Saying Goodbye to Patients

Transcript:

HELEN: Welcome to Talking About Blood. I’m Helen Osborne, host of this podcast series and a member of the advisory Board for The Blood Project. I also produce and host my own podcast series about many aspects of health communication called Health Literacy Out Loud. The Blood Project’s website includes a lot of important science and medical information. It also looks at the humanity of this work. That includes what it’s like for providers and their patients when the diagnosis is a hematologic malignancy, or more simply stated blood cancer.

Dr. Adir Shaulov knows a lot about this, including how hard it can be when it’s time to say goodbye to patients. Based in Israel, Adir is a practicing hematologist as well as a founding member and current chair of the Israeli Hematology Society’s Palliative Care Working Group. This group promotes research, education and policy change to support quality palliative care for patients with hematological malignancies. Among his many accomplishments, Adir is a lead author of a 2022 paper in the British Journal of Hematology, and the title of the paper is Early Integration of Palliative Care for Patients with Hematological Malignancies. Welcome to Talking About Blood.

ADIR: Hi, Helen. Thanks for having me.

HELEN: Hematological oncology. There are other ways to say that, as I said in my Introduction. But, basically, what does that term mean? What kind of diagnosis does it include? And just tell us more about that category of diseases.

ADIR: Right. So, hematological oncology is basically cancers that originate from the blood, basically from blood cells. That includes leukemias, lymphomas, myelomas and a few other diseases. They tend to act differently than solid-organ tumors and usually have different specialists in other tumors as well.

HELEN: Well, tell us how do they act differently? And you’re comparing that to the solid tumors or masses as we know. What is different about the category of those blood cancers?

ADIR: Right. So, there is quite a bit of variability between hematological malignancies. But, in general, they tend to be more dramatic, especially leukemias, especially acute leukemias. We tend to see both the treatment and the disease itself acting in a very dramatic fashion. You can see an acute leukemia patient come into the hospital very, very ill and within a few days already start on treatment. They may be doing much better within a very short period of time. And then, again, you go through ups and downs and ups and downs with high hopes of your patient and hopes of actual cure, even with very advanced disease.

HELEN: Oh, okay.

ADIR: But, at the same time, a lot of valleys, right? A lot of treatment complications, a lot of infections. Because the diseases are actually blood diseases, it tends to be a pretty rocky road. I tend to call it “the rollercoaster.”

HELEN: Oh, okay. All right. So, with a solid state or a mass, you know what was likely to happen next. But with the blood cancers it’s not that way at all.

ADIR: For the most part, that’s very true. For solid tumors, we’re much better at estimating prognosis. For many of these diseases when they’ve already spread and metastasized, we know in advance that we won’t be able to cure, but we may be able to prolong life in a significant way. But, in a lot of blood cancers, the disease can be very, very aggressive and still there’s a very high chance of cure. So you’re living at that knife’s edge of things can go really, really well and really, really bad. And this all could happen within a very short period of time. And that’s very draining and stressful, not only for the patients and their families, but also for those who are taking care of them.

HELEN: I actually know some people who have some of these blood cancers. In one of the cases, and probably is pretty ordinary for you to see it, is somebody who had pretty much of a dire diagnosis with his blood cancer. I don’t know exactly which diagnosis it was. He had a bone marrow transplant and going through all that experience coming out on the other side, he seems to be doing great.

ADIR: Yeah. Our treatments are very aggressive as well. I think a bone marrow transplant, you can bring the body to its limit. And starting off, you can try and estimate as best you can if this is the right course of treatment. But many times there’ll be severe complications along the way. And it’s either you came out, as you said on the other side, cured. Or you come out on the other side and are very, very debilitated. There are a lot of risks attached and a lot of hopes and dreams along with that as well.

HELEN: Wow. And you used the word cure. Are these curable? I don’t know with this gentleman is cured, or is he just at a plateau? Or, is that uncertain from your perspective?

ADIR: So there are, as I said, a variety of diseases, some of which are incurable, but treatable for even long periods of time. Some are curable with very high risk to that cure, and in the back of your mind, always that worry that it’s all going to come back and we’re going to be in trouble again. Not to mention the complications of the treatment itself. So, we see a lot variability there too. But mostly the treatment, and I think also the give and take between patient and the treatment team … It’s a very intense relationship there. We’re with them through thick and thin and through a lot of these ups and downs.

HELEN: Oh, that’s what I was just thinking about. So I’ve heard secondhand from this patient’s perspective. What is it like for you being the doctor treating people? Are you on this rollercoaster with people? Are you just the person who puts them in their rollercoaster seat, and they go up and down and you just watch? What is your relationship?

ADIR: So I think I speak for most hematologists, because the treatments are so intensive and because the risk of complication is so high, we tend to see our patients much more often than other oncologists. And we tend to go through them through these very severe and debilitating treatments as well. I could speak for myself, I think there’s some evidence for this also in the medical literature, that sometimes we make decisions as if we were family members rather than treating physicians. For better and for worse, right, there can be a very close relationship there. But, many times at the end of life that close relationship makes it more difficult for hematologists to allow for hospice care, to transfer a patient to someone else’s care. These things may be more difficult for hematologists.

HELEN: Can you make this more vivid for all of us? Share a story, of course, with no identifying information. But tell us about how hard it can be from your perspective as a doctor.

ADIR: I think all hematologists or anyone who’s been treating leukemia has those patients where, in midst of intense chemotherapy in this long period where they really don’t have an immune system and they’re dependent on antibiotics and they’re dependent on blood products to stay alive … And in the midst of all that, you may have a very severe infection along the way and you’re fighting for your patient. You’re the one who put them through this. You’re the one who gave them that chemotherapy that put them at additional risk as well. And I think it’s not unheard of for a hematology patient, for us to be very, very aggressive in treatment including mechanical ventilation and dialysis. And then the next day you come and you see the disease is back and that all of that was probably not helpful to the patient at all. So, it just makes those decisions more difficult, because the prognosis isn’t clear, because we’re attached as well.

HELEN: So, that sounds very hard. I would assume that the other end of it, sometimes a person goes through all of this, because of what you’ve prescribed, and they’re like, this person I mentioned, he’s doing great.

ADIR: Yeah. I think those are the cases that keep us going, right? Because there are dramatic improvements and treatments, especially hematological malignancies have advanced so much. And we have so many new tools to use and so many ways to be helpful and we learn as we go along what’s more beneficial? What’s less beneficial? What side effects to expect.

HELEN: So, there are times when it doesn’t go that well. And it’s probably were palliative care comes in. So, please put that into context for all of us. What is palliative care and how and why did you get involved with that?

ADIR: Yeah. So palliative care is an approach to care which puts an emphasis on quality of life. And that would include a lot of symptom management that can be, of course, relevant to a patient who has a very good prognosis as well. And it also helps patients and their families through the decision-making process along the way, which can be not easy to do.

HELEN: Can you give an example of some of the decisions that need to be made?

ADIR: Sure. So, one of the major decisions is whether to continue treatment or whether to treat at all. So, 10 years ago for an elderly patient with acute leukemia, we didn’t really have a lot of treatment options at all. We had chemotherapy, which was likely to cause more harm than good. Now that we have better tools, the decision becomes much more murky, right? When are we helping? When are we not helping? Mostly, what’s important to our patients. Where are there goals of care? Where do they want to get to? And, can we realistically expect to get there? And hematology patients notoriously get less palliative care. And this has been shown through studies over the years.

Helen: Why is that?

ADIR: Yeah. So, it’s a really good question which we tried to answer in our paper, and many have tried before us, and there are a lot of parts to it. First of all, because we have less tools to estimate prognosis in hematology patients.

HELEN: And that’s because of the uncertain course of the disease and its treatment and their side effects. Correct?

ADIR: Correct. So that’s one big part of it. And there are additional parts as well, part of which is that hematologists, in general, tend to think that no one else really understands how their patients behave and what to expect from them, with good reason. Right? They tend to be very different than other patients. So we just don’t refer out to palliative care.

And part of it is also that very strong relationship that hematologists tend to have with their patients, and they have a difficulty severing that link. And I got to palliative care mostly because I had a really, really hard time. I did my residency in internal medicine and it was just difficult feeling that you come out of medical school, you’re sure that you’re here to help patients and you’re asking yourself, “Am I really helping these patients? I’m putting them through so much.”

Many of these elderly, frail patients where we put through many different tests and treatments and we’re wondering if we’re doing anything good at all. And then, when I went onto my fellowship in hematology, things become more acute, because your patients are younger and they’re sicker and you’re wondering what you can actually do to help them out. And fumbled my way into palliative care, hoping to help myself with tools that might help me. And that’s part of how we built this working group, is to try to help others in the field do their job better, because I think we all want to do well and we want to do good for our patients

HELEN: Of course. And, boy, I can hear that in you. Talk about you. Is there a team for these blood cancers, like there is perhaps with solid tumors? Or are you more singular in treating the patient?

ADIR: So, at least in my department and I think that’s the same in many other places, your patient is yours and you take responsibility for anything that happens to them, whether it’s kidney failure or respiratory disease or any other issue that comes up, the buck stops here. That’s part of that intense relationship, because you can’t see the patient without looking through the lens of his hematological malignancy. I tell my patients when they go home, “I don’t care what happens to you, it’s part of your disease. You need to talk to me about it. You can have an ingrown toenail, but that’s part of your disease. You need to talk to me about it. Because, anything we’re going to do, we’re going to have to look through the prism of your disease and how this might work with your disease, or be affected by it.”

HELEN: I’d want you as my doctor. I don’t want a blood cancer, but I’d want you as a doctor. That caring just comes through. If you make a referral to palliative care, are you out of the picture now? Or is that a partnership, because I know that you’re working in both? How does that happen, the going from just the medical side of it, to looking at that quality of life with a team on palliative care?

ADIR: So, in the past, palliative or hospice care was reserved for patients who were basically at the end of the line, who we really didn’t have any treatments for anymore. But, for over a decade now, especially in solid tumors, we know that early palliative care, alongside treatments that are life-prolonging can have a remarkable benefit for patients. And recently, we’ve shown that also with hematological malignancies. So, we try not to separate it, and we would like to have palliative care on board as early as possible.

Maybe the job of the palliative care team will change along the way. Maybe in early stages they’ll be mostly managing symptoms and trying to keep patients comfortable through their treatment. And maybe later on they’ll have a more prominent role. But, I have admit, for my own hematology patients, it’s difficult doing both jobs at the same time. Difficult maintaining the hope that the treatment is going to work and at the same time trying to help them face the possibility that it’s not going to work. So, having a palliative care team alongside you is very, very helpful. And in places where palliative care is more established, that can have a remarkable benefit. And we’re hoping to have that happen in hematology as well.

HELEN: Can you share a story? You shared a story about your experience about what’s so hard about treating these patients. Can you share a story about your experience with palliative medicine and care?

ADIR: Yeah. I could share a story. I think I met one hematology patient as a palliative care doctor in a home-hospice setting. This was a 60-year-old woman with multiple myeloma, who decided not to have further treatments. And, just being at home and being able to manage her symptoms and seeing what calm she had by being at home and not needing to come in so often to the hospital for these debilitating treatments. It’s a comfort to see the other side.

Many times, those of us who work in a hospital setting, we worry about our patients at home. And all of a sudden you see the other side of it, the patient at home and having such a wonderful time. And all that work that we’ve done in order to keep her healthy and well, this is what we’ve been working for. Right? We haven’t been working for her to come in for treatments. We’ve been working for her to live a full life at home.

HELEN: And did you ever get to her home? Did you see her in her context of her life?

ADIR: Yes. I did. That’s the plus of being able to see both sides. Right? So I was part of the home hospice team and I was a part of the hematology unit. And at first I was concerned, how am I going to play both sides of this at the same time? But it was remarkable to see the whole picture come together.

HELEN: Oh. I can feel that. I can feel that as you’re sharing that story. Thank you. Well, our listeners to Talking About Blood can be seasoned professionals and hematologists or other physicians. They might be people newer in their careers or deciding whether or at the start of becoming a health professional. Or people just curious, like me, just about blood. What lessons learned would you want to pass on to all of us?

ADIR: So I think what I’ve learned over the years is that these issues of quality of life, of being able to communicate well with patients, being able to help patients decide on their goals of care, helping them achieve those goals, helping them be comfortable … These are tools that we can get better at. At least when I was in medical school, this wasn’t a part of training at all. It definitely wasn’t part of training and residency or fellowship. At many places now it is. And it’s a very lonely experience, because you feel like you’re the only one facing these issues. You’re the only one frustrated at the end of the day. You’re the only one who doesn’t know, have I done good today or not?

So I would encourage people to make use of training in palliative care that’s available to them. And mostly be open about discussing this. I mean, they think these are issues not only for patients and families. These are issues also for the medical team, for the nursing team, for social work, for anyone who touches patients. And our ability to discuss this with one another is maybe the most important thing to avoid us getting run down down the line. And that’s why I think this podcast is so important.

HELEN: Thank you. And I can speak from a patient perspective, not with the diagnosis you’re working on, but I would like to know that my doctor is looking at the whole person too. And who I am, not just what’s wrong with me right now. And not just those treatments I have to have, but who I am and what I care about. Adir, this comes through so strongly. Thank you for all you are doing. And for our listeners, I highly recommend this article, this paper that you wrote, Early Integration of Palliative Care for Patients with Hematological Malignancies. That’s published in … I’m just looking at this, The British Journal of Hematology. So, the paper came out just in 2022. Thank you so much for all you do, for all your caring, for all your knowledge, and sharing it with us on Talking About Blood.

ADIR: Thank you Helen for having me. And thank you for all you do.

HELEN: As we just heard from Dr. Adir Shaulov, it’s important to consider blood in all species, not just the human species but also animals. To help learn more about The Blood Project and explore its many resources for professionals, trainees and patients, go to thebloodproject.com. I also invite you to listen to my other podcast series about health communication. It’s at healthliteracyoutloud.com. Please help spread the word about this podcast series and The Blood Project. Thank you for listening. Until next time, I’m Helen Osborne.