Life after Death with Dignity: The Oregon Experience.
Key words: death with dignity; end of life; physician-assisted suicide; right to die; terminally ill people
Introduction to Legalization of PAS in Oregon
Physician-assisted suicide (PAS) became legal in Oregon on October 27, 1997. When the Oregon legislature sent the Death with Dignity Act back to the 1997 ballot, it passed by an even wider margin than the original ballot measure three years earlier. Legal barriers were cleared at about the same time, and this option is now available for terminally ill residents of the state of Oregon.
The original Death with Dignity Act (Ballot Measure 16) was voted on in November 1994 and passed by a 2 percent margin (51 percent to 49 percent). Many service providers and health care professionals were caught by surprise. During the next three years, the courts were the center of attention for PAS, as the Ninth Circuit Court, and later the Supreme Court, with different cases, did not prohibit PAS. The Supreme Court found that although PAS is not a constitutional right, states have the freedom to pursue this end-of-life option if they so choose.
In November 1997, Ballot Measure 51 was placed before Oregon voters to repeal the Death with Dignity Act. There was a deluge of newspaper, radio, and television coverage, making this ballot measure one of the most expensive in Oregon's history. Repeal was defeated by a 20 percent margin, and with the legal barriers gone, PAS became public policy.
The evolution of the Death with Dignity Act was almost like a living laboratory for social workers who appreciate the ebb and flow of policy, practice, and politics. Despite the ongoing controversy and continued debate with Oregon's legislature and Congress, terminally ill Oregonians can ask for drugs to end life when the law's requirements are met. The Oregon Health Division released to the public a required annual report in February 1999 that contained specific data on use of the law during the first year of availability.
Oregon is in a unique position as the only place in the world where PAS is legal. Although PAS and euthanasia are practiced openly in the Netherlands, these options are technically illegal. Social workers have an active role in many end-of-life settings such as hospice, long-term care, home care, and hospitals, and much has been learned in the first year since PAS became an option in Oregon. However, there are still many unknowns, and it may be of benefit to share Oregon's experiences and difficulties with PAS through a social work lens to assist practitioners and policymakers with end-of-life concerns that may emerge in their own communities.
What Is Known about Client and Family and PAS?
The guidelines to follow in the law are described here briefly. To qualify to receive a prescription for medication to end life, the person must be terminally ill with six months or less to live, and a second physician's opinion on diagnosis and prognosis is required. After the first oral request to start the process, a 15-day waiting period begins. A mental health consultation is not required, although either physician can request an evaluation by a psychiatrist or psychologist, and notification of family or friends is not required. A written request combined with another oral request is obtained, and a 48-hour waiting period begins. The prescription, generally barbiturates and antinausea medication, is then given to the terminally ill person and taken by mouth. Social work is not specifically mentioned in the law.
In February 1999 the Oregon Health Division reported that 23 terminally ill people in Oregon had met the law's requirements and received prescriptions for the lethal drugs. Fifteen used the prescription drugs to end their lives, six died from their disease, and two were still alive on January 1, 1999 (Barnett & RojasBurke, 1999). Because of confidentiality issues, the demographics of the 15 people who took the lethal medication are limited. Eight were men, and seven were women. The median age was 69, 13 had a diagnosis of cancer, and one each had heart or lung disease. The range of time from possession of the prescription until its use was the same day to 22 days later. According to Chin, Hedberg, Higginson, and Fleming (1999), the 15 terminally ill patients who used PAS were concerned about loss of autonomy or control of bodily functions. In addition, finances, experience of pain, health insurance coverage, or level of education were not associated with the choice of PAS. There were no reports of physical co mplications.
Fifty-three PAS deaths were predicted to happen in the first six months of the law going into effect (Woodward, 1997), but the number who received the lethal prescription drugs is far less. Forty-two people inquired about PAS by April 1998, but many were found ineligible for a wide variety of reasons: not terminal, not a resident of Oregon, death, or chose other options (Hoover, 1998c). There does not seem to be at this point any data that can point to or predict who might choose PAS as an option. In response to the lack of data, the Oregon Health Division has developed a 53-question interview that will be conducted voluntarily with doctors who participate in assisted suicide (Hoover, 1998d). The information obtained from the interviews should allow more information to emerge on patient demographics and the motives behind the request for PAS. One journalist (Hoover, 1998a) summed up her thinking on the type of person who might consider PAS and stated that "patients pursuing assisted suicide are those comfort able with asserting control over and planning for dying.[ldots] Doctors and counselors describe these patients as people who believe they/they've achieved much of what they set out to do in life, have loved ones who support their decision, and believe that life in some cases is over before one dies" (p. A5).
The SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) (1995) results certainly reflect the idea that there is much room for improvement in the care of people at the end of life. However, there is little data to indicate who might choose PAS. Back, Wallace, Starks, and Pearlman (1996) found that nonphysical concerns were often at the forefront for those who requested assistance with death at end of life. People in this study who requested PAS were concerned about losing control, becoming a burden, and losing independence and dignity. Concern about pain or other physical symptoms or worry about finances did not appear to drive the request.
Although case studies are not yet readily available, three helpful books for stories and cases about PAS are found in Shavelson (1995), Sequin and Smith (1994), and Battin and Lipman (1996). A four-part series about a 35-year-old dying man named Brian that provides a powerful exploration of the process of choosing PAS was featured in the Oregonian (Barnett, 1998a, 1998b, 1998c, 1998d). Because data will emerge slowly over the next few years, these resources and personal reflections offer guidance to some deeper understanding of the thought processes and feelings around death at the end of life.
What Needs Exploration and Discovery about Client and Family and PAS?
Many questions spring from the debate about how PAS will change end-of-life care for terminally ill patients and their families. The word "suffer" brings many unique and different pictures to people's minds. How does a social worker assess dignity, loss of control, suffering, and burden? Does the traditional mental health model of diagnosis and treatment of depression and distortion work at this point in the life cycle? Has self-determination gone too far (Callahan, 1994)?
Because the discussion of PAS with clients is now possible, at least in Oregon, social workers in various health care settings may work with terminally ill patients and their families who wish to consider and choose this option. Miller, Hedlund, and Murphy (1998) offered guidelines for social work practice with this population. However, more direction in social work assessment and intervention will probably evolve if and when PAS becomes available in other areas of the country.
Bereavement services generally are offered to all families of hospice patients for a year or so after the death. It is very unclear whether the needs of PAS families will be different from the needs of other families, whether PAS families will feel comfortable in a group setting, or whether these families will have special or different needs. Specialized bereavement groups have started in Portland, Oregon, for people who have been involved with or considered a physician-assisted death.
It is not clear whether common characteristics as to who might choose PAS will emerge or whether this is even important to know or understand. Will diagnosis, gender, race, socioeconomic status, or sexual orientation of the client have an effect on who will choose this option? A study of 100 people with amyotrophic lateral sclerosis found that more than half would consider assisted suicide (Ganzini, Johnston, McFarland, Tolle, & Lee, 1998). All 15 Oregonians who used the lethal prescription drug were white. Another question to contemplate is whether having the option available will actually reduce the need to use it. Similar to evaluation of suicide in the general population, discussion of the thinking and planning of suicide can sometimes reduce the risk. It is also not clear how many people who receive the prescription will actually go ahead and use it or merely keep it close by and judge when the time has come to take the medicine (Barnett, 1999).
What Is Known about PAS and Health Care Professionals?
The Death with Dignity Act specifically mentions medical doctors and refers to psychologists and psychiatrists for evaluation of mental health. Although social work is not mentioned specifically in the law, social work is a mandated service under the Medicare hospice benefit (Miller & Mike, 1995). Oregon's law requires that all other end-of-life options are explored on request for PAS, and this is where a social work referral may begin. Social workers provide numerous services across many health care settings and should be involved in assessment and intervention with individuals who may choose PAS (Miller et al., 1998; Smokowski & Wodarski, 1996).
NASW was the first professional organization to adopt policy about PAS at the 1993 Delegate Assembly. Entitled "Client Self-Determination in End-of-Life Decisions" (NASW, 1994), the policy statement offers definitions, as well as a very basic framework for social work assessment and intervention if and when PAS becomes legal. With self-determination as its base, the policy says that a social worker may be present for the assisted death, but may not deliver the medications. The policy statement was not changed at the 1999 Delegate Assembly. Many other organizations and professional groups, too numerous to mention, followed with statements and positions on assisted suicide after passage of the original Death with Dignity Act in 1994 (for a list, refer to Task Force to Improve the Care of Terminally Ill Oregonians, 1998). Despite NASW's position, social workers in Oregon debated PAS and disagreed on its place in end-of-life options (Miller & Hedlund, 1996). The NASW Oregon Chapter remained neutral on both ballo t measures. Attitudes and values of social workers toward assisted suicide are just now coming into the literature (Csikai, in press).
Social workers in health care often function as part of an interdisciplinary team, so it is important to understand how other professionals deal with and practice PAS. Three studies document the attitudes of different physician groups in Oregon about PAS. For physicians who might be eligible to participate under the law, about 50 percent would be willing to prescribe a lethal dose for a terminally ill patient (Lee et al., 1996). For psychiatrists (Ganzini, Fenn, Lee, Heintz, & Bloom, 1996), a majority agreed with PAS; however, only 6 percent of psychiatrists surveyed believed that a one-time consultation could evaluate depression or impairment of the patient's judgment around the request for PAS. Sixty-nine percent of emergency room physicians (Schmidt et al., 1996) agreed with PAS, and this article elaborates on the dilemma of patients' failed attempts for this professional group. One common thread that runs through these three studies is that physicians with strong religious affiliations are much less like ly to agree with or participate in PAS.
The American Pharmaceutical Association voted in March 1998 to allow its members to participate in PAS if willing to do so. However, controversy remains as to whether the prescription should be flagged as one for PAS (Hoover, 1998b). Physicians want to maintain patient confidentiality. Pharmacists want to know the purpose of the prescription for two reasons: (1) the option to refuse to fill the prescription and (2) the ability to educate the patient on proper use of the drugs. This dilemma may have to be resolved in the courts.
The option of conscientious objection to participation in PAS is part of the law. Many agencies and health care professionals, particularly those with religious affiliations, have clear policies about nonparticipation. However, other agencies are developing their policies slowly to address not only participation but also conscientious objection. Many hospice organizations state that they do not promote or agree with PAS; however, they will not abandon a patient or family that chooses this option (Mesler & Miller, in press).
Hospice agencies in particular have been struggling with implementation of PAS in Oregon. Because the hospice philosophy supports patient control and autonomy, along with neither hastening nor postponing death, PAS has created controversy within the hospice movement (Campbell, Hare, & Matthews, 1995). Data emerging from a study in progress reveal a potential dilemma for hospice workers and hospice agencies as PAS unfolds, particularly around the very principles from which the hospice movement grew (Mesler & Miller, in press). What Needs Exploration and Discovery about PAS and Health Care Professionals?
The effect of PAS on health care providers and agencies is still evolving. There appears to be a wide range of discussion about PAS practice in hospice agencies and at different levels of policy development (Woolfrey, 1998). Many agencies and professional groups spent energy on position statements during the three years of court battles on PAS. Now health care providers are faced with the reality of PAS as an option.
How PAS will change or shift the hospice philosophy remains to be seen. It may be too early to understand the subtle transformations that may occur as PAS becomes part of what hospice offers its terminally ill clients. However, the challenges that PAS poses to hospice workers definitely are emerging in a current study (Mesler & Miller, in press). It is quite possible that overtime, hospices or other health care providers may develop programs that specifically offer and market PAS as a service.
Social workers, psychologists, and psychiatrists generally are taught that suicidal ideation is a sign of depression, impaired judgment, or distortion of reality. They are taught to engage the client in a discussion about his or her plan and to force treatment if the client appears at high risk of suicide. At the end of life, a legally sanctioned option to end life with the assistance of a physician is now available in Oregon. Many mental health professionals struggle with a perceived quandary about how to evaluate depression, distortion, and judgment at end of life that seems at odds with education and training (Van Loon, 1999). New and different ways to evaluate competence, depression, and judgment at the end of life need to be developed, tested, and taught.
The financial aspects of PAS are also controversial and based at this point on projections. Wolf (1996) presented concerns about managed care and PAS, with particular emphasis on how limited treatment and referral might lead more easily to the choice of PAS. She discussed the concerns about treatment for depression that appear to exist already in managed care (less care than in fee-for-service plans) and explained the lack of information at this point about end-of-life care and managed systems.
In Oregon's three most populous counties, more than 50 percent of Medicare enrollees are in one of seven managed plans. It is too soon to know whether Medicare managed care will be cost effective or patient friendly. The Medicare Hospice Benefit provides numerous services to the terminally ill beneficiary, including payment for prescription drugs (Miller & Mike, 1995), yet the Assisted-Suicide Funding Restriction Act of 1997 (PL 105-12) prohibits use of federal money for PAS, similar to the Hyde Amendment's prohibition of federal money for abortions. How billing procedures will be implemented for the Medicare Hospice Benefit and PAS is unclear.
The Oregon Health Plan (OHP), the state's Medicaid program, will pay for PAS with state funds only, and two of the 15 people who used PAS were covered by OHP. The decision to cover this service for poor people was controversial, particularly because OHP is delivered solely through a managed care model, and the payment system has gone through numerous waivers and changes. How low-income people will use PAS or whether some groups may feel pressure to use PAS is not known yet. One argument used against the choice of abortion was the assertion that low-income women and women of color would be forced to have abortions against their will. However, just the opposite has happened, because low-income women do not have access to abortion in many states (McFarlane & Meier, 1994).
Emanuel and Battin (1998) discussed the assertion posed in the PAS debate that doctors may push PAS to save money. The authors discussed PAS within the context of managed care, Medicare, and dollars spent on end of life. They concluded that if 2.7 percent of the dying population in the United States per year (62,000 people) chose PAS, about 0.07 percent or $627 million of the total U.S. health care costs would be saved. Although the authors described the savings as small overall, they did not ignore the complexities and inequalities in the U.S. health care system.
What Is Known about Society and Culture and PAS?
The right-to-die movement is alive and well in the United States, and some would say on a fast track. However, health care and technology also are on a fast track. Moving from the right to withhold or withdraw treatment to the federal Patient Self-Determination Act (PL 101-508) as part of the 1990 Omnibus Budget Reconciliation Act to double effect (pain medicine potentially hastening death) to PAS happened in less than 10 years. Hospice was legitimized by Medicare only 18 years ago (Mesler & Miller, 1996). The history of the right-to-die movement is long, political, and always controversial (Glick, 1992; Hoefler, 1994).
From a societal perspective, numerous polls and surveys indicate that a majority of U.S. citizens want PAS as an end-of-life option. A recent national poll discovered that three-fourths of those surveyed nationwide thought Congress should not intercede or restrain Oregon's Death with Dignity law (Barnett & Barnett, 1998). However, there are also other groups of people who worry about the effect of PAS on people with disabilities (Miller, 1993), people with AIDS (Werth, 1995), and society as a whole (Dougherty, 1993). There is also some concern that Oregon's law might violate the federal Americans with Disability Act (Woodward, 1998). Some voice concern that if terminally ill people can request death earlier than its natural course, the slippery slope would lead society to view people with dementia or other debilitating conditions as burdens and hasten their deaths as well.
Social work has a long way to go toward culturally sensitive practice at end of life. It is certainly not a secret that 40 million U.S. citizens are still without health insurance and that many citizens of color and those who are poor are not getting needed health care services. Spiritual and religious practices at end of life often are misunderstood or seen as noncompliance with treatment (Julia, 1996; Spector, 1991). Barriers to service may sometimes be culturally bound, because our health care system has evolved on the basis of a dominant-culture medical model. Dying people (and those living) are diverse and heterogeneous, and our ability to quantify how PAS will unfold within U.S. culture and society may not be attainable or even a priority. This does not mean, however, that we stop breaking down barriers of access to health care.
Terminal dehydration is generally a medically and legally acceptable method to end life that may not violate ethical standards (Miller & Meier, 1998). How many terminally ill people choose this option is not clear, but Tolle (1998) delineated some of the changes that have occurred in end-of-life care in Oregon since the 1994 ballot measure. Oregon has the lowest in-hospital mortality rate in the country, admission rates into hospice have increased 20 percent, and the use of medical morphine has increased by 70 percent. Hospitals and health care systems in Oregon have developed comfort care teams that specifically address pain management.
Quill, Meier, Block, and Billings (1998) described the deliberation on PAS as "both fuel and a distraction" (p. 552), and the authors elaborated on areas where disagreement about end-of-life options really merge into common ground. They spoke of the increased awareness of palliative care and pain control, patients' rights, and a new push for revisiting and rethinking professional values.
What Needs Exploration and Discovery for Society and Culture and PAS?
The effects of Oregon's law on end-of-life care and how other states might proceed either for or against PAS is difficult to know. Nine state legislatures, including Oregon, have considered a ban on PAS, and 11 states have contemplated the use of PAS (Hoover, 1997). Michigan voters soundly defeated a PAS bill similar to Oregon's in the fall of 1998.
The controversy sparked by PAS has definitely raised awareness about pain control at end of life, and 22 states have studied and changed access to good pain management. These efforts are accomplished by changes in access to pain medicine, patients' bills of rights, and rethinking of pain as a diagnosis rather than a symptom. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has added new standards for the assessment and management of pain to be implemented over the next two years (Resource Center of the American Alliance of Cancer Pain Initiatives, 1999). Oregon's Task Force on Pain and Symptom Management was mandated by the last legislative session to learn about how good pain management works and what the barriers are in that state to good pain control for terminally and chronically ill people. A report was given to the governor and the legislature in January 1999 that recommends a wide range of changes in pain management, education, and access (Pain and Symptom Management Task Forc e, 1999). The Oregon legislature also will consider a bill that mandates universal hospice access to all residents.
Whether the slippery slope has begun is being debated. Will Oregon's law open the door to voluntary euthanasia that would allow health care professionals to administer the lethal dose? Will PAS be a part of advance directives, or could a health care proxy make a decision for a lethal prescription drugs if given permission in advance? Will terminally ill people be viewed differently? The questions are unending, and the answers are few.
Implications for Social Work and Conclusion
PAS is extremely complex and driven by multiple factors. The practice of PAS in Oregon is slowly evolving and changing. For individuals working with dying people in Oregon, it has been a bumpy and tiring road. There has been little available about PAS in the social work literature, although nursing and medicine journals have been very active on the issue. The Oregon experience may be of some guidance as other states move forward with their own versions of PAS.
It seems curious that so few Oregonians have chosen PAS at this point and that so much furor has been raised every time a PAS death is reported, particularly because people with AIDS had used the practice for many years (Shavelson, 1995). As the practice moves into mainstream society, it has come under much more scrutiny. It is also interesting that a Congress that supports states' rights would attempt to repeal Oregon's Death with Dignity Act after two state elections. The action in the fall of 1998 by the House Judiciary Committee to send the Lethal Drug Abuse Prevention Act to the full House placed the American Medical Association on the same political side of PAS as right-to-die groups. This entire process moves and shifts on almost a daily basis, and those who are sometimes political adversaries become allies.
This article is offered to individuals who want to learn about Oregon's Death with Dignity Act and how it has begun to unfold over its first year of legalization. The practice issues may not resolve themselves for some time; meanwhile, other states may adopt PAS policy. What is currently known about PAS for clients and families, health care professionals, and society could change, and there is much more that needs to be explored. In Oregon the debate about whether PAS is good public policy has been put to the side as the reality and consequences of this option must be incorporated into end-of-life decisions. There is life after Death with Dignity, and time will reveal the results of this extremely controversial choice.
Pamela J. Miller, PhD, ACSW, is associate professor, Graduate School of Social Work, Portland State University, Box 751, 400B University Center Building, Portland, OR 97207; e-mail: email@example.com.
NOTE: Because this subject area is changing so quickly, it should be noted that the data from the second year after passage of the law were released in February 2000 and that Congress took on the Pain Relief Promotion Act in that session; consequently, Oregon's law could be in jeopardy, depending on the results.
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|Author:||Miller, Pamela J.|
|Article Type:||Statistical Data Included|
|Date:||May 1, 2000|
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