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Today we are speaking with Dr. Thomas J. Smith, director of palliative medicine at Sidney Kimmel Comprehensive Cancer Center and professor of oncology at Johns Hopkins Medical School. Dr. Smith specializes in advanced pain management, hospice, and palliative medicine. He is one of the authors of the American Society of Clinical Oncology (ASCO) Provisional Clinical Opinion on integrating palliative care into standard oncology care, last updated in February of this year.
Cancer Network: Dr. Smith, what in your mind, defines palliative care and how does this depend on an individual, sometimes palliative care can be associated with negative meaning, but how do you define palliative care?
Dr. Smith: My definition is fairly simple. I am a medical oncologist as well as a hospice and palliative medicine doctor so I need to be relatively forthright with people. So I define it as medically appropriate goal-setting, open and honest communication, the best symptom assessment and control. Diane Meier, MD, who runs the center for palliative care has a more complicated definition which is also perfectly apt—that palliative care is specialized medical care for people with serious illness. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of their serious illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with the patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any stage and at any age for people with a serious illness and can be provided together with curative treatment. I would heartedly second that. One of my colleagues is a bone marrow transplanter, and he is boarded in hospice and palliative care at the same time, and he finds these simple things: medically appropriate goal setting, open and honest communication, the best symptom assessment, and control to be invaluable in his work as a transplanter.
Cancer Network: The ASCO clinical opinion has recommended that palliative care be integrated with cancer treatment early, just as you said, in the metastatic cancer patient’s care journey for any patient who is greatly burdened by their symptoms. Could you describe what was this recommendation based on? I believe it was several different trials.
Dr. Smith: Yes, there are multiple, randomized clinical trials as well as multiple single-arm trials all essentially showing the same thing. All show better communication, better symptom management when palliative care is involved, more use of advanced directives and hospice toward the end of life ( if that is appropriate) equal and in some cases better survival, and equal and even lesser cost both to society and patients and families. Kaiser Permanente in fact did two randomized clinical trials where seriously ill outpatients and seriously ill inpatients were randomized to the best medical care or best medical care plus an interdisciplinary palliative care team. And in both cases the investigators at Kaiser Permanente found there was a lot better communication, people lived just as long, their symptoms were a little bit better, they stayed home if that is what they wanted to do for a longer period of time, and it actually saved Kaiser Permanente and the patient’s money.
Then Marie Bakitas at Dartmouth did a project that she called ENABLE, and that was giving patients and families the tools to manage their own symptoms at home—so a nurse-based, education-based, palliative care intervention—and those patients actually lived slightly longer as well, although it was not statistically significant. But they had less depression, they had less anxiety, and their quality of life was better.
I think the capstone clinical trial so far was Jennifer Temel’s study of 151 lung cancer patients at Massachusetts General Hospital. Those patients were diagnosed with incurable lung cancer and were randomized right up front, rather than 3 weeks before their death. They got usual best medical care at Mass General for their lung cancer or the usual best medical care plus a palliative care team. The palliative care team met three or four times with the 75 patients in that arm. Again, the patients had much less anxiety, much less depression, their quality of life was better, they actually used hospice for a longer period of time. They had more advanced directives. Surprising though, in addition to all of those other good things, the patients lived 2.7 months longer if they got concurrent palliative care. The best correlation for living longer was understanding your disease. So it may be that having a palliative care team to help educate you about your illness and the goals of treatment and for whom it is safe, for you as a patient to ask questions, makes the best use of our medical resources. She is replicating this trial, but at the ASCO meeting this year, I commented on a trial from Canada that has shown essentially the same thing. There is not a single trial that shows harm. There are lots of trials that show really good outcomes when palliative care is involved.
Cancer Network: So perhaps, based on the outcomes of these trials and just evolution of care in general, how have you seen the definition and the role of palliative care change maybe in the last decade or so in the United States? Has there been a critical turning point or has it been a gradual evolution?
Dr. Smith: It has been a gradual change. A number of us first started thinking about this 20 years ago at the American Society of Clinical Oncology meetings. We were clearly in the lunatic fringe! I think it has now become mainstream thanks to people like Charles von Gunten, Jamie H. Von Roenn, and David Weissman. Now you go to an ASCO meeting and there are whole tracks on how to be a good communicator, how to help people survive their illness, whether it is curable or not, the best way they can. On the ground, we have seen a huge growth in palliative care programs. I was part of the Center to Advance Palliative Care’s palliative care leadership center program and during the past 10 years we have seen this grow from a handful of hospital-based programs, to where 80% or more of hospitals include a palliative care program. Some of the landmarks include the 2006 recognition that hospice and palliative medicine is a boarded specialty just like oncology or hematology.
Cancer Network: Everything you are saying is certainly encouraging. Has there been any standardization of palliative care for cancer patients across the country?
Dr. Smith: There has been a standardization of palliative care and it has been by consensus. We have been developing the scientific basis as we go on, but like a lot of the NCCN and other guidelines who have done this by consensus, right now the joint commission, formally the JCO, the joint commission has a program to become accredited in palliative medicine, palliative care, just like they do for strokes or myocardial infarction care. There is a consensus project on palliative care that has set up very good guidelines that any program can look up and then attempt to set at their own institution, as what we are doing here at Johns Hopkins. It describes what you should have in a program, what your notes should look like to help standardize the care, what the important domains are that we as oncologists might not think about, for instance, a multidimensional symptom assessment and paying attention to spiritual care and existential care. That is all written down. In fact, QOPI the Quality Oncology Practice Initiative of ASCO, of which I am a great fan, has adopted a number of these standards to improve the care that we give people.
Cancer Network: Do you see that most academic hospitals and community hospitals that care for cancer patients offer palliative care? Or is there still an effort to expand the access of palliative care?
Dr. Smith: There is a real need to expand the access. Most of us have programs of one type or another. We haven’t necessarily standardized them, and we are certainly not all using the same instruments and the same playbook, if you will. But as I said, about 80% of hospitals have a program now. One of the things we do need are more fellowships. Right now there are only 193 fellowship lots in the entire United States compared to hundreds and hundreds for oncology fellows, so we need to expand access. In fact, former senator, cardiac surgeon, and head of HCA, Senator Bill Frist, on September 11 issued a long editorial, saying that we really need to do a lot more of this and that we need to enhance palliative care throughout the medical school curriculum and through residency curriculums, and we need to get the public deeply engaged. He was calling for every American essentially to think through their own advanced directive.
Cancer Network: In your role as the director of palliative care at Johns Hopkins, what are your current research efforts?
Dr. Smith: We are working on a whole host of projects here at Hopkins. One is communication—how much do patients want to know and what is the best way to give them information. So we are working on some standard decision aids much like the ones that ASCO has endorsed for stage IV lung cancer. That for the patient who wants to know everything, like the patient I just saw in the clinic who said, “Doc, tell me everything,” you can really look up what your prognosis is, the best case scenario, the worst case scenario, and average case scenario, how much chemotherapy will help, and what are the main side effects. Also, if we are having a discussion about second line chemotherapy, we should be thinking about—do you have a will, do you have a living will, do you have an advanced directive, have you discussed with your power of medical attorney some of your wishes, have you thought about doing a life review, writing things down or DVDing them, those things you want your kids and grandkids to remember about you? So we are working on communication.
I am very excited about a new method of pain management called “scrambler therapy” that we tested and now has been tested at the Mayo Clinic and seems to, believe it or not, dramatically reverse chemotherapy peripheral neuropathy among other types of pain. We are designing a hospice product for use for patients with hematological malignancies. Nationwide, fewer than 2% of patients with hematological malignancies ever use hospice, and we think they are missing out on something. They are missing out on planning, but it needs to be a product that could include transfusions, could include some advanced anti-fungals to suppress disease. We are working on that.
We have just started a trial of giving concurrent palliative care to usual care for people on phase I clinical trials. You would think that phase I patients are the wellest of the well, and they have good performance status but they typically have at least five significant symptoms, only some of which are well controlled. So we are trying to do the same thing that Dr. Temel did with lung cancer patients for people going on phase I clinical trials. And then we are establishing a palliative care program in our emergency room and trying to integrate goals of care discussions throughout the whole healthcare system. So it is a broad agenda but all focused on improving the experience of patients and their families.
Cancer Network: This is certainly an important topic to discuss, thank you so much for joining us today, Dr. Smith.
Dr. Smith: You are welcome, thank you Anna.