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Something to talk about

by MAUREEN DOLAN
Staff Writer | November 21, 2010 8:00 PM

COEUR d’ALENE — A pragmatic approach to the dying process isn’t something that comes easily to most people.

The concept of hospice, end-of-life medical care that focuses on providing comfort and emotional support to the terminally ill, did not begin to gain traction in the U.S. until the 1970s. The first national Senate committee hearings on the subject of death with dignity took place in 1972.

Dr. Elizabeth Kubler-Ross, a pioneer in the research of death and dying, testified: “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”

Such is the crux of hospice and palliative care.

It wasn’t until 1982, 10 years after Kubler-Ross’s statement, that a hospice benefit was added to Medicare.

That was nearly 30 years ago, but a recent study shows that many people with advanced illnesses who may want this kind of care aren’t getting it.

Researchers at the Dartmouth Institute for Health Policy and Clinical Practice analyzed the hospital records of 236,000 Medicare patients with advanced cancer who died between 2003 and 2007.

Less than half of those patients received hospice services. Those patients died in hospitals surrounded by machines while doctors were still applying aggressive, curative treatments. In some cases, the report states “referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients.”

Paul Weil, executive director of Hospice of North Idaho, said 35 percent of patients live for seven days or less after being admitted to hospice.

“That really isn’t enough time for them to experience the full benefits of this type of care,” he said.

The Dartmouth researchers concluded that doctors and patients need to have more conversations with their patients and their families to ensure that the care administered reflects what people with terminal illnesses really want.

That is one of the goals of palliative care, but again, those are not conversations that come easily.

Weil acknowledges that it is difficult to talk about one’s own death, but it is an important discussion that must take place if an individual is going to make an educated choice about whether to continue aggressive treatment, or accept palliative or hospice care.

There are many misconceptions about hospice and palliative care. One is that it only serves cancer patients. Of the 150 patients now regularly served by Hospice of North Idaho, 65 percent do not have cancer.

Another misconception is that end-of-life care is about withholding treatment to save medical costs, Weil said.

During the political debates about President Obama’s 2009 health care bill, a provision to have Medicare and insurers pay for optional palliative care consultations led to arguments that the bill created “death panels” that would euthanize older Americans. The provision was removed from the bill before it was passed.

“Hospice and palliative care in no way shorten a person’s life span. We’re not talking about hastening a person’s death to save money. That is not what we’re talking about here,” Weil said. “It’s actually very aggressive care, but it’s a different kind of care. It’s very comprehensive, focused on comfort and quality of life versus cure.”

Medicare and private insurers already cover hospice care, and while there is coverage for palliative care, it is limited, Weil said.

Most insurances and Medicare usually cover hospice care only if the patient agrees to forego curative treatment options, and two doctors certify that death is less than six months away.

The bottom line, Weil said, is that good medical care is efficient care. Palliative care is gaining popularity because it is beneficial to patients, and aligned with their personal goals. It does often save the system money, he said, because unnecessary treatments are not being done, but that is not the goal or purpose of this type of care.

“It is about quality of life,” Weil said. “When people are always focused on fighting dying, they’re forgetting about the living piece.”

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