[t]he number of people experiencing pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010, according to a study published Monday. And the number of people with depression in the last year of life increased by more than 26 percent.
All that happened as guidelines and quality measures for end-of-life care were developed, the number of palliative care programs rose and hospice use doubled between 2000 and 2009.
"We've put a lot of work into this and it's not yielding what we thought it should be yielding. So what do we do now?" asked Dr. Joanne Lynn, a study author who directs the Center for Elder Care and Advanced Illness at the Altarum Institute.
The study looked at 7,204 patients who died while enrolled in the national Health and Retirement study, a survey of Americans over age 50. After each participant's death, a family member was asked questions about the person's end-of-life experience, including whether the person suffered pain, depression or periodic confusion. Those three symptoms were all found to have become more prevalent over the 10-year analysis.
One reason, Lynn said, is that doctors are using a greater range of high-tech treatments, which can lengthen the process of dying without curing the patient. "We throw more medical treatment at patients who are on their way to dying, which keeps them in a difficult situation for much, much longer," she said. "We've increased the number of people put on ventilators and kept in hospitals, and we simply have more treatments that are possible to offer."
Medical research focuses on wiping out diseases, Lynn says, rather than on long-term support or symptom management for people with chronic conditions or disabilities associated with aging: "Think about how much we invest in curing Alzheimer's disease, and how little we put into making the course of Alzheimer's better."
I suspect that one confounding factor in the (mal)treatment of the dying has to do with how much money there is to be made in hospice care. As the Washington Post noted in a story a few months ago:
End-of-life care is now a billion-dollar industry, with usage growing and more for-profit facilities entering the field.
The influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.
But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.
On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.
The typical for-profit hospice:
●Spends less on nursing per patient.
●Is less likely to have sent a nurse to a patient’s home in the last days of life.
●Is less likely to provide more intense levels of care for patients undergoing a crisis in their symptoms.
●Has a higher percentage of patients who drop out of hospice care before dying. High rates of dropout are often viewed as a sign that patients were pushed out of hospice when their care grew expensive, left dissatisfied or were enrolled for hospice even though they were not close to death.
The quality of individual hospices varies widely. In some cases, for-profit hospices provide service at levels comparable to nonprofits, according to the review. But the data analysis, based on hundreds of thousands of Medicare patient and hospice records from 2013, shows that the gap between the for-profits as a whole and nonprofits is striking and consistent, regardless of hospice size.There are many other factors at work here, including those Lynn notes: we seem to be in a perfect storm of revenue and profit seeking mixed with cultural reluctance to discuss and confront impending.Too many people conflate ending futile treatments with signing a death warrant, and medical realism with failure to care.
For more on this, read Atul Gawande's "Letting Go". And here's some music to read it by: