S3 Episode 1: Cancer Survivorship and Palliative Care

Medscape

6 hours ago

This transcript has been edited for clarity. For more episodes, download the Medscape app or subscribe to the podcast on Apple Podcasts, Spotify, or your preferred podcast provider.
Kathryn J. Ruddy, MD, MPH: Hello. I'm Dr Kathryn Ruddy. Welcome to season 3 of the Medscape InDiscussion Cancer Survivorship podcast series. Today, we'll discuss palliative care, which refers to care that improves quality of life for patients with serious illness by mitigating symptoms and emotional distress.
First, let me introduce my guest, Dr Jacob Strand. Dr Strand is currently chair of palliative care at Mayo Clinic and associate professor of medicine at Mayo Clinic College of Medicine and Sciences. He sees patients with complex symptom needs on the inpatient palliative care service and works closely with patients and their caregivers to manage complications of serious illness in the outpatient setting as well. Dr Strand, welcome to the Medscape InDiscussion Cancer Survivorship podcast.
Jacob J. Strand, MD: Thank you so much, Dr Ruddy. I am delighted to be here today.
Ruddy: I want to start by asking you about some basics about which patients we should be referring to see a palliative care specialist, when we would optimally make those referrals, and how frequently patients should be seeing you after they're originally referred.
Strand: It's a really important question and one that continues to evolve. If we go back, even 5-10 years, outpatient referral to palliative care was done relatively late in the stage of patients with a malignancy, often in the setting of widely metastatic disease, when treatment options for that cancer were limited.
That's changed quite a bit, with a number of studies showing significant benefits to patients as well as their caregivers with earlier referrals. Now we see a number of different recommendations, including those from National Comprehensive Cancer Network and the American Society of Clinical Oncology, to refer any patient with widely metastatic disease or patients with high symptom burden.
Now, as you and I both know, that is a huge number of patients. And so a number of studies are ongoing, and really important implementation work continues to refine that, because we have a limited workforce in specialized palliative care, particularly in the ambulatory setting.
We're continuing to try to find out which of those patients are optimally seen and then at what tempo, which is the second part of your question. That second part has changed as well because with significant improvements in targeted therapies, immunotherapy, and receptor-based inhibitors, we see patients who can live for many years without a significant disease burden despite having been diagnosed with metastatic disease. What we see now is that while we continue to advocate that patients be referred to a specialized palliative care ambulatory practice in the setting of a diagnosis of metastatic disease and high symptom burden, the tempo might extend after that. We might see what is called more stepwise palliative care, where the reintegration of palliative care after an initial visit or even several initial visits is done based on clinical trajectory. Maybe there's been a change in symptom burden, maybe a change in disease status. That then drives the follow-up visit.
Ruddy: Are there also patients who are receiving curative intent therapy for their cancers who should also be seen by palliative care?
Strand: Yes. That's a really important question. We see it in two main categories, certainly in cases, for example, of curative intent therapy for head and neck cancer, where patients might be receiving very intense therapy with a curative intent. We see a great deal of those patients in our outpatient practice because of their heavy symptom burden and then work to transition them back to their other care models, be that continuing with their medical oncology team or with their outpatient primary care team once they've gotten through that, initial setting of advanced, or intensive therapy.
The other category of patients that are being seen more and more in an ambulatory palliative care setting, where that's available, are patients with hematologic malignancies that are undergoing curative intent therapy — for example, high-risk acute myelogenous leukemia, or allogeneic stem cell transplants. In both of those patient populations, we've seen important studies demonstrating the benefit to patients and caregivers, both during therapy and extending past therapy after the initial curative intent category.
Ruddy: Can you tell us a bit more about what you and your colleagues discuss during a typical initial outpatient palliative care consultation?
Strand: This has really gotten to what is in the syringe of a specialized palliative care practice. We see ourselves in palliative care as a specialty, like sending a patient to cardiology or infectious disease. So, what does it mean to be in a specialized outpatient clinic, in particular for palliative care?
The first part, and this has been seen in a number of studies and qualitative analysis of early intervention palliative care, is about rapport building and symptom management. Those are the two important components of those initial visits. As we develop that relationship, we start to do a lot of work around adaptive coping. Adaptive coping also seems to be really important in mitigating some of the depressive symptomatology and anxiety that is very commonly associated with a new diagnosis of a serious malignancy. Those early visits are focused on rapport building and symptom management, adaptive coping, and then connecting with other members of an interprofessional palliative care team.
That changes over time, where we start to see an increase again in symptom management as a patient's disease might progress. Based on that initial relationship building and adaptive coping, we start to see more goals of care discussions and serious illness communication, certainly driven by the patient's medical oncologist but supported by a palliative care team in those later phases of an outpatient relationship.
Ruddy: Over the past 5-10 years, have there been new interventions that have changed what you see as the gold standard palliative care?
Strand: Yes. I think that's been part of the really interesting story of specialized palliative care is that there haven't been specific interventions like procedures or medications that have largely changed our practice, perhaps with the widespread dissemination of medical-assisted treatment for opioid use disorder. We're seeing more and more of that in outpatient palliative care. Beyond that, this isn't a new treatment, it's really an old treatment, but we're seeing wider dissemination in broader patient populations. Outside of that, what we're seeing instead is what it means to be an early intervention palliative care team.
Over the past 10 years, we've seen that because most patients used to be referred at the end of life, I think there was an association around palliative care as being a team that you would send a patient to only when disease modalities had been exhausted for that patient.
And frankly, palliative care teams responded to that. So often, our conversations were focused on end-of-life decision-making, and obviously, that cycle made it really challenging to say, "Don't worry. Palliative care is not going to just talk about end-of-life when we're only referring those patients who are at the end of life."
I think the push in specialty palliative care, certainly in our field, is training clinicians to understand the differences of seeing patients early on in their illness — which is focused, as I mentioned before, on symptom management, rapport building, and understanding coping skills that we can then augment and support during the course of an illness, and then also training specialized palliative care clinicians to better understand the trajectories of patients with advanced illness, particularly with the rapid advances in cancer-directed therapy. That's really been the change. It's not been something particularly new or novel from a procedural or pharmacologic perspective in our practice; it's been the training and the implementation of specialized teams who understand this patient population in a much different way than we did 10 years ago.
Ruddy: Very interesting and, even if not new, are there any pharmacologic interventions that you and your team do prescribe frequently beyond opioids that perhaps oncologists might not be as frequently prescribing and maybe should know about?
Strand: Among a couple of things that we're seeing, the first to mention is buprenorphine, which is an interesting partial opioid agonist that I think many listeners might be familiar with as the medication Suboxone, which is used for medication-assisted treatment in the setting of opioid use disorder.
I think what we've seen in the field in palliative care, particularly for patients with cancer over the past 2-3 years, is an expansion of use of that, because I think we're better recognizing concomitant opioid use disorder or concerning behaviors that might lead to opioid use disorder in patients with advanced malignancy.
I think the other piece is we're starting to see the use of that medication more frequently in patients who might not be tolerant of other opioids for cancer-related pain or have other risk factors that might make prescribing full agonist therapy more concerning. When I work with my oncology colleagues, we talk about the use of buprenorphine products as one way of providing better pain relief for those patients who might be at either higher risk for side effects or have had documented side effects in the past.
The other piece we're seeing, and this certainly shouldn't be too unfamiliar to our listeners in medical oncology and hematology, is how often we can potentially use the medication olanzapine. Many people are familiar with this, of course, as it's used in highly emetogenic chemotherapy regimens. Still, we're using it quite frequently in our practice for non–chemotherapy-related nausea and vomiting in the setting of patients with cancer, because it can be quite an effective agent in helping reduce that sense of nausea even outside of documented vomiting. We're also seeing it probably expand its use in the treatment of anorexia, which certainly can occur along with low-grade nausea. But there have been some interesting studies highlighting the potential for benefit in cancer-associated anorexia of treatment with olanzapine, which we're using in that setting much more frequently than we did probably 10 years ago.
The other medication that I'll comment on, because it's been on the news recently, is suzetrigine, a novel analgesic agent that has come on the market in response to concerns about the opioid epidemic and what we can we do that might not put patients at risk for opioid use disorder in the future. We're going to hear a lot more about suzetrigine in the coming years. It may not currently occupy a prominent place for patients with cancer, because of its relatively limited approval in acute pain and postoperative pain. But I think we're going to be hearing much more about medications of this class in the coming years.
Ruddy: Thank you for that. I look forward to learning more. I am wondering if you can describe a bit more about what palliative care offers to caregivers.
Strand: This has been an important part of the growth of earlier intervention palliative care teams, the focus on caregivers as a really critical component of caring for our patients. We know that when caregivers are struggling, there are direct impacts on our patients' ability to make it to appointments, pick up medications, and manage acute symptoms in the setting of a malignancy.
In our practice, here at Mayo Clinic and in other palliative care practices, particularly those who are associated with cancer centers and other oncology practices, we are trying to focus the energy of the team on the caregiver as well as the patient. Often, that involves the use of nurses, nurse coordinators, social workers, and chaplains to focus on caregiver burnout and caregiver burden, and sometimes even having designated visits or support groups for caregivers specifically. There's been some really interesting research and pilot studies using group-based therapy for caregivers led by social workers and chaplains. We're looking forward to seeing the results of those studies here, in the coming years, to see what the optimal support structure dose is for patients and caregivers.
We're understanding that when we can support caregivers more effectively, patients do better from a quality of life perspective. But also, we may prevent non–goal-concordant visits to the emergency department or the hospital setting because a caregiving structure has simply burned out.
Ruddy: Can you talk a little bit about legacy work? Some of my patients have been very enthusiastic about how palliative care has facilitated that for them. Can you tell us a bit more about what it is and how and when that happens?
Strand: Legacy work is really interesting, and it can sometimes be challenging to bring up to patients because the concept of legacy is based on the idea that at some point, they might die. Therefore, legacy is about what they might leave behind both in their journey through their diagnosis with cancer, but also what that means for their family afterward. Sometimes clinicians are worried about bringing that up. Patients are really interested in this, as you mentioned. They're interested in how they can leave something behind for family members, even if that might be years and years in the future. That's one version of legacy work that supports patients in talking about it. From the beginning, do you know what this looks like? What are you worried about for your family members? What sort of things are you hoping to leave for your family members? If this isn't a cancer that can be cured, what might that look like in the future?
It is also interesting as a way of coping. One way that patients can cope with a diagnosis of serious illness, particularly something that is not curable, is to really think about the legacy that they might leave behind. In our practice, we do this predominantly with nurses, social workers, and chaplains.
There are structured legacy interventions. There are unstructured interventions that are more conversational and free-flowing. Some of the structured interventions might take the place of asking patients structured questions around their childhood, their work history, things they're proud of, and lessons they are hoping to share with their family.
We do a version of this in a program called Hear My Voice. The structured questions are led by a chaplain around a patient's life story, which is then transcribed into a book that can then be given back to the patient to share with their family members. Beyond being something that we might all consider really supportive and nice, it also has some demonstrated benefits, showing improvements in patients' quality of life and reduction in depression and anxiety symptoms. Both the structured and unstructured programs can be really helpful for patients. In practices that may not have access to a structured program led by interdisciplinary team members, engaging with community-based resources has also been a growth area where we see, both in spiritual groups and other religious communities, that some legacy practices take place. Also, with community-based grief counseling and community-based support groups, some practices are showing some interesting studies around legacy work in these maybe less medically structured formats as well.
Ruddy: To build on that, when patients decide to enroll for hospice care, what does that look like currently, and what would you like to see change about end-of-life care over the next decade?
Strand: Well, the wish list is long. We're still struggling in the oncology and hematology fields to really have those conversations early enough and identify transitions more upstream in a patient with advanced cancer. The length of stay in hospice for advanced cancers is less than for other diagnoses of serious illness, despite the fact that we often can see the trajectory of a patient with cancer perhaps better than we can see the trajectory of a patient with Alzheimer's dementia.
Part of that is the hospice structure itself. We often know that an increasing number of therapies are coming down the pike, almost at every turn. Because of the way hospice is structured in this country, where hospice programs really are not financially able to take on patients who are continuing with any form of disease-directed treatment, it often feels to patients and to clinicians like there's a choice between either continuing to treat someone's cancer, even if it's a palliative treatment, or to transition to hospice.
If I had to wave my magic wand, we'd see many more programs that would incentivize the use of concurrent disease-directed treatments, even in a palliative setting with enrollment in hospice. We see this in a pediatric patient population that has a concurrent care model built into the hospice benefit for pediatric patients, which allows pediatric patients to continue with cancer-directed therapies even while receiving hospice care. There have been some pilot programs looking at this. We just haven't seen widespread adoption. I think that's one of the greatest things that I would love to see change over the next 10 years.
In the short term, for patients with hematologic malignancies, one of the biggest barriers really centers around transfusion support. Patients with hematologic malignancies often receive frequent transfusion support as part of their cancer-directed therapy and supportive care. And very often, this feels like one of those big barriers to transition to hospice interdisciplinary care outside of a medicalized setting, that they may not have access to transfusions. That's not completely true from the letter of the law in terms of what can be supported, but practically, we see that as a significant barrier. So we've seen that the American Society of Hematology has called upon legislators and policymakers to address this perceived gap, and this concern, this barrier for patients with hematologic malignancies to continue transfusion support while engaging in hospice services.
Ruddy: Thank you for sharing those really insightful ideas with us. Do you have additional thoughts that you would like to share with our audience today?
Strand: The biggest thing that I would share is just how much the field of palliative care is changing and how deeply connected it is with medical oncology and hematology practices. The opportunity is significant. We've really seen how specialized palliative care teams can provide significant benefits to patients with advanced cancer in terms of physical symptom burden, such as pain and nausea; non–pain symptom management, such as depression and anxiety; and support for caregivers.
The other piece that we haven't talked about is support for oncology clinicians themselves. I think having a partnership between our cancer clinicians and our palliative care clinicians allows both to share in the complexity of that care. We've seen that in practices where there is structured early intervention, oncology clinicians really enjoy that work more. I certainly know that as palliative care clinicians, we see that every day in our practice, and we enjoy our work in cancer care because of that close connection with our colleagues. And so I think we need to move beyond 'this patient isn't ready for palliative care' to an idea of how palliative care could benefit my patient, particularly in those populations like we've discussed today — those patients with metastatic disease, those patients with significant symptom burden.
Even though we know that the volume of those patients outstrips what our workforce can currently accommodate, it does provide us a place to start. It provides us a place where this patient has metastatic disease, maybe they're doing well and their prognosis is likely to be many years. Still, if they have a setback, if they have a worsening symptom trajectory, that's when I'm going to engage my palliative care team. Building those relationships now can be really meaningful in identifying new populations for individual practices, where there can be great work together.
In my role as chair for palliative care at the enterprise level here at Mayo Clinic, I see that there are distinct different relationships at all of our sites at Mayo Clinic. There are some that have really deeply ingrained practices within the allogeneic stem cell transplant and acute myelogenous leukemia populations. There are others who have a really deep and rich engagement in solid tumor malignancies. That's where practices have an opportunity to identify the area of greatest need and potentially build that referral pathway, beyond one of last resort, including working together with you as a cancer clinician to provide the best care for patients with advanced cancer.
Maybe I'll leave you with one final parting thought, which is that in a number of clinical trials over the past 2-3 years, we've had to figure out ways for cancer clinicians to introduce palliative care in a way that feels authentic and also provides patients with the information of why they're being sent to another team to help manage symptoms. Some of the verbiage that I think has been really fascinating to see come organically from our cancer clinicians has been statements like 'To make sure that we're providing you with the best care possible throughout your cancer journey, we're going to send you to some of our colleagues who will help manage symptoms that might affect your quality of life, so that you can have the best quality of life as you go through your cancer treatments.'
It's been a really nice way to build that relationship not just between patients, cancer clinicians, or patients and palliative care clinicians, but from the palliative care teams and cancer care teams as well.
Ruddy: Thank you, Dr Strand, for everything you do for our patients and for being here today. This has been a terrific episode.
Today, we've talked to Dr Jacob Strand about palliative care. He shared his insights about which patients should be referred to see a palliative care specialist, what supportive interventions are most helpful to patients with cancer, how palliative care supports caregivers, and how oncologists can talk to patients about palliative care.
Thank you for tuning in. Please take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Kathryn Ruddy, for the Medscape InDiscussion Cancer Survivorship podcast.
Listen to additional seasons of this podcast.
Cancer Survivorship — A Framework for Quality Cancer Care
Bridging the Gap: Palliative Care Integration Into Survivorship Care
NCCN Guidelines — Palliative Care
Survivorship Care for People Affected by Advanced or Metastatic Cancer: Building on the Recent Multinational Association of Supportive Care in Cancer-ASCO Standards and Practice Recommendations
Buprenorphine Use for Analgesia in Palliative Care
Olanzapine in Oncology Palliative Care
The Feasibility and Acceptability of a Chaplain-Led Intervention for Caregivers of Seriously Ill Patients: A Caregiver Outlook Pilot Study
Legacy in End-of-Life Care: A Concept Analysis
The Feasibility and Educational Value of Hear My Voice, a Chaplain-Led Spiritual Life Review Process for Patients With Brain Cancers and Progressive Neurologic Conditions
ASH President Applauds Introduction of Legislation for Palliative Blood Transfusions