdo. ResultadosEl panel abordó siete áreas específicas con 37 recomendaciones que abarcaban: Identificación de los pacientes; Conocimiento, valores y preferencias del paciente; Información; Necesidades del paciente; Atención y cuidados; Sedación paliativa y Atención tras la muerte. ConclusionesUn Proceso Delphi con participación multidisciplinar ha permitido establecer normas de buena práctica clínica en la atención al final de la vida con consenso de enfermos, agentes sociales y profesionales sanitarios." "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0025" "titulo" => "Objetivo" ] 1 => array:2 [ "identificador" => "abst0030" "titulo" => "Métodos" ] 2 => array:2 [ "identificador" => "abst0035" "titulo" => "Resultados" ] 3 => array:2 [ "identificador" => "abst0040" "titulo" => "Conclusiones" ] ] ] ] "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "Please cite this article as: Díez-Manglano J, Sánchez Muñoz LÁ, García Fenoll R, Freire E, Isasi de Isasmendi Pérez S, Carneiro AH, et al. Guía de práctica clínica de consenso sobre buenas prácticas en los cuidados al final de la vida de las Sociedades Española y Portuguesa de Medicina Interna. Rev Clin Esp. 2021;221:33–44." ] ] "apendice" => array:1 [ 0 => array:1 [ "seccion" => array:1 [ 0 => array:4 [ "apendice" => "The following are Supplementary data to this article:<elsevierMultimedia ident="upi0005"></elsevierMultimedia><elsevierMultimedia ident="upi0010"></elsevierMultimedia><elsevierMultimedia ident="upi0015"></elsevierMultimedia>" "etiqueta" => "Appendix A" "titulo" => "Supplementary data" "identificador" => "sec0245" ] ] ] ] "multimedia" => array:41 [ 0 => array:8 [ "identificador" => "tbl0005" "etiqueta" => "Table 1" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "detalles" => array:1 [ 0 => array:3 [ "identificador" => "at0025" "detalle" => "Table " "rol" => "short" ] ] "tabla" => array:1 [ "tablatextoimagen" => array:1 [ 0 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Degrees of consensus \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Results of the Delphi process \t\t\t\t\t\t\n \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Unanimity \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">100% strongly agree \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Strong consensus \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>95% strongly agree or >90% agree and strongly agree \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Weak consensus \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>90% completely agree or >80% agree and completely agree \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Discrepancy \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Results not included in the other options \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Weak disagreement against \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>90% strongly disagree or >80% disagree and strongly disagree \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Strong consensus against \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>95% strongly disagree or >90% disagree and strongly disagree \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Unanimity against \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">100% strongly disagree \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab2489818.png" ] ] ] ] "descripcion" => array:1 [ "en" => "Degrees of consensus of the recommendations." ] ] 1 => array:5 [ "identificador" => "upi0005" "tipo" => "MULTIMEDIAECOMPONENTE" "mostrarFloat" => false "mostrarDisplay" => true "Ecomponente" => array:2 [ "fichero" => "mmc1.pdf" "ficheroTamanyo" => 58533 ] ] 2 => array:5 [ "identificador" => "upi0010" "tipo" => "MULTIMEDIAECOMPONENTE" "mostrarFloat" => false "mostrarDisplay" => true "Ecomponente" => array:2 [ "fichero" => "mmc2.pdf" "ficheroTamanyo" => 64545 ] ] 3 => array:5 [ "identificador" => "upi0015" "tipo" => "MULTIMEDIAECOMPONENTE" "mostrarFloat" => false "mostrarDisplay" => true "Ecomponente" => array:2 [ "fichero" => "mmc3.pdf" "ficheroTamanyo" => 130770 ] ] 4 => array:5 [ "identificador" => "tb0005" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 1. The palliative care needs of each patient must be evaluated at the time of admission and repeatedly during hospitalization." ] ] 5 => array:5 [ "identificador" => "tb0010" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 2. At admission and repeatedly during hospitalization, patients who are in their last days of life must be identified." ] ] 6 => array:5 [ "identificador" => "tb0015" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 3. It is recommendable to use validated instruments and scales to evaluate palliative care needs and identify patients in their last days of life." ] ] 7 => array:5 [ "identificador" => "tb0020" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 4. The condition of a patient who requires care or who is the last days of life must be recorded on the medical record." ] ] 8 => array:5 [ "identificador" => "tb0025" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 5. It is necessary to evaluate knowledge of the disease and explore the values and preferences of patients with advanced-stage diseases who are admitted to the hospital." ] ] 9 => array:5 [ "identificador" => "tb0030" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 6. It is necessary to evaluate knowledge of the disease and explore the values and preferences of the family members of patients with advanced-stage diseases who are admitted to the hospital." ] ] 10 => array:5 [ "identificador" => "tb0035" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 7. It is necessary to record the knowledge of the disease, values, and preferences of patients with advanced-stage diseases who are admitted to the hospital and of their family members on the medical record." ] ] 11 => array:5 [ "identificador" => "tb0040" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 8. It is necessary to consult the advance directives registry when a patient with an advanced-stage disease is admitted to the hospital." ] ] 12 => array:5 [ "identificador" => "tb0045" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 9. When a patient who is in his or her last days of life is identified and cannot express his or her will, it is necessary to consult the advance directives registry." ] ] 13 => array:5 [ "identificador" => "tb0050" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 10. The family and caregivers of patients in their last days of life will be informed of a situation in which the patient is close to death." ] ] 14 => array:5 [ "identificador" => "tb0055" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 11. It is essential to know the limits of confidentiality established by the patient during his or her last days of life." ] ] 15 => array:5 [ "identificador" => "tb0060" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 12. The process of informing the patient and their family members must be recorded on the medical chart." ] ] 16 => array:5 [ "identificador" => "tb0065" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 13. Information will be provided to the patient and family members while maintaining privacy." ] ] 17 => array:5 [ "identificador" => "tb0070" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 14. Departments will have an information office and communicate with the patient and family members in appropriate time frames." ] ] 18 => array:5 [ "identificador" => "tb0075" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 15. It is necessary to systematically evaluate and record the presence of symptoms and their degree of control in the medical record of patients in their last days of life." ] ] 19 => array:5 [ "identificador" => "tb0080" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 16. All departments must have up-to-date clinical recommendations on palliative treatment and treatment in the last days of life oriented toward comfort and control of symptoms." ] ] 20 => array:5 [ "identificador" => "tb0085" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 17. The adaptation of the treatment plan to the patient’s current condition and the limitation of therapeutic efforts must be shared by the care team and agreed upon with the patient and/or his or her family." ] ] 21 => array:5 [ "identificador" => "tb0090" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 18. The adaptation of the treatment plan to the patient’s current situation and the limitation of therapeutic efforts will be recorded and justified in the medical chart." ] ] 22 => array:5 [ "identificador" => "tb0095" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 19. All examinations and diagnostic procedures that to not contribute to a patient’s well-being will be avoided in the last days of the patient’s life." ] ] 23 => array:5 [ "identificador" => "tb0100" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 20. The benefits of do-not-resuscitate orders will be evaluated in patients in their last days of life and recorded in the medical chart." ] ] 24 => array:5 [ "identificador" => "tb0105" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 21. The spiritual needs of the patient and his or her family will be evaluated in the last days of life." ] ] 25 => array:5 [ "identificador" => "tb0110" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 22. Patients in their last days of life will preferably be cared for in an individual room." ] ] 26 => array:5 [ "identificador" => "tb0115" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 23. Accompaniment by a patient’s family will be facilitated in the last days of life." ] ] 27 => array:5 [ "identificador" => "tb0120" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 24. All patients in their last days of life must have a nursing care plan." ] ] 28 => array:5 [ "identificador" => "tb0125" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 25. The nursing care plan will include, at minimum: care of the skin, mouth, nutrition, elimination, breathing pattern, rest, and management of pain and other symptoms of the terminal illness." ] ] 29 => array:5 [ "identificador" => "tb0130" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 26. Structured communication on transitions in care (on-call shifts, shift changes, weekends, holidays) will be provided to patients in their last days of life." ] ] 30 => array:5 [ "identificador" => "tb0135" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 27. Access to religious and psychological care for the family and the family will be facilitated for patients in their last days of life." ] ] 31 => array:5 [ "identificador" => "tb0140" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 28. The need for palliative sedation will be evaluated for patients in their last days of life with refractory symptoms." ] ] 32 => array:5 [ "identificador" => "tb0145" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 29. The patient will grant explicit consent for palliative sedation either verbally or in a written document. If the patient is not competent, and acting in this order, the advance directives registry will be consulted; the wishes previously expressed by the patient and his or her family or next of kin will be evaluated; and, if these are not available, sedation will be agreed upon with the family and always recorded in the medical chart." ] ] 33 => array:5 [ "identificador" => "tb0150" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 30. The indication of palliative sedation must be deliberated by the treatment team." ] ] 34 => array:5 [ "identificador" => "tb0155" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 31. All departments must have a palliative sedation protocol." ] ] 35 => array:5 [ "identificador" => "tb0160" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 32. The clinical orientation guidelines for palliative sedation will include the indications; refractory symptoms to be alleviated; drugs; induction, maintenance, and rescue doses, and monitoring of the level of sedation." ] ] 36 => array:5 [ "identificador" => "tb0165" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 33. To monitor the level of sedation, the Ramsay scale or another similar scale will be used." ] ] 37 => array:5 [ "identificador" => "tb0170" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 34. All circumstances that surround palliative sedation will be recorded in the medical record." ] ] 38 => array:5 [ "identificador" => "tb0175" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 35. All departments will have a post mortem care protocol for the cadaver." ] ] 39 => array:5 [ "identificador" => "tb0180" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 36. After the patient’s death, care for the family members’ immediate grief will be provided." ] ] 40 => array:5 [ "identificador" => "tb0185" "tipo" => "MULTIMEDIATEXTO" "mostrarFloat" => false "mostrarDisplay" => true "texto" => array:1 [ "textoCompleto" => "Recommendation 37. Before and after the death, situations in which there is risk of complicated grief will be identified and referred." ] ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:73 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "La edad de los pacientes atendidos en los servicios de medicina interna en España: una perspectiva de 20 años" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:3 [ 0 => "J. Casademont" 1 => "E. Francia" 2 => "O. 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Special article

Spanish and Portuguese Societies of Internal Medicine consensus guideline about best practice in end-of-life care

Guía de práctica clínica de consenso sobre buenas prácticas en los cuidados al final de la vida de las Sociedades Española y Portuguesa de Medicina Interna

J. Díez-Manglanoa,

Corresponding author

jdiez@aragon.es

Corresponding author.

, L.Á. Sánchez Muñozb, R. García Fenollc, E. Freired, S. Isasi de Isasmendi Péreza, A.H. Carneiroe, O. Torres Bonafontef, en nombre del Comité Directivo de la Guía de Práctica Clínica

a Servicio de Medicina Interna, Hospital Royo Villanova, Zaragoza, Spain

b Servicio de Medicina Interna, Hospital Clínico Universitario, Valladolid, Spain

c Servicio de Medicina Interna, Hospital Universitario Miguel Servet, Zaragoza, Spain

d Servicio de Medicina Interna, Centro Hospitalar e Universitário do Porto, Portugal

e Departamento de Medicina, Urgência e UCI, Hospital da Luz Arrábida, Vila Nova de Gaia, Portugal

f Servicio de Medicina Interna, Hospital de Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain

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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">The progressive aging of the population is changing the profile of patients cared for in hospitals&#46; Over the last 20 years&#44; the age of patients hospitalized in internal medicine wards has increased by 8&#46;3 years&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> Furthermore&#44; in recent years&#44; the number of hospital discharges in internal medicine departments has progressively increased&#46; In Portugal&#44; there were 155&#44;981 discharges in 2008 and 188&#44;107 discharges in 2015&#44; a 20&#37; increase&#46;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> In Spain&#44; there were 461&#44;175 discharges in 2005 and 705&#44;791 discharges in 2015&#44; a 53&#37; increase&#46;<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">There was an 86&#37; increase in patients older than 75 years&#46; However&#44; deaths during hospitalization remained stable at 10&#37;&#46; In 2015&#44; 168&#44;942 patients died in public hospitals in Spain&#59; 44&#46;5&#37; of them died in internal medicine wards&#46;<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">In recent years&#44; various laws have been enacted in Spain and Portugal on the rights and guarantees of individuals at the end of life and in the dying process&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#8211;6</span></a> These laws consider people in the dying process to be those who have a severe&#44; irreversible illness with a fatal prognosis who are terminal or are close to death&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a> In addition&#44; they define palliative sedation as the administration of drugs in the doses or combinations required to reduce the consciousness of people who have a terminal illness or are close to death in order to adequately alleviate one or more refractory symptoms after obtaining explicit informed consent&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The UDVIMI study was a multicenter study conducted in Spain and Argentina that included 1447 patients who died in internal medicine wards&#46; Its results showed that there was insufficient recording of the end-of-life care provided in the medical records and that there were significant differences between patients with and without cancer&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a></p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Methods</span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Objectives of the guidelines</span><p id="par0025" class="elsevierStylePara elsevierViewall">The objective of these guidelines is to produce recommendations on good practices for internists who care for patients who die during hospitalization&#46;</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Target population</span><p id="par0030" class="elsevierStylePara elsevierViewall">These guidelines provide advice on caring for patients hospitalized in their last days of life&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Guidelines development process</span><p id="par0035" class="elsevierStylePara elsevierViewall">The Spanish Society for Internal Medicine &#40;SEMI&#41; and the Portuguese Society of Internal Medicine ordered the creation of these guidelines with the participation of the Advanced Age and Polypathological Patients and Palliative Care working groups of the first society and the Palliative Care and Bioethics working groups of the second&#46; The Boards of Directors of both societies recruited experts whose interests include caring for patients at the end of life&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Composition of the panel</span><p id="par0040" class="elsevierStylePara elsevierViewall">A committee of 12 members&#44; ten Spanish and two Portuguese&#44; was convened &#40;Appendix B&#44; Annex 1&#44; Supplemental material&#41;&#46; Of them&#44; 11 were internists and one was an internal medicine resident&#46; The committee members did not have any conflicts of interest related to the objectives of the guidelines&#46;</p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Development of the recommendations</span><p id="par0045" class="elsevierStylePara elsevierViewall">Two committee members &#40;JDM and LAMS&#41; carried out a literature review and developed recommendations on patient care in the last days of life&#46; These recommendations were reviewed and agreed upon by the remaining committee members&#44; and were grouped into seven blocks&#58; identification of patients&#59; the patient&#8217;s knowledge of the disease&#44; values&#44; and preferences&#59; information&#59; the patient&#8217;s needs&#59; attention and care&#59; palliative sedation&#59; and care after death&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Delphi process</span><p id="par0050" class="elsevierStylePara elsevierViewall">A total of 150 experts&#44; 125 from Spain and 25 from Portugal&#44; were invited to participate in the Delphi process &#40;Appendix B&#44; Annex 2&#44; Supplementary materials&#41;&#46; Of them&#44; 105 were internists &#40;90 Spanish and 15 Portuguese&#41;&#59; 20 were physicians in other specialties &#40;15 and 5&#41;&#59; 10 were nurses &#40;8 and 2&#41;&#59; five were patients or representatives of patient associations &#40;4 and 1&#41;&#59; five were lawyers and&#47;or bioethicists &#40;4 and 1&#41;&#59; and five were others&#44; including managers&#44; politicians&#44; and journalists &#40;4 and 1&#41;&#46;</p><p id="par0055" class="elsevierStylePara elsevierViewall">An internist was considered an expert when he or she met all of the following criteria&#58; professional practice with direct patient care for at least ten years&#44; having cared for at least 100 patients who have died in the hospital or at home&#44; and having cared for at least 10 patients who have died each year&#46; For the remaining healthcare professionals participating&#44; only ten years of professional experience was requested&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">Each participant was sent a questionnaire with 37 statements for them to quantify their degree of agreement on a scale of 1&#8211;5&#44; with 1 indicating strongly disagree&#44; 2 disagree&#44; 3 neither agree or disagree&#44; 4 agree&#44; and 5 strongly agree&#46;</p><p id="par0065" class="elsevierStylePara elsevierViewall">The Delphi process was carried out in two rounds&#46; In the second round&#44; only statements on which there was not a strong consensus or unanimity were sent&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall">Degrees of consensus and strength of the recommendations&#46; The degrees of consensus used for the recommendations are shown in <a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0105">Results of the Delphi process</span><p id="par0075" class="elsevierStylePara elsevierViewall">In the first round of the Delphi process&#44; 105 &#40;70&#37;&#41; of the 150 invited panelists responded to the questionnaire&#46; Of them&#44; 47 were men and 58 were women&#46; Respondents were between 34 and 73 years of age&#44; with a median age of 51 years&#46; Of the 37 recommendations&#44; there was strong consensus on 28 &#40;75&#46;7&#37;&#41;&#44; weak consensus on 8 &#40;21&#46;6&#37;&#41;&#44; and discrepancy on one &#40;2&#46;7&#37;&#41;&#46;</p><p id="par0080" class="elsevierStylePara elsevierViewall">In the second round&#44; 95 panelists &#40;63&#46;3&#37;&#41; answered the questionnaire&#46; In the end&#44; there was strong consensus on 33 recommendations &#40;89&#46;2&#37;&#41; and weak consensus on 4 &#40;10&#46;8&#37;&#41;&#46; The results are shown in &#40;Appendix B&#44; Table S1&#44; Supplementary material 3&#41;&#46;</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0110">Recommendations</span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0115">Identification of patients</span><p id="par0750" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0005"></elsevierMultimedia></p><p id="par0090" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0120">Rationale for the recommendation</span><p id="par0095" class="elsevierStylePara elsevierViewall">The European Council and the laws recognize the right of patients with advanced-stage diseases to receive palliative care&#46;<a class="elsevierStyleCrossRefs" href="#bib0040"><span class="elsevierStyleSup">8&#44;9</span></a> Patients with palliative care needs must be identified early&#46;<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a> However&#44; the definition of patients who should receive palliative care is not uniform&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">A systematic review has proposed considering data on the patient&#8217;s health status and the care they are provided&#46; To consider a patient as a candidate for palliative care&#44; he or she must have a progressive&#44; life-threatening disease&#59; have no possibility of achieving remission&#44; stabilization&#44; or modification of the course of the disease&#59; and the care provided must be focused on maintaining the quality of the end of life&#46;<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a></p><p id="par0105" class="elsevierStylePara elsevierViewall">Some situations point towards the need for a palliative approach to the disease&#46; They include repeated&#44; unplanned hospitalizations&#59; deterioration of performance status with limited reversibility&#59; dependence&#59; loss of weight and muscle mass&#59; persistent symptoms despite treating the underlying disease&#59; request for more help by the patient&#8217;s caregiver&#59; and desires expressed by the patient or caregiver for palliative treatment&#44; to stop treatment&#44; not to start treatment&#44; or to focus care on quality of life&#46;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">12</span></a></p><p id="par0110" class="elsevierStylePara elsevierViewall">There are different tools to identify patients who need palliative care&#44; some of which have been specifically developed for patients with cancer&#46;<a class="elsevierStyleCrossRefs" href="#bib0065"><span class="elsevierStyleSup">13&#44;14</span></a> In our setting&#44; one of the most used tools is the NECPAL scale&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> There are indices that can help establish a patient&#8217;s prognosis and&#44; based on the results&#44; orient towards a palliative approach&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#44;17</span></a><elsevierMultimedia ident="tb0010"></elsevierMultimedia></p><p id="par0120" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0125">Rationale for the recommendation</span><p id="par0125" class="elsevierStylePara elsevierViewall">According to the World Medical Association&#8217;s Declaration of Venice&#44; it is the physician&#8217;s responsibility to allow a patient to die with dignity and in comfort&#46;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">18</span></a> Therefore&#44; it is essential to identify patients whose death is expected within hours or days&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">19</span></a> This way&#44; it can be guaranteed that the patient will die according to the attributes of a so-called good death&#46;<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">20</span></a> They include death according to the patient&#8217;s wishes&#44; in comfort&#44; with organized care&#44; with true information&#44; accompanied by family&#44; and with respect for their beliefs and values&#46;</p><p id="par0130" class="elsevierStylePara elsevierViewall">Multiple scales have been developed to predict a patient&#8217;s risk of death&#46; Among the most used are the PALIAR&#59; GSF-PIG&#59; <span class="elsevierStyleItalic">Palliative Performance Scale</span>&#59; <span class="elsevierStyleItalic">Palliative Prognostic Index</span>&#59; ECOG-PS&#59; and Karnofsky&#44; CrisTAL&#44; and Walter scales&#46;<a class="elsevierStyleCrossRefs" href="#bib0085"><span class="elsevierStyleSup">17&#44;21&#8211;27</span></a></p><p id="par0135" class="elsevierStylePara elsevierViewall">Diagnosing that a patient is dying is a complex process&#46; The scales for identifying patients in their last days of life must be able to be applied quickly&#44; be based on clinical judgment and a value judgment&#44; and provide enough data to establish a prognosis&#46;<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">26</span></a> The characteristic signs of imminent death that patients present with in the last three days of life have been described&#46;<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">28</span></a><elsevierMultimedia ident="tb0015"></elsevierMultimedia></p><p id="par0145" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; weak&#46;</p></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0130">Rationale for the recommendation</span><p id="par0150" class="elsevierStylePara elsevierViewall">In addition to pain&#44; patients may experience various symptoms of discomfort when death is near&#46; Among them&#44; dyspnea&#44; dry mouth&#44; lack of appetite&#44; or difficulty sleeping can significantly worsen quality of life&#46; To guarantee that all patients&#8217; needs are attended to&#44; it is recommendable to approach them in a structured way&#46;</p><p id="par0155" class="elsevierStylePara elsevierViewall">There are instruments and scales that help comprehensively approach the different palliative care needs&#46; They include the following&#58; SPARC&#44;<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">29</span></a><span class="elsevierStyleItalic">Edmonton Symptom Assessment System</span>&#44;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">30</span></a> MD <span class="elsevierStyleItalic">Anderson Symptom Inventory&#44;</span><a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">31</span></a><span class="elsevierStyleItalic">Condensed Memorial Symptom Assessment Scale&#44;</span><a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">32</span></a> and the <span class="elsevierStyleItalic">Milford Palliative Care Assessment Tool&#46;</span><a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">33</span></a> There are Spanish and Portuguese versions available for some of them&#46; When death is near&#44; a patient&#8217;s needs may change&#46; <span class="elsevierStyleItalic">The Needs Near the End-of-Life Care Screening Tool</span><a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">34</span></a> can be used to evaluate them&#46;</p><p id="par0160" class="elsevierStylePara elsevierViewall">Some panelists stated that the scales can supplement&#44; but not substitute&#44; the clinician&#8217;s evaluation&#46;<elsevierMultimedia ident="tb0020"></elsevierMultimedia></p><p id="par0170" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0075" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0135">Rationale for the recommendation</span><p id="par0175" class="elsevierStylePara elsevierViewall">Different studies have shown that the condition of the terminal illness is only recorded on the medical history of 50&#37; of patients&#46;<a class="elsevierStyleCrossRefs" href="#bib0035"><span class="elsevierStyleSup">7&#44;35</span></a> The underecording is greater among non-oncological patients&#46;<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">35</span></a> When comparing patients with or without a record of a terminal condition on the medical chart&#44; those who had it recorded on their medical chart received opioids&#44; palliative sedation&#44; and do-not-resuscitate and discontinuation of medication orders more often&#46;<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">35</span></a></p><p id="par0180" class="elsevierStylePara elsevierViewall">The Council of Europe recommends organizing care so that it is provided by a coordinated team and following the best possible standards&#46;<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> This is not possible if there is no record of the end-of-life situation in the patient&#8217;s medical chart&#46;</p></span></span><span id="sec0080" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0140">The patient&#8217;s knowledge&#44; values&#44; and preferences</span><p id="par0755" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0025"></elsevierMultimedia></p><p id="par0190" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0030"></elsevierMultimedia></p><p id="par0200" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0085" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0145">Rationale for recommendations 5 and 6</span><p id="par0205" class="elsevierStylePara elsevierViewall">Portuguese and Spanish law recognizes the right of patients to receive detailed information on the nature of their disease&#44; the estimated prognosis&#44; and the different clinical scenarios and treatments available&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#8211;6&#44;36</span></a> Likewise&#44; they recognize the patient&#8217;s right to participate in his or her treatment plan and to accept and reject treatments&#46; These rights are recognized in medical codes of ethics&#44;<a class="elsevierStyleCrossRefs" href="#bib0185"><span class="elsevierStyleSup">37&#44;38</span></a> in the World Medical Association&#8217;s Declaration of Venice on Terminal Illnesses&#44;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">18</span></a> and in the Council of Europe recommendations on the protection of human rights and the dignity of terminally ill and dying patients&#46;<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> However&#44; communication with the patient continues to be insufficient&#46;</p><p id="par0210" class="elsevierStylePara elsevierViewall">In the UDVIMI study&#44; conducted in Spain and Argentina&#44; only 19&#46;6&#37; of terminal patients who died in the hospital knew their prognosis&#44; only 28&#37; of terminal patients were competent for decision making&#44; and only 1&#46;6&#37; had advance directives&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> In a study from the United States&#44; only 37&#37; of patients with cancer had spoken with their physician about the end of life in the four months prior to their death&#46;<a class="elsevierStyleCrossRef" href="#bib0195"><span class="elsevierStyleSup">39</span></a> Therefore&#44; it is frequent for family members to be the main receivers of information and those in charge of making decisions&#46;</p><p id="par0215" class="elsevierStylePara elsevierViewall">Some clinicians may be afraid of communicating to the patient that the advanced stage of their disease may be harmful&#46; The evidence does not support this perception&#46; In a review of good practices by the <span class="elsevierStyleItalic">American College of Physicians</span>&#44; it was observed that communication with the patient did not increase depression&#44; anxiety&#44; or lack of hope&#46;<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">40</span></a><elsevierMultimedia ident="tb0035"></elsevierMultimedia></p><p id="par0225" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0090" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0150">Rationale for the recommendation</span><p id="par0230" class="elsevierStylePara elsevierViewall">One of the problems detected in palliative and end-of-life care is insufficient recording of the patient and family members&#8217; care process&#46;<a class="elsevierStyleCrossRefs" href="#bib0035"><span class="elsevierStyleSup">7&#44;41</span></a> To guarantee good quality and continuity of care&#44; all professionals who intervene in the care process of patients with advanced-stage diseases must know their clinical&#44; emotional&#44; family&#44; and spiritual situation&#46; Therefore&#44; it is essential that these data are available and recorded on the medical chart&#46;<a class="elsevierStyleCrossRefs" href="#bib0185"><span class="elsevierStyleSup">37&#44;38&#44;42</span></a><elsevierMultimedia ident="tb0040"></elsevierMultimedia></p><p id="par0240" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; weak&#46;<elsevierMultimedia ident="tb0045"></elsevierMultimedia></p><p id="par0250" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0095" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0155">Rationale for recommendations 8 and 9</span><p id="par0255" class="elsevierStylePara elsevierViewall">Advance directives&#44; also known as a living will&#44; are instructions on healthcare and treatment that an adult&#44; freely and with sufficient capacity to do so&#44; states in advance in a document so that they will be complied with in situations in which circumstances do not allow the person express them personally&#46;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">36</span></a></p><p id="par0260" class="elsevierStylePara elsevierViewall">The right to issue advance directives is stipulated in the Oviedo Convention&#44; signed by the Council of Europe member states&#46;<a class="elsevierStyleCrossRef" href="#bib0215"><span class="elsevierStyleSup">43</span></a> Advance directives are regulated by law and there must be a national registry that stores these documents and allows for healthcare professionals to consult them&#46;<a class="elsevierStyleCrossRefs" href="#bib0180"><span class="elsevierStyleSup">36&#44;44</span></a></p><p id="par0265" class="elsevierStylePara elsevierViewall">When a patient has an advanced-stage disease and is admitted to the hospital&#44; it is likely that the clinical condition may worsen and at a certain point&#44; he or she will not be able to express their will&#46; Therefore&#44; it is recommended to consult the advance directives registry in these cases&#46; It is necessary to remember that when a patient is capable of freely expressing his or her will&#44; this must prevail over what has previously been recorded in their living will&#46;</p></span></span><span id="sec0100" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0160">Information</span><p id="par0760" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0050"></elsevierMultimedia></p><p id="par0275" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0055"></elsevierMultimedia></p><p id="par0285" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0060"></elsevierMultimedia></p><p id="par0295" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0065"></elsevierMultimedia></p><p id="par0305" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0105" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0165">Rationale for recommendations 10&#8211;13</span><p id="par0310" class="elsevierStylePara elsevierViewall">The rights to information and to confidentiality and privacy are stipulated in Spanish and Portuguese law<a class="elsevierStyleCrossRefs" href="#bib0180"><span class="elsevierStyleSup">36&#44;45</span></a> and are individual rights&#46; Therefore&#44; only the patient can authorize or limit to whom information on their condition is given&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a> The right to information can only be circumvented in some cases stipulated in the law&#44; such as the patient&#8217;s disability or therapeutic need&#46; The information contained in the advanced directives document is also subject to the duty of confidentiality&#46;<a class="elsevierStyleCrossRef" href="#bib0220"><span class="elsevierStyleSup">44</span></a></p><p id="par0315" class="elsevierStylePara elsevierViewall">The Patient Autonomy Law establishes that it is obligatory to record the information provided to patients in the medical record&#46;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">36</span></a> Other laws ratify this right in the dying process&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a> In addition&#44; it is obligatory to provide information while upholding privacy&#46;<a class="elsevierStyleCrossRefs" href="#bib0180"><span class="elsevierStyleSup">36&#44;45</span></a></p><p id="par0320" class="elsevierStylePara elsevierViewall">Being accompanied by family members&#44; caregivers&#44; and loved ones is one of the principles of a good death&#46; Therefore&#44; it is essential that not only the patient but also his or her family members know that the end of life is near&#46; This is recognized in the quality standards of the <span class="elsevierStyleItalic">National Institute for Health Care and Excellence</span>&#46;<a class="elsevierStyleCrossRef" href="#bib0230"><span class="elsevierStyleSup">46</span></a><elsevierMultimedia ident="tb0070"></elsevierMultimedia></p><p id="par0330" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0110" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0170">Rationale for the recommendation</span><p id="par0335" class="elsevierStylePara elsevierViewall">To guarantee respect for confidentiality and privacy when providing information&#44; it is necessary for there to be adequate spaces to do so&#46; Likewise&#44; the duty to provide information will be considered another clinical activity of professionals&#46; They will have enough time to do so with the appropriate rigor and calm&#46;</p></span></span><span id="sec0115" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0175">The patient&#8217;s needs</span><p id="par0765" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0075"></elsevierMultimedia></p><p id="par0345" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong consensus&#46;</p><span id="sec0120" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0180">Rationale for the recommendation</span><p id="par0350" class="elsevierStylePara elsevierViewall">Medical ethics codes stipulate the duty of recording all patient data necessary for facilitating care in the medical chart&#46;<a class="elsevierStyleCrossRefs" href="#bib0185"><span class="elsevierStyleSup">37&#44;38</span></a> In addition&#44; the annotations must be made as soon as possible and the patient&#8217;s medical record must be available at all times during their hospital stay&#46;<a class="elsevierStyleCrossRef" href="#bib0235"><span class="elsevierStyleSup">47</span></a><elsevierMultimedia ident="tb0080"></elsevierMultimedia></p><p id="par0360" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0125" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0185">Rationale for the recommendation</span><p id="par0365" class="elsevierStylePara elsevierViewall">To guarantee optimal palliative care at the end of life&#44; it is necessary for healthcare professionals to be trained and have readily accessible clinical practice guidelines according to their functions&#46;</p><p id="par0370" class="elsevierStylePara elsevierViewall">This recommendation is stipulated in the quality standards for end-of-life care from the <span class="elsevierStyleItalic">Irish Hospice Foundation&#46;</span><a class="elsevierStyleCrossRef" href="#bib0240"><span class="elsevierStyleSup">48</span></a> It has been observed that the implementation of these protocols allows for detecting areas for improvement in quality and missed opportunities in patients who die in the hospital&#46;<a class="elsevierStyleCrossRef" href="#bib0245"><span class="elsevierStyleSup">49</span></a><elsevierMultimedia ident="tb0085"></elsevierMultimedia></p><p id="par0380" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0090"></elsevierMultimedia></p><p id="par0390" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0130" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0190">Rationale for recommendations 17 and 18</span><p id="par0395" class="elsevierStylePara elsevierViewall">Laws on the rights and guarantees of a person&#8217;s dignity in the death process stipulate that it is obligatory to share decisions to limit treatment efforts among the various medical and nursing professionals&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a> This recommendation is also stipulated in the clinical practice guidelines of the <span class="elsevierStyleItalic">National Coalition for Hospice and Palliative Care&#46;</span><a class="elsevierStyleCrossRef" href="#bib0250"><span class="elsevierStyleSup">50</span></a></p><p id="par0400" class="elsevierStylePara elsevierViewall">Spanish autonomous community laws also establish that it is healthcare professionals&#8217; duty to maintain the records in the medical chart&#46; In addition&#44; it is necessary to record the identity and opinion of the professionals who make the decision to limit therapeutic efforts&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a><elsevierMultimedia ident="tb0095"></elsevierMultimedia></p><p id="par0410" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0135" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0195">Rationale for the recommendation</span><p id="par0415" class="elsevierStylePara elsevierViewall">A systematic review that included more than one million patients in 38 studies across 10 countries found that 33&#37;&#8211;38&#37; of patients received some treatment that was not beneficial at the end of their life and that 33&#37;&#8211;50&#37; of patients with do-not-resuscitate orders had diagnostic tests performed that were of no benefit&#46;<a class="elsevierStyleCrossRef" href="#bib0255"><span class="elsevierStyleSup">51</span></a></p><p id="par0420" class="elsevierStylePara elsevierViewall">Avoiding obstinacy by not performing therapeutic actions and futile diagnostic tests&#44; is a duty of healthcare professionals stipulated in the laws<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a> and professional codes of ethics&#46;<a class="elsevierStyleCrossRefs" href="#bib0185"><span class="elsevierStyleSup">37&#44;38</span></a> To facilitate not providing futile treatments&#44; measures have been proposed that include training physicians who care for patients at the end of life&#44; educating the population on the limits of medicine and the need to plan for death&#44; as well as reforms in the hospital setting&#46;<a class="elsevierStyleCrossRef" href="#bib0260"><span class="elsevierStyleSup">52</span></a><elsevierMultimedia ident="tb0100"></elsevierMultimedia></p><p id="par0430" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0140" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0200">Rationale for the recommendation</span><p id="par0435" class="elsevierStylePara elsevierViewall">It is necessary to differentiate between a cardiac arrest&#44; that is a sudden occurrence in a patient who is relatively stable&#44; and death understood as the end of a progressive&#44; irreversible process of decline&#46;<a class="elsevierStyleCrossRef" href="#bib0265"><span class="elsevierStyleSup">53</span></a> Whereas in the first case&#44; resuscitation may be justified&#44; in the second&#44; it is necessary to accept that we are at the end of life and that resuscitation would be a futile maneuver&#46;</p><p id="par0440" class="elsevierStylePara elsevierViewall">There is still a great deal of variability in the adoption of do-not-resuscitate orders&#44; and on the consensus on them with the patient and family&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">54</span></a> However&#44; the adoption of these decisions in patients at the end of life has been associated with a lower number of admissions to intensive care units and greater quality of life in the last week of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">55&#44;56</span></a></p><p id="par0445" class="elsevierStylePara elsevierViewall">In addition&#44; in patients with cancer&#44; when a do-not-resuscitate order was signed by the patient&#44; higher quality of care at the end of life and a higher score on good death scales were observed&#46;<a class="elsevierStyleCrossRef" href="#bib0285"><span class="elsevierStyleSup">57</span></a><elsevierMultimedia ident="tb0105"></elsevierMultimedia></p><p id="par0455" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0145" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0205">Rationale for the recommendation</span><p id="par0460" class="elsevierStylePara elsevierViewall">The Parliamentary Assembly of the Council of Europe has recognized the need for providing emotional&#44; psychological&#44; and spiritual support to patients and their family members as part of quality palliative care&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">58</span></a></p><p id="par0465" class="elsevierStylePara elsevierViewall">Spanish and Portuguese law recognizes spiritual and religious support as a right and an integral part of palliative care&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#8211;6</span></a> People of different religious faiths who gathered for the PAL-LIFE <span class="elsevierStyleItalic">Expert Advisory Group of the Pontifical Academy for Life</span> have made the same recommendation&#46;<a class="elsevierStyleCrossRef" href="#bib0295"><span class="elsevierStyleSup">59</span></a> In a systematic review&#44; Oliver et al&#46; have identified various tools for evaluating spiritual needs at the end of life&#46;<a class="elsevierStyleCrossRef" href="#bib0300"><span class="elsevierStyleSup">60</span></a></p></span></span><span id="sec0150" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0210">Attention and care</span><p id="par0770" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0110"></elsevierMultimedia></p><p id="par0475" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0155" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0215">Rationale for the recommendation</span><p id="par0480" class="elsevierStylePara elsevierViewall">A sufficiently private setting is necessary to guarantee privacy and confidentiality in the last days of life&#46; Individual rooms provide this space&#46; In addition&#44; some laws stipulate this guarantee&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a></p><p id="par0485" class="elsevierStylePara elsevierViewall">Due to limitations in the number of rooms and certain healthcare circumstances&#44; it is sometimes not possible to care for patients in their last days of life in individual rooms in many hospitals&#46; However&#44; hospitals must make every possible effort to guarantee sufficient privacy&#46;<elsevierMultimedia ident="tb0115"></elsevierMultimedia></p><p id="par0495" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0160" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0220">Rationale for the recommendation</span><p id="par0500" class="elsevierStylePara elsevierViewall">In a study conducted in the United States&#44; the presence of family during death was&#44; after absence of pain and being at peace with God&#44; the most highly valued aspect by patients&#46; For family members&#44; physicians&#44; and other caregivers&#44; it was the most important aspect after pain control&#46;<a class="elsevierStyleCrossRef" href="#bib0305"><span class="elsevierStyleSup">61</span></a></p><p id="par0505" class="elsevierStylePara elsevierViewall">The care and company of family is considered one of the attributes of a good death&#46;<a class="elsevierStyleCrossRef" href="#bib0310"><span class="elsevierStyleSup">62</span></a> The law recognizes the right to be accompanied by family in the dying process and death&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a><elsevierMultimedia ident="tb0120"></elsevierMultimedia></p><p id="par0515" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;<elsevierMultimedia ident="tb0125"></elsevierMultimedia></p><p id="par0525" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0165" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0225">Rationale for recommendations 24 and 25</span><p id="par0530" class="elsevierStylePara elsevierViewall">In the last days of life&#44; nursing team members are the healthcare professionals who are closest to the patient and family&#46; In addition&#44; they are in charge of evaluating patients&#8217; needs and guaranteeing their well-being&#46; Therefore&#44; it is essential for each patient to have an individualized care plan that is adapted to their preferences and personal wishes&#46;<a class="elsevierStyleCrossRef" href="#bib0315"><span class="elsevierStyleSup">63</span></a></p><p id="par0535" class="elsevierStylePara elsevierViewall">The Spanish Society of Palliative Care&#8217;s nursing care guidelines include the most frequent needs and appropriate plans for addressing them&#46;<a class="elsevierStyleCrossRef" href="#bib0320"><span class="elsevierStyleSup">64</span></a><elsevierMultimedia ident="tb0130"></elsevierMultimedia></p><p id="par0545" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0170" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0230">Rationale for the recommendation</span><p id="par0550" class="elsevierStylePara elsevierViewall">End-of-life care&#44; like palliative care&#44; cannot be divided or interrupted&#46; Our recommendation is in accordance with the <span class="elsevierStyleItalic">National Palliative and End of Life Care Partnership</span>&#44; one of whose ambitions is for care to be coordinated by a team and provided 24&#8239;h a day&#44; seven days a week&#46;<a class="elsevierStyleCrossRef" href="#bib0325"><span class="elsevierStyleSup">65</span></a><elsevierMultimedia ident="tb0135"></elsevierMultimedia></p><p id="par0560" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0175" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0235">Rationale for the recommendation</span><p id="par0565" class="elsevierStylePara elsevierViewall">The justification is the same as for recommendation 21&#46;</p></span></span><span id="sec0180" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0240">Palliative sedation</span><p id="par0775" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0140"></elsevierMultimedia></p><p id="par0575" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0185" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0245">Rationale for the recommendation</span><p id="par0580" class="elsevierStylePara elsevierViewall">When all reasonable means within our reach have been provided and it has not been possible to control the symptoms of patients in their last days of life in irreversible condition&#44; the option of palliative sedation must be considered&#46; This is recognized by the <span class="elsevierStyleItalic">National Hospice and Palliative Care Organization&#46;</span><a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">66</span></a> The right of patients with a terminal illness or who are dying with refractory suffering to receive palliative sedation is recognized in the law and professional codes&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#8211;6&#44;37</span></a><elsevierMultimedia ident="tb0145"></elsevierMultimedia></p><p id="par0590" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0190" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0250">Rationale for the recommendation</span><p id="par0595" class="elsevierStylePara elsevierViewall">In palliative care&#44; all decisions must be made jointly with the patient&#46; In the case of palliative sedation at the end of life&#44; a process with irreversible consequences&#44; the final decision must always be made by the patient if he or she is mentally competent&#46; However&#44; a recent multicenter study on palliative sedation at the end of life showed that only one of every three patients is competent for decision making&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">67</span></a> Therefore&#44; the clinician must guarantee that their directives are followed by consulting previous instructions&#44; whether expressed in a living will or directly to family members&#46;<elsevierMultimedia ident="tb0150"></elsevierMultimedia></p><p id="par0605" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong consensus&#46;</p></span><span id="sec0195" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0255">Rationale for the recommendation</span><p id="par0610" class="elsevierStylePara elsevierViewall">Before giving palliative sedation&#44; it is necessary to confirm if the patient has symptoms refractory to treatment&#46; Therefore&#44; palliative care societies recommend that a multidisciplinary evaluation be made before deciding to administer sedation&#46;<a class="elsevierStyleCrossRefs" href="#bib0330"><span class="elsevierStyleSup">66&#44;68</span></a><elsevierMultimedia ident="tb0155"></elsevierMultimedia></p><p id="par0620" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong consensus&#46;</p></span><span id="sec0200" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0260">Rationale for the recommendation</span><p id="par0625" class="elsevierStylePara elsevierViewall">Palliative sedation cannot be administered indiscriminately or injudiciously&#46; American and European palliative care societies have developed recommendations on the administration of palliative sedation&#46;<a class="elsevierStyleCrossRefs" href="#bib0330"><span class="elsevierStyleSup">66&#44;68</span></a></p><p id="par0630" class="elsevierStylePara elsevierViewall">The departments that care for patients in their last days of life must have protocols for palliative sedation&#46; This would allow for uniformity in its administration and would facilitate auditing&#46;<elsevierMultimedia ident="tb0160"></elsevierMultimedia></p><p id="par0640" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0205" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0265">Rationale for the recommendation</span><p id="par0645" class="elsevierStylePara elsevierViewall">All of these aspects are included in the documents on palliative care from the European Society and American Society of Palliative Care&#46;<a class="elsevierStyleCrossRefs" href="#bib0330"><span class="elsevierStyleSup">66&#44;68</span></a><elsevierMultimedia ident="tb0165"></elsevierMultimedia></p><p id="par0655" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0210" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0270">Rationale for the recommendation</span><p id="par0660" class="elsevierStylePara elsevierViewall">The UDVIMI study reported that the level of palliative sedation was only monitored using a scale in 16&#46;9&#37; of patients&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">67</span></a> The <span class="elsevierStyleItalic">National Hospice and Palliative Care Organization</span> recommends that sedation be carefully controlled and proportionally titrated in order to achieve alleviation of symptoms and sedation scales be used for this&#46;<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">66</span></a></p><p id="par0665" class="elsevierStylePara elsevierViewall">Given its simplicity&#44; we recommend using the Ramsay Sedation scale&#44; although other scales such as the Richmond Agitation-Sedation Scale can also be useful&#46;<a class="elsevierStyleCrossRefs" href="#bib0345"><span class="elsevierStyleSup">69&#44;70</span></a><elsevierMultimedia ident="tb0170"></elsevierMultimedia></p><p id="par0675" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p></span><span id="sec0215" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0275">Rationale for the recommendation</span><p id="par0680" class="elsevierStylePara elsevierViewall">The convenience and obligatory nature of recording all circumstances of end-of-life care in the medical chart have already been included in previous recommendations&#46; However&#44; the UDVIMI study showed that the level of recording in medical charts leaves room for improvement&#46;<a class="elsevierStyleCrossRefs" href="#bib0035"><span class="elsevierStyleSup">7&#44;67</span></a></p></span></span><span id="sec0220" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0280">Care after death</span><p id="par0780" class="elsevierStylePara elsevierViewall"><elsevierMultimedia ident="tb0175"></elsevierMultimedia></p><p id="par0690" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; strong&#46;</p><span id="sec0225" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0285">Rationale for the recommendation</span><p id="par0695" class="elsevierStylePara elsevierViewall">The duty of preserving an individual&#8217;s dignity continues to exist after death has occurred&#46; To guarantee dignified treatment of the now-deceased person&#8217;s cadaver&#44; a care protocol is recommended&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">71</span></a> The guide from the <span class="elsevierStyleItalic">National Nurse Consultant Group</span> can be useful for developing one&#46;<a class="elsevierStyleCrossRef" href="#bib0360"><span class="elsevierStyleSup">72</span></a><elsevierMultimedia ident="tb0180"></elsevierMultimedia></p><p id="par0705" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; weak&#46;<elsevierMultimedia ident="tb0185"></elsevierMultimedia></p><p id="par0715" class="elsevierStylePara elsevierViewall">Degree of recommendation&#58; weak&#46;</p></span><span id="sec0230" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0290">Rationale for recommendations 36 and 37</span><p id="par0720" class="elsevierStylePara elsevierViewall">Death is an irreversible loss and always entails feelings of grief in the deceased person&#8217;s family members and next of kin&#46; Healthcare professionals must respect this reaction to the death&#46; It is advisable to facilitate the greatest possible amount of privacy&#44; accompany them until other family members arrive&#44; and provide an opportunity for saying goodbye to the deceased person&#46;</p><p id="par0725" class="elsevierStylePara elsevierViewall">Spanish law stipulates that healthcare centers must guarantee care for the grief of family members and caregivers as well as promote the prevention of complicated grief&#46;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a></p><p id="par0730" class="elsevierStylePara elsevierViewall">There are factors prior to the death&#44; such as previous losses&#44; exposure to trauma&#44; psychiatric medical history&#44; type of bond&#44; and the relationship with the deceased&#44; which predict the onset of complicated grief&#46; Violent death&#44; the quality of care&#44; the experience of death&#44; relationship with the deceased&#44; spousal closeness and dependence&#44; and lack of preparation before the death have also been associated with complicated grief&#46;<a class="elsevierStyleCrossRef" href="#bib0365"><span class="elsevierStyleSup">73</span></a></p></span></span></span><span id="sec0235" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0295">Conflicts of interest</span><p id="par0735" class="elsevierStylePara elsevierViewall">The authors declare that they do not have any conflicts of interest&#46;</p></span></span>"
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          "identificador" => "xres1447741"
          "titulo" => "Abstract"
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            0 => array:2 [
              "identificador" => "abst0005"
              "titulo" => "Aim"
            ]
            1 => array:2 [
              "identificador" => "abst0010"
              "titulo" => "Methods"
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            2 => array:2 [
              "identificador" => "abst0015"
              "titulo" => "Results"
            ]
            3 => array:2 [
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                  "titulo" => "Rationale for recommendations 36 and 37"
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          "titulo" => "Conflicts of interest"
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          "titulo" => "References"
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      ]
    ]
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    "tienePdf" => true
    "fechaRecibido" => "2020-04-21"
    "fechaAceptado" => "2020-04-28"
    "PalabrasClave" => array:2 [
      "en" => array:1 [
        0 => array:4 [
          "clase" => "keyword"
          "titulo" => "Keywords"
          "identificador" => "xpalclavsec1320601"
          "palabras" => array:4 [
            0 => "End-of-life care"
            1 => "Guideline"
            2 => "Consensus"
            3 => "Best practice"
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      "es" => array:1 [
        0 => array:4 [
          "clase" => "keyword"
          "titulo" => "Palabras clave"
          "identificador" => "xpalclavsec1320600"
          "palabras" => array:4 [
            0 => "Cuidados al final de la vida"
            1 => "Gu&#237;a de pr&#225;ctica cl&#237;nica"
            2 => "Consenso"
            3 => "Buenas pr&#225;cticas"
          ]
        ]
      ]
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    "resumen" => array:2 [
      "en" => array:3 [
        "titulo" => "Abstract"
        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Aim</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">To develop consensus recommendations about good clinical practice rules for caring end-of-life patients&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Methods</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">A steering committee of 12 Spanish and Portuguese experts proposed 37 recommendations&#46; A two rounds Delphi method was performed&#44; with participation of 105 panelists including internists&#44; other clinicians&#44; nurses&#44; patients&#44; lawyers&#44; bioethicians&#44; health managers&#44; politicians and journalists&#46; We sent a questionnaire with 5 Likert-type answers for each recommendation&#46; Strong consensus was defined when &#62;95&#37; answers were completely agree or &#62;90&#37; were agree or completely agree&#59; and weak consensus when &#62;90&#37; answers were completely agree or &#62;80&#37; were agree or completely agree&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Results</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">The panel addressed 7 specific areas for 37 recommendations spanning&#58; identification of patients&#59; knowledge of the disease&#44; values and preferences of the patient&#59; information&#59; patient&#8217;s needs&#59; support and care&#59; palliative sedation&#44; and after death care&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusions</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">The panel formulated and provided the rationale for recommendations on good clinical practice rules for caring end-of-life patients&#46;</p></span>"
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            "identificador" => "abst0015"
            "titulo" => "Results"
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            "identificador" => "abst0020"
            "titulo" => "Conclusions"
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      "es" => array:3 [
        "titulo" => "Resumen"
        "resumen" => "<span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Objetivo</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Establecer recomendaciones de consenso sobre normas de buena pr&#225;ctica cl&#237;nica en la atenci&#243;n a los pacientes al final de la vida&#46;</p></span> <span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">M&#233;todos</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Un comit&#233; de 12 expertos espa&#241;oles y portugueses propuso 37 recomendaciones&#46; Se realiz&#243; un Proceso Delphi a dos rondas&#44; con participaci&#243;n de 105 panelistas incluyendo internistas&#44; otros m&#233;dicos cl&#237;nicos&#44; enfermeras&#44; enfermos&#44; juristas&#44; expertos en bio&#233;tica&#44; gestores sanitarios&#44; pol&#237;ticos y periodistas&#46; Para cada recomendaci&#243;n se envi&#243; un cuestionario con cinco respuestas tipo Likert&#46; Se defini&#243; consenso fuerte cuando&#8239;&#62;&#8239;95&#37; de las respuestas estaban totalmente de acuerdo o&#8239;&#62;&#8239;90&#37; estaban de acuerdo y totalmente de acuerdo&#59; consenso d&#233;bil cuando&#8239;&#62;&#8239;90&#37; estaban totalmente de acuerdo o&#8239;&#62;&#8239;80&#37; estaban de acuerdo y totalmente de acuerdo&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Resultados</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">El panel abord&#243; siete &#225;reas espec&#237;ficas con 37 recomendaciones que abarcaban&#58; Identificaci&#243;n de los pacientes&#59; Conocimiento&#44; valores y preferencias del paciente&#59; Informaci&#243;n&#59; Necesidades del paciente&#59; Atenci&#243;n y cuidados&#59; Sedaci&#243;n paliativa y Atenci&#243;n tras la muerte&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusiones</span><p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Un Proceso Delphi con participaci&#243;n multidisciplinar ha permitido establecer normas de buena pr&#225;ctica cl&#237;nica en la atenci&#243;n al final de la vida con consenso de enfermos&#44; agentes sociales y profesionales sanitarios&#46;</p></span>"
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          2 => array:2 [
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            "titulo" => "Resultados"
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      0 => array:2 [
        "etiqueta" => "&#9734;"
        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; D&#237;ez-Manglano J&#44; S&#225;nchez Mu&#241;oz L&#193;&#44; Garc&#237;a Fenoll R&#44; Freire E&#44; Isasi de Isasmendi P&#233;rez S&#44; Carneiro AH&#44; et al&#46; Gu&#237;a de pr&#225;ctica cl&#237;nica de consenso sobre buenas pr&#225;cticas en los cuidados al final de la vida de las Sociedades Espa&#241;ola y Portuguesa de Medicina Interna&#46; Rev Clin Esp&#46; 2021&#59;221&#58;33&#8211;44&#46;</p>"
      ]
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            "apendice" => "<p id="par0745" class="elsevierStylePara elsevierViewall">The following are Supplementary data to this article&#58;<elsevierMultimedia ident="upi0005"></elsevierMultimedia><elsevierMultimedia ident="upi0010"></elsevierMultimedia><elsevierMultimedia ident="upi0015"></elsevierMultimedia></p>"
            "etiqueta" => "Appendix A"
            "titulo" => "Supplementary data"
            "identificador" => "sec0245"
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        ]
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                  <table border="0" frame="\n
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                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Degrees of consensus&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Unanimity&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">100&#37; strongly agree&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Strong consensus&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">&#62;95&#37; strongly agree or &#62;90&#37; agree and strongly agree&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Weak consensus&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">&#62;90&#37; completely agree or &#62;80&#37; agree and completely agree&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Discrepancy&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Results not included in the other options&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Weak disagreement against&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">&#62;90&#37; strongly disagree or &#62;80&#37; disagree and strongly disagree&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Strong consensus against&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">&#62;95&#37; strongly disagree or &#62;90&#37; disagree and strongly disagree&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">Unanimity against&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">100&#37; strongly disagree&nbsp;\t\t\t\t\t\t\n
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          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0085" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 1&#46;</span> The palliative care needs of each patient must be evaluated at the time of admission and repeatedly during hospitalization&#46;</p></span>"
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          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0115" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 2&#46;</span> At admission and repeatedly during hospitalization&#44; patients who are in their last days of life must be identified&#46;</p></span>"
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        "mostrarDisplay" => true
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          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0140" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 3&#46;</span> It is recommendable to use validated instruments and scales to evaluate palliative care needs and identify patients in their last days of life&#46;</p></span>"
        ]
      ]
      7 => array:5 [
        "identificador" => "tb0020"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0165" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 4&#46;</span> The condition of a patient who requires care or who is the last days of life must be recorded on the medical record&#46;</p></span>"
        ]
      ]
      8 => array:5 [
        "identificador" => "tb0025"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0185" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 5&#46;</span> It is necessary to evaluate knowledge of the disease and explore the values and preferences of patients with advanced-stage diseases who are admitted to the hospital&#46;</p></span>"
        ]
      ]
      9 => array:5 [
        "identificador" => "tb0030"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0195" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 6&#46;</span> It is necessary to evaluate knowledge of the disease and explore the values and preferences of the family members of patients with advanced-stage diseases who are admitted to the hospital&#46;</p></span>"
        ]
      ]
      10 => array:5 [
        "identificador" => "tb0035"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0220" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 7&#46;</span> It is necessary to record the knowledge of the disease&#44; values&#44; and preferences of patients with advanced-stage diseases who are admitted to the hospital and of their family members on the medical record&#46;</p></span>"
        ]
      ]
      11 => array:5 [
        "identificador" => "tb0040"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0235" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 8&#46;</span> It is necessary to consult the advance directives registry when a patient with an advanced-stage disease is admitted to the hospital&#46;</p></span>"
        ]
      ]
      12 => array:5 [
        "identificador" => "tb0045"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0245" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 9&#46;</span> When a patient who is in his or her last days of life is identified and cannot express his or her will&#44; it is necessary to consult the advance directives registry&#46;</p></span>"
        ]
      ]
      13 => array:5 [
        "identificador" => "tb0050"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0270" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 10&#46;</span> The family and caregivers of patients in their last days of life will be informed of a situation in which the patient is close to death&#46;</p></span>"
        ]
      ]
      14 => array:5 [
        "identificador" => "tb0055"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0280" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 11&#46;</span> It is essential to know the limits of confidentiality established by the patient during his or her last days of life&#46;</p></span>"
        ]
      ]
      15 => array:5 [
        "identificador" => "tb0060"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0290" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 12&#46;</span> The process of informing the patient and their family members must be recorded on the medical chart&#46;</p></span>"
        ]
      ]
      16 => array:5 [
        "identificador" => "tb0065"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0300" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 13&#46;</span> Information will be provided to the patient and family members while maintaining privacy&#46;</p></span>"
        ]
      ]
      17 => array:5 [
        "identificador" => "tb0070"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0325" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 14&#46;</span> Departments will have an information office and communicate with the patient and family members in appropriate time frames&#46;</p></span>"
        ]
      ]
      18 => array:5 [
        "identificador" => "tb0075"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0340" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 15&#46;</span> It is necessary to systematically evaluate and record the presence of symptoms and their degree of control in the medical record of patients in their last days of life&#46;</p></span>"
        ]
      ]
      19 => array:5 [
        "identificador" => "tb0080"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0355" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 16&#46;</span> All departments must have up-to-date clinical recommendations on palliative treatment and treatment in the last days of life oriented toward comfort and control of symptoms&#46;</p></span>"
        ]
      ]
      20 => array:5 [
        "identificador" => "tb0085"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0375" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 17&#46;</span> The adaptation of the treatment plan to the patient&#8217;s current condition and the limitation of therapeutic efforts must be shared by the care team and agreed upon with the patient and&#47;or his or her family&#46;</p></span>"
        ]
      ]
      21 => array:5 [
        "identificador" => "tb0090"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0385" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 18&#46;</span> The adaptation of the treatment plan to the patient&#8217;s current situation and the limitation of therapeutic efforts will be recorded and justified in the medical chart&#46;</p></span>"
        ]
      ]
      22 => array:5 [
        "identificador" => "tb0095"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0405" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 19&#46;</span> All examinations and diagnostic procedures that to not contribute to a patient&#8217;s well-being will be avoided in the last days of the patient&#8217;s life&#46;</p></span>"
        ]
      ]
      23 => array:5 [
        "identificador" => "tb0100"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0425" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 20&#46;</span> The benefits of do-not-resuscitate orders will be evaluated in patients in their last days of life and recorded in the medical chart&#46;</p></span>"
        ]
      ]
      24 => array:5 [
        "identificador" => "tb0105"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0450" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 21&#46;</span> The spiritual needs of the patient and his or her family will be evaluated in the last days of life&#46;</p></span>"
        ]
      ]
      25 => array:5 [
        "identificador" => "tb0110"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0470" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 22&#46;</span> Patients in their last days of life will preferably be cared for in an individual room&#46;</p></span>"
        ]
      ]
      26 => array:5 [
        "identificador" => "tb0115"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0490" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 23&#46;</span> Accompaniment by a patient&#8217;s family will be facilitated in the last days of life&#46;</p></span>"
        ]
      ]
      27 => array:5 [
        "identificador" => "tb0120"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0510" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 24&#46;</span> All patients in their last days of life must have a nursing care plan&#46;</p></span>"
        ]
      ]
      28 => array:5 [
        "identificador" => "tb0125"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0520" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 25&#46;</span> The nursing care plan will include&#44; at minimum&#58; care of the skin&#44; mouth&#44; nutrition&#44; elimination&#44; breathing pattern&#44; rest&#44; and management of pain and other symptoms of the terminal illness&#46;</p></span>"
        ]
      ]
      29 => array:5 [
        "identificador" => "tb0130"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0540" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 26&#46;</span> Structured communication on transitions in care &#40;on-call shifts&#44; shift changes&#44; weekends&#44; holidays&#41; will be provided to patients in their last days of life&#46;</p></span>"
        ]
      ]
      30 => array:5 [
        "identificador" => "tb0135"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0555" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 27&#46;</span> Access to religious and psychological care for the family and the family will be facilitated for patients in their last days of life&#46;</p></span>"
        ]
      ]
      31 => array:5 [
        "identificador" => "tb0140"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0570" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 28&#46;</span> The need for palliative sedation will be evaluated for patients in their last days of life with refractory symptoms&#46;</p></span>"
        ]
      ]
      32 => array:5 [
        "identificador" => "tb0145"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0585" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 29&#46;</span> The patient will grant explicit consent for palliative sedation either verbally or in a written document&#46; If the patient is not competent&#44; and acting in this order&#44; the advance directives registry will be consulted&#59; the wishes previously expressed by the patient and his or her family or next of kin will be evaluated&#59; and&#44; if these are not available&#44; sedation will be agreed upon with the family and always recorded in the medical chart&#46;</p></span>"
        ]
      ]
      33 => array:5 [
        "identificador" => "tb0150"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0600" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 30&#46;</span> The indication of palliative sedation must be deliberated by the treatment team&#46;</p></span>"
        ]
      ]
      34 => array:5 [
        "identificador" => "tb0155"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0615" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 31&#46;</span> All departments must have a palliative sedation protocol&#46;</p></span>"
        ]
      ]
      35 => array:5 [
        "identificador" => "tb0160"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0635" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 32&#46;</span> The clinical orientation guidelines for palliative sedation will include the indications&#59; refractory symptoms to be alleviated&#59; drugs&#59; induction&#44; maintenance&#44; and rescue doses&#44; and monitoring of the level of sedation&#46;</p></span>"
        ]
      ]
      36 => array:5 [
        "identificador" => "tb0165"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0650" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 33&#46;</span> To monitor the level of sedation&#44; the Ramsay scale or another similar scale will be used&#46;</p></span>"
        ]
      ]
      37 => array:5 [
        "identificador" => "tb0170"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0670" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 34&#46;</span> All circumstances that surround palliative sedation will be recorded in the medical record&#46;</p></span>"
        ]
      ]
      38 => array:5 [
        "identificador" => "tb0175"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0685" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 35&#46;</span> All departments will have a <span class="elsevierStyleItalic">post mortem</span> care protocol for the cadaver&#46;</p></span>"
        ]
      ]
      39 => array:5 [
        "identificador" => "tb0180"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0700" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 36&#46;</span> After the patient&#8217;s death&#44; care for the family members&#8217; immediate grief will be provided&#46;</p></span>"
        ]
      ]
      40 => array:5 [
        "identificador" => "tb0185"
        "tipo" => "MULTIMEDIATEXTO"
        "mostrarFloat" => false
        "mostrarDisplay" => true
        "texto" => array:1 [
          "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0710" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleBold">Recommendation 37&#46;</span> Before and after the death&#44; situations in which there is risk of complicated grief will be identified and referred&#46;</p></span>"
        ]
      ]
    ]
    "bibliografia" => array:2 [
      "titulo" => "References"
      "seccion" => array:1 [
        0 => array:2 [
          "identificador" => "bibs0005"
          "bibliografiaReferencia" => array:73 [
            0 => array:3 [
              "identificador" => "bib0005"
              "etiqueta" => "1"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "La edad de los pacientes atendidos en los servicios de medicina interna en Espa&#241;a&#58; una perspectiva de 20 a&#241;os"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "J&#46; Casademont"
                            1 => "E&#46; Francia"
                            2 => "O&#46; Torres"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.medcli.2011.04.020"
                      "Revista" => array:5 [
                        "tituloSerie" => "Med Clin &#40;Barc&#41;"
                        "fecha" => "2012"
                        "volumen" => "138"
                        "paginaInicial" => "289"
                        "paginaFinal" => "292"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            1 => array:3 [
              "identificador" => "bib0010"
              "etiqueta" => "2"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Rede de referencia&#231;ao hospitalar"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "Rep&#250;blica Portuguesa Sa&#250;de"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:2 [
                    0 => array:1 [
                      "Revista" => array:2 [
                        "tituloSerie" => "Medicina Interna"
                        "fecha" => "2018"
                      ]
                    ]
                    1 => array:1 [
                      "WWW" => array:1 [
                        "link" => "https&#58;&#47;&#47;www&#46;sns&#46;gov&#46;pt&#47;wp-content&#47;uploads&#47;2018&#47;01&#47;RRH-Medicina-Interna-Para-CP-21-12-2017&#46;pdf"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            2 => array:3 [
              "identificador" => "bib0015"
              "etiqueta" => "3"
              "referencia" => array:1 [
                0 => array:1 [
                  "referenciaCompleta" => "Ministerio de Sanidad&#44; Consumo y Bienestar Social&#46; Portal estad&#237;stico&#46; Registro de actividad de atenci&#243;n especializada&#46; Conjunto M&#237;nimo B&#225;sico de Datos&#8211;Hospitalizaci&#243;n &#40;CMBD-H&#41;&#46; Available from&#58; <a target="_blank" href="https://pestadistico.inteligenciadegestion.mscbs.es/publicoSNS/Comun/ArbolNodos.aspx?idNodo=6383">https&#58;&#47;&#47;pestadistico&#46;inteligenciadegestion&#46;mscbs&#46;es&#47;publicoSNS&#47;Comun&#47;ArbolNodos&#46;aspx&#63;idNodo&#61;6383</a>&#46;"
                ]
              ]
            ]
            3 => array:3 [
              "identificador" => "bib0020"
              "etiqueta" => "4"
              "referencia" => array:1 [
                0 => array:1 [
                  "referenciaCompleta" => "Ley 2&#47;2010&#44; de 8 de abril&#44; de Derechos y Garant&#237;as de la Dignidad de la Persona en el Proceso de la Muerte&#46; Bolet&#237;n Oficial de la Junta de Andaluc&#237;a&#44; Hist&#243;rico del BOJA&#46; 2010&#46; Available from&#58; <a target="_blank" href="http://www.juntadeandalucia.es/boja/2010/88/1">http&#58;&#47;&#47;www&#46;juntadeandalucia&#46;es&#47;boja&#47;2010&#47;88&#47;1</a>&#46;"
                ]
              ]
            ]
            4 => array:3 [
              "identificador" => "bib0025"
              "etiqueta" => "5"
              "referencia" => array:1 [
                0 => array:1 [
                  "referenciaCompleta" => "Ley 10&#47;2011&#44; de 24 de marzo&#44; de derechos y garant&#237;as de la dignidad de la persona en el proceso de morir y de la muerte&#46; Bolet&#237;n Oficial de Arag&#243;n&#46; 2011&#46; Available from&#58; <a target="_blank" href="http://www.boa.aragon.es/cgi-bin/EBOA/BRSCGI?CMD=VERDOC%26BASE=BOLE%26SEC=BUSQUEDA_AVANZADA%26SEPARADOR=%26%26DOCN=000158718">http&#58;&#47;&#47;www&#46;boa&#46;aragon&#46;es&#47;cgi-bin&#47;EBOA&#47;BRSCGI&#63;CMD&#61;VERDOC&#38;BASE&#61;BOLE&#38;SEC&#61;BUSQUEDA&#95;AVANZADA&#38;SEPARADOR&#61;&#38;&#38;DOCN&#61;000158718</a>&#46;"
                ]
              ]
            ]
            5 => array:3 [
              "identificador" => "bib0030"
              "etiqueta" => "6"
              "referencia" => array:1 [
                0 => array:1 [
                  "referenciaCompleta" => "Lei n&#46;&#176; 31&#47;2018 de 18 de julho&#46; Direitos das pessoas em contexto de doen&#231;a avan&#231;ada e em fim de vida&#46; Di&#225;rio da Rep&#250;blica n&#46;&#176; 31&#47;2018&#44; S&#233;rie I de 2018-07-18&#46; Assembleia da Rep&#250;blica&#46; 2018&#46; Available from&#58; <a target="_blank" href="https://data.dre.pt/eli/lei/31/2018/07/18/p/dre/pt/html">https&#58;&#47;&#47;data&#46;dre&#46;pt&#47;eli&#47;lei&#47;31&#47;2018&#47;07&#47;18&#47;p&#47;dre&#47;pt&#47;html</a>&#46;"
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              ]
            ]
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              "etiqueta" => "7"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cuidados en los &#250;ltimos d&#237;as de vida en los pacientes hospitalizados en medicina interna"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
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Article information

ISSN: 22548874
Original language: English

DOI:10.1016/j.rceng.2020.04.009

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