THE BLOG

What Ever Happened to the 'Good Death?'

02/20/2015 11:36 am ET | Updated Apr 22, 2015
Darko Novakovic via Getty Images

The phrase "a good death" sounds like a contradiction in terms.

After all, what's good about dying?

Woody Allen was famously quoted as saying, "I don't mind dying. I just don't want to be there when it happens."

The hard reality is that we're the first species in the history of life on Earth with the awareness of our own mortality. Most of us, particularly in the Western world, would rather not think about that. But some, beset by old age or infirmity, are compelled to.

Actually, the concept of a "good death" has been around for a long time and has a variety of meanings in different cultures

What it generally means is a death without pain and other stressful physical symptoms, preferably in the comfort of familiar surroundings such as home, rather than in the hospital, and with family and friends near at hand.

The Institute of Medicine (IOM) defines a "good death" as "one that is free from avoidable suffering, for patients, family and caregivers; is ingeneral accord with the patients' and families' wishes; and reasonablyconsistent with clinical, cultural and ethical standards.

The key part of this definition and the one that impacts most on the patient's quality of death is freedom from avoidable suffering...the alleviation of pain.

In 1997 the IOM released its seminal report, "Approaching Death: Improving Care at the End of Life," which recommended, among other things, puttinga greater emphasis on symptom management, and in particular palliative care. Yet here we are, 15 years later, with evidence pointing towards an ever more painful death.

This surprising finding is part of a recently released study in The Annals of Internal Medicine titled Symptom Trends in the Last Year of Life from 1998 to 2010. Researchers followed 7,000 participants and found that "despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased during that period."

The results were especially surprising since there has been a considerable increase in Palliative care and hospice care in America since the recommendations of the IOS report of 15 years ago.

We should have been doing a lot better on pain than the Annals study found.

This isn't some abstract academic study to be filed away in a dustyarchive for some future scholar to use in a paper. This is real life -- actually real end-of-life -- and we're all going to go through it one day. So we all have a vested interest in getting it right.

"Thanks to recent advances in pain treatments, roughly 90 to 95 percent of all dying patients should be able to experience substantial relief from pain," says June Dahl, Ph.D. and pharmacology professor at the University of Wisconsin,as reported on the HealthDay web site.

But physical pain is only part of it. Some 50 years ago, Dame Cicely Saunders, founder of the modern hospice movement and early advocate of palliative care, recognized the all-encompassing nature of pain within the whole person, and introduced the concept of "total pain." She saw pain as being made up of four domains: physical, psychological, social and spiritual, and she stressed that all four domains were equally important.

I suspect that a lot of the pain at the end of life is spiritual pain, which goes largely undiagnosed and therefore untreated.

When it comes to treating pain today, we're somewhat victims of our own success. We've developed marvelous high-tech treatments that let us extend the lives of even the most serious cases. But we've yet to strike the right balance between over-treating hopeless medical conditions and under-treating the accompanying pain and suffering.

In September of 2014, the IOS issued it long-awaited updated report entitled
"Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." The report re-emphasized that "a palliative approach can offer patients near the end of life and their families the best chance of maintaining the highest possible quality of life for the longest possible time."

Let's hope the message gets through to everyone involved in end-of-life care in America.