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Newsletters: A Reader’s Response to Dr. Howard’s ‘End Of Life’ Article
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A Reader’s Response to Dr. Howard’s ‘End Of Life’ Article

First, I want to applaud the decision to deal with this very difficult subject. As noted in the editorial comment, it is not an easy subject to address, especially for HPEN patients who routinely struggle to maintain their good health. Yet, it is a subject worthy of being addressed, since when circumstances force one to address the issue, it is usually the absolute worst time to have to make these types of decisions. The short version of my story is that despite my wife’s long history as a TPN patient, we never contemplated what would happen if she became terminally ill. When that happened this Spring, at age 50, my immediate reaction was that it was important to continue TPN, as she had relied on TPN for nutrition for 25 years. I ultimately came to the realization that my first instincts in this difficult situation were probably not the best ones.

I will share with you in more detail my personal experience with this subject in case the article stimulates questions from others contemplating this difficult decision. My wife, Carol, was a Crohn’s patient with short bowel syndrome. During those years, she had a number of life threatening infections, including one this past January which resulted in temporary kidney failure. Being the fighter she was (which probably describes a lot of the individuals who manage to make it 25 years on TPN), she made it through each life-threatening episode, including the one this past January. Death, and the decisions which surround it, were the farthest things from our minds. However, this time, while she was still recovering from some of the effects of the infection, she developed symptoms of a bowel obstruction. Even this was not particularly concerning to us, as she had suffered through many such episodes in the past. This time would be different.

Exploratory surgery uncovered extensive cancer originating in the small intestine. It was determined relatively quickly that no treatment would be recommended, given the type and extent of cancer. Nevertheless, we hoped for a typical post-op recovery with some time afterwards to address questions relating to the cancer. The first week post-op was rather typical, and she was able to walk and converse. While the question of hospice care was discussed, we weren’t quite ready for that, and our preference was to find an agency that could assist with some conventional nursing at home, but that later on would be able to provide the hospice care that we would likely need. We had identified such an agency, but before we could transition home, things took a sudden turn for the worse. It was then that we realized that the questions we had preferred to put off, even in the face of the cancer diagnosis, would need to be addressed. By this time, my wife’s condition prevented her from being able to fully participate in the decisions that had to be made. TPN was stopped on a temporary basis to address the fluid build up, but the willingness to continue TPN was still high on my list of questions for the hospice organization as I continued to work out logistics for bringing my wife home. I was not ready to face the prospect of giving up the TPN, which for 25 years had truly been her lifeline. The hospice organization worked with me on that, and received approval from its medical director to continue TPN on the theory that it was not introduced because of the cancer, but was her regular source of nutrition.

Ultimately, she stabilized enough for me to move her home with the assistance of 24-hour care from the hospice organization. Again, I was focused on whether the TPN or at least some IV hydration should be restarted. A minimal amount of IV hydration was given for a short time, but the TPN was never restarted. Ultimately, I came to understand the basis for making the decision—as well as all of the other decisions related to her care. Although these decisions initially seemed difficult and complex, they were really quite simple. Each decision was based solely on what would make Carol more comfortable. While it seemed hard for me to grasp that not giving fluid and hydration would enhance her comfort, I soon realized that given the details of her condition, that was the case. It may also have had the effect of not prolonging her life. I don’t really know that. But even assuming it did, that also was in the end the right decision, due to the suffering involved at the end of her life, when she was no longer able to meaningfully communicate with me or others.

In our case, it was only a month from Carol’s diagnosis to her death so with the speed at which things were moving, there was not a lot of time to ponder these decisions. While I wish we had thought about, and talked about, some of these decisions more when she was doing better, I can’t honestly say it made a difference in the outcome. But, I think stimulating thought about these choices before they have to be made is absolutely the right thing for your publication to do.

—Steve Davidson

Editor’s note: The Oley Foundation is grateful to Mr. Davidson for sharing his story and his feelings on such a delicate subject. We’ve received a number of calls reflecting the same sentiments - that although painful, readers are in agreement that we did the right thing by addressing this topic.

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9/26/2016 » 9/30/2016
Malnutrition Awareness Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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