Abstract
Background:
Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia.
Objectives:
To describe and compare physician and surrogate agreements with the use of assisted dying and CDS in advanced dementia.
Design, Setting, Subjects:
Physicians (N=64) and surrogates (N=168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision-support tools in this population.
Methods:
At baseline, participants were asked their agreement with assisted dying and CDS in advanced dementia using response options: completely agree, somewhat agree, somewhat disagree, completely disagree, do not know. Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (versus completely or somewhat disagree) with these practices.
Results:
Physicians and surrogates, respectively, were: mean (SD) age, 50.6 (9.9), 57.4 (14.6) years; women, 46.9% (N=30/64), 68.9% (N=115/167). A total of 20.3% (N=13/64) of physicians and 47.0% (N=79/168) of surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice use compared to physicians (adjusted odds ratio (AOR), 3.87; 95% CI, 1.94, 7.69). For CDS, 51.6% (N=33/64) of physicians and 41.9% (N=70/169) of surrogates agreed with this practice, which did not differ significantly between groups.
Conclusions:
Surrogates were more agreeable to consider assisted dying in advanced dementia than physicians, and about half of participants in both groups reported CDS to be an appropriate option for this population.
Keywords: Dementia, assisted dying, sedation, end of life, decision-making
Introduction
Dementia afflicts more than 50 million people worldwide and is one of the most common causes of death in Switzerland.[1,2] In advanced dementia, patients have profound cognitive and functional deficits, and experience clinical complications that may cause discomfort and a poor quality of life.[3–5|
Assisted dying is a controversial practice that has been used in certain contexts among patients with life-limiting disease.[6] Assisted dying is when a physician either administers drugs that cause a person to die (i.e., euthanasia) or provides lethal drugs for self-administration (i.e., physician-assisted suicide).[7] In the case of euthanasia, the physician takes an active role in completing the request of the patient incapable of completing the final act, for instance by administrating a lethal injection. In assisted suicide, the physician solely makes lethal means available to the patient, but the completion of the final act is left to the patient. To date, physician-assisted dying is legal in only a few states in the United States and a limited number of countries, including Switzerland.[6,8,9] However, only the Netherlands, Belgium, and Luxembourg allow assisted dying for people with advanced dementia.[10] This request must be made in an advanced directive by a patient with dementia when decision-making capacity is still intact. Only limited research exists on the perceptions of physicians and surrogates about the use of assisted dying in advanced dementia.[11–15]
Another controversial practice for terminally ill patients is continuous deep sedation until death (CDS), a last resort palliative practice to alleviate suffering.[16,17] Medications are administrated until death to lower the level of consciousness and relieve refractory symptoms of patients with a life expectancy of typically less than two weeks.[18] To date, CDS has predominantly been used among advanced cancer patients who experience extreme physical suffering in their final weeks of life.[16,19] CDS has rarely been used in advanced dementia, a condition predominantly characterized by cognitive impairments with some, but typically less, physical suffering than metastatic cancer.[3,5,20]
To better understand the perceptions of physicians and surrogates about the use of assisted dying and CDS in advanced dementia, we analyzed baseline data from a randomized controlled trial (RCT), the DEMentia FACT box (DEMFACT), conducted in the Swiss-German region of Switzerland. The objectives of this report were to: 1) describe physician and surrogate agreements with the use of assisted dying and CDS in advanced dementia, and 2) compare the agreements with the use of these practices in these two groups.
Methods
Data source
Data were drawn from baseline assessments ascertained in the DEMFACT study conducted between June, 2016 and October, 2016 in the Swiss-German region of Switzerland. DEMFACT was a RCT that evaluated FACT box decision-support tools for treatment decisions in advanced dementia among 64 physicians and 168 surrogates (relatives of dementia patients, N=100; professional guardians, N=68) who were randomized to either the intervention (N=114) or control arm (N=118).[21] Intervention and control arm participants were mailed written questionnaires at baseline and one month later that asked questions about the use of treatments for advanced dementia patients based on hypothetical scenarios. At the one-month follow-up, intervention participants received the decision-support tools, whereas control participants were given no additional information.
The main DEMFACT study compared changes in pre-specified outcomes between the baseline and follow-up assessments in the intervention arm relative to the control arm. In this report, combined data from the baseline questionnaires in both arms (i.e., before receiving the decision-support tools in the intervention arm) were analyzed to describe agreements with the use of continuous sedation and assisted dying in advanced dementia. Baseline questionnaires were completed between June 2, 2016 and July 31, 2016. The ethics commission of the canton of Zurich approved the study’s conduct (KEK-ZH-No. 2015–0626). All participants provided written informed consent.
Population
To understand the impact of the DEMFACT intervention on various decision-makers, participants included physicians and surrogates (relatives of dementia patients and professional guardians) who were potentially responsible for the care of advanced dementia patients. Physicians were identified from the mailing lists of the Swiss Association for Palliative Medicine, Care and Support, and the Swiss Geriatric Medicine Society. Surrogates were identified either through the Alzheimer Association of the canton of Zurich or from the Swiss Association of Professional Guardians mailing list. The detailed recruitment procedure is described elsewhere.[21] Eligible participants were mailed a consent form, which they were asked to sign and return to the research team.
Data Elements
Data collection was procedurally identical across physician and surrogate participants. All variables in this report were collected at the DEMFACT baseline assessment using a written questionnaire sent and returned by mail (approximately 60 minutes to complete).
The outcomes were participants’ agreements with the use of assisted dying and CDS in advanced dementia. Agreements with assisted dying were ascertained using the following question: The current legislation prohibits physician-assisted suicide (assisted dying) for persons lacking the capacity to consent. This prevents persons with advanced dementia from accessing the services of assisted dying organizations. Independent of the current legal situation, would you personally support the use of assisted suicide (one form of physician-hastened death) for persons with advanced dementia? Agreements with the use of CDS were measured as follow: At the end of life, it is possible to use medications, administered until death, to relieve the symptoms of a person with advanced dementia and put them into a permanent, artificial sleep (continuous sedation). Would you personally support the use of continuous sedation for persons with advanced dementia? For both questions, participants were asked to select one of the following response options: completely agree, somewhat agree, somewhat disagree, completely disagree, or do not know.
Other participant data ascertained at baseline included: demographics (age, gender, nationality (Swiss, German, and other), religion (Protestant or Catholic, other religion, no religion, and refused to answer), and educational level (≥ high school versus other)); and whether participants had previously decided about the use of antibiotics and/or artificial hydration for a person with advanced dementia.
Analysis
Analyses were performed using R Version 3.3.2 (Boston, MA). Means with standard deviations (SDs) and frequencies described continuous and categorical variables, respectively.
Logistic regression was used to examine the association between decision-maker type (surrogate versus physician) and agreement with the following practices in advanced dementia (outcomes); 1. assisted dying and 2. CDS. For each practice, the outcome was dichotomized as agree (i.e., completely agree and somewhat agree) versus disagree (i.e., completely disagree and somewhat disagree), and excluded do not know responses. Covariates considered a priori to be possibly associated with supporting the use of assisted dying or CDS,[13] included: participant demographic characteristics (age (dichotomized at median), gender, and religion (dichotomized as no religion versus any, excluding refused to answer)); and prior decisions about the use of antibiotics and/or artificial hydration in advanced dementia (dichotomized as any prior major treatment decision versus none). Bivariable analyses examined the unadjusted associations between each covariate and the outcome. Variables associated with the outcome at P < 0.10 in the unadjusted analyses were entered into a multivariable model. The final adjusted model included those variables significantly associated with the outcome at P < 0.05. Adjusted odds ratios (ORs) with 95% Confidence Intervals (CIs) were computed. A sensitivity analysis examined whether the association differed as a function of subgroup (relatives versus proxies) because perceptions might not be homogenous across subgroups.
Results
Subject Characteristics
Of the 3860 individuals approached for participation, 254 (6.6%) contacted the research team indicating their willingness to participate, and all were eligible for enrollment. Prior to study completion, 15 (5.9%) participants stopped responding to e-mails and/or phone calls (physicians, N=9/74 (12.2%); surrogates, N=6/180 (3.3%)) and 7 (2.8%) participants withdrew (physicians, N=1/74 (1.4%); surrogates, N=6/180 (3.3%)). The final sample size included the remaining 64 physicians and 168 surrogates.
The baseline characteristics of the physicians and surrogates are shown in Table 1. The physicians’ mean (SD) age was 50.6 (9.9) years, 46.9% (N=30/64) were women, and 72.1% (N=44/61) were Swiss. The surrogates’ mean (SD) age was 57.4 (14.6) years, 68.9% (N=115/167) were women, and 94.6% (N=157/166) were Swiss. A total of 68.8% (N=44/64) of physicians and 65.5% (N=108/165) of surrogates reported being either Protestant or Catholic. A total of 90.6% (N=58/64) of physicians had previously made a major treatment decision for a person with advanced dementia, whereas only 25.3% (N=42/166) surrogates had ever made such a decision.
Table 1.
Physician and Surrogate Characteristics (N=232)
| Characteristics | Physicians (N=64), No. (%) |
Surrogates (N=168), No. (%) |
|---|---|---|
| Age, mean ± standard deviationa | 50.6 ± 9.9 | 57.4 ± 14.6 |
| Age > 55 (median) | 21 (32.8) | 91 (54.5) |
| Femalea | 30 (46.9) | 115 (68.9) |
| Nationality | ||
| Swiss | 44 (72.1) | 157 (94.6) |
| German | 13 (21.3) | 7 (4.2) |
| Other | 4 (6.6) | 2 (1.2) |
| Religiona | ||
| Protestant or catholic | 44 (68.8) | 108 (65.5) |
| Other | 9 (14.1) | 11 (6.7) |
| No religion | 10 (15.6) | 38 (23.0) |
| Refused to answer | 1 (1.6) | 8 (4.8) |
| Educationa | ||
| ≥ high school | 64 (100) | 161 (97.0) |
| Any prior major treatment decision in dementiaa,b | 58 (90.6) | 42 (25.3) |
The total number of missing values by characteristic was: age, N=1; female, N=1; nationality, N=5; education, N=2; religion, N=3; and any prior major treatment decision, N=2.
Decision-makers reported whether they had or had not previously made any major decision about the use of antibiotics and/or artificial hydration for a person with advanced dementia.
Agreement with Assisted Dying
The distribution of physician responses about the use of assisted dying in advanced dementia was as follows: completely agree, 4.7% (N=3/64); somewhat agree, 15.6% (N=10/64); somewhat disagree, 26.6% (N=17/64); completely disagree, 50.0% (N=32/64); and do not know, 3.1% (N=2/64). The distribution among surrogates was: completely agree, 20.2% (N=34/168); somewhat agree, 26.8% (N=45/168); somewhat disagree, 23.2% (N=39/168); completely disagree, 22.6% (N=38/168); and do not know, 7.1% (N=12/168).
In the unadjusted analyses, participant variables associated with agreement with assisted dying at a P < 0.10 were: age > 55 years; any prior major treatment decision in dementia; and being a surrogate (versus a physician) (Table 2). After multivariable adjustment, only being a surrogate (versus a physician) remained significantly associated with a higher likelihood of agreeing with the use of assisted dying (adjusted OR, 3.87; 95% CI, 1.94, 7.69). When analyzing surrogate subgroups, agreement was significantly more likely in relatives compared to proxies (34.6% versus 16.0%; AOR, 2.00; 95% CI, 1.04, 3.83) (Appendix A, Table 1).
Table 2.
Association between Decision-Maker Type and Agreement with the Use of Assisted Dying in Advanced Dementiaa
| Characteristic | Total No. (%) of Decision- Makers with Characteristic (N=218) |
No. (%) of
Decision-Makers Agreeing with Assisted Dying (N=92) |
Odds Ratiob for Agreement with Assisted Dying (95% Confidence Interval) | ||
|---|---|---|---|---|---|
| Characteristic Present |
Characteristic Absent |
Unadjusted | Adjusted | ||
| Surrogates (versus physicians) | 156 (71.6) | 79 (36.2) | 13 (6.0) | 3.87 (1.94, 7.69)e | 3.87 (1.94, 7.69) |
| Covariates | |||||
| Age > 55 (median)c | 106 (48.8) | 54 (24.9) | 38 (17.5) | 1.99 (1.15, 3.45)e | |
| Femalec | 133 (61.3) | 62 (28.6) | 30 (13.8) | 1.57 (0.90, 2.76) | |
| No religion (versus any)c | 45 (21.4) | 24 (11.4) | 67 (31.9) | 1.67 (0.86, 3.24) | |
| Any prior major treatment decision in dementiac,d | 97 (44.9) | 29 (13.4) | 61 (28.2) | 0.41 (0.23, 0.71)e | |
Decision-makers were 42.2% (N=92/218) agreeing with the use of assisted dying in advanced dementia.
Logistic regression was used in all analyses, and unadjusted and adjusted odds ratio were computed.
The total number of missing values was: age, N=1; female, N=1; no religion, N=8 (missing values, N=3; refused, N=5); and any prior major treatment decision, N=2.
Decision-makers reported whether they had or had not previously made any major decision about the use of antibiotics and/or artificial hydration for a person with advanced dementia.
Variables that were significant at P < 0.10 in bivariable analyses and entered into the multivariable model.
Agreement with Continuous Deep Sedation
The distribution of physician responses about the use of CDS in advanced dementia was as follows: completely agree, 20.3% (N=13/64); somewhat agree, 31.3% (N=20/64); somewhat disagree, 31.3% (N=20/64); completely disagree, 6.3% (N=4/64); and do not know, 10.9% (N=7/64). The distribution among surrogates was: completely agree, 12.6% (N=21/167); somewhat agree, 29.3% (N=49/167); somewhat disagree, 28.7% (N=48/167); completely disagree, 18.6% (N=31/167); and do not know, 10.8% (N=18/167).
The only covariate associated with a greater likelihood of supporting the use of CDS at a P ≤ 0.10 was no religion (versus any) (Table 3). After adjusting for religion, being a surrogate (versus a physician) remained not significantly associated with agreement with the use of CDS (AOR, 0.69; 95% CI, 0.36, 1.29). When analyzing surrogate subgroups, agreement was significantly more likely in relatives compared to proxies (34.9% versus 12.1%; AOR, 2.82; 95% CI, 1.41, 5.64) (Appendix A, Table 2).
Table 3.
Association between Decision-Maker Type and Agreement with the Use of Continuous Deep Sedation in Advanced Dementiaa
| Characteristic | Total No. (%) of Decision- Makers with Characteristic (N=206) |
No. (%) of
Decision-Makers Agreeing with Continuous Deep Sedation (N=103) |
Odds Ratiob for Agreement
with Continuous Deep Sedation (95% Confidence Interval) |
||
|---|---|---|---|---|---|
| Characteristic Present |
Characteristic Absent |
Unadjusted | Adjusted | ||
| Surrogates (versus physicians) | 149 (72.3) | 70 (34.0) | 33 (16.0) | 0.64 (0.35, 1.19) | 0.69 (0.36, 1.29)f |
| Covariates | |||||
| Age > 55 (median)c | 101 (49.3) | 55 (26.8) | 48 (23.4) | 1.39 (0.81, 2.42) | |
| Femalec | 128 (62.4) | 64 (31.2) | 39 (19.0) | 0.97 (0.55, 1.71) | |
| No religion (versus any)c | 41 (20.9) | 27 (13.8) | 74 (37.8) | 2.11 (1.03, 4.33)e | 2.19 (1.06, 4.51) |
| Any prior major treatment decision in dementiac,d | 88 (43.1) | 47 (23.0) | 55 (27.0) | 1.27 (0.73, 2.22) | |
Decision-makers were 50.0% (N=103/206) agreeing with the use of continuous deep sedation in advanced dementia.
Logistic regression was used in all analyses, and unadjusted and adjusted odds ratio were computed.
The total number of missing values was: age, N=1; female, N=1; no religion, N=10 (missing values, N=2; refused, N=8); and any prior major treatment decision, N=2.
Decision-makers reported whether they had or had not previously made any major decision about the use of antibiotics and/or artificial hydration for a person with advanced dementia.
The only variable that was significant at P < 0.10 in bivariable analyses and entered into the multivariable model.
After adjusting for religion, the association between being a surrogate and agreement with the use of continuous deep sedation remained not significant.
Discussion
In this report, a minority of physicians (20%) and about half of surrogates (47%) supported the use of assisted dying for patients with advanced dementia. Surrogates were significantly more likely to agree with the use of this practice than physicians. About half of physicians (52%) and a slightly lower proportion of surrogates (42%) agreed with the use of CDS for these patients, which was not a significant difference between groups.
This study confirms and extends the limited existing research on the perceptions of physicians and surrogates about assisted dying in advanced dementia.[11–15] The use of assisted dying has increased in countries where it is legal (the Netherlands and Belgium) over the last decade, but much less frequently for patients with dementia compared to those with terminal illnesses that do not impact decision-making abilities.[6,10,22] Prior research has shown that most physicians are opposed to the use of this practice in dementia.[12–15] Irrespective of the presence of an advance directive, physicians are reluctant to perform physician- assisted suicide for patients lacking decision-making capacity.[12] A Dutch study of 1456 physicians found that physicians were more willing to perform assisted dying for cancer patients with intact cognition (85%) than for advanced dementia patients who requested euthanasia in an advance directive prepared when they were still capable of making medical decisions (33%).[14] Similar proportions were found in a recent Canadian study of 136 physicians.[15] Notably, this study also showed that agreement increased to 71% when the hypothetical scenario specified the dementia patients to be in their last days of life. One chief concern is that preferences change over time,[23] and that patients who imagine a future state with advanced dementia as one not worth living, once in that state, they may appear to still retain a desire to live. Although surrogates may share this concern, their more favorable view of the use of assisted dying may be driven by a relatively greater aversion to their loved one experiencing the poor quality of life, suffering, and indignities of advanced dementia.[11,13] The greater likelihood of surrogates agreeing to assistance in dying is that their participation, unlike physicians, is not required to complete the act.
Our findings build on the very limited data on the use of CDS in advanced dementia,[3,15,20] and reveal that there is no consensus among either physicians or surrogates about the appropriateness of using CDS in this population. This finding corroborates qualitative research showing that both groups of key decision-makers have mixed feelings about the use of this practice among terminally ill patients.[24,25] To date, CDS has predominantly been used and studied in advanced cancer, a condition where decision-making capacity remains intact and the dying process is most commonly accompanied by intractable physical pain and suffering.[16,19] In contrast to these patients, advanced dementia patients cannot participate in decision-making or report the source of their discomfort due to their serious cognitive impairments.[5] Therefore, it may be challenging for physicians to assess the intensity of a patient’s suffering, making it difficult to justify the use of CDS in advanced dementia. Furthermore, pain and agitation in advanced dementia are often caused by other medical complications, such as infections, and may be effectively controlled with standard palliative medications.[3,4]
This study has several limitations that merit discussion. First, our participation rate was low and thus our findings cannot be generalized to eligible non-participants. Second, generalizability is also limited to the Swiss-German region of Switzerland and to hypothetical situations. The perceptions about end-of-life practices may vary in other regions of Switzerland and in real-life situations. In addition, it cannot be ruled out that physicians unaffiliated with associations promoting palliative care may hold different views on end-of-life practices. Third, the questions may not have been detailed enough to detect nuances in participants’ perceptions.[26] It is likely that participants’ opinions would have been different if they were given more information, such as a statement indicating the patient made a written request for assisted dying before losing decision-making capacity. Likewise, providing participants with background information and definitions of different end-of-life practices such as physician-assisted suicide and euthanasia in the case of incompetent patients would likely have altered the responses. Lastly, the statistical power may have been insufficient to detect significant differences in secondary outcomes, notably differences in perceptions about CDS. Future work should replicate these findings in a clinical cluster-randomized trial.
This study expands upon the limited existing literature on the perceptions of physicians and surrogates about the use of assisted dying and CDS in patients with advanced dementia. Physicians were more opposed to the use of assisted dying than surrogates, and about half of participants in both groups perceived CDS as an appropriate option in advanced dementia. In general, there is a clear need to improve end-of-life care in this patient population. However, due to the practical, ethical and legal issues associated with performing assisted dying and CDS for patients who lack decision-making capacity, it remains unclear whether these practices would help accomplish this goal. Early goals of care discussions can promote decisions that align with the patient’s preferences and the use of standard palliative medications.[27,28]
Acknowledgments:
The investigators wish to thank the data management team (Daniel Gfeller and Kathrin Heiniger), the organizations’ staff who helped with recruitment, Marius C Vollberg for statistical guidance, and the participants who gave their time to this study.
Funding Sources: This work was supported by the following grants: the Research in Palliative Care funding program [PC 22/14], which was offered jointly by the Swiss Academy of Medical Sciences, the Stanley Thomas Johnson Foundation, and the Gottfried and Julia Bangerter-Rhyner Stiftung; the Swiss National Science Foundation [P1ZHP3_171747 to AJL]; and the United States National Institute of Health - National Institute on Aging [NIH-NIA R01 AG032982, NIH-NIA R01 AG043440, NIH-NIA K24AG033640 to SLM].
Appendix A.
Table 1.
Association between Being a Relative Versus a Proxy and Agreement with the Use of Assisted Dying in Advanced Dementiaa
| Characteristic | Total No.
(%) of Surrogates with Characteristic (N=156) |
No. (%) of
Surrogates Agreeing with Assisted Dying (N=79) |
Odds Ratiob for Agreement
with Assisted Dying (95% Confidence Interval) |
|
|---|---|---|---|---|
| Characteristic Present |
Characteristic Absent |
Adjustedc | ||
| Relatives (versus proxies) | 94 (60.3) | 54 (34.6) | 25 (16.0) | 2.00 (1.04, 3.83) |
Surrogates were 50.6% (N=79/156) agreeing with the use of assisted dying in advanced dementia.
Logistic regression was used in all analyses, and unadjusted and adjusted odds ratio were computed.
After accounting for age, gender, religion, and prior decisions about antibiotics/artificial hydration uses, no variables were significant at P < 0.10 in bivariable analyses, except for the association between being a relative versus proxy and agreement with the use of assisted dying in advanced dementia.
Table 2.
Association between Being a Relative Versus a Proxy and Agreement with the Use of Continuous Deep Sedation in Advanced Dementiaa
| Characteristic | Total No.
(%) of Surrogates with Characteristic (N=149) |
No. (%) of
Surrogates Agreeing with Continuous Deep Sedation (N=70) |
Odds Ratiob for Agreement
with Continuous Deep Sedation (95% Confidence Interval) |
|
|---|---|---|---|---|
| Characteristic Present |
Characteristic Absent |
Adjustedc | ||
| Relatives (versus proxies) | 92 (61.7) | 52 (34.9) | 18 (12.1) | 2.82 (1.41, 5.64) |
Surrogates were 47.0% (N=70/149) agreeing with the use of continuous deep sedation in advanced dementia.
Logistic regression was used in all analyses, and unadjusted and adjusted odds ratio were computed.
After accounting for age, gender, religion, and prior decisions about antibiotics/artificial hydration uses, no variables were significant at P < 0.10 in bivariable analyses, except for the association between being a relative versus proxy and agreement with the use of continuous deep sedation in advanced dementia.
Footnotes
Statement of Ethics: The ethics commission of the canton of Zurich approved the study’s conduct (KEK-ZH-No. 2015-0626). All participants provided written informed consent. The authors have no ethical conflicts to disclose.
Disclosure Statement: The authors have no conflicts of interest to declare.
References
- 1.Federal Statistical Office FSO. Cause of death statistics: death and its main causes in Switzerland, 2015. Available from https://www.bfs.admin.ch/bfsstatic/dam/assets/3742832/master. Accessed April 26, 2018.
- 2.World Health Organization. The epidemiology and impact of dementia: current state and future trends. Available from http://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_epidemiology.pdf. Accessed April 26, 2018.
- 3.Hendriks SA, Smalbrugge M, Hertogh CMPM, van der Steen JT Dying with dementia: symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage. 2014;47(4):710–720. [DOI] [PubMed] [Google Scholar]
- 4.Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–1538. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.van der Steen JT, Deliens L, Koopmans RTCM, Onwuteaka-Philipsen BD Physicians’ perceptions of suffering in people with dementia at the end of life. Palliat Support Care. 2016;15(5):587–599. [DOI] [PubMed] [Google Scholar]
- 6.Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, Cohen J. Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA. 2016;316(1):79–90. [DOI] [PubMed] [Google Scholar]
- 7.Radbruch L, Leget C, Bahr P, et al. Euthanasia and physician-assisted suicide: a white paper from the European Association for Palliative Care. Palliat Med. 2016;30(2):104–116. [DOI] [PubMed] [Google Scholar]
- 8.Swiss Academy of Medical Sciences. Medical ethical guidelines: management of dying and death. Available from https://www.samw.ch/en/Publications/Medical-ethical-Guidelines.html. Accessed June 7, 2018. [DOI] [PubMed]
- 9.Li M, Watt S, Escaf M, et al. Medical assistance in dying — implementing a hospital-based program in Canada. N Engl J Med. 2017;376(21):2082–2088. [DOI] [PubMed] [Google Scholar]
- 10.Neil F Assisted dying practice in Benelux: whitepaper 1. Available from http://www.dyingforchoice.com/resources/fact-files/assisted-dying-benelux-whitepaper-1. Accessed April 15, 2018.
- 11.Tomlinson E, Spector A, Nurock S, Stott J. Euthanasia and physician-assisted suicide in dementia: a qualitative study of the views of former dementia carers. Palliat Med. 2015;29(8):720–726. [DOI] [PubMed] [Google Scholar]
- 12.Kouwenhoven PS, Raijmakers NJ, van Delden JJ, et al. Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public. BMC Medical Ethics. 2015;16(7):201–207. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Tomlinson E, Stott J. Assisted dying in dementia: a systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these. Int J Geriatr Psychiatry. 2014;30(1):10–20. [DOI] [PubMed] [Google Scholar]
- 14.Bolt EE, Snijdewind MC, Willems DL, van der Heide A, Onwuteaka-Philipsen BD. Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living? J Med Ethics. 2015;41(8):592–598. [DOI] [PubMed] [Google Scholar]
- 15.Bravo G, Rodrigue C, Arcand M, et al. Quebec physicians’ perspectives on medical aid in dying for incompetent patients with dementia. Can J Public Health. 2018:1–11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Miccinesi G, Rietjens JAC, Deliens L, et al. Continuous deep sedation: physicians’ experiences in six European countries. J Pain Symptom Manage. 2006;31 (2):122–129. [DOI] [PubMed] [Google Scholar]
- 17.Ziegler S, Schmid M, Bopp M, Bosshard G, Puhan MA. Continuous deep sedation until death — a Swiss death certificate study. J Gen Intern Med. 2018;10(2):1–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Cherny NI, Radbruch L, The Board of the European Association for Palliative Care. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009;23(7):581–593. [DOI] [PubMed] [Google Scholar]
- 19.McCarthy EP, Phillips RS, Zhong Z, Drews RE, Lynn J. Dying with cancer: patients’ function, symptoms, and care preferences as death approaches. JAGS. 2000;48(5):S110–S121. [DOI] [PubMed] [Google Scholar]
- 20.Anquinet L, Rietjens JAC, Vandervoort A, et al. Continuous deep sedation until death in nursing home residents with dementia: a case series. J Am Geriatr Soc. 2013;61 (10):1768–1776. [DOI] [PubMed] [Google Scholar]
- 21.Loizeau AJ, Theill N, Cohen SM, et al. Fact box decision-support tools reduce decisional conflict about antibiotics for pneumonia and artificial hydration in advanced dementia: a randomized controlled trial. Age Ageing. 2018;48(1):67–74. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Dierickx S, Deliens L, Cohen J, Chambaere K. Euthanasia for people with psychiatric disorders or dementia in Belgium: analysis of officially reported cases. BMC Psychiatry. 2017;17(203):1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284(19):2460–2468. [DOI] [PubMed] [Google Scholar]
- 24.Bruinsma SM, Rietjens JAC, Seymour JE, Anquinet L, van der Heide A. The experiences of relatives with the practice of palliative sedation: a systematic review. J Pain Symptom Manage. 2012;44(3):431–445. [DOI] [PubMed] [Google Scholar]
- 25.Ziegler S, Merker H, Schmid M, Puhan MA. The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals’ emotional well-being: a systematic review. BMC Palliative Care. 2017;16(30):1–18. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Magelssen M, Supphellen M, Nortvedt P, Materstvedt LJ. Attitudes towards assisted dying are influenced by question wording and order: a survey experiment. BMC Medical Ethics. 2016;17(24):1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Mitchell SL, Palmer JA, Volandes AE, Hanson LC, Habtemariam D, Shaffer ML. Level of care preferences among nursing home residents with advanced dementia. J Pain Symptom Manage. 2017;54(3):340–345. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Loizeau AJ, Shaffer ML, Habtemariam DA, Hanson LC, Volandes AE, Mitchell SL. Association of prognostic estimates with burdensome interventions in nursing home residents with advanced dementia. JAMA Intern Med. 2018;178(7):922–929. [DOI] [PMC free article] [PubMed] [Google Scholar]