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Palliative Care Perspectives : Chapter 5: Non-Pain Symptom Management : Introduction to Non-Pain Symptom Management

The stories that ill people tell come out of their bodies. The body sets in motion the need for new stories when its disease disrupts the old stories.

Arthur Frank
The Wounded Storyteller:
Body, Illness and Ethics

I was at the movie theater on a Saturday when I received a page about Mr. A. He was scheduled to be admitted to our hospice ward that coming Monday. I had not met Mr. A. The resident was very sorry to disturb me, but she needed to ask, "Can your hospice do IVs and antibiotics?" I sighed quietly, having had similar discussions many times before. "Yes," I replied, "We can. The question is - would those therapies be helpful relative to what we are trying to do." The resident explained that Mr. A. had bowel obstruction and was receiving the usual care. He had a nasogastric tube (NG) in place and an IV running. His nausea was being treated with lorazepam. The problem was that Mr. A. wanted to see his son, who was in the Philippines, before he died. There were visa issues, and it might take a few weeks to get things straightened out. Thus, the family was interested in keeping him alive until then. Again, the resident apologized. Life prolongation seemed to be against hospice philosophy, but the resident asked if we could make an exception in this case given the importance of the son's visit. Unfortunately, Mr. A. was obtunded, but it would be so important to the family.

I explained that hospice is not opposed to people living longer. Life is an important aspect of quality of life, so if there were simple things we could do to increase the chance that Mr. A. would get see his son, this was completely in keeping with hospice philosophy and fine with me. In the meantime, I wondered out loud, would the team be interested in some suggestions for his care. "Please," replied the resident. I suggested that octreotide be added to his drug regimen and that a different antiemetic be used, as lorazepam was likely doing little other than sedating the patient. It was fine to keep the NG and IV in place for now. We would reevaluate their use when he came to hospice.

When he arrived we found Mr. A. sitting up in bed, smiling. "He woke up!" said his wife. His chart revealed that the amount of fluid draining from the NG had decreased dramatically following administration of octreotide. Over the next few days with various interventions we managed to discontinue the NG and the IV. He began to eat despite his continuing obstruction and became ambulatory. He was discharged to home hospice, where he lived for two months until shortly before his death, when he returned to our unit. Unfortunately, his son did not make it in time. However, his family remarked on how precious the extra time at home had been.

I share this story because it illustrates several points. First, palliative care should not be so much about what we do (IVs or antibiotics) as about why we do it. What is our intent, and how does this intent relate to the goals of care established by the patient, family, and clinicians? Second, many view the choice between palliative or hospice care and traditional medical care as being a choice between being comfortable (but inevitably dying sooner) in hospice and living longer, albeit with less comfort, in traditional care. In most cases this is a false choice. There is no good evidence that people, appropriately selected, who elect a palliative approach to care die sooner than do those in traditional care. It is also a false choice in that it implies to some that living longer in hospice is necessarily a bad thing, or at least is antithetical to hospice philosophy, which it is not.

As I will discuss further in the section on bowel obstruction, I believe Mr. A. lived better and longer because he received palliative care. "Standard therapy" for bowel obstruction, including long-term NG suction and IV fluids, may result in patients dying sooner than they would with state-of-the art palliative care. The treatment of Mr. A's nausea with lorazepam was inept and even harmful, but not unusual. Although people are just beginning to understand how little clinicians learn and know about pain management, few are aware that, if possible, ignorance of effective therapies for many non-pain symptoms is even greater than is that for pain.

One day several years ago an intern with whom I was working asked a very simple question. "What is the difference between Phenergan [promethazine] and Compazine [prochlorperazine]?" Although I had been doing palliative care for more than a year, I was embarrassed to admit to her and to myself that I did not know. Hence, I tried to find out. I was shocked to find that these medicines, which I had been using for years almost interchangeably, were almost exact opposites in their pharmacology. I just did not know.

Since then, I am still amazed at how little attention non-pain symptoms receive in medical education. I recall a conference I attended a few years ago. Half the conference was devoted to pain and the other half to various aspects of end-of-life care. I was asked to speak about non-pain symptoms. I thought, "This a peculiar balance - half the conference on one symptom, pain, and a one-hour session on non-pain symptoms." Of course, it was impossible to cover every non-pain symptom in one hour, and it is equally impossible to do justice here to the wide array of non-pain symptoms that may arise. Still, I will highlight some distressing symptoms often encountered in practice.

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.