Palliative Care in the Global Setting Summary

Dr. Jim Cleary talks with Dr. Pennell about this new resource-stratified guideline, which provides guidance to clinicians and policymakers on implementing palliative care in resource-constrained settings.

Welcome back, everyone, to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, medical oncologist at the Cleveland Clinic and consultant editor for the JOP. Now over the last decade or so, there has been a major change in our approach to the care of advanced cancer patients with the recognition of the importance of palliative care. There have been a number of trials now showing that integrating palliative care into cancer patients' care can make a major impact on their quality of life and possibly even their survival. And as a result, the involvement of palliative medicine has become part of treatment guidelines. However, much like cutting edge biomarker testing or expensive drugs, specialist-driven palliative care also takes a fair amount of resources that are not available everywhere. So joining me today to talk about this is Dr. Jim Cleary, who just moved from the University of Wisconsin Carbone Cancer Center, where he started the palliative care program in 1996 and for the last seven years, has led the Pain and Policy Studies Group, a WHO collaborating center for pain policy and palliative care. He's now been recruited to the Indiana University School of Medicine in Indianapolis, where he'll be the professor of medicine and Walther's senior chair in support of oncology and director of the supportive oncology program at the IU Simon Cancer Center. He's going to focus on building a program focusing on global supportive care and palliative care, which makes him the perfect person today for us to talk to about the recommendations of an expert panel that's going to be published this month in the JOP titled, Palliative Care in the Global Setting ASCO Resource-Stratified Practice Guideline Summary. Jim, thanks so much for joining us. Why, thank you very much for having me-- a real honor. So can you start out a little bit by telling us about the progression of the role of palliative care in oncology, and what has led to the impetus for forming the panel that you were a part of? So if we look back historically to the introduction of palliative care throughout medicine, it's actually been primarily in cancer care. If we go back to the original WHO guidelines in the 80s, it was all focused on cancer patients. And it's interesting if one looks at the very definition of palliative care from the word go, they said all the principles of palliative care can be applied upstream, earlier in the course of patients' illnesses from the-- even from the 80s. But as we look at it historically, and particularly in the US, with the introduction of the Hospice Benefit, palliative care really became brink of death care. So that you didn't get hospice or pallative care involved until someone was actively dying. So we were missing out on that very principle of-- let's address all the issues, the skills that palliative care provides early on. Let's address these earlier on in the course of people's illness, particularly when it comes to people with advanced disease. And it doesn't just have to be advanced disease to be including the skill set. So people who are getting chemotherapy, some may support it or call it supportive oncology, but really, it's the same principle-- supportive oncology, palliative care. It's total person care of patients with cancer and dealing with cancer. So as we look at those, the studies have been coming out saying it improves quality of life. You mentioned the survival benefit that's been suggested or hypothesized. And while that may be there, for me, that's not the primary reason for doing this. It's the right thing to be doing-- to be addressing quality of life. And even trying to get us to move beyond what seems to be that magic mark of survival-- length of survival or time of survival may not be the only important thing. Quality of life is becoming increasingly important as we address many of these issues. ASCO has recognized this, and in 2016, they actually published a paper-- again, a guideline-- the integration of palliative care into standard oncology care. And that was released in 2016, and it was based on what we would call research that was done in maximal resource institutions, largely in the high income countries. The United States, Canada, Western Europe, Australia-- those sorts of countries. What the situation is in the world is that probably 80% of the cancers are now being diagnosed in low and middle income countries. And in those countries, most people are actually being diagnosed with advanced disease. And this comes from the paucity of person power in terms of diagnosis, the lack of surgeons, the remoteness that these people-- where they live. They're really presenting in different ways. So as ASCO looked at this, and they've done this as well with cervical cancer, they said, let's get a guideline that is resource-stratified. So let's look at the issues that low and middle income countries face in getting this integration of palliative care and supportive oncology across the board. And that's what we aim to do in this setting. No, that sounds like a very important intervention. I have a soft spot in my heart for this topic. Because when I was a fellow at Mass General Hospital, that was when Jennifer Temel was running her initial trial of head of care that led to this possible survival benefit, which was just suggested retrospectively, or at least post hoc, in that analysis, but I remember when this was greeted with a lot of skepticism-- that palliative care was that important in cancer care. And of course, now people broadly accept how important it is. So I'm great to see that this is going to be extended outside of just academic centers in the United States. So one of the questions I have for you before we kind of delve into your paper, and this is a conversation I've had with Dr. Temel, as well. Most of the data is not just in maximized resource centers and countries, but also seems to focus on specialists trained in palliative medicine. Do we understand the aspects of palliative medicine, and what leads to quality of life benefits, enough to be able to extract those different pieces out and then extend them out beyond palliative care trained physicians? I don't think we do yet. And we need to do more research on this. And I know that Jennifer currently has a query study that is looking at the role of telemedicine. At about the same time that Jennifer was doing the study in Boston, we actually did a similar study out of the University of Wisconsin, which looked at an internet intervention through CHESS-- Comprehensive Health Enhancement Support System-- and the service was integrating palliative care information, internet support for both patient and caregiver. And we actually found a survival benefit that mirrored this-- the Temel effect-- for people who use the internet system. So I don't think we have a very good start understanding at all. I think Charles von Gunten has equally identified that there is this difference between primary, secondary, and tertiary palliative care. And primary palliative care is what all clinicians should be able to do. In Charles' papers that he's written on this, he's talked about oncologists should have a secondary level of palliative care knowledge and experience and be able to do this. And then really you need the tertiary level, or the specialty team, involved in palliative care for the difficult cases. I'm not convinced, still to this day, that I need to see every cancer patient with advanced disease. What we need to do in palliative care teams is actually fill in the holes when the current treating oncology team is not able to provide them. And if you have an oncologist who is excellently trained in symptom management, communication-- together with good nurses and …