US News and World Report recently published an article summarizing the results of a study of Veterans Affairs hospitals. The study found that patients with cancer or dementia received better end-of-life counseling, more palliative care, and better end-of-life planning on the part of patients. Patients with kidney disease, heart failure, lung disease, or general frailty did not receive as much palliative care or plan as well.
Is this a systemic failure? Why cancer and dementia? Are these conditions treated by health care teams that involve specialists in planning whereas others are not? Is it–perhaps wrongly–presumed by doctors treating kidney disease, heart failure, lung disease, and frailty that their patients will retain decision-making capacity, whereas oncologists and those treating dementia patients believe–perhaps rightly–that there is a good chance their patients will lost decision-making capacity? Why is such counseling not universally available, even in the VA? Or is it universally available, and only undertaken by certain patient groups?
Active duty military personnel routinely complete basic legal advance directives such as health care power of attorney, living will, do-not-resuscitate orders, etc. The VA’s website has a standard form for Living Will and Durable Power of Attorney for Health Care. How is it that advance care planning tracks diagnostic categories so closely?
This image shows a picture of the headstone at Nancy Beth Cruzan’s gravesite. It has three dates on it: Born (July 20, 1957); Departed (Jan 11, 1983, the day of her accident); and At Peace (Dec 26, 1990, the day she was removed from life support and died).
21 years ago, Emmanuel et al. published their influential article “
Advance Care Planning As A Process” in which they joined a growing chorus of ethicists calling for routinization of advance care planning, and discussion even with patients who do not have terminal illnesses followed by regular updates of advance care documentation. When this Editor teaches advance directives and prospective autonomy, the subject follows on the heels of discussion of the case of
Nancy Cruzan, who was a young healthy woman at the time she was found face down in a watery ditch and rescuscitated after an unknown period of time without oxygen. She never recovered from the persistent vegetative state in which she found herself.
Cases like Cruzan’s, and advice such as that given by Emmanuel et al., direct us to the general importance of giving some indication of our wishes to our likely surrogate decision-makers and/or to our physicians regardless of our disease state. And yet whether or not this has been done appears to track particular disease states within the VA hospital system. Lack of adequate palliative care and advance care planning remain serious issues with end-of-life care in the United States. This is a problem bioethics and medicine have yet to adequately address, and it remains complicated by the motley assortment of health care delivery systems in the U.S. As the U.S. News article notes,
Outside the VA system, patients may not get their choice of whether they get end-of-life care or not. Currently, Medicare patients have to choose whether to get palliative care or continue with curative care — they can’t have both, according to Dr. F. Amos Bailey. He is a palliative care physician at the University of Colorado School of Medicine in Aurora.
None of us are getting out of here alive. We have no control over whether we die, but we could have some over how. Should more of us be able to exercise it? What kinds of systemic factors inhibit that, and what kinds of systemic changes would make it possible?
