Deathwise end of life planning

My day began and ended thinking about “end-of-life” care. I am involved in a project at work to facilitate better discussions about end-of-life options, such as hospice and advanced directives. So, this evening, perusing the Annals of Internal Medicine (July 3, 2007), my attention was captured by a provocatively titled article, “Controlling Death: The False Promise of Advance Directives.”

Although published in a peer-reviewed journal, this treatise is clearly an opinion piece. Nevertheless, it is thought-provoking. The author, Henry Perkins, MD, from the Division of General Medicine at the University of Texas Health Science Center in San Antonio, uses a single case to make his points.

What he writes about this case rang true to me. He describes Mr. Jones who had a stroke and was suffering from repeated episodes of aspiration pneumonia because he had lost his gag reflex. Weary and discouraged by this, he responded to his primary care doctor’s suggestion to participate in “advance care planning”. He brought his wife with him to an appointment to discuss the issues. Both Mr. and Mrs. Jones agreed that he would only receive comfort care if he developed another aspiration pneumonia.

These good intentions unravel, however, when Mr. Jones, inevitably, develops another aspiration pneumonia. Frightened by her husband’s severe shortness of breath (this frightened me to when, as a practicing emergency physician, I walked into a treatment room with someone severely dyspneic—it is scary to see and must be indescribably scary to experience), Mrs. Jones panics and calls 911. The paramedics rush him to the hospital.

Mrs. Jones goes with him and brings the advance directive. The hospitalist reads it and responds appropriately by ordering only comfort care. Enter the daughter. I am sure she is also frightened and undoubtedly overwhelmed by the imminent prospect of losing her father. She chooses to play the “I am going to sue you” card, accusing both the hospitalist and her mother of “murdering Daddy”.

The daughter uses every tactic she can to get her father aggressive medical treatment, ranging from intimidating her mother and the hospitalist to calling the hospital chief of staff via the patient abuse hotline. After a lot of angst and emotional turmoil, everyone caves and Mr. Jones is given antibiotics. Of course, the treatment is futile and he eventually succumbs to respiratory failure. But the death was not pretty. This was probably not the imagined scene of dying in your own bed surrounded by loved ones stroking your head and holding your hands. Mrs. Jones is traumatized. The hospitalist is traumatized. And the daughter has alienated her mother at the time when they needed each other the most.

Dr. Perkins suggests that we shouldn’t be surprised by this outcome. He says that advanced directives are a flawed concept to begin with because you cannot anticipate all of the complexities (both emotional and structural) that occur when a medical crisis erupts. He sums it up by saying,

“Flawed in concept and not just use, advance directives provide little control over future care.”

He urges his physician readership to deemphasize the mechanics of completing an advance directive and rather spend much more time and energy on helping prepare patients and families for “death’s harsh and unpredictable reality; mutual support; nonformulaic, individualized care; and courageous decision making despite uncertainties.”

His article made me think of the deaths of my own loved ones, particularly my father who died of metastatic melanoma in my second year of medical school. My father always used to tell me (and everyone else) that if he got a terminal illness, he would throw himself off the Golden Gate Bridge. No way was he going to become a helpless invalid that people had to wait on. But when his illness progressed, his bravado regressed. In the final months of his illness, he never talked about ending his life. Instead, he was quite content to receive care at home from his devoted wife (my stepmother, Toni, and her daughter). The harsh and unpredictable reality of him dying from a horrible disease at a relatively young age changed the way he viewed the world when he was healthy and seemingly immortal.

Perhaps Dr. Perkins is right. Advanced directives are a theoretically good idea that don’t always mesh well with the harsh reality of dying.


  1. After 32 years in Pulmonary/Critical Care Medicine, I agree that a death can be a high stress mess like the one you described. I now teach patients in a 2 hour class (well attended) how to discuss their wishes with their loved ones and document them. In Washington State we now have the very useful POLST form (Physicians Orders for Life Sustaining Treatment – see my discussion about this on my blog at The advance directive in our state is quite weak. Two MD’s have to certify that you are terminally ill for a Living Will to be active – hardly a document for the crisis. I encourage patients to attach a statement about values, hopes, and fears. This is allowable in our state. Other than the POLST, the most important document from my perspective is the Durable Power of Attorney for Health Care. The Living Will takes a distant third place. Thanks for discussing this important topic.

  2. I wonder to what extent the daughter’s behavior in this instance reflects her unwillingness or inability to come to grips with HER OWN mortality. Might the scene have been different if the person executing the advance directive involved the whole family in his decision? With respect to the lawsuit issue, if we had specialized health courts that backed doctors and hospitals if they provided an appropriate standard of care (honoring the advance directive in this instance), perhaps playing the I’ll sue you card would not be as worrisome for either the hospital or the hospitalist. If anything, providers should probably be on shakier legal ground if they fail to honor the living will or advance directive.

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