End of Life: Concerns & Costs

Last week Elwood Raber, an uncle of my wife and a long-retired science teacher, died at 86 in the Masonic Village in Elizabethtown, Pennsylvania, after his body finally shut down in slow motion, like a clock not wound -- an agony for relatives to witness while recalling active times. The health care providers and hospice servants steadied that process with awareness, knowledge, and connection. In some ways, he was blessed while dying.

Twelve years after publication of a definitive study, with recommendations, by the Institute of Medicine, entitled Approaching Death: Improving Care at the End of Life (12/01/98, 437 pages), there have been many advancements in multi-faceted care provided to those who are dying, and tangentially to their loved ones. You can read the entire report and recommendations online, free. See also: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (07/25/02), and Describing Death in America: What We Need to Know (04/07/03), both issued by the National Cancer Policy Board.

Florence Wald, once Dean of the School of Nursing at Yale University, started the hospice movement in the United States in 1971, which now has grown to over 3,400 hospice organizations nationwide. See: Hospice founder leaves legacy (11/28/08) by Florence Dethy, published by the Yale Daily News.

Her Alma Mater, Yale University, through its medical, nursing, and theological graduate schools, has offered courses for inter-disciplinary, specialized study about all aspects of dying. See: End-of-Life Care Gets Emphasis in New Yale Curriculum (06/28/08), published in the Yale Bulletin.

The Yale School of Medicine has worked with the Schools of Nursing and Divinity, Yale Religious Ministries, and the Palliative Care Services of Yale-New Haven Hospital to develop an interdisciplinary program that will focus on symptom management, culture and spirituality, and the importance of a multi-disciplinary team approach to patient care. * * *

Still, the issue of cost expended in the treatment of those in a dying process remains largely unaddressed, because traditional medical services to those likely to die remain uncontrolled for the majority of Americans.

The staggering costs of end-of-life medical services were considered in an article originally posted Nov. 22, 2009, and updated on August 6, 2010, by CBS online in conjunction with a 60 Minutes video report (broadcast on Sunday, August 8, 2010), entitled The Cost of Dying: End-of-Life Care Patients' Last Two Months of Life Cost Medicare $50 Billion Last Year; Is There a Better Way?

Last year, Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.

Now you might think this would have been an obvious thing for Congress to address when it passed health care reform, but as we reported last November in the midst of the debate, what use to be a bipartisan issue has become a politically explosive one - a perfect example of the rising costs that threaten to bankrupt the country and how hard it is to rein them in.* * *

The future for many people who face death in hospitals is chilling, and so are the bills left behind:

[I]t costs up to $10,000 a day to maintain someone in the intensive care unit. Some patients remain here for weeks or even months; one has been there for six months.

"This is the way so many Americans die. Something like 18 to 20 percent of Americans spend their last days in an ICU," [Dr. Ira] Byock told Kroft. "And, you know, it's extremely expensive. It's uncomfortable. Many times they have to be sedated so that they don't reflexively pull out a tube, or sometimes their hands are restrained."

"This is not the way most people would want to spend their last days of life. And yet this has become almost the medical last rites for people as they die." * * *

While end-of-life patients are suffering from such therapies, medical resources become directed from progressive healing to simply sustaining, and the patient or relatives may not consider alternatives that may be more "multi-disciplinary" and personal.

After analyzing Medicare records for end-of-life treatment, Fisher is convinced that there is so much waste in the present system that if it were eliminated there would be no need to ration beneficial care to anyone.

Multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice and pain management.* * *

My friend, Ron Grenoble, a kind, intelligent, and quiet man, had sent the link for this article to me earlier today in an email.

He highlighted one quote, noteworthy for him, and now for me too:

Dr. Byock . . . says "modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily. . . . This is a hard time in human life. But it's just a part of life," Byock said.

"Collectively, as a culture, we really have to acknowledge that we're mortal," he said.