The three goals of palliative care are the relief of physical, emotional, and spiritual distress. To accomplish this really well we need expert communication about what is happening and what to expect. We need skilled coordination across all the different settings that patients traverse in a serious illness.
We actually now have a growing body of evidence that supports what we’ve known in our hearts to be right; the scientific evidence shows that palliative care improves quality of life, prolongs life, and markedly reduces the risk of ending up in the hospital. There are very few other interventions in the healthcare system that you could say this about.
Recently, our colleagues at Massachusetts General did an important study on newly-diagnosed lung cancer patients. The control group was given excellent cancer care only. The intervention group got excellent cancer care plus palliative care. Those who got both had better quality of life and lower rates of depression, were much less likely to be hospitalized or receive chemotherapy in the last month of life, and to everyone’s surprise also lived on average 2.7 months longer.
This study hit the front page of all major media outlets. Not because of any of that other stuff, but because of those 2.7 months. My colleagues at Sinai called me and said, “Diane, did you see that paper? That can’t be true!” A large number of physicians seem to believe that with palliative care you might die better, but you will also die sooner. There is no data to support that myth, but it is the firmly held cognitive frame of doctors. When I show this data to regular people, they look at me like, “What’s the big deal? Of course people live longer if their quality of life is better.” There’s this huge disconnect between the profession and everyone else.
So what might be the mechanism of action for living longer with palliative care along with regular cancer care? What is the mechanism by which happiness might prolong life? We do know that depression is an independent predictor of mortality; if you have a stroke and are depressed, you will die sooner. If you have heart failure and are depressed, you will die sooner. If you have Alzheimer’s and are depressed, you will die sooner. Depression kills, and perhaps because there was a lot less depression in the palliative care group, they lived longer.
Okay, what about symptom control? Why would that help someone live longer? Pain also kills, and shortness of breath also kills. Perhaps they’re so stressful that all of your body’s energy and focus goes into bearing them, which takes away your resources from other things. It’s not clear, but that’s a second possibility. What else?
Personal human connection. What might be the mechanism of action of personal connection on longevity? There is an increasing body of evidence suggesting that mood impacts the immune system. Some people still reject it as too “touchy feely,” but I showed these data at a talk at a medical school in Cincinnati, and for some reason there were lab scientists in the audience, which is unusual, and one of them stood up in the back and said, “There was a study of mice who had received transplants and were immune-system suppressed, and some mice were randomly assigned to have great care but be alone. They had clean cages but were in the cages by themselves. They had food when they were supposed to get food, but that was it. The other group was randomly assigned to a much more interesting environment where there were a lot more wood shavings and pieces of cloth and toys. There was also more handling and talking from the staff, and access to food and other mice. This group lived four times longer than the control group.” So basically the biggest impact on survival wasn’t made by the drugs; it was all the stuff that everyone in the real world – except perhaps the medical system- understands is so critical to general well-being.
And finally, what do we know about being in the hospital if you are sick? It’s dangerous. It’s really dangerous. If you don’t absolutely have to be there, you should get out. And the reason is not that people there aren’t trying hard, not that they don’t care about you, not that they aren’t doing their best—it’s the risk of error, the risk of serious infection, the risk of falling in a strange place or becoming confused in a strange place, the risk of having your meds mixed up. There are over one hundred thousand deaths per year in this country that occur because someone was in the hospital. If you are a lung cancer patient and you are immune-suppressed with chemotherapy and radiation and you get a C. diff infection, you die. The risk to more vulnerable populations is even higher. So avoiding the hospital is actually among the most powerful possible explanations for this gain in life expectancy seen in the Mass General study. This is really hard to get across to the public; people persist in believing the hospital is the one safe place. We have to figure out a way to change that cognitive frame among the public.
We must increase public awareness of palliative care so people start demanding it. Demanding it of policy makers, demanding it of the providers. We have to educate patients, families, and providers. This is one of the goals of the New York Zen Center for Contemplative Care.
This is an excerpt from Awake at the Bedside: Contemplative Teachings on Palliative Care and End-of-Life Care edited by Koshin Paley Ellison and Matt Weingast.
Diane Meier, MD, is director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs in the United States.
Join us for the Fourth Biennial Contemplative Care Symposium, Building a Community of Care, on November 8-11. This is a collaborative event with New York Zen Center for Contemplative Care and The Garrison Institute. Click here for info and to register.
Image courtesy of sima dimitric.