Oncologists must confront end-of-life issues on a nearly daily basis. Our approach to the potential death of a patient may change over time, however, depending on the patients’ diagnosis and stage, where those patients are in their treatment plan, and, of course, what the patients’ wishes are. When feasible, our primary goal is to prevent death from cancer, and when we cannot achieve that, we try to delay death as long as we can. When dying seems inevitable, we do our best to make it as comfortable as possible.
For the past 20 years, Oregonians have had an option, when they have a terminal medical condition and specific life-expectancy of less than six months, to actively seek their own death. Oregon’s Death with Dignity Act became the nation’s first when it went into effect in 1997, and physician-aided dying (PAD) is now also legal in California, Colorado, Montana, Vermont, Washington, and the District of Columbia. States tightly regulate eligibility and process—Oregon and those modeled upon its law also require residency and a competent patient who is acting voluntarily. One of us, Charles Blanke, offers PAD as part of his clinical practice.
The Oregon Health Authority collects mandatory data on use of the law, and SWOG recently reviewed 18 years of state statistics. We were part of the research team that published the results in JAMA Oncology this week. Here’s what we learned:
From 1998 through 2015, 1,545 prescriptions for lethal medication were written, and 991 patients took the drugs and died
Of the patients who died, most had cancer—77 percent—and lung, breast, and pancreatic tumors were the most common
Drugs were 99.4 percent effective, and other complications were rare
Gender was split evenly, but age ranged widely, from 25 to 102, with a median of 71
Most patients were white (97 percent), had at least some college education (71 percent), and were under hospice care (92 percent)
The most commonly cited reasons for using lethal medications were loss of autonomy (92 percent), inability to enjoy activities of daily living (90 percent), and loss of dignity (79 percent)
One in four patients opted for PAD because of inadequate pain control, and, worse still, 3 percent stated the cost of medical treatment was a driver of their decision.
It’s clear that patients with cancer and other terminal diseases want the option to end their lives, and when that is legal and accessible, they are increasingly using it. The reasons for choosing PAD aren’t classically medical, nor are they easy to palliate. Patients want independence, control, and dignity. And when those are gone, they don’t want to go on living. Sometimes terminal sedation is offered, as a “more ethical” choice.
Who gets to decide when and how a patient dies?
We think it should be the patient.
While aid-in-dying is beneficial, and increasingly popular, we have much work ahead as physicians, as researchers, and as citizens pushing for policy change. No one expects all physicians to actively participate in aid-in-dying; writing that prescription for lethal medication is hard. But in Oregon, executing PAD, a legal option, is also hard for the patient.
It sometimes takes them months just to find a prescribing physician. Many doctors not only choose not to prescribe—but also choose not to refer. This “good luck with that” mentality doesn’t serve patients well and is essentially a form of abandonment. We implore those living in states where PAD is legal to help the patients needing PAD to have access to PAD.
The reasons for choosing PAD aren’t classically medical, nor are they easy to palliate. Patients want independence, control, and dignity. And when those are gone, they don’t want to go on living. Sometimes terminal sedation is offered, as a “more ethical” choice.
Also, as researchers, we must tackle important, unanswered questions. Why do so many patients—about one in three—get the lethal medications and not use them? Could changes in palliative care reduce the use of PAD? Why do some patients experience prolonged comas before dying? As a nation, we need a robust PAD research program, and it should be funded by public dollars.
We must tighten the laws and regulations. In Oregon, the PAD law has been interpreted as requiring patients to request and “voluntarily self-administer” lethal medication. Most physicians have taken that to mean that a patient must be physically and mentally fit until the actual time the oral medication is consumed. It is brutally disappointing to patients who become too weak to avail themselves of PAD, and those anticipating potential mental decline might take the medicine too early.
Allowing an intravenous formulation administered by a physician would eliminate the former problem. Allowing patients to put a PAD request in an advance directive would eliminate the latter one. though we don’t soon see that happening in the United States, (we can hear the slippery-slope-based cries that we will soon be euthanizing the elderly and mentally infirm, similar to the use of the inaccurate term “Death Panels” associated with the Affordable Care Act).
Finally, we must change the marketplace. Standard aid-in-dying drugs are expensive, ranging in cost from about $3,200 to $7,700 in Portland, OR—and they are not always covered by insurance. New formulations are much cheaper, but they are scary. One cocktail, for example, combines two cardiac medications at 200 times the therapeutic dose. How do we know patients will succumb before experiencing digoxin toxicity? As one can imagine, formal Phase I testing isn’t done on these combinations, and no agency really regulates this type of off-label use of medications.
In our Oregon analysis, we’ve learned aid-in-dying is largely an issue faced by the cancer community. With an estimated 20 states considering PAD laws this year alone, more cancer caregivers and researchers will be faced with aid-in-dying. PAD is here to stay. We need to face it with more compassion, more understanding—and more evidence.
