What does the term “palliative care” mean to you? Do you think about metastatic cancer, depression and Death Panels? About funerals and estate planning? Most likely, you don’t think about palliative care at all, or would very much prefer not to. But chances are, at some point, you’ll be faced with a decision related to palliative care, for either yourself or a family member.
The term “palliative care” is derived from the Latin palliare, which means, “to cloak,” and refers to treatment aimed at relieving symptoms and pain rather than effecting a cure. Hospice (perhaps a more familiar term to many) is a type of palliative care that is usually reserved for people in the end stages of terminal illness. Palliative care, on the other hand, may be offered to anyone who has a serious illness —regardless of life expectancy. The basic philosophy behind them both is the same. My wife Angela, a volunteer for Hospice By The Bay, described it this way.
“When everything important to a person is being stripped away by illness, it’s vital to give them the chance to hold onto dignity and autonomy, to receive compassion, to be comfortable, to be home, and to have as much quality of life as possible.”
I agree with my wife (imagine the trouble I would get into if I didn’t); this is a humane way to deal with serious illness. But I also recognize why many people choose to fight end-stage illness, no matter what the cost in terms of side effects and suffering. It’s a very personal calculation, but new evidence is suggesting that it need not be a stark “either-or” choice. This is because new data indicates that some patients with terminal illness may live longer with palliative care than with more aggressive treatment.
Consider the study by Dr. Jennifer S. Temel and colleagues published this past August in The New England Journal of Medicine. The authors compared two randomly assigned groups of patients with metastatic lung cancer – an aggressive care group (defined by no or late referral to palliative care and/or chemotherapy within the last 2 weeks of life) and a palliative care group (early palliative care integrated with standard oncology care). As expected, they found that those who received early palliative care had higher quality of life scores and lower levels of depressive symptoms. The goal of palliative care is, after all, to improve or maintain quality of life. Surprisingly, however, they also found that the palliative care group lived longer – more that 30% longer (11.6 months versus 8.9 months). Even when we keep in mind that this study examined patients with only one, specific subset of lung cancer, the ramifications are striking; palliative care may offer a chance to live longer and live better.
Other research supports this concept – Dr. Stephen R. Connor and colleagues have reported that patients with congestive heart failure and advanced cancer live longer with hospice care (remember, hospice is palliative care given to a certain segment of terminally ill patients) than without it. Recent journal articles have also reported on the successful integration of palliative care into both the oncology and intensive care environments. And, there are the anecdotal stories. Art Buchwald, former Washington Post columnist, wrote a book (Too Soon to Say Goodbye) chronicling one such story. Buchwald, on hospice for end-stage kidney failure, was expected to die within weeks, but instead survived nearly a year, becoming known at hospice as “The Man Who Would Not Die.”
So, knowing this, perhaps we need to re-define and re-frame the concept of palliative care. Dr. Robert J. Lavaysse, Director of Inpatient Palliative Care at Kaiser-Permanente San Rafael offered me one such description.
"Palliative care is about bringing the patient and their families' values and goals to the fore as the driver for medical decision-making. It is also about alleviating symptoms. We are understanding that these conversations need to happen upstream and not in the last few days, weeks or months of life." And this is an important point – palliative care is more than just narcotics for those on the brink of death – it is about providing support in illness – relieving pain and suffering, bringing family together, provide psychological support, and thinking about living wills and estates.
Hopefully the term palliative care is one that will keep its distance from your life, but should it encroach on you or your loved ones, I hope this column has helped you to understand it benefits – both those that are long established and those that we are just now unearthing.
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