End-of-Life Care: Recent Research and Discussions

by Kathryn Bailey

Atul Gawande, a surgeon and staff writer at the New Yorker, became well known for his 2009 article, “The Cost Conundrum”, which used the town of McAllen, Texas to demonstrate that excess medical procedures played a major role in driving up the cost of health care in the United States. He posed many politically controversial ideas in this article, and it came as no surprise that he went on this year to discuss the highly personal topic of end-of -life care.

In his August 2010 New Yorker article, “Letting Go,” he does not examine the costs or benefits of measures taken at the end of a terminal illness in terms of dollars, but instead in terms of alignment with a patients wishes and stated values. However, since expense is the elephant in the room with this topic, the statistics are clear – over a quarter of America’s health care dollars are spent during the last six months of life. That is a lot of money. In the United States, we hold sacred the belief that no one, especially government, should ever be the ones to put a price tag on an extra day of life.  In other countries, this is more openly accepted – In the UK, the National Health System is usually instructed only to administer treatments that cost less than £30,000 per quality-of-life-year (QALY). Regardless of whether it should be, this will probably never be something we use in the United States.

In the US, as Gawande points out, the goal of modern medicine is to fight disease and death using all available tools, the goal being to extend life, even at the expense of the quality of existence.  Hospice care, otherwise known as end-of-life care, however, has a different goal.  It focuses on tailoring a medical plan to a person’s personal goals, and usually includes freedom from pain and discomfort, maintaining mental awareness, and being able to get out with one’s family.

Entering hospice care is associated with surrender. The reality is that no one wants to give up, not at 95 and especially not at 40.  A truly touching piece in the New York Times earlier this year talked about a young woman named Desiree Pardi’s experience with metastatic terminal breast cancer, and how she angrily refused palliative care when faced with the terminal nature of her disease. Interestingly, she happened to be the Director of Palliative Care at the Weill Cornell Medical Center.  This story emphasizes that this topic must be approached entirely without judgment. Of course people are going to look for hope in unlikely places when it’s the only hope they have. This decision must never be taken away from an individual. The problem, however, is that most people aren’t getting to decide at all.

Gawande references a study of terminal cancer patients, in which two-thirds of individuals reported having no discussion with their doctors about their goals for end-of-life care, despite being, on average, four months from death. However, he says:

“[t]he third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.”

And what’s more, contrary to popular belief, a study highlighted by Gawande and published in the Journal of Pain Management showed that in a 4,400 patient sample, when hospice care was elected, there was no difference in survival times between hospice and non-hospice Medicare patients with breast cancer, prostate cancer, and colorectal cancer.  Stopping curative treatment even extended survival for some patients, by an average of three weeks.

This is not meant to demonstrate that turning to hospice care at a certain point in an illness is correct for everyone – this is one area where there can be no across-the-board clinical guideline. However, research highlighted by Gawande shows that patients should at least be given an opportunity to develop a plan with an informed and compassionate provider.

Alexandra Drane, CEO of Eliza Corporation, started a campaign called Engage with Grace, which aims to encourage everyone to answer simple questions about preferences for end-of-life care before they are in a position where they are unable to express them. Her driving motivation is that “Eight out of ten people say it is ‘very’ or ‘somewhat’ important to write down EOL wishes, but only 36% actually have written instructions.”

The health reform act would have added Medicare coverage for advance directive conversations between patients and their doctors, until they were deemed “death panels” and stripped out of the legislation. Currently, there is only one palliative care doctor for every 31,000 people with an advanced illness, and 50% of hospitals lack a palliative care program. Given the vehement opposition to including palliative care reimbursement in the health care bill, it’s unlikely that Congress will follow through with any of the suggested policies to improve access to these services, such as increasing funding for National Institutes of Health in this area, and requiring hospitals to offer palliative care as a precondition for Medicaid and Medicare reimbursement.

The fact that palliative care and hospice care result in lower health care costs is a by-product of typically observed benefits for patients. There is no one set of correct priorities for any one patient, but policies do exist, which if enacted, would ensure that this responsible conversation would happen more often.

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