Dec. 8, 2008

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When a Patient Forgoes Life-saving Treatment

Graham Ramsay Erica Seiguer Shenoy

It seems like a “no-brainer” decision: faced with certain death from renal failure or prolonged survival with dialysis, the right decision must be to start dialysis. Not so for one of the patients in my primary care clinic. Mrs. P is an absolutely lovely 70-ish lady whom I have gotten to know over the past year and a half in my clinic. I see her every three months for her multiple chronic medical conditions that include hypertension and renal insufficiency. She is always in good spirits, has a wonderful family and an active lifestyle. For the past several years, however, her kidney function has continued to worsen, and her nephrologist has recommended that she prepare herself for needing dialysis in the next two years or so. He would like her to have an AV fistula sooner rather than later, giving it the time it needs to mature.

When I read in the note from her previous visit to her nephrologist that she had serious misgivings about going forward with dialysis, it was hard for me to believe. To be certain, dialysis is a sometimes onerous process that puts patients at risk for all sorts of complications: infection, hypotension, cardiac arrhythmias to name a few. It requires patients to go to a local clinic several times a week and takes several hours to complete. Patients are often exhausted, drained physically and emotionally at the end of a session. On the other hand, the natural history of her current renal insufficiency is renal failure. Without a transplant or dialysis, death is certain. How long she might survive without dialysis and what her quality of life might be during that time, however, is a much grayer area.

At our next appointment, I wanted to ascertain what she knew about the need for dialysis and what refusing dialysis meant. She told me that she knew her kidneys were not working well, but that she felt “great.” She did not like the idea of being tied up to a machine several days a week. And, she told me, she had had a good life, and dying of kidney failure would be OK with her.

“So you understand that by not starting dialysis, your kidneys will eventually shut down and this will be fatal?” I ask. She acknowledges this reality. I do not mince words with her because I want to make sure we are both on the same page. In fact, her opposition to dialysis is much in keeping with her other medical decisions: to forgo colonoscopy or mammography. She takes her medications religiously, gets the flu vaccine each year, and tries her best with diet, but the invasiveness of other interventions are anathema to her.

Death after discontinuation of dialysis has been studied for many years and, in fact, in New England, one in three patients dying from end stage renal disease (ESRD) does so after discontinuation of dialysis. Some psychiatrists studying treatment refusal have found that most patients who choose to forgo dialysis are rational and competent to make decisions.

I believe Mrs. P is competent to make this decision, but at each of our appointments, I raise the issue—more as a point of discussion and not to try to convince her to accept treatment. At our last appointment, she told me how her husband, who is in poor health and who relies on her as a primary caregiver, had been recently ill. “Now how could I take care of him if I had to do dialysis?” she asked me. It seems one of her main concerns about dialysis is the effect it will have on her husband. I acknowledged her concern. Then I asked her what she would tell her husband to do if their roles were reversed. She looked at me, and we both knew that she would urge him to take care of himself and start dialysis.

Toward the end of this last appointment, I ask her to think about it some more and to talk about it again with her family and her nephrologist when he meets with him again in the next few months. I can see her dilemma and respect her choice, but I don’t know if it is the choice I would make if I were in her position.

—Erica Seiguer Shenoy, MD–PhD ’07, is a resident in internal medicine at Massachusetts General Hospital.

The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.

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Copyright 2008 by the President and Fellows of Harvard College