Resolution on Assisted Dying and Justification
Resolution on Assisted Dying
Adopted by APA Council of Representatives in August 2017. (Suggested citation is included with references.)
Whereas the issue of assisted dying is complex, involving areas of ethics, religion, medicine, psychology, sociology, economics, the law, public policy, and other fields; and
Whereas in the United States there is significant social stratification related to diversity, i.e. age, culture, disability status, ethnicity, gender identity, geographic location, health status, immigration status, marital status, race/ethnicity, religion, sex, sexual orientation, socioeconomic status, and veteran status (Canetto, 2011; Payne, 2016; Sue, 2001) ; and
Whereas these differences in our society are associated with an equally diverse range of views regarding assisted dying (Crawley, 2006; Gallup, 2016; Pew Research Center, 2013); and
Whereas in the United States decisions about assisted dying are made in the context of social devaluation of marginalized groups (e.g., Lund, Nadorff, Winer, & Seader, 2016) and serious social inequities in access to resources such as basic medical care; and
Whereas autonomy is an important guiding principle in the law and in psychological and medical aspects of decision-making, but in and of itself is insufficient to capture the full range of complex medical, familial, social, financial, psychological, cultural, spiritual (Chochinov, 2002; Steck, Egger, Maessen, Reisch, & Zwahlen, 2013) , and legal issues ( Washington et al. v. Glucksberg et al., 1997) involved in the practice of assisted dying; and
Whereas public support for assisted dying ranges from 47-69%, but this support is weakest among groups who express concerns about being pressured to die (i.e., older adults, people with disabilities, people with less education, women, and racial and ethnic minorities) (Gallup, 2016; National Council on Disability, 1997; Pew Research Center, 2016); and
Whereas reasonable, well-informed people starting from different positions about costs and gains associated with assisted dying disagree about the potential effects of legalizing the practice; and
Whereas people with different values and priorities can reach different conclusions about the advisability of assisted dying; and
Whereas some evidence suggests that there are fluctuations in the will to live (Chochinov, Tataryn, Clinch, & Dudgeon, 1999; Fried et al., 2006; Kissane, 2004) and in wishes regarding life-sustaining treatments (Emanuel, Fairclough, & Emanuel, 2000); and
Whereas pain, demoralization, and clinical depression are frequently unrecognized and under-treated, which can lead to suffering that may result in requests for assisted dying ( Berghmans & Lossignol, 2012; Ganzini, Goy, & Dobscha, 2008; Kissane, 2004; Kissane, 2012; Quill & Cassel, 2003); and
Whereas evidence suggests that some people rescind their requests for assisted dying when they receive palliative and comprehensive care (Chochinov, 2002; De Lima et al., 2017; Ganzini et al., 2000); and
Whereas psychological, familial, social, and financial factors seem to be more important than physical factors in requests for assisted dying (Emanuel, Onwuteaka-Philpsen, Urwin, & Cohen , 2016; Oldham, Dobscha, Goy, & Ganzini, 2011; Ohnsorge, Gudat, & Rehmann-Sutter, 2014; Smith, Harvath, Goy, & Ganzini, 2015); and
Whereas limited empirical data exist to determine the effects of assisted dying on survivors and on society (Cooke et al., 1998; Emanuel, Fairclough, & Emanuel, 2000; Ganzini, Goy, Dobsch, & Prigerson, 2009; Swarte, et al., 2003); and
Whereas the empirical database, legal developments, and policy discourse related to assisted dying are evolving rapidly;
Therefore, be it resolved that the American Psychological Association take a position that neither endorses nor opposes assisted dying at this time.
However,
Given that psychologists have many areas of competence, including assessment, intervention, teaching, consultation, research, and advocacy skills that could potentially enlighten the discourse about assisted dying, palliative and end-of-life treatment, and support for people with serious advanced illness and their care partners; and
Given that psychologists could be instrumental in helping health care providers to understand and cope with the concerns and needs of people with serious advanced illness and their care partners; and
Given that psychologists may receive requests to be involved in the education of various groups regarding assisted dying; and
Given that assisted dying is legal in multiple states and the District of Columbia, and psychological or psychiatric assessment and consultation is required under certain circumstances; and
Given that practicing psychologists may be part of interprofessional palliative care and hospice teams including ones exploring requests for assisted dying;
Let it be further resolved that the American Psychological Association will assist in preparing the profession to address the issue of assisted dying by taking the following actions:
Advocate for quality palliative and end-of-life care for all individuals; and
Encourage and promote the development of research on assisted dying; and
Monitor legal, policy, and research developments that may require or encourage psychologists to involve themselves in assisted dying cases; and
Promote policies that reduce suffering that could lead to requests for assisted dying; and
Promote psychologists' involvement in research on ethical dilemmas faced by clinicians and researchers dealing with issues related to assisted dying; and
Promote psychologists' participation in interprofessional teams and ethics committees involved with reviewing end-of-life requests; and
Encourage psychologists to obtain training in ethics (e.g., medical ethics, professional codes of conduct) in the context of diversity, as applied to palliative and end-of-life decisions and care; and
Encourage psychologists to inform themselves about criminal and civil laws that have bearing on assisted dying in the states in which they practice; and
Encourage psychologists to recognize the powerful influence they may have with individuals who are considering assisted dying; and
Encourage psychologists to identify factors leading to assisted dying requests (including clinical depression, demoralization, levels of pain and suffering, adequacy of comfort care, and other internal and external variables) and to fully explore alternative approaches (including hospice/palliative care, refusal or discontinuation of life-sustaining measures, and other end-of-life options such as voluntarily stopping eating and drinking) for clients considering assisted dying; and
Encourage psychologists to be aware of their own views about assisted dying, including recognizing possible biases about quality of life and entitlement to resources based on age, culture, disability status, ethnicity, gender identity, geographic location, health status, immigration status, marital status, race/ethnicity, religion, sex, sexual orientation, socioeconomic status, and veteran status of the individual requesting assisted dying ; and
Encourage psychologists to be especially sensitive to the social and cultural biases which may result in some groups and individuals being perceived by others, and/or being encouraged to perceive themselves, as more expendable and less deserving of continued life (e.g., as above).
Suggested Citation
References
Berghmans, T. & Lossignol, D. (2012). Euthanasia: From ethical debate to clinical reality. European Respiratory Journal, 40 , 804-805. doi: 10.1183/09031936.00039112
Canetto, S. S. (2011). Legal physician-assisted suicide in the U.S.: Issues, roles and implications for clinicians. In S. H. Qualls & J. Kasl-Godley (Eds.), End of life care and bereavement (pp. 263-284). New York: Wiley.
Chochinov, H. M. (2002). Dignity-conserving care—a new model for palliative care: Helping the patient feel valued. Journal of the American Medical Association, 287, 2253-2260.
Chochinov, H. M., Tataryn, D., Clinch, J. J., & Dudgeon, D. (1999). Will to live in the terminally ill. Lancet, 354 , 816-819. doi:10.1001/jama.287.17.2253
Cooke, M., Gourlay, L., Collette, L., Boccellari, A., Chesney, M. A., & Folkman, S. (1998). Informal caregivers and the intention to hasten AIDS-related death. Archives of Internal Medicine, 158 , 69-75.
Crawley, L. M. (2006). Racial, cultural, and ethnic factors influencing end-of-life care. Journal of Palliative Medicine, 8 (suppl. 1), s58-s69. doi:10.1089/jpm.2005.8.s-58
De Lima, L., Woodruff, R., Pettus, K., Downing, J., Buitrago, R., Munyoro, E., Venkateswaran, C., Bhatnagar, S., & Radbruch, L. (2017). International association for hospice and palliative care position statement: euthanasia and physician-assisted suicide. Journal of Palliative Medicine, 20 , 8-14. doi: 10.1089/jpm.2016.0290
Emanuel, E. J., Fairclough, D. L., & Emanuel, L. L. (2000). Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. Journal of the American Medical Association, 284 , 19, 2460-2468. doi:10.1001/jama.284.19.2460
Emanuel, E. J., Onwuteaka-Philpsen, B. D., Urwin, J. W., & Cohen, J. (2016). Attitudes and practices of euthanasia and physician-assisted suicide in the United states, Canada, and Europe. Journal of the American Medical Association, 316 (1), 79-90. doi:10.1001/jama.2016.8499
Fried, T. R., Byers, A. L., Gallo, W. T., Van Ness, P. H., Towle, V. R., O'Leary, J. R., & Dubin, J. A. (2006). Prospective study of health status preferences and changes in preferences over time in older adults. Archives of Internal Medicine , 166 (8), 890-895. doi: 10.1001/archinte.166.8.890
Gallup. (2016). Euthanasia Still Acceptable to a Solid Majority in U.S. Retrieved from http://www.gallup.com/poll/193082/euthanasia-acceptable-solid-majority.aspx
Ganzini, L., Nelson, H. D., Schmidt, T. A., Kraemer, D. F., Delorit, M. A., & Lee, M. A. (2000). Physicians' experiences with the Oregon Death with Dignity Act. New England Journal of Medicine, 342, 557-563. doi: 10.1056/NEJM200002243420806
Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Prevalence of depression and anxiety in patients requesting physicians' aid in dying: cross sectional survey. British Medical Journal, 377, a1682. doi: 10.1136/bmj.a1682
Ganzini, L., Goy, E. R., Dobscha, S. K., & Prigerson, H., (2009). Mental health outcomes of family members of Oregonians who request physician aid in dying. Journal of Pain and Symptom Management, 38 (6), 807-815. doi: 10.1016/j.jpainsymman.2009.04.026.
Kissane, D. W. (2004). The contribution of demoralization to end of life decision making. Hastings Center Report , 34 (4), 21-31. doi: 10.2307/3528690
Kissane, D. W. (2012). The relief of existential suffering. Archives of Internal Medicine, 172 (19), 1501-1505. doi: 10.1001/archinternmed.2012.3633
Lund, E. M., Nadorff, M. R., Winer, E. S., & Seader, K. (2016). Is suicide an option?: The impact of disability on suicide acceptability in the context of depression, suicidality, and demographic factors. Journal of Affective Disorders, 189, 25-35. doi: 10.1016/j.jad.2015.08.028
National Council on Disability. (1997). Assisted Suicide: A Disability Perspective Position Paper. Retrieved from http://www.ncd.gov/publications/1997/03241997
Ohnsorge, K., Gudat, H., & Rehmann-Sutter, C. (2014). What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care. BMC Palliative Care, 13 , 38. doi: 10.1186/1472-684X-13-38
Oldham RL, Dobscha SK, Goy ER, Ganzini L. (2011). Attachment styles of Oregonians who request physician-assisted death. Palliative Support Care, 9 (2), 123-8. doi: 10.1017/S1478951510000660.
Payne, R. (2016). Racially associated disparities in hospice and palliative care access: Acknowledging the facts while addressing the opportunities to improve. Journal of Palliative Medicine, 19 (2). doi: 10.1089/jpm.2015.0475
Pew Research Center (2013). Views on end-of-life medical treatments. Retrieved from http://pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments
Pew Research Center (2015). California legalizes assisted suicide amid growing support for such laws. Retrieved from http://www.pewresearch.org/fact-tank/2015/10/05/california-legalizes-assisted-suicide-amid-growing-support-for-such-laws/
Quill, T. E. & Cassel, C. K. (2003). Professional organizations' position statements on physician-assisted suicide: A case for neutrality. Annals of Internal Medicine, 138 , 208-211. doi: 10.7326/0003-4819-138-3-200302040-00013
Smith, K. A., Harvath, T. A., Goy, E. R., & Ganzini, L. (2015). Predictors of pursuit of physician-assisted death. Journal of Pain and Symptom Manage, 49 (3), 555-61. doi: 10.1016/j.jpainsymman.2014.06.010
Steck, N., Egger, M., Maessen, M., Reisch, T., & Zwahlen, M. (2013). Euthanasia and assisted suicide in selected European countries and US states: systematic literature review. Medical Care, 51, 938-944. doi: 10.1097/MLR.0b013e3182a0f427
Sue, D. W. (2001). Multidimensional facets of cultural competence. The Counseling Psychologist , 29 (6), 790-821. doi: 10.1177/0011000001296002
Swarte, N. B., van der Lee, M. L., van der Bom, J. G., van den Bout, J., & Heintz, P. M. (2003). Effects of euthaniasia on the bereaved family and friends: A cross sectional study. British Medical Journal, 327 (7408), 189. doi: 10.1136/bmj.327.7408.189
Washington et al. v. Glucksberg et al., 521 U.S. 702 (1997).
Justification Resolution on Assisted Dying
Purpose and Rationale for Resolution and Relevance to Psychology
Assisted dying is currently legal in six states, either through statute or court decision: Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision), Vermont (2013, legislation), California (2015, legislation) and Colorado (2016, ballot initiative). The District of Columbia is the seventh jurisdiction to authorize the act. Because it was the first law in place, Oregon's Death with Dignity Act (DWDA) has been the model for other states. According to the Oregon Public Health Division, the DWDA allows Oregon residents aged 18+, who have been diagnosed with a terminal illness and given a prognosis of six months or less to live, to obtain a prescription for lethal medication from their physician and self-administer the medication. The person must be “capable” of making and communicating health care decisions, alternatives such as palliative care, hospice care, and pain control must be offered, and there are several steps that must be followed before the prescription will be written; one of which is that if either the prescribing or consulting physician “believes the patient's judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.” The DWDA specifies that “ending one's life in accordance with the law does not constitute suicide” and “specifically prohibits euthanasia, where a physician or other person directly administers a medication to end another's life” (see https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/requirements.pdf ).
Public support for a medical assisted dying option has been stable since the 1990s (Emanuel, Onwuteaka-Philipsen, Urwin, & Cohen, 2016). Depending on the wording of survey questions, support ranges from 47-69%, but this support is weakest among lower social and economic status groups who, having experienced barriers in access to care and other resources, have concerns about being pressured to die (i.e., women, racial and ethnic minorities, people with disabilities, and people with less education, ) ( Canetto, 2011; Emanuel, Onwuteaka-Philpsen, Urwin, & Cohen, 2016; Gallup, 2016; Nirappil, 2016; National Council on Disability, 1997; Pew Research Center, 2013).
Individuals with serious advanced illness often express a wish to die, and/or desire to receive assistance in dying, regardless of its legality. This reaction to suffering in the context of a life-threatening condition, from which the individual can see no alternative other than to accelerate death, may be expressed spontaneously or after being asked about it, but it is distinguished from acceptance of impending death or from a wish to die naturally (Balaguer et al., 2016). Interest in assisted dying may arise in response to one or more factors (Ohnsorge, Gudat, & Rehmann-Sutter, 2014), including existing or anticipated physical symptoms (Ganzini, Goy & Dobscha 2009), psychological distress (e.g. depression, demoralization, hopelessness, fears) (Meier et al., 2003), existential suffering (e.g. loss of meaning in life) (Kissane, 2012), and social or interpersonal aspects (e.g. feeling that one is a burden, need for reassurance that one is still loved and wanted)(Canetto & Hollenshead, 1999-2000; Malpas, Mitchell, & Johnson, 2012; Monforte-Royo et al., 2012; Muskin, 1998 ).
Alternatives to assisted dying include palliative care/hospice, refusal or discontinuation of life-sustaining treatments, voluntary cessation of eating or drinking, and palliative sedation, all of which require awareness of options and decisional capacity of the individual or proxy (Emanuel, von Gunten, & Ferris, 1999). Palliative care can mitigate many of the factors that drive a patient's wish to die. In addition to aggressive symptom management, and management of psychological, interpersonal, and spiritual distress, palliative care includes attention to care tenor — a fundamental stance toward patients imbued with respect and affirmation — which can profoundly shape an individual's perspective, sense of self-worth, feelings of being a burden, and even will to live (Chochinov, 2014; Monforte-Royo et al., 2012).
Many health care professionals feel unprepared or uncertain about how to respond to requests for assisted dying. They may be personally opposed to any action to hasten an individual's death or they may view such requests as transient or unreasonable reactions that are not responsive to treatment or do not warrant thorough evaluation, and thus, may discount or ignore the statements (Hudson et al., 2006). Health care professionals working with individuals with advanced illness need to compassionately ascertain the reasons, meanings, emotions, functions, and the context of the request for assisted dying. They must explore contributing factors in the context of the individuals' lives and provide a compassionate, competent, and professional response. Providers need to facilitate conversations with these individuals, their health care providers, and their care partners (families of origin or families of choice) regarding these wishes and associated reasoning (Branigan, 2015). Psychologists are well-positioned to address these issues.
Psychologists in health care settings serving individuals with advanced illness and their care partners may find themselves encountering expressions of desire for hastened death and requests for assisted dying. Psychologists have the legal right to decline to participate in assisted dying activities; however when it is an established patient requiring continued care, the psychologist must meet the ethical code of non-abandonment and make appropriate referrals. Psychologists have theory-driven, evidenced-based bodies of knowledge and skills relevant to responding to these requests, addressing the underlying contributing factors, and providing support to care partners. Nevertheless, psychologists may be in need of additional guidance and support in working with individuals near the end-of-life (Canetto, 2011; Werth, 1999).
However, because it is the discretion of the physician and not a requirement of the law that a mental health referral be made, concerns have arisen about whether non-psychiatrically trained physicians are adequately sensitive to the role of depression and other mental health disorders in assisted dying requests (Werth, Benjamin, & Farrenkopf, 2000). Guidelines regarding how to determine if a mental health evaluation is necessary have been developed, but are not detailed and have not been assessed for validity (Orentlicher, Pope, & Rich, 2016; Young et al., 1997).
Decisions about assisted dying or about alternatives to assisted dying (e.g., palliative/hospice care; refusal, or discontinuation of, life-sustaining interventions) require decisional capacity on the part of the patient. Psychologists and psychiatrists have an evaluative role in determining an individual's capacity to end life under assisted dying legislation, should a physician suspect that a mental health condition is impairing an individual's judgment or decisional capacity. Furthermore, whereas tests and assessments exist to evaluate decisional capacity and diagnosable disorders, they may not be validated or reliable in their use with individuals near the end-of-life considering assisted dying (Jull-Patterson, 2016). In addition, although psychologists have skills and knowledge in evaluating decision-making capacity, they may benefit from additional training in this area, as one's own values and experiences can affect capacity evaluations for assisted dying (e.g., Johnson, Cramer, Gardner, & Nobles, 2015).
Psychologists have opportunities to be involved in the development of public, institutional and organizational policies to raise awareness and access to mental health and palliative care services. They can contribute to the development of validated, culturally sensitive, and informed measurement tools and to the improvement of capacity assessments for assisted dying. They can develop standards for decisional capacity specific to requesting assisted dying (Johnson, Cramer, Conroy, & Gardener, 2014) and guidelines for referrals to a mental health professional. Psychologists can be instrumental in the development, evaluation, and implementation of interventions for modifiable conditions that trigger the desire for assisted dying, such as depression, fears of burdening care partners, and poor communication among care partners or with care providers. They can be a useful addition to interprofessional teams responding to requests from patients for assisted dying, by helping these teams understand the factors behind the patient's request and by assisting in supportive conversations with the patient and their care partners.
Importance to Psychology and Society as a Whole
Questions about assisted dying are of critical importance because they highlight how our society chooses to care for individuals at the culmination of their life, when they may be most vulnerable and most in need of support. Individuals who ask for assistance in controlling the circumstances of their death express a desire for autonomy, self-sufficiency, and empathy ( Ganzini, Goy, & Dobscha, 2009; Monforte-Roy, Villavicencio-Chavez, Tomas-Sabado, Mahtani-Chugani, & Balaguer, 2012) . In essence, they ask to have some degree of control so that their dying can proceed in a way that is consistent with their preferences and values.
Psychologists play an important role in assuring that an individual's preferences are recognized by care partners and health care providers. Psychologists will encounter individuals who are contemplating assisted death and must be prepared to provide support and intervention to those individuals or to their care partners. Moreover, as a discipline, psychology has much expertise to share. Our research and scholarship on interpersonal relationships, decision-making, emotions, and communication, to name a few areas, can inform practice and policy. In sum, psychologists have an important role to play as both producers and consumers of knowledge in this area (Kasl-Godley, King, & Quill, 2014).
Representative Scientific and Empirical Findings Related to the Resolution
The quality and amount of existing research on end-of-life decision-making is limited. Therefore , there are multiple opportunities for extending psychological knowledge about end-of-life and about decisions that may affect the timing of death. The proposed resolution serves as a clarion call for psychological research in this area.
Data are available on individuals requesting medical assistance with dying and using that assistance where it is legal, and generally have been interpreted as indicating no widespread abuse of the practice (e.g., Coombs Lee, 2014; Emanuel, Onwuteaka, Philipsen, Urwin, & Cohen, 2016; Gopal, 2015), although others challenge this conclusion (Callahan, 2008; Hendin & Foley, 2008). Based on data from Oregon and Washington state, the typical person who chooses death with assistance under a state law is a well-educated person aged 60-85 years old who is living with cancer and is enrolled in hospice or palliative care (Blanke, LeBlanc, Herhsman, Ellis, & Meyskens, 2017). However, across countries, there is wide variation in the extent of this practice and the specific characteristics of those who died with medical assistance. For instance, in Europe, assisted dying is legal for individuals with nonterminal physical or psychological reasons and to minors (Steck, Egger, Maessen, Reisch, & Zwahlen, 2013), and in the Netherlands, a higher proportion of women than men with psychiatric disorders have received euthanasia or assisted dying (Kim, De Vries, & Peteet, 2016).
To date there is no empirical evidence to suggest that vulnerable individuals have been receiving euthanasia or physician-assisted dying at rates higher than the general population (Emanuel et al., 2016). However, in a letter to the editor of JAMA in response to the article by Emanuel and colleagues, Stevens and Toffler (2016) query how abuses or the rate at which they occurred can be determined, if the prescribing physician was rarely present when the drugs were taken. A 2011 review found inadequate reporting safeguards for euthanasia and assisted dying nationally and internationally, such that abuses or misuses were neither reported nor appropriately addressed (Pereira, 2011).
Reasons most commonly given for requesting assisted dying are related to desire for control and autonomy (Emanuel et al., 2016; Steck, Egger, Maessen, Reisch, & Zwahien, 2013; Gamondi, Pott, & Payne, 2013). Requests for assisted dying also are frequently motivated by depression and inability to engage in enjoyable activities (Smith, Harvath, Goy, & Ganzini, 2015). Terminally ill patients with depressive symptoms are more likely to consider assisted dying (Blank, Robison, Prigerson, & Schwartz, 2001; Emanuel et al., 2000 ). These findings suggest psychological evaluation is important, as demoralization, dyspnea (shortness of breath) and clinical depression may lead to suffering that results in requests for assisted dying (Chambaere, Cohen, Robijn, Bailey, & Deliens, 2015; Berghmans, & Lossignol, 2012; Gamondi, Pott, & Payne, 2013; Emanuel et al., 2000; Ohnsorge, Gudat, & Rehmann-Sutter, 2014; O'Mahony et al., 2005 ).
Limited empirical data exist to determine the effects of assisted dying on survivors (Ganzini, Goy, Dobscha, & Prigerson, 2009; Swarte, van der Lee, van der Bom, van den bout, & Heintz, 2003). In a 2009 study of the mental health outcomes of family members of Oregonians who requested physician assisted dying, investigators found that the pursuit of assisted dying did not have negative effects on surviving family members and appeared to be associated with greater preparation for, and acceptance of, death (Ganzini et al., 2009). Family members of Oregonians who received a lethal prescription were more likely to believe their loved one's choices were honored and less likely to have regrets about how their loved one died (Ganzini et al., 2009). In a cross sectional study conducted in the Netherlands, 189 bereaved family members of cancer patients who died as a result of assisted dying reported fewer traumatic grief symptoms, less current feeling of grief, and less post-traumatic stress than family members of patients who died of natural causes (Swarte et al., 2003). To the best of our knowledge, there are no empirical studies on the effect of assisted dying on society.
The extent to which the resolution is consistent with APA's core values, and the extent to which it addresses human rights, health and welfare, and ethics
The APA Resolution on Assisted Dying strives to be consistent with APA's core values and to address human rights, health and welfare, and ethics. Related to continual pursuit of excellence, the resolution points to the need for psychologists to conduct research and obtain training in areas including but not limited to: a) ethics; b) participation in interprofessional care teams; c) palliative and end-of-life care; d) knowledge of the context of diversity and social stratification related to culture, ethnicity, race, age, disability status, economic status, sex, gender, and religious differences; e) the assessment of pain, mood, and decisional capacity; and f) interventions to enhance meaning as well as to reduce feelings of burden and demoralization as each of these relate to the desire for, and decision-making regarding, assisted death. Psychologists may play an important role in informing and assessing effective communication in interprofessional teams.
The APA Resolution on Assisted Dying seeks to support social justice, awareness of human diversity, awareness of systemic biases and discrimination, and inclusion as related to considerations of assisted dying. Issues in this realm include but are not limited to: a) significant racial and ethnic disparities in end-of-life care ( Burgio et al., 2016; Crawley, 2005; Johnson, 2013); b) cultural differences in distinctive beliefs about death, attitudes toward health care systems, and values about autonomy, entitlement, and family determination (Bullock, 2011; Carr, 2011); and c) p atient-centered communication as it is vital to understanding the healthcare goals and expectations of individuals (Blanch-Hartigan et al., 2016; Epstein & Street, 2007), including consideration of assisted dying.
The Resolution further addresses social justice and inclusion by considering varying levels of health, mental health, and palliative care literacy within individuals retaining capacity to participate in medical decision-making. Shared decision-making facilitates an individual's desired level of autonomous control (Chiu, Feuz, McMahan, Miao, & Sudore, 2016; Hoffman et al., 2014), and may be even more difficult to reach within the context of low health literacy (Muscat et al., 2016). When considering health literacy, it is important to include patient empowerment, or patient autonomy and self-efficacy, as a separate yet related concept (Schulz & Nakamoto, 2013). Further, individuals seeking assisted dying may have fluctuating or diminished cognitive capacity. Psychologists working with individuals who may request assisted dying will need to understand the physical and cognitive changes occurring in diverse medical populations, and seek adequate training to evaluate delirium, depression, and decisional capacity. I t also is important to try to ascertain the treatment preferences of patients with diminished capacity in order for treatment to follow their values (ABA & APA, 2008; Vandervoort et al., 2014).
The APA Resolution on Assisted Dying strives to promote ethical action in all that psychologists do in relation to research, practice, and policy related to assisted dying (Bush, Allen, Heck, & Moye, 2015; Bush, Allen, & Molinari, 2017). Ethical considerations commonly include but are not limited to self-determination, respect for individual autonomy, professional competence, conflicts between ethics and law, and knowledge of human relations. It is important to remember that healthcare providers bring their own experiences and biases regarding end-of-life care to discussions with patients and their families (Ho, Jameson, & Pavlish, 2016). In addition, the historically patriarchal medical system may disenfranchise many people from diverse ethnic backgrounds and other diverse identities from expressing their end-of-life desires and needs. The Resolution includes advocacy for training of psychologists about the diverse populations they serve, to promote patient empowerment, and better adjust policies and practices to differing perspectives about death.
Likelihood of Constructive Impact on Public Opinion or Policy
This updated resolution, with a revised title that reflects the progression of the discussion (i.e., Assisted “Dying” instead of Assisted “Suicide”), conveys that the Association and its members are engaged in this evolving and expanding area of concern. Policy-makers' attention to the issue of Assisted Dying has increased since APA's 2001 Resolution on Assisted Suicide. At that time, only one state had a law explicitly allowing physicians to prescribe medications to patients for the purposes of hastening the person's death. As previously noted, since 2008, five additional states and the District of Columbia have legalized assisted dying, with other states considering action as well.
There are numerous opportunities at federal, state, and local levels for psychologists who are interested in assuming research, advocacy, or policy roles to advance the quality of care near the end-of-life, including addressing situations that may involve assisted dying. Psychologists can continue to work with other health care professionals and managers, faith leaders, researchers, policymakers, funders of health care, and the public at large to improve policy and practice regarding end-of-life care and decision-making. The goal of widespread quality care near the end-of-life, including addressing requests for assisted dying, is attainable; however, realization of that goal will require many system-wide changes in attitudes, policies, and actions. The proposed resolution serves as a call for psychologists to become involved in critical policy issues related to end-of-life care in general and, for some psychologists, that might include activity related to assisted dying.
Implementation
The resolution will be broadly disseminated to APA constituencies, national health and professional organizations, and policy makers active in this area.
References
American Bar Association & American Psychological Association. (2008). Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists . Retrieved from http://www.apa.org/pi/aging/programs/assessment/capacity-psychologist-handbook.pdf
Balaguer, A., Monforte-Royo, C., Porta-Sales, J., Alonso-Babarro, A., Altisent, R., Aradilla-Herrero, A., et al. (2016). An international consensus definition of the wish to hasten death and its related factors. PloS ONE 11(1), e0146184. doi:10.1371/journal.pone.0146184
Berghmans, T. & Lossignol, D. (2012). Euthanasia: From ethical debate to clinical reality. European Respiratory Journal, 40 , 804-805. doi: 10.1183/09031936.00039112
Blanch-Hartigan, D., Chawla, N., Moser, R. P., Finney Rutten, L. J., Hesse, B. W., & Arora, N. K. (2016). Trends in cancer survivors' experience of patient-centered communication: Results from the Health Information National Trends Survey (HINTS). Journal of Cancer Survivorship, 10(6) , 1067-1077. doi: 10.1007/s11764-016-0550-7
Blank, K., Robison, J., Prigerson, H., & Schwartz, H. I. (2001). Instability of attitudes about euthanasia and physician assisted suicide in depressed older hospitalized patients. General Hospital Psychiatry, 23, 326-332. doi: 10.1016/S0163-8343(01)00160-8
Blanke, C., LeBlanc, M., Hershman, D., Ellis, L., & Meyskehns, F. (2017). Characterizing 18 years of the Death With Dignity Act in Oregon. Journal of the American Medical Association Oncology. Advanced online publication. doi:10.1001/jamaoncol.2017.0243
Branigan, M. (2015). Desire for hastened death: exploring the emotions and the ethics. Current opinion in supportive and palliative care , 9 (1), 64-71.
Bullock, K. (2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care , 7 (1), 83-98. doi: 10.1080/15524256.2011.548048
Burgio, K. L., Williams, B. R., Dionne-Odom, J. N., Redden, D. T., Noh, H., Goode, P. S., Kvale, E., Bakitas, M., & Bailey, F. A. (2016). Racial differences in processes of care at end of life in VA medical centers: Planned secondary analysis of data from the BEACON trial. Journal of Palliative Medicine , 19 (2), 157-163. doi: 10.1089/jpm.2015.0311
Bush, S. S., Allen, R. S., Heck, A. L., & Moye, J. (2015). Ethical issues in geropsychology: Clinical and forensic perspectives. Psychological Injury and Law, 8(4) , 348-356. doi: 10.1007/s12207-015-9242-2
Bush, S. S., Allen, R. S., & Molinari, V. (2017). Ethical practice in geropsychology . Washington, DC: American Psychological Association.
Callahan, D. (2008). Organized obfuscation: Advocacy for physician-assisted suicide. The
Hastings Center Report , 38 (5), 30-32
Canetto, S. S. (2011). Legal physician-assisted suicide in the U.S.: Issues, roles and implications for clinicians. In S. H. Qualls & J. Kasl-Godley (Eds.), End of life care and bereavement (pp. 263-284). New York: Wiley.
Canetto, S. S. & Hollenshead, J. D. (1999-2000). Gender and physician-assisted suicide: An analysis of the Kevorkian cases, 1990-1997. Omega--Journal of Death and Dying, 40 , 165-208.
Carr, D. (2011). Racial differences in end-of-life planning: Why don't Blacks and Latinos prepare for the inevitable? OMEGA-Journal of Death and Dying , 63 (1), 1-20. doi: 10.2190/OM.63.1.a
Chambaere, K., Cohen, J., Robijn, L., Bailey, S.K., & Deliens, L. (2015). End-of-life decisions in individuals dying with dementia in Belgium. Journal of the American Geriatrics Society, 63 (2), 290-296. doi: 10.1111/jgs.13255
Chiu, C., Feuz, M.A., McMahan, R.D., Miao, Y., & Sudore, R.L. (2016). “Doctor, make my decisions”: Decision control preferences, advance care planning, and satisfaction with communication among diverse older adults. Journal of Pain and Symptom Management, 51(1) , 33-40. doi: 10.1016/j.jpainsymman.2015.07.018
Chochinov, H. M. (2014). Getting MAD (Medical Aid in Dying) in Canada. Palliative and Supportive Care, 12 , 423-424. doi: 10.1017/S1478951514001400
Crawley, L. M. (2005). Racial, cultural, and ethnic factors influencing end-of-life care. Journal of Palliative Medicine , 8 (supplement 1), s-58. doi: 10.1089/jpm.2005.8.s-58
Coombs Lee, B. (2014). Oregon's experience with aid in dying: Findings from the death with dignity laboratory. Annals of the New York Academy of Sciences, 1330 , 94-100. doi: 10.1111/nyas.12486
Emanuel, E. J., Fairclough, D. L., & Emanuel, L. L. (2000). Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. Journal of the American Medical Association, 284 , 19, 2460-2468. doi:10.1001/jama.284.19.2460
Emanuel, E. J, Onwuteaka-Philpsen, B. D., Urwin, J. W., & Cohen, J. (2016). Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. Journal of the American Medical Association, 316 (1), 79-90. doi:10.1001/jama.2016.8499
Emanuel, L. L., von Gunten, C. F., & Ferris, F. D. (1999). The Education for Physicians on End-of-life Care (EPEC) curriculum. Retrieved from http://endoflife.northwestern.edu/goals_of_care/module7.pdf
Epstein, R. M. & Street, R. L. (2007) Patient-centered communication in cancer care: Promoting healing and reducing suffering. (NIH Publication No. 07-6225) Bethesda, MD: National Cancer Institute.
Gallup. (2016). Euthanasia still acceptable to solid majority in U.S . Retrieved from: http://www.gallup.com/poll/193082/euthanasia-acceptable-solid-majority.aspx
Gamondi, C., Pott, M., & Payne, S. (2013). Families' experiences with patients who died after assisted suicide: A retrospective interview study of southern Switzerland. Annals of Oncology, 24 , 1639-1644. doi: 10.1093/annonc/mdt033
Ganzini, L., Goy, E. R., & Dobscha, S. K. (2009). Oregonians' reasons for requesting physician aid in dying. Archives of Internal Medicine, 169 , 489-492. doi: 10.1001/archinternmed.2008.579
Ganzini, L., Goy, E. R., Dobscha, S. K., & Prigerson, H. (2009). Mental health outcomes of family members of Oregonians who request physician aid in dying. Journal of Pain and Symptom Management, 38 (6), 807-815. doi: 10.1016/j.jpainsymman.2009.04.026
Gopal, A. A. (2015). Physician-assisted suicide: Considering the evidence, existential distress, and an emerging role for psychiatry. Journal of the American Academy of Psychiatry and Law , 43 , 183-190.
Hendin, H., & Foley, K. (2008). Physician-assisted suicide in Oregon: A medical perspective. Michigan Law Review , 106, 1613-1640.
Ho, A., Jameson, K., & Pavlish, C. (2016). An exploratory study of interprofessional collaboration in end-of-life decision-making beyond palliative care settings. Journal of Interprofessional Care, 30 (6), 795-803. doi: 10.1080/13561820.2016.1203765
Hoffman, T.C., Legare, F., Simmons, M.B., McNamara, K., McCaffery, K., Trevena, L.J., Hudson, B., Glasziou, P., & Del Mar, C.B. (2014). Shared decision making: What do clinicians need to know and why should they bother? The Medical Journal of Australia, 201(1) , 35-39. doi: 10.5694/mja14.00002
Hudson, P. L., Schofield, P., Kelly, B., Hudson, R., Street, A., O'Connor, M., Kristjanson, L. J., Ashby, M., & Aranda, S. (2006). Responding to desire to die statements from patients with advanced disease: Recommendations for health professionals. Palliative Medicine, 20 (7), 703-710. doi: 10.1177/0269216306071814
Johnson, K. S. (2013). Racial and ethnic disparities in palliative care. Journal of Palliative Medicine , 16 (11), 1329-1334. doi: 10.1089/jpm.2013.9468
Johnson, S. M., Cramer, R. J., Conroy, M. A., & Gardener, B. O. (2014). The role and challenges for psychologists in physician assisted suicide. Death Studies, 38 (6-10), 582-588. doi: 10.1080/07481187.2013.820228
Johnson, S. M., Cramer, R. J., Gardner, B. O., & Nobles, M. R. (2015). What patient and psychologist characteristics are important in competency for physician-assisted suicide evaluations? Psychology, Public Policy, and Law, 21 (4), 420-431. doi: 10.1037/law0000058
Jull-Patterson, D. (2016). Psychology's ethics and the End of Life Option Act. California Psychological Association Newsletter, 35. Retreived from http://c.ymcdn.com/sites/www.cpapsych.org/resource/resmgr/cp/2016/Fall_Free_Article.pdf
Kasl-Godley, J.E., King, D.A., & Quill, T.E. (2014). Opportunities for psychologists in palliative care: Working with patients and families across the disease continuum. American Psychologist, 69, 364-376. doi: 10.1037/a0036735
Kim, S. Y. H., De Vries, R. G., & Peteet, J. R. (2016). Euthanasia and assisted suicide of patients with psychiatric disorders in the Netherlands 2011 to 2-14. JAMA Psychiatry, 73 , 362-368. doi:10.1001/jamapsychiatry.2015.2887
Kissane, D. W. (2012). The relief of existential suffering. Archives of Internal Medicine, 172 (19), 1501-1505. doi: 10.1001/archinternmed.2012.3633
Malpas, P. J . , Mitchell, K . , & Johnson, M. H. (2012). "I wouldn't want to become a nuisance under any circumstances"--a qualitative study of the reasons some healthy older individuals support medical practices that hasten death. New Zealand Medical Journal, 125 (1358), 9-19.
Meier, D.E., Emmons, C.A., Litke, A., Wallenstein, S., & Morrison, R. S. (2003). Characteristics of patients requesting and receiving physician-assisted death. Archives of Internal Medicine, 163 (13):1537-42. doi : 10.1001/archinte.163.13.1537
Monforte-Royo, C., Villavicencio-Chavez, C., Tomas-Sabado, J., Mahtani-Chugani, V., & Balaguer, A. (2012). What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS One , 7, e37117. doi: 10.1371/journal.pone.0037117
Muscat, D. M., Shepherd, H. L., Morony, S., Smith, S. K., Dhillon, H. M., Trevena, L., Hayen, A., Luxford, K., Nutbeam, D., & McCaffery, K. (2016). Can adults with low literacy understand shared decision making questions? A qualitative investigation. Patient Education and Counseling, 99 (11), 1796-1802. doi: 10.1016/j.pec.2016.05.008
Muskin, P. R. (1998). The request to die: Role for a psychodynamic perspective on physician-assisted suicide. Journal of American Medical Association, 279 (4), 323-328. doi:10.1001/jama.279.4.323
National Council on Disability. (1997). Assisted Suicide: A Disability Perspective Position
Paper. Retrieved from http://www.ncd.gov/publications/1997/03241997
Nirappil, F. (2016, October 17). Right-to-die law faces skepticism in nation's capital: ‘It's really aimed at old black people.' The Washington Post. Retrieved from https://www.washingtonpost.com/
Ohnsorge, K., Gudat, H., & Rehmann-Sutter, C. (2014). What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care. BMC Palliative Care, 13 , 38. doi: 10.1186/1472-684X-13-38
O'Mahony, S., Goulet, J., Kornblith, A., Abbatiello, G., Clarke, B., Kless-Siegel, S., Breitbart, W., & Payne, R. (2005). Desire for hastened death, cancer pain and depression: report of a longitudinal observational study. Journal of Pain and Symptom Management, 29 (5), 446-457. doi: 10.1016/j.jpainsymman.2004.08.010
Orentlicher, D., Pope, T. M., & Rich, B. A. (2016). Clinical criteria for physician aid in dying. Journal of Pallaitive Medicine, 19 (3), 259-262. doi: 10.1089/jpm.2015.0092
Pereira, J. (2011). Legalizing euthanasia or assisted suicide: The illusion of safeguards and controls. Current Oncology, 18 , e38-345.
Pew Research Center. (2013). Views on end-of-life medical treatments. Retrieved from http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/
Quill, T. E., Back, A. L., & Block, S. D. (2016). Responding to Patients Requesting Physician-Assisted Death Physician Involvement at the Very End of Life. Journal of the American Medical Association, 315 (3), 245-246. doi:10.1001/jama.2015.16210
Schulz, P.J., & Nakamoto, K. (2013). Health literacy and patient empowerment in health communication: The importance of separating conjoined twins. Patient Education and Counseling, 90 , 4-11.
Smith, K. A., Harvath, T. A., Goy, E. R., & Ganzini, L. (2015). Predictors of pursuit of physician-assisted death. Journal of Pain Symptom Management, 49 (3):555-61. doi: 10.1016/j.jpainsymman.2014.06.010
Steck, N., Egger, M., Maessen, M., Reisch, T., & Zwahlen, M. (2013). Euthanasia and assisted suicide in selected European countries and US states: Systematic literature review. Medical Care, 51, 938-944. doi: 10.1097/MLR.0b013e3182a0f427
Stevens, K. R. & Toffler, W. L. (2016). Euthanasia and physician-assisted suicide. [Letter to the editor]. Journal of the American Medical Association, 316 , 1599. doi:10.1001/jama.2016.14074
Swarte, N. B., van der Lee, M. L., van der Bom, J. G., van den Bout, J., & Heintz, P. M. (2003). Effects of euthaniasia on the bereaved family and friends: A cross sectional study. British Medical Journal, 327, 189. doi: 10.1136/bmj.327.7408.189
Trachsel, M., Hermann, H., & Biller-Adorno, N. (2015). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. American Journal of Alzheimer's Disease and Other Dementias, 30 (4), 360-363. doi: 10.1177/1533317514539377
Vandervoort, A., Houttekier, D., Van den Block, L., van der Steen, J., Vander Stichele, R., & Deliens, L. (2014). Advance care planning and physician orders in nursing home residents with dementia: A nationwide retrospective study among professional caregivers and residents. Journal of Pain and Symptom Management, 47(2) , 245-256. doi: 10.1016/j.jpainsymman.2013.03.009
Werth, J. (1999). When is a mental health professional competent to assess a person's decision to hasten death? Ethics & Behavior, 9 (2), 141-157. doi: 10.1207/s15327019eb0902_5
Werth, J. L., Benjamin, G. A., & Farrenkopf, T. (2000). Requests for physician-assisted death: guidelines for assessing mental capacity and impaired judgement. Psychology, Public Policy and the Law, 6 (2), 348-372. doi: 10.1037/1076-8971.6.2.348
Wilson, K. G., Dalgleish, T. L., Chochinov, H. M., Chary, S., Gagnon, P. R., MacMmillan, K., De Luca, M., O'Shea, F., Kuhl, D., & Fainsinger, R. L. (2016). Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Supportive & Palliative Care, 6 , 170–177. doi: 10.1136/bmjspcare-2013-000604
Young, E. W., Marcus, F. S., Drought, T., Mendiola, M., Ciesielski-Carlucci, C., Alpers, A., Eaton, M. Koenig, B. A., Loewy, E., Raffin, T. A., & Ross, C. (1997). Report of the Northern California Conference for Guidelines on Aid-in-Dying: definitions, differences, convergences, conclusions. Western Journal of Medicine, 166 (6), 381-388.
