Seven years ago, my 78-year old mother lay dying from lymphoma in her New York City hospital room. Her body was giving up its fight for life after four long years of aggressive chemotherapy treatments. With faltering vital signs, it was clear this was not just one of the many battles she had fought to stave off the encroaching disease. With her organs failing, my mother rapidly transitioned from ill at home to dying in the hospital, with no time to obtain hospice care. Gathered together, my family and I kept vigil by my mother's bedside.
Although it was clear my mother was dying, doctors doing rounds continued to bombard my three brothers and me with offers of tests and procedures. My father, overwhelmed with emotion and fear, would have agreed to all the young residents proffered if my twin brother, an MD, had not intervened.
With my brother’s guidance, we knew to ask if there was any benefit to additional testing and if the findings would have an impact on my mother’s prognosis. The attending doctors conceded that aggressive interventions would not reverse my mother’s decline. My family and I determined to use the time remaining to keep my mother comfortable and to say goodbye.
Echoing this real life experience is a longitudinal study released in April by the Dartmouth Atlas Project on trends and variation in end-of-life care. This geographically diverse report found an increase in the intensity of care for Medicare patients that were hospitalized and chronically ill. According to the analysis, hospice care is on the rise, but so is aggressive in-hospital care. Medicare patients diagnosed with severe chronic illnesses had more physician visits, especially with specialists, and spent more time in intensive care units.
This story isn't new. Increasingly, studies are finding that in America, we continue to accept — even push for — aggressive, technology-heavy care even though it may do nothing for our health and undermine the short time we have left.
“In addition to its effects on patients’ quality of life, unnecessarily aggressive care carries a high financial cost. About one-fourth of all Medicare spending goes to pay for the care of patients in their last years of life,” said David C. Goodman, M.D., M.S., lead author and co-principal investigator for the Dartmouth Atlas Project and director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice. “It may be possible to reduce spending, while also improving the quality of care, by ensuring that patience preferences are more closely followed,” he said.
Overall, Dartmouth’s trend study, which analyzed data from 2003-2007, found that chronically ill patients were more likely to be treated by 10 or more doctors in the last six months of their life.
Another piece of evidence that points to re-examination of end-of-life care is a report released in January by the Boston-based Hebrew Senior Life’s Institute for Aging Research. The HSL study reported similar aggressive end-of-life care in nursing homes. Examining Medicare spending for 323 nursing home residents with advanced dementia – a terminal illness - in 22 Boston-area facilities, the study found that Medicare costs rose by 65 percent in the last four quarters before death due to an increase in the delivery of acute care services and hospice care.
To enhance quality of life while simultaneously controlling costs, the HSL study recommends shifting end-of-life care away from aggressive treatments in favor of high-quality palliative care that emphasizes a comfort care approach.
Dr. Susan Mitchell, a senior scientist at HSL’s Institute, said: “The strong association between the lack of a DNH (Do Not Hospitalize) order and higher acute care expenditures supports the notion that advance care planning may be a key step toward preventing aggressive (and expensive) end-of-life care.” It might also help better prepare families when end-of-life discussions begin.
Both the HSL and Dartmouth studies point to an obvious take-away: When it comes to the advanced stages of dying, our first response is an arsenal of medical weaponry to stave off the inevitable. Omitted in this scenario is when and how to let loved ones go.
The same month HSL released its report, the Obama administration, aware of studies supporting less aggressive and costly end-of-life care, tried to include a Medicare benefit for end-of-life counseling in its Health Care Reform Act. But instead of triggering a thoughtful debate, the administration was immediately pummeled by political blowback. Under a tirade of “death panel” accusations, the administration dropped the end-of-life counseling benefit.
Political pundits and the general public, often at odds, agree on one thing: Medicare costs are spiraling out of control. But no one agrees on what to do about it.
For fiscal year 2012, the budget allocation for Medicare is $468 billion. When including Medicaid, the total mandatory allocation is $793 billion, or 23 percent of the federal budget.
On a personal note, my brothers and i just moved my 86-year old father out of his New Jersey apartment. He had been living independently, as a determined widower, since my mother's death in 2004. A recent fall precipitated a hospital stay, which led to 10 days in rehab and ultimately to his current move into an assisted living facility near where I live here in Cambridge, Mass.
Like many seniors, my father has carefully avoided discussions about end-of-life care. Death frightens him and he has not taken easily to aging. However, with each of my father's recent moves, a Do Not Resuscitate (DNR) form has been conditional with each admission. My brothers and I may not agree on everything, but on the DNR we all agreed, as did my father. Having received our permission and our support, my father signed the form.
I wouldn't compare signing the DNR with having a heart-to-heart about end-of-life care, but a critical decision was made that will stay in my father's record. When the time comes, we will have a way forward that reflects my father's wishes.
This program aired on June 13, 2011. The audio for this program is not available.