Fight Colorectal Cancer’s September 2012 patient webinar focused on issues that run rampant with misunderstanding and fear: palliative and hospice care.
Dr. Jim Meadows, Director of Palliative and Hospice Care at Tennessee Oncology, led the webinar. He spoke at length about palliative care, but not surprisingly, the majority of questions toward the end of the webinar focused on hospice care.
One listener had a good question that elicited a great response from Dr. Meadows. We wanted to share it with you.
Q: Isn’t hospice ‘end of life’ care? Why are you saying it prolongs life when I have heard of many people having to watch for days and even weeks while their loved one wastes away and dies? Why say it prolongs life, at what emotional cost to patient and family?
A: This is a great question for many reasons.
First off, the study demonstrating hospice can actually prolong life also showed hospice improved the quality of life for those patients. So patients not only lived longer, they actually felt better. The important take away message of this is the reassurance that enrolling in hospice will not hasten death.
It needs to be understood, hospice philosophy accepts death as a reality and the goal of hospice care is to neither prolong life nor hasten death. Hospice believes death should occur on its own time. That said, if while improving the quality of life for patients they happen to live longer, then all the better. Hospice does not believe life should be prolonged at the expense of patient suffering. So hospice doesn’t use these study results as a selling point – “Hey, enroll in hospice and we will make you live longer.” Hospice uses this study to say, “You need to understand, just because you are joining hospice doesn’t mean you will die sooner.”
There is a much greater point in this question, however. The insinuation is patients “waste away then die.” There is a great deal underneath that statement. Most people rarely encounter death. And when they do, they usually have tremendous misconceptions about how “natural death” occurs. The reality is, when most people die a “natural, non-traumatic death” they progressively get weaker, become bedbound, stop eating and drinking, become more lethargic, and eventually become unresponsive. This is the way death has occurred since the beginning of time.
Contrast this with what happens to hospitalized patients dying of disease. The reality is the same things are happening. Patients are bedbound. They are no longer eating and drinking. They are minimally responsive. The difference is families are surrounded by distractions. The person receives IV fluid, or tube feeds. They have monitors, EKGs, beeping pumps, etc, that carry the illusion the patient isn’t just “wasting away.” The reality is the patient is declining just as they would be if they weren’t receiving these interventions. And further, these interventions are doing nothing to slow the progression of death or improve patient comfort (for example, tube feedings and IV fluid very rarely improve comfort or lengthen survival and in fact can often cause worsening pain and actually hasten death).
One of the greatest benefits of good hospice care, especially when started early, is patients and families can be educated on what to expect, have their concerns about “wasting away” validated, and be better equipped to deal with the reality of death and the limitations of man and medical intervention.
Whenever I hear families express the concern we are just sitting and watching someone waste away, starving them, and “doing nothing,” the real issue is the person is struggling with their own reality of death and their own fears. Often these individuals will never see the situation any differently because they don’t accept the terms of death in the first place.
This is why having experts trained in managing these situations is so very important.
Last year, hospice provided care to 1.5 million people in the U.S. Obviously, there are cases where things don’t go as well as expected. But the vast majority of hospice care results in a far more comfortable, dignified death as compared to death experiences in hospital institutions.