Palliative Care in the Global Setting Summary
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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 social workers, pastoral care, spiritual care, who can come in and help with this-- the role of the palliative care physician may actually go on the palliative care team. Maybe a little moot in most settings, but really, it's filling in the holes and coming in and making sure that patients are getting the appropriate level of care. That appropriate level of care really does become tough in resource poor-- resource challenged settings. And that's probably true even in the United States, as well as in low and middle income countries. If the only health care center within 100 miles is actually with a primary health worker with minimal training, how do you get appropriate oncology care, let alone an appropriate palliative care integrated into that? And I think one of the challenges that some of our panelists from low and middle income countries had was, well, how do you actually define good cancer care in our country? And that continues to be a country many people-- and I'll come back to remind listeners that hepatocellular cancer is actually one of the most common cancers in the world. And many of these people who have, and end up dying of, hepatocellular cancer never actually see an oncologist. Now I agree that that makes sense in so many places-- just even in our own country here, patients struggle to reach specialist oncology care. And so I think the idea of Jennifer's, of trying to be able to do palliative medicine consults with telemedicine, is certainly an interesting potential solution for that. So let's just dig into the panel's recommendations here, shall we? The guidelines are divided into different sections. And each section is very nicely broken down into what you term as basic, limited, enhanced, and maximal sections, depending on the available resources. So maybe we could go through them one at a time, and you can talk a little bit about them. So I think the first section is called, "Palliative Care Models." Can you talk a little bit about that? So what we were doing with the palliative care model with the [? gain, ?] if you think about some of these basic, limited, enhanced, and maximal, we were saying, hey, basic is the primary health care center which I mentioned. It may be a community health worker, or a clinical officer as they are commonly called. It may not be a physician. There may be a nurse, but they may not even be a nurse in some of those settings. So the recommendation is that we should be training and addressing these people to actually even start thinking about palliative care needs in this setting. So it's saying throughout the whole system, we need to be building in palliative care needs. Particularly in advanced cancer, one of the issues that comes up significantly, and is under Item 7, is ensuring that we have access to opioids for pain relief. And this becomes very difficult if you're talking about a rural community-- no one with a physician license or a nurse license. How do we actually get appropriate pain relief to these people, who may never see an oncologist, as they're dealing with advanced cancer needs? So we've gone through and actually looking at the strength of evidence saying, yes, this has to be integrated throughout the whole health care system. And there are evidence from different models as we look at places like Kenya and Malawi as they've introduced palliative care throughout these settings. It's quite possible. Uganda actually has nurses out in many of the districts in Uganda, who are now licensed because of their special training, to actually dispense morphine. And that's a real change. We go to other countries, which have a shortage of physicians interested in palliative care and doing this, and there are physician groups who actually say, there's no way nurses are ever going to be able to do that. Professional protectivism, if you want to look at it-- boundary protecting. No right answers, but I think these need to be considered. And we need to think outside the box with the models of care that we're providing to ensure the appropriate people are getting them. I visited a hospital in Zambia-- the Children's Hospital in Lusaka-- where each child with leukemia had a small bottle of morphine on the top of their locker, which the parents were administering to the children for appropriate pain relief because of their leukemia. Really quite incredible to watch this going on in a resource poor setting, and this was entrusted to the parents to do with appropriate education. Because they're the ones who are most concerned and available to do this sort of work. I've actually been to hospitals in other parts of Africa where the drug cupboard has actually been empty and the lock broken, and it takes 15 to 20 minutes to go to central pharmacy to actually get some morphine. So when someone is complaining of pain, that's not a good situation. So we need to make sure that all of these things actually fall into place and develop good care models. And that's really what recommendation number one does. Recommendation number two goes to look and talks about timing. And this comes up as a critical-- when should you get palliative care needs addressed? And as I said with the primary, secondary, and tertiary, really, they should be addressed from the point of diagnosis, if not even before diagnosis if you suspect someone has advanced disease. And so you're really saying, hey, let's consider this from the word go with everyone in the course of the illness-- a palliative care team, not just the needs of the patient. But a team, in the basic and limited settings, should probably get involved with overwhelming symptoms, particularly metastatic disease. And if a decision not to go for life prolonging therapy is made, that's when I think we need to be engaging teams at that stage. And really, it's coming in with the maximal. And if you've got the appropriate resources, it's saying everyone. And this comes from the 2016 guidelines as well. We should have this integration early in the diagnosis and ideally within eight weeks of diagnosis. The palliative care team should actually be involved at that stage. Oh, that makes perfect sense. I certainly remember when this idea of early palliative care started coming out. And it's so much easier for the patients when they are plugged in and connected with the palliative medicine team earlier in their disease, rather than trying to call them in late. And it's much more jarring and disturbing to them, and they don't get nearly as much of the benefit of the care, I think, at that point. And often pain control is a way I get involved early on. Other symptom management-- how can we help you through chemotherapy? Some of the issues go on. It does actually open up opportunities. Yes, I can maybe spend some more time there than the oncologist. Many nurse practitioners-- advanced practice nurses-- are actually doing this on their own. But it's coming in and helping the oncologist. It's building up that team. And as the disease transitions, that jarring nature of all this-- this guy who's now coming to meet you because I've run out of options. No, you're part of the team from the word go and will continue to stay involved. Yeah, absolutely. I think that has been my experience, that that makes the best sense. So the third section of the guideline addresses the workforce knowledge and skills. And how does that vary from the various resource levels. So this comes up, the resource levels and if you even go back to the WHO definitions of palliative care, we use the term interdisciplinary. It's very hard to be interdisciplinary when you're a single person. Although I often joke that Dame Cecily Saunders, who started the modern hospice movement, was trained as a nurse, a social worker, and a physician. So she could have a multidisciplinary team all by herself. So it's the basic level. If you're a single clinical officer, that may be very difficult. A single nurse-- that interdisciplinary team is really something that may be hard to come by. But having those basic skills is something that we need to teach. But as we move up into the limited or district level facilities, working on building teams together, and teams in some cultures-- and particularly with the nurse-physician relationship not being as strong as I think we see in most places in the United States, Europe, and Australia and New Zealand-- often these are real issues of hierarchy between the physicians and nurses. But we need to be ensuring that they do function as a team to maintain and provide the best level of care. So that's one of the things that we're looking at, recognizing that we are a team that does this. And that team continues to grow, particularly, we hope, with regional facilities or the enhanced level with the introduction of a counselor into that level. Again, if you look at the resource poor areas when you start talking counselors, one statistic I've heard is that there are three psychiatrists for the Horn of Africa, which is Ethiopia, Somalia, and those areas. And you think of only three. So the ability to train-- or having trained counselors around-- is something that is not common. So it's really integrating across the board, particularly as we move up to higher levels-- regional facilities and then to maximal, national cancer centers-- making sure that we have appropriately trained social workers and counselors available to join this team. So addressing all of the members of the team-- you know, the nursing roles, the spiritual care, the counseling-- and then just the recognition that in some places it may end up being the caregiver, or the physician, or whoever they are dealing with, that has to assume many of these roles, I think, is a nice recognition. Ideally, you'd love to have a large interdisciplinary team. But it's having the available resource, rather than who does it, that is important. Exactly right, and in many cases, it may actually be the nurse who is doing most of this work. And we even find that in our own situations here, it's often the nurses giving chemotherapy who may be doing a lot of the counseling with patients while they're administering the chemotherapy. I even make the comment to our own folks in in-patients, it may actually be the person who's working on housekeeping who is actually doing a lot of interaction and hearing of the needs of the patient, just because they feel comfortable talking to them, whereas they don't share that with others. So we don't exclude any member of this team across the board. That's really interesting. I don't know if you read Bloom County, the comic strip, but there is a storyline over the last couple of years of a sick child in the hospital. And it's the maintenance man who ends up providing most of the support to the child in this family and it's a really touching storyline. It reminds me of that a little bit. So I hope that's not because we weren't providing it, which is often something that can happen. But I think it reflects some of the comfort that people do have in dealing with like people. White coat syndrome, I think, applies as much to adults as it does to children. We need to look at those issues, that talking to that man-- that person in the white coat who stands at the end of the bed with 15 other people. That's not really a situation where you can share your inner thoughts and feelings. No, I think that's true. And then you touched on this a little bit earlier, but the seventh and certainly a very critical component of this, is the availability of opioids to help deal with pain. I guess it hadn't really occurred to me that this was a major problem, because drugs like morphine should be relatively inexpensive. But this is I'm guessing a major issue throughout the world. So 80% of the world's population lack access to appropriate pain control. And it's even made worse by the current dilemmas that we're facing, the unbalanced situation that we have in the United States with the current heroin and fentanyl crises. And I say that, because I think we've moved somewhat beyond most of the deaths being caused by prescription opioids. There's increasing evidence that people in the United States are getting first access through heroin and illicit fentanyl. So that these people are lacking access to the basic essential pain medicines, both postoperatively and as they deal with advanced cancer. And so we're even seeing some of that now reported in the United States, that people are actually being denied access to opioids, because of shortages in this country, as they deal with cancer. So it's a critical issue. We need to make sure these are all available. We saw even back in the 90s-- we saw some pharmaceutical companies in China saying, you guys don't need an immediate release morphine. Just use sustained release morphine. The reality is that immediate release morphine, even a morphine solution, together with injectable morphine, is something that should be available at the most basic settings for pain control of cancer patients. And then we can move up oral morphine together with sustained release, if you need to, in different forms. The costs can change. We see some countries in the world with fentanyl patches as the primary medicine used. But the cost of these is dramatically much greater than, in fact, it is for immediate release morphine. People say that levels are steadier, it's better pain control, and things with fentanyl patches, but the evidence doesn't necessarily support that overall. And so we will come back to the gold standard being very much based on oral morphine and making sure that's available in different formulations. And I will stress while this guideline was for adults, one of the advantages of a morphine solution does allow you to titrate and dilute the morphine appropriately for children across the board. You can't do that necessarily with tablets. So I think there are absolutely access to medicines-- and not just the opioids, but particularly the opioids-- is something that's being addressed with a number of levels and making sure that the current situation in the United States doesn't come back and not only rebound here for cancer patients, but really impact cancer patients around the world. Yeah, that's certainly a major topic in the United States, and I'm sure that's true elsewhere, as well. Well, so that brings me to my next question, which is-- while these recommendations make wonderful sense, and in many ways it's kind of reassuring. Because in some places when I talk about palliative care, and they say, well, you know, we don't really have access to specialist palliative care, a lot of this can be done just about anywhere as long as there are recognized the aspects of palliative medicine that are available and necessary. So what are the next steps to this? So the guideline is going to be published. How is ASCO going to work to try to make some of this more available? So I think it reflects the impact of ASCO around the world. ASCO is-- while it's the American Society of Clinical Oncology, it actually has very, very real impact. We're starting to see research take place. So the African Palliative Care Association is already beginning to use a palliative care outcomes scale, together with King's College in London to bring about this. So it's actually-- we're seeing a push. I think we're going to see some of the QOPI measures come out and be part of this international work. So for instance, as you mentioned, getting chemotherapy in the last two weeks of life is a negative QOPI indices. Getting people into hospice, we're seeing as a positive as we move forward. So I think that we're going to see this overall from ASCO coming out and saying, this is absolutely critical. ASCO is a player on the international scene. Works with a number of international organizations-- the NCI, Global Health Institute, the NCCN, and others are looking at the-- the Breast Health, Global Initiative. So this is all moving forward together with the World Health Organization, the Union for International Cancer Control, UICC. Many people are targeting this, and I think it's actually going to be the overall recognition of the importance of this. Many people have followed for years, saying we will do what ASCO does. ASCO is now saying, this is important. And I think we're going to see this change in low and middle income countries because of ASCO's leadership, and that's going to be critical. Well, I certainly hope that's the case. Because this really does sound like an incredibly important initiative. So Jim, do you have any take home points you'd like to give to our listeners as we wrap up the podcast? So take home points are to realize, within your own practice, that palliative care is important to integrate. But I think at this stage, it's an awareness of the importance of palliative care in cancer care around the world. We don't often think of that outside of our own settings. But it's absolutely important. Become involved in advocacy as you move forward. And promote this, both regionally within the United States, and for those listeners who are listening outside of the United States, work with your oncology organizations to say, what are we doing with palliative care and cancer care across the board? And I think it's those sorts of things where we're actually going to be seeing those changes as we move forward. Well, Jim, thank you so much for joining me today on this podcast. I'm sure our listeners are really going to appreciate this. Thank you very much, Nate. And I also want to thank the listeners who joined us for the podcast. The full text of the paper is available at ASCOpubs.org/journal/JOP published online in July of 2018. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.