How We Die

The data are out: in 2017, the opioid epidemic took even more American lives than in any previous year: a record 72,000 people died of an opioid overdose. As we struggle to figure out how to deal with this problem, it seems more important than ever to remember that opioids--morphine and its cousins--when used appropriately, can also be life giving. This is particularly true near the end of life, and one setting where people often receive such opioids is hospice care. Why are opioids beneficial in this setting and how can abuse be avoided?

For starters, we need to recognize that not everyone who is in the last phase of life needs opioids. Patients enrolled in hospice, for example, who typically have a prognosis of six months or less (the commonly used eligibility criterion) have a wide variety of diagnoses.  Of the 1.43 million Medicare patients enrolled in hospice in 2016 (only 5% of hospice patients are under age 65), 27% had cancer as their principal diagnosis. The remainder suffered primarily from cardiac disease, dementia or any of a number of other conditions. Some of the non-cancer patients experienced pain, but many suffered chiefly from other symptoms such as nausea, confusion, or fatigue, most of which are not treated with opioids. 

Among hospice patients who do experience pain, hospice nurses, under the direction of a physician, arrange for medical treatment—and this commonly includes opioids. Opioids are also sometimes prescribed to ameliorate severe shortness of breath. This last claim sounds paradoxical—don’t opioids cause respiratory depression? In large doses or when rapidly escalating the dose they suppress respiration. Patients who are short of breath due to advanced heart or lung disease and whose underlying cause of the shortness of breath is no longer treatable often feel as though they are suffocating. They become tremendously anxious—which makes their breathing even worse. Low doses of opioids in this setting can make them less anxious, terminating this vicious cycle and providing a modicum of relief. 

Conventional wisdom in palliative care circles (palliative care is an interdisciplinary approach to advanced illness that encompasses but is not synonymous with hospice) is that with expert pain management, 90% of pain in serious illness can be well-controlled. This involves use of round the clock medication with supplementary doses for “breakthrough pain,” pain that develops before the next scheduled dose of medication. The medication is usually administered orally or via a patch on the skin; occasionally, a continuous intravenous infusion (“pump”) is needed and even more occasionally, a sophisticated method of providing pain relief will be provided by an anesthesiologist (for example, an epidural injection or a nerve block).

So perhaps quality of life can be improved in the hospice setting, but is it at the cost of shortening life?  What’s fascinating is that effective pain and other symptom management at the end of life may actually prolong life. This was demonstrated most dramatically in a widely cited study of patients with very advanced lung cancer. In this study, patients who got early palliative care alongside of traditional oncologic care had a median survival of 11.6 months compared to 8.9 months among controls who had usual care but did not receive palliative care. To put this in perspective, a differential survival of 1.7 months is substantial in the world of cancer. If a new chemotherapy drug resulted in an extra 1.7 months of life compared to conventional treatment, the new drug would get expedited approval by the FDA and be enthusiastically promoted by oncologists.

Maybe palliative care can prolong life, but palliative care does a great deal more than treat pain. Maybe the life prolongation that was found in the lung cancer patients is because their depression was treated or because they declined experimental chemotherapy that actually shortened life. What do we know about opioids themselves? Do they shorten life? This question is difficult to answer definitively because it’s not ethical to do a randomized study—taking two groups of people and assigning one group good pain management and another group inadequate pain management. We do know that among home care patients who received high or escalating doses of opioids, survival was the same as among similar home care patients who got low dose opioids. 

Perhaps opioids don’t shorten life on average, but you might think they precipitate death when used in actively dying patients. Once again, there are no good studies to address this question and there will never be any because we cannot ethically randomize dying patients to either receive doses of medicine that are adequate to relieve pain or to be left in pain. But after reviewing the available observational literature, physicians concluded that opioids prescribed in the palliative care setting for dying patients do not result in death. In fact, they argue that the “doctrine of double effect,” which is widely cited as justifying opioid-induced death by arguing the intent was pain-relief and not death, need rarely if ever be invoked.

Despite the data indicating that pain management near the end of life is tremendously beneficial and, in competent hands, is associated with minimal risk, pain in this setting continues to be under-treated. Contrary to the public perception that hospice nurses deliberately give high dose opioids to put patients out their misery, nurses tend to under-treat patients because they worry that opioids will cause harm. A recent position statement by the American Society for Pain Management Nursing and the Hospice and Palliative Nurses Association exhorts its members to “advocate for humane and dignified care, promoting ethical, effective pain and symptom management without exception.” This is not an endorsement of either physician assisted suicide (legal in 7 states and the District of Columbia under highly specific circumstances) or euthanasia (illegal throughout the US). Rather, it is a ringing endorsement of the view that high-quality pain management improves quality of life until the very end—and can decrease the demand for interventions of last resort like physician assisted suicide.

Kicking the Bucket

Even though you think and behave perfectly normally, you might already have Alzheimer’s disease. In fact, you might warrant the label of  “pre-clinical Alzheimer’s disease” for a full 20 years before graduating to the full-fledged condition. That according to the latest definition of Alzheimer’s put forward by the National Institute on Aging together with Alzheimer’s Association 3 years ago.

Heralded as a radical departure from earlier clinical diagnostic criteria, the new definition is in line with how we think about other chronic conditions such as cancer or heart disease. Normal cells often mutate into cancerous cells and proliferate for a long time before there are enough of the to produce symptoms—and a cancer diagnosis. Plaques may be deposited in the lining of coronary arteries long before they narrow blood vessels enough to impair blood flow to the heart resulting in chest pain. In all these cases, the hope is that we may be able to intervene during the pre-symptomatic phase, altering what is currently the inevitable trajectory of illness. In the case of Alzheimer’s, detecting various “biomarkers” in the blood or cerebrospinal fluid would signal the need for some kind of biochemical intervention. The problem has been that we don’t as yet have any such intervention. For now, the main purpose of early diagnosis is to identify people who could enroll in research on the prevention of Alzheimer’s—assuming the diagnostic techniques are sufficiently reliable and the benefits of research outweigh the burdens of knowing what the future has in store.

Philosopher Dena Davis makes a different case for the value of early diagnosis in this month’s Journal of Medical Ethics. Knowing that a person is destined to develop dementia, she argues, is invaluable so he can kill himself.

The option of “rational suicide,” as Davis calls it, is based on wanting to avoid becoming dependent and on wanting to spare family the burden of caregiving, as well as the potential loss of an inheritance. The diabolical nature of dementia is that if you wait until you are a burden, until you can no longer do any of the things that once gave meaning to your life, then you will most likely have reached a stage where you have also lost the ability to take your own life or even to remember that you ever wanted to end your life if you developed advanced dementia. And those countries (such as Switzerland, Belgium,  and the Netherlands) and those American states (Montana, Oregon, Washington, and Vermont) where Physician Assisted Suicide (PAS) is legal all require that the patient be of sound mind at the time the request is made and that she have a prognosis of not more than 6 months. So PAS is not generally an option for people with dementia.

There is a gentler alternative to pre-emptive suicide, and that is drawing up an advance directive that authorizes the withholding of life-prolonging medical treatment in the event of dementia. But Davis discounts this option, claiming that courts and ethicists increasingly dispute the right of a person, while cognitively intact, to make any claims about the interests of his future demented self.

In fact, opponents of pre-emptive suicide such as Rebecca Dresser, whose response to Davis appears in the same issue of the ethics journal, say something a little different. They do not assert, as Davis contends, that competent Jane Doe should have no say over what happens to incompetent Jane Doe. That would make little sense as much of the point of advance directives is to plan for possible loss of competence. Rather, Dresser argues that “precedent autonomy,” in particular the choices made when competent, should be tempered by considering the present interests of demented Jane Doe. This is the dilemma of the happy dement that Dresser addressed in an earlier article on the subject. 

Suppose that today I am an anxious, driven, competitive person. I find the prospect of being unable to write articles or give talks or care for patients intolerable. But suppose that one day, I do lose my ability to write articles and give talks and care for patients. And suppose that lo and behold, I am no longer anxious or competitive. Instead, I am relaxed and cheerful. I smile at everyone indiscriminately. I am no longer inhibited and I clap my hands and tap my feet to all kinds of music. I’m no longer a picky eater and instead I say everything I’m served, no matter how bland or poorly prepared, is delicious. I don’t recognize my children but am glad to see them, just as I’m glad to see the aide who dresses me in the morning. Surely my best interest is in continuing to live as long as I can remain in my current state.

The challenge, as I think Rebecca Dresser understands and Dena Davis does not, is to balance the perspectives of Jane-Doe-ten-years-ago and Jane-Doe-today. How should we do this and who should be the arbiter? The way to proceed, I believe, is for former Jane Doe to identify the goal of care for her future self. Plausible goals are the prolongation of life, maximization of quality of life, or promotion of comfort. Death, parenthetically, is not a goal; it is a means to an end. Only rarely is it the only or the best means to achieving a legitimate goal. Most people, I suspect, would choose comfort as the goal in advanced dementia and maximizing quality of life as the goal in moderate dementia. All the physician needs to do is to translate that goal into practice. For an acute medical problem such as pneumonia, for example, comfort means using Tylenol to keep fever at bay and oxygen to ameliorate shortness of breath. Maximizing quality of life may mean using oral antibiotics—but not hospitalization in an intensive care unit with a ventilator for breathing.

We will never entirely be able to prevent people from committing suicide upon learning they are at substantial risk, if they live long enough, of developing clinical Alzheimer’s. After all, people can kill themselves when diagnosed with a disease such as metastatic cancer, even before they develop intolerable symptoms, though few do so. They could kill themselves prophylactically at age 65 or 70 to assure they will never get any awful disease, though most people do not choose this route.  Our responsibility, however, as clinicians, ethicists, and lawyers is to try to make sure that every individual can live as good a life as possible, whatever cards she has been dealt. That’s what a good society does.