December 15, 2018
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Having a good death is not so simple

George Danby | BDN
George Danby | BDN

As a physician who supports a patient’s right to make decisions concerning life and death, I believe that medical aid in dying should be available to the terminally ill in Maine. But as with most end-of-life decision-making, it is not simple. To their detriment, some think that having a stash of pills in the bedside drawer is sufficient to engineer a good death. It is not.

Maine Death With Dignity is a political action committee currently collecting signatures on a petition to place an assisted dying statute on the November 2019 ballot. I support this initiative but note that the availability of physician-assisted death is not sufficient to guarantee a good death.

Whether obtained legally in the seven states plus the District of Columbia where medical aid in dying is available or obtained illicitly elsewhere, ingesting a lethal dose of medications is only one step — albeit just one option for the final step — in the long process of thinking through and engineering a quiet death at home with minimal, unhappy consequences for patients and their families.

Where surveys of patients are analyzed academically, the characteristics of a good death are well understood. They include control, comfort, closure (reconciliation with family and friends), affirmation (being valued and appreciated), acceptance (the death is appropriate and understood in terms of time and place to both the patient and family) and trust (the patient and family are comfortable with their surroundings and treatment level).

A handful of pills addresses only one aspect of the control issue. It does not address the possibility of being trapped in an institution receiving more aggressive treatments than desired. And without laying the groundwork for being in hospice long enough to reconcile with loved ones and demonstrate that the death is neither too early nor too late, survivors will feel abandoned by an ingestion that appears impulsive and premature.

[Opinion: My job as a physician is to alleviate suffering, not cause death]

So, what is the experience in states where acquiring lethal medications has been legal for decades? Are many people successfully planning and executing their exit as gracefully as possible? The answer to that question is, “No.”

Even in Oregon, where medical aid in dying has been available for more than 20 years, the state’s public health officials report medically assisted deaths have averaged only 19 per 10,000 deaths since 1998. Out of the 36,640 deaths in Oregon last year, just 143 died from ingesting lethal medication under the law.

Some say the reason so few Oregonians participate is because of the difficulty in finding two doctors who agree to certify a patient as terminally ill with a life expectancy of less than six months. This is partly the result of physicians’ professional ambivalence about participating in the process. Many doctors struggle with the dilemma of aiding a patient’s death, while others find it is easier, and more remunerative, to prescribe additional treatment than discuss end-of-life decisions.

Others note that by the time many potential participants decide to start the process, it is simply too late to finish the paperwork, the doctor’s visits and the self-reflective waiting period before physical debility or mental incompetence preclude self-administration of the dosage, all stipulations which are required by the Oregon law.

And about 35 percent of Oregon patients who go to the trouble of obtaining a lethal dose of medication never use it. Why not? This could be because of unexpected disease progression causing them to become mentally incompetent or physically incapable of self-administration. Or it could be they changed their minds.

[Opinion: My wife wanted people with terminal illness to have the option she never did: to die with dignity]

But, according to Dr. David Grube, national medical director for Compassion and Choices, the largest organization promoting medical aid in dying, the greatest impediment remains inadequate planning because of the will to live against all odds. Even in Oregon, where Grube practiced for 35 years, the vast majority of patients still fight too long for life rather than plan for the inevitability of death.

“Doctors offer one more treatment; patients want to try one more treatment; and families want to try six more treatments,” he told me.

So, although control is the most important attribute of a good death, the vast majority of patients, even in states that offer medical aid in dying, do not want to lay the groundwork for plans that maximize control.

Doing so starts with understanding when it is appropriate to say no to aggressive treatments and hospitalizations.

Only by thoughtfully addressing all the attributes of a good death (control, comfort, closure, optimized family relations, location and appropriate timing — not too soon or too late) can better end-of-life planning succeed for more people.

Samuel P. Harrington, M.D., is a retired gastroenterologist and the author of “At Peace: Choosing a Good Death After a Long Life.” He lives in Stonington.

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