Ezekiel Emanuel, oncologists and health care ethics and policy expert, who served on Bill Clinton's abortive health care reform advisory panel, shares what he takes to be good news about dying in America:
Does this suggest that Americans are getting better care because their time in hospital is less than elsewhere? Or that the dying in the US are left to fend for themselves, with the unpaid, untrained, and under-supported help of their friends and family, until gasping for air and pain, they are rushed to the ICU?Death in America is frequently compared unfavorably with death in other countries, where people may not be as focused on extending life with every possible intervention. As Ian Morrison, the former president of the Institute for the Future, once wrote: “The Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.” He added, “Americans and the American health care system are uncomfortable with the inevitability of mortality.”But is it actually true that end-of-life care in America is more invasive and expensive than in other countries?We just published in the Journal of the American Medical Association the first systematic international comparison of end-of-life care for patients dying with cancer. We focused on cancer because, in developed countries, it is the second leading cause of death and the most expensive per patient. The good news is that, despite perceptions, the United States is actually not the worst when it comes to caring for these patients. In fact, on some important measures, we provide the best in end-of-life care.We found that in 2010, the most recent year with available data, just 22 percent of Americans dying with cancer died in the hospital, a lower rate than in Canada, England, Norway, the Netherlands, Belgium and Germany, the six other nations we studied. (If we include patients dying in skilled nursing facilities, the rate rises but is still under 30 percent.) Similarly, in the last six months of life, Americans spent the fewest days in the hospital, on average about a week and a half, compared with nearly four weeks in some other countries.In Canada, 52 percent of patients with cancer died in the hospital, and in the last six months of life, nearly 90 percent were admitted to the hospital for an average of around three weeks.But in other areas, the United States doesn’t look so good. Take admissions to the intensive care unit. In 2010, over 40 percent of Americans dying with cancer were admitted to the I.C.U. in the last six months of life — more than double any of the other countries we studied. On average, Americans dying with cancer spent twice as many days in the I.C.U. as patients from any other country.
Here is the reality of end of life care for real people living real lives in America, as recounted by a palliative care physician Sunita Puri :
In my first year of practice in palliative medicine, I made house calls to patients in South Los Angeles. My patients all lived in neighborhoods that ranked among the city’s lowest in both income and life expectancy. In these neighborhoods, people die an average of 10 years earlier than those who live less than 10 miles away. Many of my patients felt that they had barely lived their lives when I showed up, ostensibly to help them “die with dignity.”Death may be humanity’s great equalizer, but the inequalities suffered in life – leading to a shorter life expectancy – become inequalities in the experience of dying as well.
For what it is worth, here is an anecdote posted on the comments to Emanuel's op-ed:When I began my career, I had naïvely assumed that, if time were short, who wouldn’t prefer the familiarity of home and palliative medicine’s focus on quality of life to the chaotic mess of the hospital? But I’ve learned that even when my patients accept hospice services, the proverbial “good death at home” is often out of their reach. Fully experiencing the benefits of home hospice requires resources: involved, dedicated family members. Money to afford caregivers, particularly in the absence of involved family members. A neighborhood whose local pharmacy actually stocks opiate medications for severe pain. Insurance that covers stays in nursing homes so that family members can simply be family members instead of caretakers.Without these luxuries, which so many others take for granted, dying at home could actually be less comfortable than dying in the hospital. Over this past year, I have stepped across the wide gap between my idealistic conception of hospice care and the reality of providing it amid life circumstances that shape the circumstances of dying.
My dear cousin, in her early 60s died last week in California. She had been diagnosed with stage 4 lung cancer, metastasized to a brain mass a month or so ago. Last spring, the doctor said she had a spot on her lung, but there was no follow-through. She had no insurance, but was in Los Angeles, and qualified for Medi-Cal.Emanuel takes as a measure of quality the lower numbers of Americans who die in hospital. But in the real world, with very limited support from hospice (most of which are now for-profit and whose quality of care ranges from okay to dismal) from the point of view of those who are dying, and those who care for them, is this really better?
She was bounced from hospital to hotel to motel to a hospice (that was a room in someone's home) back to hospital, where she finally died. It is done. She is not coming back. But I like to think that with some unified care, or even simple compassion to the sick, her last months would not have been so desperate. Maybe instead of kicking her out of the hospital, they would have kept her there to treat her.. she was left to her own devices, and as she was too sick to work or advocate for herself, she struggled until she failed.
At her funeral last weekend, (which was a double funeral, as her mother could not survive her deep grief) I found even more disturbing stories of her last months - including the motel manager finding her outside her room, shivering in her PJs, and unconscious on the ground. In America. We can do better.