This piece originally appeared on the March 15, 2017 Health Affairs Blog
During the past 20 years, the end-of-life care community has devoted its energy, resources, and time into developing the medical sub-specialty of palliative medicine and promoting integration of palliative modalities into treatment of advanced illness. Progress continues toward twin goals of providing relief from the symptoms and stress of a serious illness and improving the quality of life for both patient and family. As the leading resource for palliative care development and growth, the Center to Advance Palliative Care notes that, “Palliative care sees the person beyond the disease. It represents a paradigm shift in health care delivery.”
Compassion & Choices is the nation’s oldest, largest, and most active nonprofit organization committed to improving care and expanding choice at the end of life. We have long recognized that adult, terminally ill individuals have a fundamental right to determine their own medical treatment options as they near the end of life. We routinely hear from people who praise their palliative care team for the support either they or a loved one received during a serious illness.
However, we also quite regularly hear from consumers who do not understand why their palliative care team does not disclose or discuss medical aid in dying as a palliative care option for mentally sound, terminally ill adults in the states where it is authorized. After all, many palliative care teams pride themselves on helping patients and families understand the nature of their illness, making timely, informed decisions about their care and feel in control of their lives. Medical aid in dying—one option on the palliative care spectrum—represents these values to patients and their families, so they do not understand why some palliative care specialists refuse to acknowledge or recognize it.
Medical aid in dying refers to a practice in which mentally capable, terminally ill adults with a prognosis of six months or less may request medication from their doctor for self-administration to bring about a peaceful death if suffering becomes unbearable. The practice is currently authorized either through statute or court decision in six states: Oregon, Washington, Montana, Vermont, California, and Colorado. Bills to authorize the practice are also being considered in more than 20 states during the 2017 legislative session.
In November, the Annals of Internal Medicine published an article by John Frye, MA and Stuart J. Youngner, MD, titled: “A Call for a Patient-Centered Response to Legalized Assisted Dying.” They challenged medical organizations to develop policies of “engaged neutrality” on medical aid in dying. A position of engaged neutrality indicates that it is a professional organization’s obligation to provide its members with the clinical guidelines, information, and tools they need if they choose to support their patients’ requests for medical aid in dying.
Here, we offer data and evidence for medical organizations to consider as they explore adopting a position of engaged neutrality. We also reach out to the palliative care community in the hope that, upon renewed reflection, its members will recognize medical aid in dying as an end-of-life care option that should be integrated into the palliative care spectrum in response to growing consumer demand and impending authorization in states across the nation.
Like palliative care, medical aid in dying helps patients focus on quality of life by easing their greatest fear: they will experience unbearable suffering during the last months, weeks, or days of life. It is not only about how a person dies, it’s about how one lives during the last stage of a terminal illness. It seems that some skeptics consider only the palliative implications of terminally ill individuals ingesting aid-in-dying medication. They do not recognize the enormous palliative impact on quality of life that occurs when the terminally ill individual obtains the medication, whether or not that person ultimately decides to take it. In fact, more than one-third of Oregonians who obtain the medication do not ingest it, but they get peace of mind knowing they have it if they need it. People also find reassurance and comfort in discussing medical aid in dying as an end-of-life option with their family and physician, even if they do not pursue getting the medication.
According to a study published in the Journal of the American Medical Association, palliative care physicians in Oregon report that a patient’s questions about medical aid in dying prompt in-depth conversations between doctors and patients about the full-range of end-of-life care options, including hospice, pain management, and emotional support in addition to medical aid in dying. Numerous studies in Oregon and Washington, along with a host of national surveys, link the availability of medical aid in dying as a palliative care option to a number of positive outcomes for end-of-life care.
A study of hospice nurses and social workers in Oregon reported that symptoms of pain, depression, anxiety, extreme air hunger, and fear of the process of dying were more pronounced among hospice patients who did not request aid-in-dying medication, indicating a strong palliative care benefit for having an aid-in-dying prescription on hand whether or not the prescription ever gets filled. University of Pennsylvania’s Center for Bioethics Director Arthur Caplan has said, “… the Oregon law probably has benefited many more people than have actually used it.”
As is noted above, the mere knowledge that this end-of-life option is available to a terminally ill patient has a palliative effect and improves quality of life. The policy does not benefit only the very small percentage of people who actually choose this option; the policy benefits the many people who have a terminal illness who find comfort in knowing this option is available to them if they need it. Furthermore, medical aid in dying represents the shift in the balance of power from the medical system to the patient. When health systems and entities choose to adopt supportive policies, they are recognizing patients’ role in making decisions about their health care, which transforms how care is delivered throughout the care continuum.
The evidence suggests that medical aid in dying actually improves hospice care. Oregon has long been recognized as a leader in end-of-life care. However, the improvements since Oregon’s Death with Dignity law took effect were so notable that the authors of a 2015 Journal of Palliative Medicine study on hospice usage patterns suggested the law may have contributed to more open conversations between doctors and patients about end-of-life options, higher hospice usage rates, lower rates of hospice misuse, and better palliative care training of physicians.
Medical aid in dying helps family caregivers prepare for and accept a terminally ill person’s imminent death. The previously cited study of hospice nurses and social workers in Oregon reported that family caregivers of patients who chose medical aid in dying “were more likely to find positive meaning in caring for the patient and were more prepared for and accepting of the patient’s death” than family caregivers of patients who did not request medical aid in dying. A mental health survey of 95 Oregonian families whose loved ones chose medical aid in dying after exhausting other palliative care options yielded similar results.
For decades, palliative care professionals have expressed concern about associating their practice with medical aid in dying because they believed it could damage their image. According to a 2011 Public Opinion Research Survey on Palliative Care, nearly eight out of 10 Americans “don’t know” or are “not at all knowledgeable” about palliative care. In contrast, according to nearly 50 different surveys, the issue of medical aid in dying is well known and popular among the American public, regardless of what polling company conducts the survey and how the question is asked.
In a recent Lifeway online survey, two-thirds of Americans said it was “morally acceptable for terminally ill patients to ask their doctors for help in ending their lives.” Majority support spanned a variety of demographic groups, including Christians (59 percent), Catholics (70 percent), Protestants (53 percent), those of other religions (70 percent) and those who identify as nonreligious (84 percent), White Americans (71 percent), and Hispanic Americans (69 percent). In addition, more than half of black, non-Hispanics (53 percent) agreed that: “Physicians should be allowed to assist terminally ill patients in ending their life.”
The November 8, 2016 successful ballot initiative to authorize medical aid in dying in Colorado garnered more “yes” votes than any other measure on the state’s ballot, including those targeting the minimum wage, cigarette taxes, and universal health care. Nearly two of every three voters (64.8 percent) supported it, with majority support across virtually every demographic group regardless of religion, party line, or race. The ballot measure received more votes than any candidate or issue on the ballot in Colorado. Medical aid in dying is no longer an issue that people run away from. It is a popular option that people want because it represents autonomy, control, and self-determination: the same core values that shaped palliative care.
The data from 30 combined years of experience where medical aid in dying is authorized is conclusive. This medical practice benefits many and harms nothing: not palliative care, the physician/patient relationship, families, or society. Failing to recognize medical aid in dying as a part of the palliative care spectrum is a failure to respect the goals, perspectives, and values of patients who get peace of mind and comfort from this option. Proponents of medical aid in dying share a vision with the palliative care community of reducing non-beneficial treatment that only causes pain and suffering and degrades quality of life. Consumers are driving the change — demanding truly patient-centered care. But to harness their power and deliver on their promise, the palliative care community and medical establishment must embrace patients’ desires for self-determination and autonomy. It requires recognizing and supporting medical aid in dying as a legitimate medical option for dying patients.