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Palliative Sedation in Nursing Homes: A Good Death?
JAMDA 15 (2014) 541e543
JAMDA journal homepage: www.jamda.com
Editorial
Palliative Sedation in Nursing Homes: A Good Death? Daisy J.A. Janssen MD, PhD a, b, * a b
Department of Research and Education, CIROþ, Center of Expertise for Chronic Organ Failure, Horn, The Netherlands Center of Expertise for Palliative Care, Maastricht University Medical Center (MUMCþ), Maastricht, The Netherlands
Nursing homes are an important setting for end-of-life care. The proportion of nursing home deaths is expected to increase in the upcoming years.1 International differences exist in the role of nursing homes in end-of-life care. Indeed, the proportion of residents dying in the nursing home ranges from 45% in Japan, to 68% in the US and 90% in Belgium.1e3 Optimal end-of-life care should ensure a ‘good death.’ Patients, family members, and healthcare professionals identified 6 major components of a good death: pain and symptom management; clear decision making; preparation for death; completion, including aspects concerning faith, life review, resolving conflicts, spending time with family and friends, and saying good-bye; contributing to others; and affirmation of the whole person.4 Dying peacefully can be one prerequisite for a good death. A recent Dutch study showed that 56% of bereaved family members of nursing home residents with dementia felt that their loved one died peacefully, whereas 11% reported that their loved one did not die peacefully at all. Dying peacefully was related with the family perception that enough nurses were available and the physicians’ perception of a moderate influence of religious affiliation on end-of-life decision-making policies.5 Dying with dignity can also be seen as a component of a good death. According to nurses, main themes promoting dignity at the end-of-life are treating a person with respect, helping the patient to prepare for the end-oflife, promoting shared decision-making, and providing high-quality care.6 High-quality end-of-life care is adapted to the needs and preferences of the individual patient. What a good death means differs between individuals. Therefore, high quality end-of-life care is a dynamic process that should be achieved through a process of shared decision-making and clear communication that acknowledges the individual values and preferences of patients and their families.4,7 Despite individual differences, patients, family, and healthcare providers agree that optimal symptom management is a prerequisite for a good death.4 Symptom distress is highly prevalent in the last week of life of nursing home residents with dementia. A Dutch study showed that one-half of the residents suffered from pain, whereas breathlessness and agitation were reported in one-third of the residents.8 Quality of life in the last week of life was worst in residents
DOI of original article: http://dx.doi.org/10.1016/j.jamda.2014.04.004 The author declares no conflicts of interest. * Address correspondence to Daisy J.A. Janssen, MD, PhD, Department of Research and Education, CIROþ, Center of Expertise for Chronic Organ Failure, Hornerheide 1, 6085 NM Horn, The Netherlands. E-mail address: [email protected] (D.J.A. Janssen).
suffering from pain or agitation. In this study, 77% of the residents received opioids in the last 24 hours of life. In 21%, palliative sedation was used before death to relieve suffering caused by refractory symptoms.8 Palliative sedation is defined as the monitored use of medications intended to decrease the level of consciousness in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family, and health-care providers.9 In contrast to euthanasia, palliative sedation is seen as an intervention aimed at relieving suffering, without life-shortening effects.10,11 The depth of sedation can range from mild to deep, and sedatives can be administered intermittently or continuously.12 In the past, palliative sedation was seen as a controversial issue.13 Nowadays palliative sedation is increasingly implemented in palliative care, although international differences exist in the prevalence of use of palliative sedation. For example, palliative sedation is used in 8% of the patients who died in The Netherlands, in 15% of the patients who died in Flanders, and in 17% of the patients who died in the United Kingdom.14 A recent survey showed that 10% of the physicians in the US performed deep continuous sedation in the previous 12 months.15 Currently, several international and national statements and guidelines concerning palliative sedation exist.9,10,12,16e18 These statements have the following recommendations in common. First, the aim of palliative sedation is relief of suffering, and this is achieved by lowering the level of consciousness by the administration of sedatives. Second, palliative sedation is indicated for refractory physical or psychological symptoms. A symptom is considered refractory when all treatments have failed or when there are no other methods that will be effective within the allowed time frame and the possibility of complications and degree of invasion that are tolerable for the patient. Third, palliative sedation is only indicated in dying patients. Fourth, healthcare providers need knowledge and expertise in palliative sedation or should consult a specialist in palliative sedation. Fifth, medication prescribed for palliative sedation should be carefully titrated to the level necessary to relieve suffering (proportional sedation). Sixth, communication and shared decisionmaking with the patient (if possible) and/or the family are paramount.9,10,12,16e18 The statements provide different recommendations on the administration of artificial fluid during palliative sedation and whether existential suffering can be seen as a refractory symptom that permits palliative sedation. However, all statements highlight the fact that palliative sedation should not be used with the intention to hasten death.9,10,12,16e18 In fact, the European Association for Palliative Care recommended framework for the use of sedation in palliative
1525-8610/$ - see front matter Ó 2014 AMDA e The Society for Post-Acute and Long-Term Care Medicine. http://dx.doi.org/10.1016/j.jamda.2014.06.001
542
Editorial / JAMDA 15 (2014) 541e543
care’9 even states: “Abuse of sedation occurs when clinicians sedate patients approaching the end of life with the primary goal of hastening the patient’s death.” Nevertheless, in this issue of the Journal, Rys et al19 showed that in 38% of the nursing home residents who received continuous deep sedation before death, the physician partially (33%) or explicitly (5%) intended to hasten death. A comparable survey among general practitioners, medical specialists, and elderly care physicians exploring practice after introduction of the palliative sedation guideline in The Netherlands showed that 14% used palliative sedation partially with the intention to hasten death, whereas 1% used palliative sedation with the explicit intention to hasten death.20 A survey among physicians in the US showed that 42% agreed that intentionally hastening a patient’s death is sometimes the right thing to do for a physician.15 The study from Rys et al19 in the context of these previous studies raises several important questions. First, whether and to what extent can palliative sedation hasten death? To date, several studies have explored whether palliative sedation may hasten death. Barathi et al21 performed a systematic review of 4 prospective and 7 retrospective studies. They showed that the mean survival time from the last admission or start of home care until death was comparable in cancer patients with or without palliative sedation (8 to 64 days vs 6 to 63 days, respectively).21 Mean duration of palliative sedation ranged from 2.5 to 4.3 days.21 Another systematic review was performed by Maltoni et al22 and also included 4 prospective and 7 retrospective studies. Ten studies were equal to the studies as included in the review from Barathi et al. Maltoni et al22 reported a comparable median survival time from the last admission or start of home care until death for sedated and nonsedated patients (7 to 37 days vs 4 to 40 days, respectively). Studies included in these reviews recruited between 76 and 548 patients. Studies were prospective or retrospective trials with a comparison group. Randomized controlled trials were not available. Quality of included studies ranged from fair to poor, and meta-analytic techniques were not possible because of differences in study design and heterogeneity of data. All studies included patients with cancer, therefore data about patients with nonmalignant diseases are lacking. Benzodiazepines were the most prescribed medications.21,22 Midazolam was the most frequently used sedative and reported mean dosages ranged from 4223 to 74 mg.24 In the study from Chiu et al,25 13% of the patients received opioids to induce sedation, whereas in the study from Maltoni et al,23 26% of the patients received opioids to induce sedation. Opioids are regarded as inappropriate for sedation in the current guidelines because of the weak sedative effect and the risk of inducing a delirium. Opioids can be used during palliative sedation next to sedatives such as benzodiazepines for treatment of pain or dyspnea.9,10,12,18 One study included in both reviews showed a higher mean survival time in patients who were sedated than in patients who were not sedated before death (6.6 vs 3.3 days, respectively, P ¼ .003).26 Patients started with 30 to 45 mg midazolam intravenously per day and the dosage was adapted if needed. All other studies included in both reviews did not show a difference in survival time between sedated and non-sedated patients.21,22 A more recent retrospective study among 370 patients with cancer who died at home showed that mean survival was 38 days for sedated patients and 35 days for nonsedated patients (P ¼ .98). Mean duration of sedation was 86 hours. At time of death 98% of the sedated patients received midazolam and the mean dosage was 22 mg per day.27 Despite lack of evidence from randomized-controlled trials, the currently available literature supports that palliative sedation does not hasten death. Performing randomized-controlled trials in which dying patients with refractory symptoms will be treated with palliative sedation or placebo according to their randomization is ethically impossible.21,22
Notwithstanding the currently available data, the impression that palliative sedation may hasten death is highly prevalent among physicians.28 A survey among Japanese oncologists and palliative care physicians showed that 37% thought that palliative sedation might shorten life.29 In a Dutch study, 41% of the physicians estimated that palliative sedation in their last patient had shortened life between less than a day and several weeks.20 The beliefs that palliative sedation may hasten death or that palliative sedation is indistinguishable from euthanasia are important factors contributing to nurse-perceived burden in palliative sedation.30 Second, why do physicians use palliative sedation with the intention to hasten death? Many physicians experience decision-making about palliative sedation as difficult.31 For physicians, their feeling that they have the duty to relief suffering may be an important decision-making factor in the context of palliative sedation.32 For some physicians considerations concerning life expectancy are less important than relieving the patient’s suffering.32 Important decision-making factors are the patient’s wishes and the impact of the patients suffering on the family.32 Swart et al20 have shown that 14% of the physicians experienced pressure to start palliative sedation. Usually, pressure came from relatives and patients. A study among Dutch general practitioners showed that 16% felt pressure from patients, family members, or other professionals to start continuous sedation.33 In 41% of the cases, this pressure influenced decision-making. The experience of pressure to start palliative sedation was related with the presence of psychological symptoms, a previous euthanasia request, and a longer life expectancy.33 Yet, international guidelines recommend that palliative sedation should only be performed in dying patients. In the study from Rys et al,19 15% of the physicians estimated the life-expectancy as more that 2 weeks, whereas in the study from Swart et al,20 only 3% estimated the life-expectancy as more than 2 weeks. The depth of sedation can vary from mild to deep and physicians should titrate the dosage sedative to the level needed to relieve suffering.9,10,12,16e18 A recent Dutch qualitative study identified 2 approaches for determining the depth of sedation by physicians.34 Part of the physicians starts with a low dosage sedative and increases the dosage if needed, whereas other physicians start with deep sedation. In both approaches, physicians state that they are guided by alleviation of symptoms. However, physicians who start with deep sedation report that patients and their relatives need to be assured that after the start of palliative sedation suffering will continue to be relieved. They experience waking up as problematic and believe that after the start of sedation communication with the patient is not important anymore.34 To date, it remains unknown whether and to what extent physicians experience pressure, for example to increase the depth of sedation, from family members or other healthcare professionals during the process of palliative sedation. A case series of continuous deep sedation until death in nursing home patients with dementia has shown that patients may suffer from symptoms, such as fear, pain, restlessness, and breathlessness, despite the use of deep sedation. For 3 of 11 sedated residents, nurses experienced the dying process as a struggle.35 Disagreement may exist between the perspective of the family and healthcare professional regarding suffering of the sedated patient. Indeed, in a recent study 17% of the family members reported that their loved one suffered during sedation compared to 9% of the healthcare professionals.36 A vignette study among Japanese oncologists and palliative medicine physicians revealed that physicians who demonstrated higher levels of emotional exhaustion were more likely to choose continuous deep sedation for patients with refractory physical and psychological symptoms. Moreover, physicians with more experience in end-of-life care were less likely to choose continuous deep sedation for patients with depression or delirium, but considered other treatment options.29
Editorial / JAMDA 15 (2014) 541e543
Palliative care consults can be done to support physicians in this complex decision-making process.37 However, palliative care consults are only done in 22% of the palliative sedation cases.20 Reasons to consult are, for example, insufficient expertise in the process of decision-making; insufficient expertise in the performance of the procedure of palliative sedation; or the need for general support. Reasons not to consult are sufficient expertise; lack of time; palliative sedation is normal medical practice; or fear of disagreement with the palliative care specialist.37 Physicians experiencing pressure consult a palliative care specialist as often as physicians not experiencing pressure.33 International statements concerning palliative sedation differ in the extent to which palliative care consultation before start of palliative sedation is needed.9,10 The European Association for Palliative Care recommended framework for the use of sedation in palliative care9 speaks about injudicious palliative sedation if there is a failure to engage with clinicians who are experts in the relief of symptoms despite their availability before starting sedation. The guideline of the Royal Dutch Medical Association10 states that consultation is not necessary if the treating physician has sufficient expertise in palliative sedation. The national Hospice and Palliative Care Organization Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients 16 recommends the practice of convening an interdisciplinary conference about the use of palliative sedation for each patient with whom it is being considered. The study from Rys et al19 in this issue of the Journal shows the complexity of the process of decision-making concerning continuous deep sedation. Part of the physicians used palliative sedation with the partial or explicit intention to hasten death, despite agreement in international statements that palliative sedation should not be performed with the intention to hasten death, as well as the lack of evidence that palliative sedation may have a lifeshortening effect. Both the feeling of physicians that they have the duty to provide a good death and pressure from family members or other healthcare professionals pose a challenge on physicians caring for dying patients. Therefore, the study from Rys et al19 supports the need for palliative care consultation as part of the decision-making process before start of palliative sedation. References 1. Temkin-Greener H, Zheng NT, Xing J, Mukamel DB. Site of death among nursing home residents in the United States: Changing patterns, 2003e2007. J Am Med Dir Assoc 2013;10:741e748. 2. Ikegami N, Ikezaki S. Nursing homes and end-of-life care in Japan. J Am Med Dir Assoc 2013;10:718e723. 3. Vandervoort A, Van den Block L, van der Steen JT, et al. Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 2013;7: 485e492. 4. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;10:825e832. 5. De Roo ML, van der Steen JT, Galindo Garre F, et al. When do people with dementia die peacefully? An analysis of data collected prospectively in longterm care settings. Palliat Med 2014;3:210e219. 6. Periyakoil VS, Stevens M, Kraemer H. Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life. J Am Geriatr Soc 2013;3:440e446. 7. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;19:2476e2482. 8. Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT. Dying with dementia: Symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage 2014;4:710e720. 9. Cherny NI, Radbruch L. Board of the European Association for Palliative C. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 2009;7:581e593.
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10. Guideline for Palliative Sedation Royal Dutch Medical Association (KNMG) 2009. Available at: http://knmg.artsennet.nl/Publicaties/KNMGpublicatie/669 78/Guideline-for-palliative-sedation-62009.htm. Accessed May 5, 2014. 11. Janssens R, van Delden JJ, Widdershoven GA. Palliative sedation: Not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association’s guideline on palliative sedation. J Med Ethics 2012;11:664e668. 12. Morita T, Bito S, Kurihara Y, Uchitomi Y. Development of a clinical guideline for palliative sedation therapy using the Delphi method. J Palliat Med 2005;4: 716e729. 13. Claessens P, Menten J, Schotsmans P, Broeckaert B. Palliative sedation: A review of the research literature. J Pain Symptom Manage 2008;3:310e333. 14. Anquinet L, Rietjens JA, Seale C, et al. The practice of continuous deep sedation until death in Flanders (Belgium), The Netherlands, and the U.K.: A comparative study. J Pain Symptom Manage 2012;1:33e43. 15. Putman MS, Yoon JD, Rasinski KA, Curlin FA. Intentional sedation to unconsciousness at the end of life: Findings from a national physician survey. J Pain Symptom Manage 2013;3:326e334. 16. Kirk TW, Mahon MM, Palliative Sedation Task Force of the National H, Palliative Care Organization Ethics C. National Hospice and Palliative Care Organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. J Pain Symptom Manage 2010;5: 914e923. 17. Levine MA. Report of the Council on Ethical and Judicial Affairs American Medical Association 2008. Available at: https://download.ama-assn.org/ resources/doc/ethics/x-pub/ceja_5a08.pdf. Accessed May 5, 2014. 18. Dean MM, Cellarius V, Henry B, et al. Framework for continuous palliative sedation therapy in Canada. J Palliat Med 2012;8:870e879. 19. Rys S, Deschepper R, Mortier F, et al. Continuous sedation until death with or without the intention to hasten death: A nationwide study in nursing homes in Flanders, Belgium. J Am Med Dir Assoc 2014;15:570e575. 20. Swart SJ, van der Heide A, Brinkkemper T, et al. Continuous palliative sedation until death: Practice after introduction of the Dutch national guideline. BMJ Support Palliat Care 2012;3:256e263. 21. Barathi B, Chandra PS. Palliative sedation in advanced cancer patients: Does it shorten survival time? - A systematic review. Indian J Palliat Care 2013;1: 40e47. 22. Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: A systematic review. J Clin Oncol 2012;12:1378e1383. 23. Maltoni M, Pittureri C, Scarpi E, et al. Palliative sedation therapy does not hasten death: Results from a prospective multicenter study. Ann Oncol 2009;7: 1163e1169. 24. Alonso-Babarro A, Varela-Cerdeira M, Torres-Vigil I, et al. At-home palliative sedation for end-of-life cancer patients. Palliat Med 2010;5:486e492. 25. Chiu TY, Hu WY, Lue BH, et al. Sedation for refractory symptoms of terminal cancer patients in Taiwan. J Pain Symptom Manage 2001;6:467e472. 26. Mercadante S, Intravaia G, Villari P, et al. Controlled sedation for refractory symptoms in dying patients. J Pain Symptom Manage 2009;5:771e779. 27. Mercadante S, Porzio G, Valle A, et al. Palliative sedation in advanced cancer patients followed at home: A retrospective analysis. J Pain Symptom Manage 2012;6:1126e1130. 28. Hasselaar JG, Verhagen SC, Wolff AP, et al. Changed patterns in Dutch palliative sedation practices after the introduction of a national guideline. Arch Intern Med 2009;5:430e437. 29. Morita T, Akechi T, Sugawara Y, et al. Practices and attitudes of Japanese oncologists and palliative care physicians concerning terminal sedation: A nationwide survey. J Clin Oncol 2002;3:758e764. 30. Abarshi EA, Papavasiliou ES, Preston N, et al. The complexity of nurses’ attitudes and practice of sedation at the end of life: A systematic literature review. J Pain Symptom Manage 2014;5:915e925. 31. Chater S, Viola R, Paterson J, Jarvis V. Sedation for intractable distress in the dyingeA survey of experts. Palliat Med 1998;4:255e269. 32. Swart SJ, van der Heide A, van Zuylen L, et al. Continuous palliative sedation: ot only a response to physical suffering. J Palliat Med 2014;1:27e36. 33. Blanker MH, Koerhuis-Roessink M, Swart SJ, et al. Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice. BMC Fam Pract 2012;13:68. 34. Swart SJ, van der Heide A, van Zuylen L, et al. Considerations of physicians about the depth of palliative sedation at the end of life. CMAJ 2012;7: E360eE366. 35. Anquinet L, Rietjens JA, Vandervoort A, et al. Continuous deep sedation until death in nursing home residents with dementia: A case series. J Am Geriatr Soc 2013;10:1768e1776. 36. Calvo-Espinos C, Ruiz de Gaona E, Gonzalez C, et al. Palliative sedation for cancer patients included in a home care program: A retrospective study [published online ahead of print April 24, 2014]. Palliat Support Care. 37. Koper I, van der Heide A, Janssens R, et al. Consultation with specialist palliative care services in palliative sedation: Considerations of Dutch physicians. Support Care Cancer 2014;1:225e231.
JAMDA journal homepage: www.jamda.com
Editorial
Palliative Sedation in Nursing Homes: A Good Death? Daisy J.A. Janssen MD, PhD a, b, * a b
Department of Research and Education, CIROþ, Center of Expertise for Chronic Organ Failure, Horn, The Netherlands Center of Expertise for Palliative Care, Maastricht University Medical Center (MUMCþ), Maastricht, The Netherlands
Nursing homes are an important setting for end-of-life care. The proportion of nursing home deaths is expected to increase in the upcoming years.1 International differences exist in the role of nursing homes in end-of-life care. Indeed, the proportion of residents dying in the nursing home ranges from 45% in Japan, to 68% in the US and 90% in Belgium.1e3 Optimal end-of-life care should ensure a ‘good death.’ Patients, family members, and healthcare professionals identified 6 major components of a good death: pain and symptom management; clear decision making; preparation for death; completion, including aspects concerning faith, life review, resolving conflicts, spending time with family and friends, and saying good-bye; contributing to others; and affirmation of the whole person.4 Dying peacefully can be one prerequisite for a good death. A recent Dutch study showed that 56% of bereaved family members of nursing home residents with dementia felt that their loved one died peacefully, whereas 11% reported that their loved one did not die peacefully at all. Dying peacefully was related with the family perception that enough nurses were available and the physicians’ perception of a moderate influence of religious affiliation on end-of-life decision-making policies.5 Dying with dignity can also be seen as a component of a good death. According to nurses, main themes promoting dignity at the end-of-life are treating a person with respect, helping the patient to prepare for the end-oflife, promoting shared decision-making, and providing high-quality care.6 High-quality end-of-life care is adapted to the needs and preferences of the individual patient. What a good death means differs between individuals. Therefore, high quality end-of-life care is a dynamic process that should be achieved through a process of shared decision-making and clear communication that acknowledges the individual values and preferences of patients and their families.4,7 Despite individual differences, patients, family, and healthcare providers agree that optimal symptom management is a prerequisite for a good death.4 Symptom distress is highly prevalent in the last week of life of nursing home residents with dementia. A Dutch study showed that one-half of the residents suffered from pain, whereas breathlessness and agitation were reported in one-third of the residents.8 Quality of life in the last week of life was worst in residents
DOI of original article: http://dx.doi.org/10.1016/j.jamda.2014.04.004 The author declares no conflicts of interest. * Address correspondence to Daisy J.A. Janssen, MD, PhD, Department of Research and Education, CIROþ, Center of Expertise for Chronic Organ Failure, Hornerheide 1, 6085 NM Horn, The Netherlands. E-mail address: [email protected] (D.J.A. Janssen).
suffering from pain or agitation. In this study, 77% of the residents received opioids in the last 24 hours of life. In 21%, palliative sedation was used before death to relieve suffering caused by refractory symptoms.8 Palliative sedation is defined as the monitored use of medications intended to decrease the level of consciousness in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family, and health-care providers.9 In contrast to euthanasia, palliative sedation is seen as an intervention aimed at relieving suffering, without life-shortening effects.10,11 The depth of sedation can range from mild to deep, and sedatives can be administered intermittently or continuously.12 In the past, palliative sedation was seen as a controversial issue.13 Nowadays palliative sedation is increasingly implemented in palliative care, although international differences exist in the prevalence of use of palliative sedation. For example, palliative sedation is used in 8% of the patients who died in The Netherlands, in 15% of the patients who died in Flanders, and in 17% of the patients who died in the United Kingdom.14 A recent survey showed that 10% of the physicians in the US performed deep continuous sedation in the previous 12 months.15 Currently, several international and national statements and guidelines concerning palliative sedation exist.9,10,12,16e18 These statements have the following recommendations in common. First, the aim of palliative sedation is relief of suffering, and this is achieved by lowering the level of consciousness by the administration of sedatives. Second, palliative sedation is indicated for refractory physical or psychological symptoms. A symptom is considered refractory when all treatments have failed or when there are no other methods that will be effective within the allowed time frame and the possibility of complications and degree of invasion that are tolerable for the patient. Third, palliative sedation is only indicated in dying patients. Fourth, healthcare providers need knowledge and expertise in palliative sedation or should consult a specialist in palliative sedation. Fifth, medication prescribed for palliative sedation should be carefully titrated to the level necessary to relieve suffering (proportional sedation). Sixth, communication and shared decisionmaking with the patient (if possible) and/or the family are paramount.9,10,12,16e18 The statements provide different recommendations on the administration of artificial fluid during palliative sedation and whether existential suffering can be seen as a refractory symptom that permits palliative sedation. However, all statements highlight the fact that palliative sedation should not be used with the intention to hasten death.9,10,12,16e18 In fact, the European Association for Palliative Care recommended framework for the use of sedation in palliative
1525-8610/$ - see front matter Ó 2014 AMDA e The Society for Post-Acute and Long-Term Care Medicine. http://dx.doi.org/10.1016/j.jamda.2014.06.001
542
Editorial / JAMDA 15 (2014) 541e543
care’9 even states: “Abuse of sedation occurs when clinicians sedate patients approaching the end of life with the primary goal of hastening the patient’s death.” Nevertheless, in this issue of the Journal, Rys et al19 showed that in 38% of the nursing home residents who received continuous deep sedation before death, the physician partially (33%) or explicitly (5%) intended to hasten death. A comparable survey among general practitioners, medical specialists, and elderly care physicians exploring practice after introduction of the palliative sedation guideline in The Netherlands showed that 14% used palliative sedation partially with the intention to hasten death, whereas 1% used palliative sedation with the explicit intention to hasten death.20 A survey among physicians in the US showed that 42% agreed that intentionally hastening a patient’s death is sometimes the right thing to do for a physician.15 The study from Rys et al19 in the context of these previous studies raises several important questions. First, whether and to what extent can palliative sedation hasten death? To date, several studies have explored whether palliative sedation may hasten death. Barathi et al21 performed a systematic review of 4 prospective and 7 retrospective studies. They showed that the mean survival time from the last admission or start of home care until death was comparable in cancer patients with or without palliative sedation (8 to 64 days vs 6 to 63 days, respectively).21 Mean duration of palliative sedation ranged from 2.5 to 4.3 days.21 Another systematic review was performed by Maltoni et al22 and also included 4 prospective and 7 retrospective studies. Ten studies were equal to the studies as included in the review from Barathi et al. Maltoni et al22 reported a comparable median survival time from the last admission or start of home care until death for sedated and nonsedated patients (7 to 37 days vs 4 to 40 days, respectively). Studies included in these reviews recruited between 76 and 548 patients. Studies were prospective or retrospective trials with a comparison group. Randomized controlled trials were not available. Quality of included studies ranged from fair to poor, and meta-analytic techniques were not possible because of differences in study design and heterogeneity of data. All studies included patients with cancer, therefore data about patients with nonmalignant diseases are lacking. Benzodiazepines were the most prescribed medications.21,22 Midazolam was the most frequently used sedative and reported mean dosages ranged from 4223 to 74 mg.24 In the study from Chiu et al,25 13% of the patients received opioids to induce sedation, whereas in the study from Maltoni et al,23 26% of the patients received opioids to induce sedation. Opioids are regarded as inappropriate for sedation in the current guidelines because of the weak sedative effect and the risk of inducing a delirium. Opioids can be used during palliative sedation next to sedatives such as benzodiazepines for treatment of pain or dyspnea.9,10,12,18 One study included in both reviews showed a higher mean survival time in patients who were sedated than in patients who were not sedated before death (6.6 vs 3.3 days, respectively, P ¼ .003).26 Patients started with 30 to 45 mg midazolam intravenously per day and the dosage was adapted if needed. All other studies included in both reviews did not show a difference in survival time between sedated and non-sedated patients.21,22 A more recent retrospective study among 370 patients with cancer who died at home showed that mean survival was 38 days for sedated patients and 35 days for nonsedated patients (P ¼ .98). Mean duration of sedation was 86 hours. At time of death 98% of the sedated patients received midazolam and the mean dosage was 22 mg per day.27 Despite lack of evidence from randomized-controlled trials, the currently available literature supports that palliative sedation does not hasten death. Performing randomized-controlled trials in which dying patients with refractory symptoms will be treated with palliative sedation or placebo according to their randomization is ethically impossible.21,22
Notwithstanding the currently available data, the impression that palliative sedation may hasten death is highly prevalent among physicians.28 A survey among Japanese oncologists and palliative care physicians showed that 37% thought that palliative sedation might shorten life.29 In a Dutch study, 41% of the physicians estimated that palliative sedation in their last patient had shortened life between less than a day and several weeks.20 The beliefs that palliative sedation may hasten death or that palliative sedation is indistinguishable from euthanasia are important factors contributing to nurse-perceived burden in palliative sedation.30 Second, why do physicians use palliative sedation with the intention to hasten death? Many physicians experience decision-making about palliative sedation as difficult.31 For physicians, their feeling that they have the duty to relief suffering may be an important decision-making factor in the context of palliative sedation.32 For some physicians considerations concerning life expectancy are less important than relieving the patient’s suffering.32 Important decision-making factors are the patient’s wishes and the impact of the patients suffering on the family.32 Swart et al20 have shown that 14% of the physicians experienced pressure to start palliative sedation. Usually, pressure came from relatives and patients. A study among Dutch general practitioners showed that 16% felt pressure from patients, family members, or other professionals to start continuous sedation.33 In 41% of the cases, this pressure influenced decision-making. The experience of pressure to start palliative sedation was related with the presence of psychological symptoms, a previous euthanasia request, and a longer life expectancy.33 Yet, international guidelines recommend that palliative sedation should only be performed in dying patients. In the study from Rys et al,19 15% of the physicians estimated the life-expectancy as more that 2 weeks, whereas in the study from Swart et al,20 only 3% estimated the life-expectancy as more than 2 weeks. The depth of sedation can vary from mild to deep and physicians should titrate the dosage sedative to the level needed to relieve suffering.9,10,12,16e18 A recent Dutch qualitative study identified 2 approaches for determining the depth of sedation by physicians.34 Part of the physicians starts with a low dosage sedative and increases the dosage if needed, whereas other physicians start with deep sedation. In both approaches, physicians state that they are guided by alleviation of symptoms. However, physicians who start with deep sedation report that patients and their relatives need to be assured that after the start of palliative sedation suffering will continue to be relieved. They experience waking up as problematic and believe that after the start of sedation communication with the patient is not important anymore.34 To date, it remains unknown whether and to what extent physicians experience pressure, for example to increase the depth of sedation, from family members or other healthcare professionals during the process of palliative sedation. A case series of continuous deep sedation until death in nursing home patients with dementia has shown that patients may suffer from symptoms, such as fear, pain, restlessness, and breathlessness, despite the use of deep sedation. For 3 of 11 sedated residents, nurses experienced the dying process as a struggle.35 Disagreement may exist between the perspective of the family and healthcare professional regarding suffering of the sedated patient. Indeed, in a recent study 17% of the family members reported that their loved one suffered during sedation compared to 9% of the healthcare professionals.36 A vignette study among Japanese oncologists and palliative medicine physicians revealed that physicians who demonstrated higher levels of emotional exhaustion were more likely to choose continuous deep sedation for patients with refractory physical and psychological symptoms. Moreover, physicians with more experience in end-of-life care were less likely to choose continuous deep sedation for patients with depression or delirium, but considered other treatment options.29
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Palliative care consults can be done to support physicians in this complex decision-making process.37 However, palliative care consults are only done in 22% of the palliative sedation cases.20 Reasons to consult are, for example, insufficient expertise in the process of decision-making; insufficient expertise in the performance of the procedure of palliative sedation; or the need for general support. Reasons not to consult are sufficient expertise; lack of time; palliative sedation is normal medical practice; or fear of disagreement with the palliative care specialist.37 Physicians experiencing pressure consult a palliative care specialist as often as physicians not experiencing pressure.33 International statements concerning palliative sedation differ in the extent to which palliative care consultation before start of palliative sedation is needed.9,10 The European Association for Palliative Care recommended framework for the use of sedation in palliative care9 speaks about injudicious palliative sedation if there is a failure to engage with clinicians who are experts in the relief of symptoms despite their availability before starting sedation. The guideline of the Royal Dutch Medical Association10 states that consultation is not necessary if the treating physician has sufficient expertise in palliative sedation. The national Hospice and Palliative Care Organization Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients 16 recommends the practice of convening an interdisciplinary conference about the use of palliative sedation for each patient with whom it is being considered. The study from Rys et al19 in this issue of the Journal shows the complexity of the process of decision-making concerning continuous deep sedation. Part of the physicians used palliative sedation with the partial or explicit intention to hasten death, despite agreement in international statements that palliative sedation should not be performed with the intention to hasten death, as well as the lack of evidence that palliative sedation may have a lifeshortening effect. Both the feeling of physicians that they have the duty to provide a good death and pressure from family members or other healthcare professionals pose a challenge on physicians caring for dying patients. Therefore, the study from Rys et al19 supports the need for palliative care consultation as part of the decision-making process before start of palliative sedation. References 1. Temkin-Greener H, Zheng NT, Xing J, Mukamel DB. Site of death among nursing home residents in the United States: Changing patterns, 2003e2007. J Am Med Dir Assoc 2013;10:741e748. 2. Ikegami N, Ikezaki S. Nursing homes and end-of-life care in Japan. J Am Med Dir Assoc 2013;10:718e723. 3. Vandervoort A, Van den Block L, van der Steen JT, et al. Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 2013;7: 485e492. 4. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;10:825e832. 5. De Roo ML, van der Steen JT, Galindo Garre F, et al. When do people with dementia die peacefully? An analysis of data collected prospectively in longterm care settings. Palliat Med 2014;3:210e219. 6. Periyakoil VS, Stevens M, Kraemer H. Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life. J Am Geriatr Soc 2013;3:440e446. 7. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;19:2476e2482. 8. Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT. Dying with dementia: Symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage 2014;4:710e720. 9. Cherny NI, Radbruch L. Board of the European Association for Palliative C. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 2009;7:581e593.
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Palliat Med 2010;5:486e492. 25. Chiu TY, Hu WY, Lue BH, et al. Sedation for refractory symptoms of terminal cancer patients in Taiwan. J Pain Symptom Manage 2001;6:467e472. 26. Mercadante S, Intravaia G, Villari P, et al. Controlled sedation for refractory symptoms in dying patients. J Pain Symptom Manage 2009;5:771e779. 27. Mercadante S, Porzio G, Valle A, et al. Palliative sedation in advanced cancer patients followed at home: A retrospective analysis. J Pain Symptom Manage 2012;6:1126e1130. 28. Hasselaar JG, Verhagen SC, Wolff AP, et al. Changed patterns in Dutch palliative sedation practices after the introduction of a national guideline. Arch Intern Med 2009;5:430e437. 29. Morita T, Akechi T, Sugawara Y, et al. Practices and attitudes of Japanese oncologists and palliative care physicians concerning terminal sedation: A nationwide survey. J Clin Oncol 2002;3:758e764. 30. Abarshi EA, Papavasiliou ES, Preston N, et al. The complexity of nurses’ attitudes and practice of sedation at the end of life: A systematic literature review. J Pain Symptom Manage 2014;5:915e925. 31. Chater S, Viola R, Paterson J, Jarvis V. Sedation for intractable distress in the dyingeA survey of experts. Palliat Med 1998;4:255e269. 32. Swart SJ, van der Heide A, van Zuylen L, et al. Continuous palliative sedation: ot only a response to physical suffering. J Palliat Med 2014;1:27e36. 33. Blanker MH, Koerhuis-Roessink M, Swart SJ, et al. Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice. BMC Fam Pract 2012;13:68. 34. Swart SJ, van der Heide A, van Zuylen L, et al. Considerations of physicians about the depth of palliative sedation at the end of life. CMAJ 2012;7: E360eE366. 35. Anquinet L, Rietjens JA, Vandervoort A, et al. Continuous deep sedation until death in nursing home residents with dementia: A case series. J Am Geriatr Soc 2013;10:1768e1776. 36. Calvo-Espinos C, Ruiz de Gaona E, Gonzalez C, et al. Palliative sedation for cancer patients included in a home care program: A retrospective study [published online ahead of print April 24, 2014]. Palliat Support Care. 37. Koper I, van der Heide A, Janssens R, et al. Consultation with specialist palliative care services in palliative sedation: Considerations of Dutch physicians. Support Care Cancer 2014;1:225e231.