Ending End-of-Life Phobia — A Prescription for Enlightened Health Care Reform (New Eng Jour Med)

[pinto]

http://healthcarereform.nejm.org/?p=2580&query=TOC#

Ending End-of-Life Phobia — A Prescription for Enlightened Health Care Reform
Benjamin W. Corn, M.D.

Reform is coming to U.S. health care. A sense of urgency regarding the redesign of policies prevailed well before Barack Obama was elected president under the banner of change. A debate is now raging over a wide span of topics, including prescription plans, physician reimbursement, and solutions for the medical liability problem. But thought leaders have been remarkably reticent with respect to one aspect of the health care system: end-of-life care. Given that patients with terminal illness require a disproportionate concentration of expenditures, the silence is deafening. Sure, the summer’s controversy over “death panels” provided fodder for late-night comedians, but just under the surface of the joking there was evidence of America’s uneasiness with the hard conversations that lay ahead. Why has it been so difficult to initiate a dialogue about matters pertaining to a subject that defines the human experience?

As a cancer specialist, I am actually not surprised by this state of affairs. Patients, family members, and (yes) even many of my colleagues have great difficulty in coping with thoughts of death.1 Sophisticated mechanisms, ranging from the modern approach to dying (i.e., doing so outside the home, supported by high-tech equipment) to the use of euphemisms and gallows humor, have been developed to help us deny and sanitize death. People in general are most comfortable deferring questions that relate to their finitude.

But try as we may to avoid it, death has a way of intruding on our lives. Beyond my encounters inside the hospital, I am flooded by constant reminders of this point. Driving home from work last month, as a traffic jam began to clear, I noted that the remains from a fatal motor vehicle accident were being removed from the shoulder of the highway. The sight was horrific. As I write these words, a friend “tweets” that his uncle has lapsed into an irreversible coma. And several years ago, I was stunned to hear that a violent murder had been committed in the quiet suburban New York neighborhood where I grew up. These are dreadful developments that force me to confront my mortality.

Every human being fears death in his or her unique way. This anxiety often shunts us onto a path of least resistance, veering away from the processing of basic existential issues. But this diversion may represent a lost opportunity, since an awareness of death can catalyze positive transformations.2

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As the U.S. health care system braces for reform, end-of-life concerns must be confronted squarely. Will hospice services be expanded? Should expensive experimental therapies that only slightly prolong life be deemed reimbursable? Can our profession evolve nuanced strategies for resolving questions of medical futility?5 Can we find creative ways for restoring dignity to the dying process? Should national guidelines be created for physician-assisted suicide? There is no shortage of topics that require attention.

Concerns over the end of life will never die. But denial of our mortality is no longer an option. If we muster the courage to address the last collective phobia of the Western world, we may generate ideas for truly comprehensive health care reform and better living.

Source Information

From the Institute of Radiotherapy, Tel Aviv Medical Center, and the Tel Aviv University School of Medicine — both in Tel Aviv, Israel; and the Department of Radiation Oncology, Jefferson Medical College, Philadelphia.

References

1.Shanafelt T, Adjei A, Meyskens FL. When your favorite patient relapses: physician grief and well-being in the practice of oncology. J Clin Oncol 2003;21:2616-2619.

2.Yalom ID. Staring at the sun: overcoming the terror of death. San Francisco: Jossey-Bass, 2008.

3.Rosenbaum ME, Loas J, Ferguson K. Using reflection activities to enhance teaching about end-of-life care. J Palliat Med 2005;8:1186-1195.

4.Blumenauer E. My near death panel experience. New York Times. November 15, 2009.

5.Burns JP, Truog RD. Futility: a concept in evolution. Chest 2007;132:1987-1993.

The New England Journal of Medicine, copyrighted © 2009 Massachusetts Medical Society.

http://healthcarereform.nejm.org/?p=2580&query=TOC#

[mucifer]

1. As both a hospice nurse and a person who's father died at home in hospice I must say

there is a lot of dignity in dying at home with lots of family present. It of course should be a choice. But, people really should be educated about their options and given support to do so.

[SharonAnn]

2. These are issues I'm starting to deal with due to my husband's terminal cancer.

Though he still wants to fight it and the chemo seems to be delaying things for the moment, that's not expected to last long. And I'm having a hard time talking to him about it.

He's not one to talk about his feelings much but I've seen him at some moments when he's been in serious pain and I could tell he was frightened. Since he's still in treatment, he's not yet eligible for Hospice, though I did get the director from the local Hospice to come over and talk to us about it, how they work, what to expect. Surprising to me, he wanted to be in on the conversation and had questions, yet after that visit it's like it never happened. He just doesn't acknowledge it. Yet I hope he's thinking about it inside even though he won't express it outwardly.

Trying to be open to life today and open to what tomorrow may bring is probably the hardest situation I've ever been in.

Yet, I treasure the time I can spend with him now and the love and care I can show him.

Other family deaths have been in car accidents and a drug overdose where there was not a chance show love beforehand.

Tough, tough things to think about at a time like this. And he's right, we need to have a way to talk about this.

[bemildred]

4. I just went through this with my brother.

Please accept my heartfelt sympathy, for both of you.

My brother dealt with it very well when I asked him to, but otherwise he preferred to take an optimistic line and enjoy life as long as he could as well as he could. I never saw any sign that he was afraid, but he very definitely did not want to go just yet. Being sick can be hard on one's self-image too.

You sound like you are doing a great job, keep it up. You should indeed treasure the time you have left.

[TexasObserver]

3. Recommend. We have to be more sane about dying.

Home is where people should die, not hospitals.

The ONLY reason people can't get sufficient meds to end it when they want is the control Big Pharm likes to exert over its products. You'll die when they say you can die.