Sunday, September 1, 2013

End of life from 20,000 feet

By Ken Murray, MD

During the past year, after the publication of my essay "How Doctors Die," I've had the chance to speak to many groups, and it has given me a big-picture perspective on what's happening in end-of-life practice. I want to relate what I'm hearing because it encompasses a dramatic change in what I've seen in the past 40 years.

The enactment of the Patient Protection and Affordable Care Act, and particularly the controversy around the so called "death panel" saga, have brought the issues of terminal care and death to the forefront of people's thinking, and it has them talking.

We have had a hospice movement in the United States for some decades, but the service finally became available to most Americans in the past 10 years. It was only in 2006 that hospice and palliative care were recognized as formal board certifications. Hospice is now part of American physicians' training, and no city of significant size is without the service. Hospice has become so widespread that most Americans have now heard of it, and the associations that most people have with it are positive.

An article published this year in The Journal of the American Medical Association titled "Change in End-of-Life Care for Medicare Beneficiaries" demonstrates a dramatic increase in American hospice use from 2000 to 2009 -- doubling from about 20 percent to about 40 percent. To read the article, visit http://jama.jamanetwork.com/article.aspx?articleid=1568250. This article notes many short hospice stays, as well as an increase in ICU usage prior to hospice, but I don't think these are bad things. I think when major changes in medicine happen, physicians take some time to acclimate to the newer approaches and try them out in selected situations before widely adopting them. I think that is what's happening now. The paper also notes a change in location of death. More people are dying at home, which is the expressed desire of most people asked in polls on the subject. According to the Centers for Disease Control and Prevention (CDC), Death at home increased from 15 percent in 1989 to 24 percent in 2007.

Dying at home is one facet of what constitutes a "good death," as noted in "Moving toward peace: an analysis of the concept of a good death," published in 2006 by the American Journal of Hospice & Palliative Medicine. Other factors that characterize a "good death" include a sense of autonomy, the presence of family members, a sense of control over the process, and control of pain. The increased use of hospice and home locations, which would almost certainly enhance every aspect noted by patients in this regard, would seem to indicate  a move in the right direction in end-of-life care.

The patient empowerment movement has also had a dramatic impact in the power patients exert over their fates. While there are major weaknesses with how it is done,
a concept known as informed consent is the rule of the land and has patients asking more questions about their fates than ever before. They want to know alternatives and their effect on quality of life, realistic outcome expectations, and the costs associated with options, among other things.

Most patients now come to the medical table having researched their problems, and they are far more informed -- with good information and bad -- than ever before. More than ever, they understand there are options for evaluation and treatment, and they want to discuss them. Examples include non-surgical treatment of back pain, non-pharmaceutical treatment of hypertension and cholesterol, and nutritional treatment of everything. Many physicians find this a pain, but greater patient involvement and understanding can be a good thing.

The state of American medicine has evolved such that there is an unusual alignment. For the most part, patients don't want futile care at the end of life. Most physicians hate providing it. Insurance companies don't like extraordinary expenses. The government does not see patients benefiting from all this unwanted care. Hospitals are at risk of huge financial losses from Medicare patients due to the Diagnosis-Related Group (DRG) system. Patients' families find great dissatisfaction when their loved ones are over treated. This has almost everyone involved in the drama pulling for appropriate care that is actually beneficial in a way that is meaningful. It will be interesting to see if the influence all of these factions bring to bear will accelerate the change that is already occurring.

Ken Murray, MD, is the author of "How Doctors Die," which was entered into the Pulitzer Price competition. Read the essay online at www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus.

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