A Focus on Cancer Patients
Quality of life issues are getting such focus in medicine these days that it’s easy to assume things were always this way. They weren’t. Patient-centered care was uncommon in most hospital settings even a decade ago. In the final part of my interview with Dr. Diane Meier, we talk further about the role of palliative care in medicine both now and in the future.
Q. Let’s talk about your palliative care work in terms of cancer control specifically.
Cancer is the archetypal disease that causes profound fear—terror—in patients and families. Sometimes that’s completely inappropriate because you can live with cancer as a chronic disease for many years, just as you could with emphysema or heart disease. Sometimes, increasingly, cancer can be cured. And sometimes the fears are justified…
So it’s a multidimensional experience. It’s an existential and spiritual challenge, it’s an emotional and psychological challenge, and it’s an enormous physical challenge.
And by the way, pain is not the most prominent physical symptom: fatigue is. Disabling fatigue that until you’ve experienced you cannot possibly understand how awful it is.
So it seems clear that regardless of the goal—whether cure, whether substantial life prolongation or palliation for as long as possible—that attending to these fundamental quality of life issues, the experience of life with this illness is of the highest priority.
We can make the remaining time precious and valuable by attending to the things that make life worth living. That seems logical and obvious, right?
But now there are randomized controlled trials that support that. The Temel study that randomly assigned lung cancer patients to either receive best cancer care (Massachusetts General), or the intervention group received (that same care) PLUS simultaneous palliative care—at the same time, in the cancer center, in the clinic.
Not surprisingly, the combined group—the palliative care/oncology treatment group had better quality of life, lower symptom burden, much less depression, less likely to be hospitalized in the last month of life, less likely to get chemo in the last 2 weeks of life & more likely to get hospice in a timely manner.
But what was very surprising… was the fact that the palliative care group lived almost 3 months longer than the usual care group.
To the public, this was like a no-brainer. Yes, if people are comfortable if they’re not depressed, if their families are supportive, if they understand what’s happening to them, if they feel like there’s a reason to get out of bed in the morning, of course they would live longer.
Doctors, on the other hand, did not believe the data. All the doctors I talked to said, “This can’t be true.” Literally: “This can’t be true” … not recognizing there are a lot of things that can prolong life aside from targeting the disease…
We know that depression, for example, is an independent predictor of death. If you’re depressed and you have cancer… you are much more likely to die. So addressing depression all by itself saves lives.
And if you stay out of the hospital you’re likely to live longer because it’s safer (for immune-suppressed cancer patients from chemo/radiation who would be exposed to more germs in hospitals).
To the public this is just obvious, it’s obvious that palliative care would help people live longer. But to professionals it’s cognitively dissonant. Therein, is the challenge.
Q. What are your passions outside of research?
I love my garden, I don’t get enough time with my garden. I’m so excited when you put a seed in the ground and you see this little green curve push its way up. It’s a miracle, and incredibly rewarding and fun and gratifying and nourishing. So I love that.
I read a lot. The one thing that frustrates me is that I don’t have enough time to read. I love to camp and canoe and kayak and hike. And I love to cook.
Q. What keeps you coming back day after day?
It is such a privilege to work with people who are facing these kinds of challenges. People often say to us, ‘how can you do this work? Isn’t it depressing?’ And the hidden secret in palliative care is the front row seat you get on love, courage, the things that really matter in life—the fact that you have time to listen to people, to begin to understand their inner life and be present with that—it’s such a huge privilege, and it is so personally and professionally enriching.
And I only hope that I’ll be able to take some of the lessons I have learned from my patients and their families… when my own time comes. Because I am repeatedly overwhelmed with respect & appreciation for human capacity & resilience in the face of what seem like daunting and devastating challenges.
Q. How do you “do” that kind of presence?
I think the issue of attention in modern life with Twitter & email & Facebook & politics and the press of the day, you almost never get time to be present in the moment. And one of the skills you have to learn in palliative care is to take a deep breath, put that aside and walk into the patient’s room and be fully present. And it requires self-awareness and self-discipline, but it is part of the professional practice. As many of my colleagues say, ‘We get so much more from it than we give.” And it’s true.
Q. What do you hope to be remembered for?
For trying to improve access to care that pays attention to who you are as a person and exists to support that.
I am far from the only person trying to do that. Lots of other are pulling in that same direction and have been fantastic leaders in that effort to transform the care of serious illness and in so doing transform the identity of medicine.
Q. What are you most happy with or most proud of in terms of what your work accomplished so far?
The number and caliber of young physicians and nurses that are choosing to train in palliative care and enter this field. Because that says to me that it will continue when I’m gone, and that we must have hit on something that is fundamental to the healing profession. So that young people who went to nursing or medical school to help people actually see this as a path that will take them there…. 10 years ago they would have been driven into a subspecialty, and maybe that would have been good and maybe it wouldn’t.
I believe the field of palliative medicine is rekindling the underlying fundamental principles and impulses of people who enter the health care profession and it provides people with the training, the research, the evidence base, the skill to actually accomplish what it was they went to school to do. And I find that the most gratifying aspect of what I do. Secondly, knowing that there are now about 1700 hospital palliative care teams in the US, and when I think about the number of human beings—and their families and friends—who are benefitted by that, it’s pretty remarkable and profound.
This concludes my interview with palliative care pioneer, Dr. Diane Meier. Thanks for reading. I hope you’ve enjoyed “seeing” Diane through her own words and stories. If you have any pertinent stories or questions, please share them on the blog.