Mental health, suffering, and a “Good Death”

For about fifteen years, I have made presentations to adult learning groups about the use of advance directives, death with dignity, and the right to die. For much of that time, I have asked the participants, “How would you describe a good death for yourself?”

It has been remarkable how similar the lists are among the mostly white, college-educated, middle- and working-class participants. A typical list would be the following:

without suffering
go to sleep, not wake up
peaceful
no unresolved issues
quick and painless
not sudden
present and aware
able to say goodbye
not trapped in a non-functional body
able to communicate
some purpose in death
loved
funeral decisions made
surrounded by loved ones
no regrets
choice of timing

Of course, I can’t say with certainty what each thought means. For instance, I don’t know what “some purpose in death” means. And there may be contradictions, for example with dying in one’s sleep and being “surrounded by loved ones.” But it is remarkable to me that consistently, in every group I have asked these questions, people do not want to suffer when they die – suffering is their greatest concern.

This desire to avoid unnecessary suffering is at the foundation of not only the Final Exit Network, but of the Death With Dignity laws in Oregon, Washington, Vermont, California, Colorado, and the District of Columbia, and in the palliative care programs across the nation, including hospice organizations.

Usually, when we talk about suffering, we are thinking of physical suffering. But there are many people with severe, unresolved, debilitating mental illness who can find no relief from their suffering – suffering that is just as real (though its cause is different) as that experienced, for instance, by a patient at the end stages of pancreatic cancer, or a patient dying of metastasized prostate cancer. And none of the existing programs and services can help those with unrelenting mental illness die a peaceful death – a good death – to put an end to their suffering.

In Canada, the medical and mental health communities are grappling not so much with whether people with mental health disorders should have access to physician-assisted death, but under what terms and conditions the mentally ill should be afforded access to physician assistance in dying.

Two and a half years ago, the Canadian Supreme Court decided the Carter case, which led to legal physician-assisted dying in Canada, including, in theory, for people with mental health conditions if the system is to be equally fair to both the physically ill and the mentally ill. However, this Canadian decision simply started the debate on how the mentally ill can access such assistance in Canada.

The Court suggested that people with grievous and irremediable medical conditions that cause suffering that is both intolerable and enduring should be provided access to physician-assisted death. This suffering could be either physical or psychological, or both. Whatever the case, the person seeking such assistance must be mentally competent; that is, able to give informed consent with respect to a request to die with medical assistance.

Determining usable meanings of all of these terms – grievous, irremediable, suffering, intolerable, enduring, competent – is essential before Canada can move forward to implement a system of medically-assisted dying for persons with mental illness. And the debate is ongoing among all of the stakeholders in the Canadian system of medically-assisted death.

It should not be a surprise, then, that even the Final Exit Network, the most inclusive right-to-die organization in this country, finds it difficult to know when it is appropriate to educate and train those with mental illness about how they can hasten their own deaths. The greatest difficulty is developing sufficient protocols to guide decision-making, given the imprecision of the concepts identified by the Canadian Supreme Court, concepts as relevant to the Network’s decision-making as they are to Canada’s.

No one, other than the mentally ill themselves, regrets the difficulty in deciding when to help such persons more than the volunteers who do most of the work of the Final Exit Network. But it is a reality in the US, just as it is in Canada in a slightly different context, that no one has devised adequate protocols that could be followed when mentally ill persons ask to be educated and trained in hastening their own deaths. It is true, also, that such protocols would have to involve people with more expertise than that possessed by most Network volunteers, even if all the terms can be understood clearly by mental health professionals and implemented within the Network’s system.

The Final Exit Network works with those who request Exit Guide services and who suffer from cancer, ALS (Lou Gehrig’s Disease), Alzheimer’s, Huntington’s, multiple sclerosis, muscular dystrophy, emphysema, congestive heart failure, stroke, AIDS, and many other lesser-known but serious, frequently lengthy ailments. Each such person must satisfy a threshold requirement of mental competence to be accepted. At this point, it is difficult to establish that those with mental illness as the only diagnosis can satisfy this protocol, just as those with dementia that has progressed too far may not be considered able to make informed judgments and therefore demonstrate competence.

Despite our best efforts, for now at least, not everyone who requests Exit Guide services will be able to receive those services. This is a fact of life that we all live and die with.