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17 Mar 2010The Women Who Did Not Mean “NO”
A case history *
An 82 year old Italian speaking grandmother with a very dedicated and loving large family was coming to the hospital three times a week to receive hemodialysis for kidney failure. 
This is a four or five hour process where tubes are attached to her blood vessels through a special connection called a fistula and her blood is run through a machine with a filter system to clean it of toxins since her kidneys are not functioning properly. She was viewed as having been depressed for approximately two years and frequently would be reluctant to come for her dialysis. She was on Prozac, an antidepressant, for about one year with no apparent change.
Recent Complication
Most recently the patient’s fistula clotted and there were no more readily available sites to reconnect the equipment. Surgery was recommended to create a new vascular site for the dialysis but the patient refused to go along with this procedure. The family explained that she had suffered enough and now just wanted to stop the dialysis and peacefully pass away.
Psychiatric Consultation
The first psychiatrist who saw the patient interviewed her with the family as translator and also understood enough Italian to confirm that this was what the patient was requesting. There was no evidence of significant depression or overt psychosis. The family was very sad about this decision but felt strongly about respecting her wishes.
Second Opinion
Because of the finality of such a decision, it was not unusual to have a second psychiatrist see the patient and I was asked to see her. Rather than use the family as a translator or have them be present during the interview, I asked a nursing supervisor who spoke Italian to do this task.
The patient related well and showed a clear sensorium, very much aware of her surroundings and the situation. She said that she did not want to die and enjoyed being at home visiting with her grandchildren and watching television. She was not in significant discomfort. However she believed that her children believed it was time for her to move on. She wrongly thought that her medical care was a financial burden to her family. She also believed that family members who brought her for dialysis were taking valuable time away from their jobs and family. She even could give examples of things that they had said to confirm this. She believed that the proposed surgery to establish her dialysis site was very unusual and the doctors resented doing it . (Both of these ideas were not true).
Therefore she thought that the right thing to do was to refuse the procedure and peacefully die. She viewed her family as respecting her statement that she did not want dialysis as proof that she was a burden to them.
The Resolution
I needed to do some sensitive delicate follow-up work with the patient and her family to get the patient to accept the surgical procedure and continue on dialysis. Once the family understood that the patient enjoyed her life and was not ready to die , they become very supportive and determined to help her in every way that they could. The family arranged a rotating schedule of drivers for her dialysis that included the grandchildren, which proved to very gratifying for all those concerned.
It should be mentioned that there are patients who decide to go off dialysis and end their lives. Most hospitals have a process usually in conjunction with a Hospital Ethics Committee where this can take place.
*This Case history is based on a case report in a a book that I wrote with Dr. Maria Tiamson-Kassab titled Practical Guidelines in Psychiatry- Psychosomatic Medicine published by Wolters Kluwer/Lippincott Williams & Wilkins 2nd E dition (2009).
Additional Comments
In 1972 the US Congress passed legislation providing that Medicare would cover the costs of dialysis regardless of the age of the patient. An important part of the debate concerning this legislation was when an actual patient was put on dialysis in front of the Congressional Committee discussing this impending bill. The statistics on the prolongation of lives in the United States because of the treatments now available are quite dramatic. While most of these treatments are done at dialysis centers, there are specific types of dialysis that allow it to be done at home with home dialysis or in an ongoing continuous manner, known as 
Continuous Ambulatory Peritoneal Dialysis (CAPD) , while a person goes on with their usual activities Many people undergoing this treatment have been able to maintain a very good quality of life. However, the time on dialysis has obviously altered people’s life styles and so have the medical complications that can occur with renal disease and the various treatments for it. There are also psychological sequelae of this medical condition and treatment. Advances in renal transplantation have allowed many people to come off dialysis after receiving a kidney transplant from a cadaver or live donor ( often a close relative ) This situation is a major life event and has it’s own medical and psychological implications. Many psychiatrists and other mental health specialists, particularly psychiatrists who are in the recently certified sub specialty field of Psychosomatic Medicine are interested in these issues. I look forward to discussing this topic in future blogs.
Your comments are welcome.
2 Responses to Refusing To Continue Dialysis
Lewis Cohen
March 17th, 2010 at 1:42 pm
Dr. Blumenfield’s case points out a few salient points about dialysis discontinuation, a practice that now precedes more than one in three deaths of patients who die after receiving this arduous treatment. The first is the miscommunication that can easily occur in eliciting histories from patients who are generally older (the dialysis population is increasingly geriatric). Both practitioners and families are often too quick to think they understand the patient’s preference. The second point is that cultural issues are often crucial in arriving at these decisions. These can range from country of origin, ethnicity, religion, etc.
As Dr. Blumenfield is aware, I have had a longstanding interest in dialysis withdrawal and the larger subject of renal palliative care. It interested me as a psychiatrist because it was not immediately obvious how it differed from a clinical suicide. However, I have now interviewed hundreds of patients and families and staff, and have come to realize that the vast majority of these cases are not only distinctly different from the suicide of a depressed and otherwise physically healthy individual, but are a compassionate and reasonable response to when “life support” treatments like dialysis are not prolonging life but instead prolonging dying. When that happens it is time to stop.
And sometimes, as I have attempted to describe in my book, No Good Deed, the deaths are wonderful experiences that positively affect everyone involved. It is wrong to coerce someone into continuing a treatment when they no longer want to. It is marvelous when a family can be supportive and have the opportunity to say ‘good-bye’ and express their love. It is great when staff respect that death is not always an implacable enemy, but can be a natural phenomenon that should be accepted.
My only quibble with the above case is the comment that a second psychiatrist’s opinion is warranted. Most of these cases do not need even a first psychiatrist’s opinion as nephrology staff often intimately know the patient and their family. While this case benefited by the second opinion (at least in the short run, as we don’t know what happened over the ensuing months or years), I would not want people to pathologize requests to stop treatment. ( I appreciate Dr. Cohen’s comments and also strongly recommend his new book “No Good Deed” which was published this year by Harper Collins and is available on Amazon or at book stores MB )
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