How supportive care teams help dying cancer patients

MD Anderson Cancer Center
Date: 10-22-12

 

Lisa Garvin: Welcome to Cancer Newsline, a podcast series from the University of Texas, M.D. Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment and prevention, providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin. Today we have two guests and our subject is end of life situations for cancer patients. Our first guest is Dr. David Hui. He is an assistant professor of palliative care here at MD Anderson, and also Steve Thorney who is a long time MD Anderson Chaplain who has led support groups. Welcome to you both, and Dr. Hui we will start with you. Obviously, it's the gorilla in the room, you have a patient whose prognosis is terminal. How do you broach that subject with patients?

Dr. David Hui: Well, I would say first we ought to start with assessments you know, looking through the charts, understand you know, where are the patient is at and some you know, doing a history, physical, and you know, once that decision is reached that you know the prognosis seems to be short then we need to talk to the patient about tell him what the understanding of the illness is. And depending on which stage of understanding they're at, we may decide that discussing prognosis would be you know a good thing to do in order to help them to plan ahead so that we can help them fulfill their goals of care.

Lisa Garvin: Do you feel like, I mean obviously it is a sensitive subject. And is there a special care taken with bedside manner and how you approach it, do you have like protocols on how you broach the subject?

Dr. David Hui: That's a great question, and I think you know, there are more and more research you know available now in regard to you know, how we can communicate with patients. But at the same time there are still you know, a lot of questions in regard to in when is the best time. You know, how exactly should we deliver the next. Important thing to understand is that when we communicating with patients is I'm really it personalized kind of situation. Everyone is different at different stage of understanding an emotion and it is up to the clinician to you know recognize where the patient is at and whether he or she is ready to have a discussion. So I don't know, if Steve want to add something.

Steve Thorney: Yeah, you know maybe it will be helpful at least just to context to a little bit the majority of circumstances in which David and the physicians as well as those of us from the interdisciplinary team interact with patients. In palliative care we function in three different places in the hospital. We have a supportive care clinic. So that the patients and family members who will come because the symptoms that they are experiencing had gotten more difficult to managed by their oncologic team. And so whether its shortness of breath or pain, or constipation or diarrhea--any of those kinds of physical concerns we might meet them in the clinic. Another place that we encounter folks is on what we call our mobile team. So these are patients who are in the hospital they are perhaps have been or are actively receiving cancer treatment either through chemotherapy or radiation surgery. And the team, their oncologic team is asked the palliative team to provide support for them. Often for their physical symptom burdens initially in that kind of context. But , we're also always attentive in palliative care to peoples' emotional and spiritual needs recognizing that physical emotional and spiritual all contribute to each other. The third context in which we experience patients and their families are in the acute palliative care unit. Many if not, well, perhaps most of those patients are people who have just recently been told that there is nothing more that can be done from a treatment point of view for their cancer. So now, they are truly as you said all begins the wall what their facing existentially, so it's in those three environments. In both the mobile team context which is out on the floor as well as in the acute palliative care unit. One of the things we always want to be sensitive to is trying to get first an understanding of what the patient understands about his or her owned condition. When we begin to hear from them, it doesn't take long on the dialogue before we for example might hear that their expectation is that they're hoping they're going feel better and they'll be able to get more treatment. And that gives us a close that we probably are going to have to do some more fine tuning in how we're going to broach the topic of--of the end of life and the fact that their oncologic team is perhaps communicating that nothing more can be done. So it's always very delicate and as David said very personalized as to where that patient and their family members are in their own personal understanding.

Lisa Garvin: And let's talk about the term palliative care, because when I started here at MD Anderson 12 years ago it was like symptom research I mean the term has evolved and I think we've always avoided the term end of life. So describe what palliative care is, it really doesn't necessarily mean end of life.

Dr. David Hui: That's a great some question. I mean I think, palliative care is essential a service that addresses the multidimensional needs for a patient whether it is physical, psychosocial, spiritual, and this is through the delivery by a multidisciplinary team. And on top of that it can apply to anyone who are living with a life threatening illness. So that could be at--from the time of diagnosis and in fact there is a push partly because of the available evidence now that patients' who receive early palliative care namely from the time of diagnosis of that [inaudible] illness, they actually have a better quality of life. They actually have less depression. And on top of that for some times perhaps even a survival benefit as indicated by randomize trial. So we all are very excited about that I'm think this palliative care field is increasing recognition that some it can be--be a comprehensive package in terms of providing patient care.

Lisa Garvin: Now, Steve as a chaplain obviously you're dealing with subjects on a pretty regular basis. Do you find that people fall into certain camps when they are faced with the end of life? Do you know what I mean you like the fighters, the flares, the players, the deniers the--

Steve Thorney: In my experience the answer would be yes and that's across the broad spectrum of patient at MD Anderson, because my work here over the past couple of decades for a long, long time was assigned more to hematology and other areas as opposed to palliative care which I've been working in specifically for the past five years.

Steve Thorney: Yeah, I--there is no evidence base for what I'm about to say, but over the years I think that there is probably a general patient population that walk in under the big sign that says MD Anderson cancer center that probably put a huge bulk of the patients and all their family members into the fighter category. I mean something has brought them here from literally all around the world, around the country, and in the Houston area from outline community hospitals. So there is a confrontation with their illness which I think would broadly categorize a lot of the patients. Once you've been here for a while and you realize that the treatment which you might have hope was going to last three months. And that now you may have to be in and out of Houston for the next year and how might I facilitate my care back home. I'm not sure anybody is fleeing at that point in time. But the idea of what this is really done to your life and to your hopes and to the disruption of your social networks becomes a lot clearer. And so we'll find people that--that are looking for those changes in the way they may be receiving their care. In general and especially with the patients, who I think that we encounter which have gone a long way down the road in many cases of their oncologic treatment are fighters and understandably resistant when they begin to get the news that the disease has either increased become increasingly metastatic. And that in fact, they may not be one of those who win the war against cancer.

Lisa Garvin: And I think that maybe patients are surprised obviously you know that's a life changing moment for anybody. But there is a lot to get done. I mean not necessarily personally but advance directives and planning for their family. So, are they overwhelmed by all of that? And either one of you can answer.

Dr. David Hui: Well, definitely some you know, a very challenging process for transitioning patients to the next stage of their lives. I would say, the important thing for us to recognize is this is not like necessary a one time point. But through multiple discussions and if we do it right we usually can start even from the very beginning. You know giving patients warning, while this treatment hopefully will work but if it didn't work then we'll have to you know consider other options. And helping be extremely hopefully would work but if it teamwork then we have to you know consider other options. And helping patients understand you know where they are along the cancer journey and so ultimately helping them to you know achieve their goals. And definitely, it is some regardless I have to say for many patients in your families quite overwhelming especially best they approach the end of life meaning the last few weeks and--which is you know part of our job and you know privilege to actually worker of the families, and the patient to help them achieve their goals.

Steve Thorney: I was just going to build on that in a couple of ways. First of all David didn't mentioned it but we're blessed in palliative care to have him because he is also an oncologist. To have that balance perspective is enormous asset to our patients and families as well as to our staff but also on our who educational process. One of the things that we do in Palliative care now have the hematology, oncology fellows as well the oncology fellows rotate through for educational purposes for some period of time. And so that is very helpful and just deepening and broadening the newer, younger physicians and what we're trying to do in palliative care. But on a particular issue of the various stressors with which a family and a patient may want to deal. Going all the way back to Dame Cicely Saunders, who was generally credited as being the founder of the whole hospice/palliative care movement and the concept to total suffering, total pain. And broadening our understanding and not just talking about the physical but we're talking about the emotional and spiritual and so we have to factor around domain such as what is going on with the person psychologically, what's going on with their family, what's going on with their vocational, what's going on within spiritually. Looking at literally the whole person and each member of this interdisciplinary team trying to tease out their particular specialty but recognizing that those things are all interrelated if a relationship lated day. A relationships terribly disrupted in a family that immediately become spiritual concern for me, just with the sense of guilt remorse perhaps lock of forgiveness. It's a problem for the social worker because was visiting with the patient recently who shared it, you know they have a son that's incarcerated. The sense on the part of their parent that--how might I had failed in this regard and the issues that I had to work through and I'm working through is my life throws to a close in this very, very sad part of my life. So all for these things, and that of course could lead to depression which brings our emotional counselor, our psychological counselors, and engage in the process and all of those things because it heightens in anxiety may increase the physical pain expression a person has. So we're looking for all the keys to unlock various areas on s persons' life.

Lisa Garvin: 'Because I've interviewed a lot of cancer patients in my time and almost to a person they say cancer has changed for the better. I think when you are faced with your mortality. A lot of people question their past life and past decisions. Do you find that coming up quite a bit?

Dr. David Hui: I think that's a great some question. Well, I would say is you know a lot of the times people think of hope you know, and some of that cancer because it you know, may potentially affect the patients life expectancy may actually decrease peoples hope. But I think you know for a many patients who are resilient who you know have a supportive family, who you know, have gone through a lot of the health care system already. They tend--start to understand that you know hope comes in many ways. You know, and that's--it can be hope this you know maybe get better symptom control, you know it can be hope to perhaps go home, you know from the hospital where they can spend more time of their family. It can be hope to finish their particular project, they will be important for them. So I think as part of our job is to you know come saw the sense of hope perhaps. So at least how patient discover you know, that in their hopes that they've have already and that some potentially allow them to and they can foster that and grow the tree of hope.

Lisa Garvin: And that's actually a good thing to say even when hope is survivalist there is still hope that you can spend your last days in comfort and loving arms and so forth. Because you know, I feel like I would say, "Okay, I'm done, I'm out to the hospital, let me die at home." Do you get a lot of that? You know where they may even refuse palliative care 'cause they know it's over and I just want to be at home rather than dying in a hospital bed?

Steve Thorney: I think there certainly a lot of patients that fall on that category. It so much depends on what a person's particular need are at the time of discharge. It could be that there is a movement forum with their oncologic team and the discussions have been on the table. that there is nothing more than can be done. They don't have a lot of physical or emotional symptom burden going on of the time and so the social workers, case managers and the teams on their particular [inaudible] can make those arrangements for them to go home. Often, and this is a good thing I think in the way that palliative is growing over the years that' it's been here. We are being consulted in more and more those of cases. So that we're part of that process of relieving that symptom burden before it gets so severe that they have to windup in the acute palliative care unit. So many people many do want to get home. I mean that's where their social networks are, that's where their garden is, that's where their pets are, and we're always looking for those things which are important to someone. I remember our occupational therapist on the floor, Mark Ivy [phonetic] does a wonderful job as to our physical therapists in helping people identify what their potentiality still are physically. And so I remember a lady from South Louisiana and the one thing that she wanted to be able to do before she died was to be able to cook a last pot of gumbo for her family. But she lacked some of the physical dexterities and ability to think through how she might actually be able to prepare that meal at the stove and so Mark just to help her think through how she could be with her family and accomplish that particular life task that had been such an important part of who she saw herself to be as a mother and as a mom and a wife. So we're always trying to identify those kinds of things.

Lisa Garvin: And do a lot is a chaplain and a support group facilitator do you find that people tend to unburden themselves spiritually with you as they are facing their mortality?

Steve Thorney: Absolutely. I think one of the things that's important--well let me back up just one thing, I round with the physicians as do the social worker and counselors. We do go as a team when we go into the rooms. We do that for a very specific reason. That is that important persons they have to be burden with 5 or 6 different people coming in at different times of the day pulling at the same story. But if we all go together and we ascertain at the beginning that the numbers won't be overwhelming to the patient. But that such a more helpful way for us to hear their concerns and to all be on the same page. My role--sometimes they are surprised to see a chaplain and its like what do you know that I don't know? And so sometimes I had to defuse that right from the beginning. And help them understand that my role as a chaplain sometimes has a religious component but a lot of the times it doesn't as providing spiritual care are those kinds of things that provide meaning and purpose to our life. How are our relationships going, relationships with family, friends, sometimes a relationship with the divine, as that person defines that. And yeah certainly a lot of my work has to do with people unburdening things as we if we have the time particularly getting to issues of forgiveness from guilt. And addressing those, but by no means and this is something what I'm teaching out in the hospital about spiritual care everybody is doing it in their own ways whether it's a social worker helping with the familial issues and if we can get some of those resolved, how that opens the door for a counselor who may be able to address more deep-seated issues or for me to be able to help a person reconnect with the divine.

Lisa Garvin: And Dr. Hui, have you found that people are more in control of their destiny than they were say 10 or 15 years ago. 'Cause I think what happens and I could be wrong I'm just speculating it's that maybe the doctor is just like one more drug, just one more drug you know, but I feel like patients now feel more empowered to say, "I've had enough." Do you feel like it's evolved to that point?

Dr. David Hui: That's a very deep and philosophical question. I would say, you know if there is a partnership between the you know patient you know and the clinicians. And kind of discussing what other options available. In a way for cancer treatments, now we have more and more options available you know [inaudible] therapy. So patients are kind of open to those, kind of saying, "Well, you know, is there a positively for me?" At the same time, I think many are still aware that well no treatment, no cancer treatment is still an option because there are so many other things that are so important. I have definitely had many patients who say, "Well, doctor you know I think I've had enough" you know I think cancer treatment at this point is not going to help me but rather possibly making me worse," you know, as a result I actually want to focus on my family you know, I'm going home and things like that. And I think it's a very individual choice, but as clinicians it's our job to help them to understand in a way they are at, what are the risk and benefits? What are the you know treatment options and the important things is that regardless of whether they choose treatments or not. You know, we're always there to help with improving the quality of life and support their family.

Lisa Garvin: So end of life doesn't have to mean suffering?

Dr. David Hui: That's so tough one, I would say there is still suffering. You know, suffering is there. What we can do is to try to minimize it as much as possible as a team and you know, Steve does amazing job you know working with the team to alleviate, to address many of the spiritual aspects and psychological aspect. And you know, some physicians we also try to focus on relieving the pain you know for example. And we do find that as patients you know approach the end of life, the symptom burden for some of them tends to go down, such as pain whereas for some other patients it might actually increase and which is very much related to the natural you know progress of disease. But I think what we could do is to try to reassure them, you know to support them and to use what available treatments that we have to minimize that suffering.

Lisa Garvin: Of course at MD Anderson we've dealt with palliative care for many, many years. Are other cancer centers, hospitals, treatment centers are they in the same place we are, I mean are we at the head of the way, behind the way, you know?

Dr. David Hui: Wow, that's a great question because we recently conducted a survey. Actually, a national survey asking you know cancer centers around the country about palliative care services. And for that particular study we found that a majority of the NCI designated cancer centers which are the more comprehensive ones report that having some palliative care service in place. But majority of them are limited to the mobile team, you know the consultation team. Very few have outpatient clinics and about less than half of them, suggesting that you know, patients are still seen fairly late in the disease trajectory. And on top of that, you know only about 20 percent or so [inaudible] palliative care units which are really designed to help address the symptom distress for those who are the most distressed. So I think palliative care units are need. You know we need help patient clinics, and like Steve said, you know we need all three arms of palliative care to address patients at different points of their trajectory.

Lisa Garvin: Steve, do you have any final thoughts?

Steve Thorney: Just to agree especially in that last point with David in my experience in the guild of chaplaincy because chaplaincy is a national body of trained clinicians is developing a subspecialty for palliative care, and so I've been a part of that process in some national efforts to define what that criteria might be for that sub-specialization, what are the educational pieces and arms. I think MD Anderson is in the forefront and really on the cutting edge in this comprehensive understanding of what palliative care can be? How it relates to hospice? How it relates to targeted therapy, and other oncologic concerns. So I think we can be very proud of the courageous steps frankly that MD Anderson has taken at least in my 25 years of history here and since Dr. Bruera came 12, 13 years ago now. The institution has made some remarkable strides.

Dr. David Hui: Yeah, I like to you know say the same really I mean I think we're all very blessed to have Dr. Bruera who is really a pioneer in the field of palliative care as leader in our program and is also being one of the leaders in the world, you know for the work that he is doing and also leading the research as well for a better future. And at the same time, I think you know people like Steven you know really the whole interprofessional team, we bring a lot of excellence in patient care and I think it's just a privilege to be part of this team, and working with the patients and families.

Lisa Garvin: Very comforting words. Thank you both.

Dr. David Hui; Steve Thorney: Thank you.

Lisa Garvin: If you have questions about anything you've heard today on Cancer Newsline, contact askMDAnderson at 1-877-MDA-6789 or online at www.mdanderson.org/ask. Thank you for listening to this episode of Cancer Newsline. Tune in for the next podcast in our series.