California Could Be Landmark for PAD In a Diverse Population
Abstract
As currently practiced, physician-assisted death is highly circumscribed—it is difficult to access, and some patients die of their illness without having used the lethal prescription. This is the second article in a series begun in the May 4 issue.
“Ann” was a 66-year-old woman with metastatic breast cancer who had unsuccessfully tried numerous treatments, was given a prognosis of less than six months to live, and entered hospice care. She would become one of the first patients to qualify for physician aid in dying (PAD) under California’s End of Life Option Act, which went into effect in June 2016. The law gave her the option of using a lethal dose of an agent prescribed by a physician to end her life at a time of her own choosing.
Psychiatrist and palliative care expert Nathan Fairman, M.D., says physician-assisted death in California requires a high degree of assertiveness on the part of patients with a short time to live.
“She had spoken with her oncologist and primary care provider, as well as others in her treatment team, and she believed it would give her some peace of mind, knowing she had that option if her suffering became unbearable,” recalls Nathan Fairman, M.D., a psychiatrist, palliative care specialist, and director of the End of Life Option Act Program at the University of California, Davis. “Her husband and two children were involved in those discussions and supportive of her interest. She and her doctors completed the steps required by the law and she was prescribed the drug.”
Ann kept the drug (a lethal dose of secobarbital) in storage and survived for another two months before succumbing to the cancer, never using the prescription.
It’s a not uncommon scenario in jurisdictions that have approved aid-in-dying laws. “Many of the patients who request PAD are adamant that they don’t want to die,” Fairman told Psychiatric News. “But they accept that they are dying, and they do not want to suffer. It is not uncommon for patients to initiate this process with the caveat that they are not planning to use the drug. They will say, ‘I want to get my ducks in a row, so if something happens, I can have the option of having a more peaceful exit.’ ”
Facts About PAD Laws
Some features of physician-aid-in-dying (PAD) laws are consistent across all jurisdictions that have approved the process. These include the following:
Requesting PAD: All jurisdictions require an oral and a written request for the prescription and a subsequent reiteration of the oral request. Written requests must be signed and dated by the patient and witnessed by at least two individuals attesting that to the best of their knowledge, the patient is capable, acting voluntarily, and not under coercive pressure to request the medication.
Terminal illness: All jurisdictions define a “terminal disease” as a medically confirmed disease that is incurable and irreversible and that will, within reasonable medical judgment, produce death within six months. The attending (primary) physician is responsible for making the initial determination that the patient is suffering from a terminal disease, and that determination must be confirmed by a consulting physician who is similarly qualified to make a diagnosis and prognosis of the patient’s disease.
Determinations of competency: All jurisdictions require competency to be affirmed by two clinicians—an attending (primary) physician and a consulting physician. California defines “capacity to make medical decisions” as the patient’s ability—in the opinion of the attending or consulting physician—to not only make and communicate health care decisions, but also to understand the nature, consequences, benefits, risks, and other options.
APA’s Resource Document on Physician Assisted Death, developed by a task force of the Council on Psychiatry and Law, was approved by the Joint Reference Committee in October 2017.
PAD is garnering increasing attention and debate. Yet the “facts on the ground” about PAD as described by Fairman and as indicated in data about the laws suggest that the actual practice of PAD has been highly circumscribed: only a small number of individuals with terminal illness qualify for and take advantage of PAD; many who do qualify die of their terminal illness without having used the lethal prescription; and patients almost uniformly are not looking forward to dying but want to control the timing and manner of a death that is imminent.
“In our experience, institutionally [at UC Davis], we are learning that the law is written in such a way that a very small percentage of patients will have success qualifying,” Fairman told Psychiatric News. “This is not an easy or quick process for a patient to get through. It requires a high level of assertiveness from patients, health literacy, and time. Depending on the case, there may be as many as four encounters with providers or a pharmacist. In many instances, it just isn’t possible for patients who are very near the end of their life.”
Fairman said that the attention focused on PAD threatens to eclipse “the need for high-quality end-of-life care for all dying patients, not just those interested and able to access the option of PAD.”
Moreover, the most vociferous opposition to PAD tends to revolve not around the laws and the practice of assisted dying as it currently exists, but on how the laws and the practice may evolve in time to be less restrictive. “When the psychiatric field focuses on those difficult and controversial scenarios, we are in danger of missing the thing that is in front of us—how we can help alleviate psychological distress in dying people,” Fairman said.
Entering Uncharted Territory
Oregon was the first state to adopt PAD, with passage of the Death With Dignity Act in 1997. It stood alone until 2009, when a similar law was approved in Washington by public referendum. This was followed in the same year in Montana, where PAD became legal by a court ruling, then later in Colorado, Vermont, the District of Columbia, California, and Hawaii (the law in Hawaii goes into effect in 2019).
As the first state to approve PAD, Oregon has the largest database of information about people who have sought PAD. Because other states modeled their laws after Oregon’s, their experience is likely to differ mainly with respect to demographics and implementation.
Several observers who spoke with Psychiatric News said that California—by virtue of its size and demographic and socioeconomic diversity—will be a landmark for how PAD is applied in a diverse population. The most recent report from California about PAD includes only data from the first six months of the law’s application in 2016.
Fairman said it has been a learning process. As a psychiatrist with expertise in palliative care, he served as an advisor to state senators as the End of Life Option Act was being developed and participated in legislative hearings to provide feedback to legislators about implementation.
The law in California is explicit that participation in PAD by individual physicians and institutions is entirely optional. “At UC Davis we had a series of conversations with stakeholders throughout the system and decided to participate,” Fairman said.
The institution developed its own policy around PAD, including some elements beyond what is included in the state law—especially the designation of a “patient navigator,” a licensed clinical social worker who provides a psychosocial assessment, helps to identify unmet patient support needs, facilitates enrollment in hospice care, and coordinates communication among providers.
Fairman said the institution has also developed CME training and other educational resources to help physicians learn about the law and—most importantly—learn the set of communication skills necessary to talk to patients about end-of-life care and the possibility of PAD.
As an example, when “Ann” received the prescription she never took, she encountered something unanticipated. “To her surprise, having the drug at home brought a new kind of distress around knowing she could bring her suffering to an end but wanting to make sure she didn’t make the mistake of cutting it short when she might have some meaningful life left.”
Fairman added, “This is uncharted territory.”
At last year’s Annual Meeting in San Diego, Rebecca Brendel, M.D., J.D., a consultant to APA’s Ethics Committee, said the experience to date with PAD laws and the evolution of research around determinations of competence in patients with various forms of terminal illness suggest a clinical reality more complex than traditional medical/psychiatric ethics has accounted for: not all desires to die are necessarily “suicides” as traditionally defined, but—at the same time—some desires to die may be the transient wish born of a dire situation. “We have to become more sophisticated in our thinking about different phenomenologies of patients who wish to die and how we as psychiatrists engage with them,” she said.
Fairman agreed. “We need to be careful in this space, where patients face decisions that will influence the timing of death. One way to think about this is that we ought to aim for a ‘space between two mistakes’—the mistake of saying ‘yes’ too quickly and thereby shortening meaningful life, and the mistake of saying ‘no’ too quickly and prolonging meaningless suffering.” ■
The 2016 Data Report on the California End of Life Option Act can be accessed here.
Also see Loss of Enjoyment, Autonomy, Dignity: Top Reasons for Seeking PAD and Part 1 of this series, End-of-Life, Physician-Assisted Dying Challenge Traditional Medical Ethics.
