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Study: Suffering At The End Of Life Getting Worse, Not Better

It鈥檚 been more than 15 years since the Institute of Medicine released its detailing the suffering many Americans experience at the end of life and offering sweeping recommendations on how to improve care.

So has dying in America gotten any less painful?

Despite across the country, the answer seems to be a resounding no. The number of Americans experiencing pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010, according to released Monday in the . In addition, depression in the last year of life increased by more than 26 percent.

That’s the case even though聽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.

鈥淲e鈥檝e put a lot of work into this and it鈥檚 not yielding what we thought it should be yielding. So what do we do now?鈥 asked study author Dr. Joanne Lynn, 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.聽 After each participant鈥檚 death, a family member was asked questions about the person鈥檚 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. 鈥淲e throw more medical treatment at patients who are on their way to dying, which keeps them in a difficult situation for much, much longer,鈥 she said. 鈥淲e鈥檝e increased the number of people put on ventilators and kept in hospitals, and we simply have more treatments that are possible to offer.鈥

The majority of our research, she added, focuses on wiping out diseases, rather than long-term supports or symptom management for people with chronic conditions or disabilities associated with aging: 鈥淭hink about how much we invest in curing Alzheimer鈥檚 disease, and how little we put into making the course of Alzheimer鈥檚 better.鈥

Most physicians tend to under-treat pain and other symptoms at the because they don鈥檛 recognize them or are hesitant to talk candidly about the process of dying and the pain associated with it, said Dr. Tim Ihrig, a palliative care physician at UnityPoint Health in Fort Dodge, Iowa.

鈥淎 lot of practitioners aren鈥檛 honest. We fail to empower patients with the truth,鈥 said Ihrig. 鈥淚n that setting, it鈥檚 easier to continue to do procedures and diagnostics rather than having that conversation, which is very honest and very difficult.鈥

Take a cancer patient who has stopped eating and is writhing in pain, he said. An oncologist might recognize the person is going to die, but rather than telling the patient, he or she begins another round of treatment that causes more pain and suffering.

鈥淲e don鈥檛 have the vernacular in our society to have the conversation about the end of life. People say, 鈥業 don鈥檛 want to take away someone鈥檚 hope.鈥 But in a metastatic pancreatic cancer, for example, we have to redefine what we mean by hope,鈥 he said, citing one of the most deadly cancers.

Often, those conversations aren鈥檛 happening until the last days or hours of life, according to Ihrig.

Jonathan Keyserling, a senior vice president with the National Hospice and Palliative Care Organization, points out that half of all hospice patients receive hospice care for less than 30 days.

鈥淚f these patients had been under the care of a hospice or palliative care program [earlier], their pain and symptoms could have been brought under control for a much longer and sustained period of time,鈥 Keyserling said via email.

It鈥檚 possible, however, that caregivers interviewed in the study simply reported more suffering, reflecting Americans鈥 changing awareness of pain and depression over the past decade.

鈥淲e鈥檝e raised the expectation of better pain management over the years, which may make [the caregivers interviewed] more likely to report it,鈥 says Rosemary Gibson, author of The Treatment Trap and senior advisor at The Hastings Center, a bioethics think tank based in New York. There are many more Americans diagnosed with depression today than in 1998, she added, 鈥渟o it鈥檚 not surprising that people would report it more.鈥

Nonetheless, Gibson said, the country has a long way to go in improving care at the end of life.聽 The increase in palliative care and hospice use over the last decade was just 鈥漚n oasis in the desert. We did nothing to stop the tsunami of overuse [of aggressive treatments] and doing things to people at the end of life that have no benefit.鈥

It鈥檚 time to pick up the speed of change, said study author Joann Lynn.

鈥淲e are all going to pass through this part of our lives, and we have a strong interest in its not being awful. So let鈥檚 buckle down and get it right.鈥

This article was produced by Kaiser Health News with support from .

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