December 02, 2018

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.