Informed Refusal

Before undergoing many health care interventions, patients are asked to give their informed consent.  In most cases, it represents a mere formality.  The patient has come to the healthcare facility for the express purpose of undergoing the test or treatment, and after a quick explanation, the patient signs the consent form.  But not always – sometimes patients elect not to go through with it.

I know a woman in her late 70s, a highly accomplished health professional with a long and remarkably distinguished record of career achievement, who was recently diagnosed with cancer.  Her physician advised a complete diagnostic workup to determine how far the disease has spread, to be followed by courses of radiation and chemotherapy.  A vast and sophisticated medical armamentarium, unprecedented in the history of medicine, stands at the ready to take the full measure of her disease and then beat it back.

Yet after her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further.  Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine.  Why?

On hearing such a story, some of my medical colleagues question the patient’s soundness of mind.  Could she be depressed?  Might she be in the early stages of dementia?  Could she have simply failed to grasp the full gravity of her situation?  To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality.  The solution?  Her physicians need to sit her down again and explain the situation more clearly.  Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.

Yet to those who know her, these explanations are unsatisfactory.  We cannot attribute her decision to a lack of intelligence or sophistication about healthcare.  She has spent her entire career in the field, and helped to care for countless patients with life-threatening conditions, many of whom eventually died.  She knows what the care of such patients looks and feels like from firsthand experience.  She understands the risks of declining further treatment at least as well as many of the health professionals caring for her.

She knows death, and she also knows life.  For as long as most of her family and friends have known her, her life has been characterized by a remarkable degree of dedication and joy.  She personifies the ancient injunction, “Seize the day!”  She has deeply considered what she would be willing to lay on the line for a chance at curing her disease, and she has a clear view of what, at this point in her life, she is living for.  She knows what she is doing.

Many factors enter into her decision.  One is her close acquaintance with the suffering that would accompany a medical full-court press, taking full advantage of medicine’s diagnostic and therapeutic powers.  She knows that we physicians, in our zeal to make patients better, sometimes make them worse.  It is not that she is afraid of the radiation and chemotherapy we would deploy to attack her cancer.  It is more that right now she looks and feels healthy, and at her age she does not want to relinquish the opportunity to spend her remaining days living as fully as she can.

Another factor in her decision is the death of her husband several years ago.  As she puts it, since then her life “just hasn’t been the same.”  It is not that she cannot live without him.  She has proved to herself and her family that she is perfectly capable of living alone.  It is just that there is now less in life to savor, and the days seem emptier than they did when she had him to share them with.  While people react to such losses differently, who could call it irrational to feel only half alive absent the love of your life?

Another factor is courage.  She is simply not afraid of dying.  It is not that she is certain that a better life awaits her on the other side.  Nor does she have a plan to end her life if she begins to feel too sick.  On the contrary, her lack of fear is grounded in the confidence that she can die well.

What does a good death mean to her?  It does not mean spending her last days in a medical intensive care unit, hooked up to monitors, catheters, and tubes.  Instead it means dying at home, or at least in as home-like an environment as possible.  It does not mean dying alone, surrounded by nothing but machines and medical personnel.  Instead she hopes to spend her remaining time with friends and family, enjoying some of the best conversations of her life.

When she thinks about death, she sees it as one more chance at discovery in a life that has been filled with learning and teaching.  She plans to approach her illness with as much curiosity, patience, and compassion as she can muster, sharing with those at her side the lessons that come to a thoughtful person facing the end of a long, full life.

Why is she opting not to sign the informed consent form?  Because she envisions her last months as the final, fitting chapter of a life well lived – her chance to live up to all she has been pursuing since her youth.  As she sees it, she is not refusing treatment.  She is affirming life.  She knows that its end is every bit as natural as its beginning.  Her goal is not to live forever, but to live each day to the fullest and, when her time finally comes, to take her leave of it as gracefully as she can.

Richard Gunderman, MD, PhD, is Professor of Radiology, Pediatrics, Medical Education, Philosophy, Liberal Arts, and Philanthropy at Indiana University; he was a past president of the faculty at Indiana University School of Medicine and currently serves as Vice Chair of Radiology. Gunderman is also the 2013 Spinoza professor at the University of Amsterdam, the author of over 380 scholarly articles and has published eight books, including Achieving Excellence in Medical EducationWe Make a Life by What We Give,  Leadership in Healthcare and most recently, X-Ray Vision.

9 replies »

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  2. Thanks for this excellent resource, Dr. Lahey. Those of us who provide spiritual and emotional support to patients, caregivers, medical providers, and the community in general benefit from having clinical resources to explain what we see repeatedly from experience.

    Becky Sansbury

  3. Through the story of his patient, Dr. Gunderman provided a panoramic view of the possibilities within life-affirming medical care. In this case it was not necessarily life extending. Or was it?

    As a hospice chaplain I spent time with many people who experienced more days of comfortable life after they discontinued aggressive treatment regimes. To the amazement of many, some of these patients also enjoyed a longer life that predicted.

    Studies have shown that improving overall quality of life provides numerous health benefits. Just think what would happen if more doctors supported this view in the last chapter of life as much as they do in the previous chapters. This one change might assist with the education of patients wisely suggested by Dr. Tim Lahey in his comment to this article.

    Here’s to life-affirming care in all chapters of life…and the right of a patient to accept or refuse the suggested medical plan.

  4. I wish more patients could be exposed to stories like this. By watching a physicians’ approach to his/her own treatment and death, patients might be more inclined to follow their lead and make choices that are best for them. Fighting diseases like cancer aggressively is often appropriate, but just as often passing on the extensive medical interventions is just as appropriate.

    Thank you for sharing such an important story and perspective.

  5. Richard,

    Thanks for a very nice post. I like that you recognized this as a wise choice and not an obstreperous patient obstructing the divine medical plan.

    It sounds like this patient had an unusually close acquaintance with medicine, and thus perhaps an insight about death and dying not all patients could have. This recollects for me the different rates of deferral of intensive care at the end of life physicians profess compared to others. Yet, from another angle, I wonder how we can educate our patients well enough to give more of them the opportunity to be wise in this way?

    Tim Lahey
    HIV doc and clinical ethicist

  6. Its easy sometimes to forget that there is a natural end to life. Prolonging life through sometimes heartbreaking intervention isn’t necessarily in some peoples best interests and we must, as health professionals respect this.
    Thank you Richard for sharing this insightful article.

  7. I had a small boat. Raised my kids tooling around the bay to swimming holes, hidden beaches and sunsets. My five-year-old son caught his first fish off that boat, a sand shark. We heard about how he had beaten a shark, for many years.

    The boat became aged. I took it too the yard and said, “fix my boat.” The mechanic examined it carefully and he said, “You know, I can fix the deck, rebuild the motor, replace the wiring and repair about a dozen other problems. However, your boat is old. Perhaps, the time has come, not to “fix” it.”

    It seems to me that so many patients never hear the words, the choice, not to “fix” it. Unlike my boat mechanic, doctors default to treatment and intervention, somehow forgetting the context of life that each patient inhabits. We see them as patients and forget they are people.

    This wonderful woman found the strength, because of her long view, to decline aggressive care. She seems to have combined a wonder of life and what is truly possible with an acceptance of the painful knowledge that much of that is past. She has a deep maturity, gained by experience, that life does end and if we are not careful, it ends badly.

    I do not know this woman and therefore cannot speak to her soul. I would suggest that such a decision does not require overcoming our fear of death. It does not mean that one understands immortality, or that one does not tremble in the night. Such a decision requires a love of living.

    I will always have the memory of those children, those sunsets and the brilliance of life in the eyes of a small boy and his shark. I had a small boat.