COMMENTARY

Palliative Care: A Primer for Oncologists

Lidia Schapira, MD; Jennifer Temel, MD

Disclosures

August 10, 2015

Editor's Note: A landmark study published in 2010 provided strong evidence that early palliative care can improve survival in patients with advanced cancer.[1] Since its publication, early palliative care has become integrated into cancer treatment, but questions persist concerning how much palliative care should be given by the oncologist and how much by the palliative care specialist.

In an interview for Medscape, Lidia Schapira, MD, associate professor at Harvard Medical School, spoke to Jennifer Temel, MD, author of the 2010 landmark study, a noted researcher in palliative care, and clinical director of thoracic oncology at Massachusetts General Hospital in Boston. Together these oncologists explored the shifting border between palliative care and oncology to find the best course for both clinicians and their patients.

Communication: Key to Improved Care

Dr Schapira: From your perspective, what are the remaining obstacles to helping patients have the best possible care at the end of life?

Dr Temel: The key way to enhance the quality of care for patients with advanced cancer is improved communication. Certainly, symptom management is an important part of palliative and supportive care for patients with cancer. But so much of the value of palliative care comes from expertise in communicating about difficult topics such as prognosis, disease progression, and end-of-life care planning.

One of the most important changes to improve the practice of palliative care in oncology will be for oncologists to adopt those communication techniques so that our patients have a better understanding of their prognosis and what to expect from their illness. That will better equip patients to make decisions about their care that are consistent with their goals and preferences.

Dr Schapira: If we break that down somewhat, tell me how much of that can be done by the oncologist and how much needs to be done by a palliative care clinician.

Dr Temel: That is the million-dollar question. As you know, several years ago there was a very well-written article in the New England Journal of Medicine about the role of primary palliative care.[2] Most non–palliative care clinicians who take care of patients with serious illness—oncologists, cardiologists, nephrologists—acknowledge that some aspects of primary palliative care are their responsibility. As an oncologist, I need to know how to manage pain and dyspnea, and to engage in conversations about patients' end-of-life care preferences. But what specialty palliative care—meaning, care that is delivered by palliative care clinicians—adds to patient care, and how much of that role can be equally effective when delivered by oncologists, we simply don't know.

We have demonstrated that specialty palliative care adds value,[1] and the next steps are to figure out how that value was added, train oncologists in these palliative care techniques, and determine whether we have similar results.

Dr Schapira: We hear a lot about value these days. How are you defining the term?

Dr Temel: By "value" I mean quality of care. We know that early palliative care improves patients' experience with their cancer,[1,3,4,5,6,7] and it decreases healthcare utilization at the end of life,[4,7] which is generally in line with patients' goals and wishes. Patients don't want to be in the hospital and they don't want to be in emergency rooms, so helping them to avoid needing hospital stays improves their quality of care.

We have presented some cost data in abstract form and demonstrated that our palliative care intervention did not add costs to usual oncology care.[8]

Dr Schapira: Helping patients and their family caregivers to have a better understanding of prognosis and to advocate for themselves so that they get the care at the end of life that best meets their needs is a great goal. What are the components that make for successful discussions?

Helping Patients Understand That Their Cancer Is Incurable

Dr Temel: There are a lot of ways to have end-of-life discussions, depending on the oncologists' personal communication style. My strategy when I meet new patients with advanced cancer is to explain that the goal of treatment is to help them live longer and hopefully feel better. I communicate optimism that their treatment will hopefully achieve these goals but I am clear that there is no cure. Conveying that message early in the course of the patients' illness is essential because it sets the stage for future conversations.

I like to discuss patients' preferences for end-of-life care early in the course of their illness.

Then I tend to use changes in a patient's clinical status to go a bit further and talk more specifically about estimated life expectancy and prognosis. I like to discuss patients' preferences for end-of-life care early in the course of their illness. I also think it is better to have those conversations when the patient is doing well, not when things are going wrong. When I start to feel concerns that a patient is getting closer to the end of life, I pick a time during a scheduled chemo visit, or when we do not have scans to review, and say, "Now that we have some time, let's start talking about your care preferences for when you become more ill from your cancer."

That strategy works really well for me, for my communication style, and how I interact with patients. I would imagine that there are lot of ways to approach it, but it is a process. An oncologist cannot decide that this is the day we are going to have a conversation about end of life and get it all out at once. I think that is probably a very poor strategy.

Dr Schapira: In thinking about the timing of the conversations and the overall process, how much do you involve the family caregivers? How important is it to have a strategy that includes them in this kind of communication?

Dr Temel: There is a lot of variety in how patients want to hear information, how they want to process information. Certainly, family and friends play a huge role in oncology care. By contrast, many primary care physicians do not have the opportunity to get to know their patients' husbands or wives or sons or daughters. It is a luxury we have that families tend to come with our patients on their visits, but it certainly adds another layer of complexity: more personalities, more preferences, so I think you have to be flexible.

I am certainly comfortable discussing some levels of prognosis with patients privately, but when I plan to have a broader conversation about preferences concerning end-of-life care, I let patients know that we will have that talk at the next visit. I encourage them to go home and talk to their family members, and make sure that any family members who want to be present for that conversation come to the next outpatient visit. It is really helpful to have close family members on the same page as the patient or to even hear firsthand how I communicate to the patient and how the patient communicates her wishes to me.

Dr Schapira: In your practice, do you find that age and gender can be factors in how patients understand or accept these communications?

Dr Temel: Again, there is so much variability that it is hard for me to comment. Sometimes you might think that a healthy 85-year-old is going to be more accepting about having a life-threatening illness that may prevent her from living to 86. But day after day I am surprised that older individuals value future life just as much as individuals in their 40s. In clinical practice, it is hard to know what you are going to get.

A lot of patients already know that aggressive care at the end of life is not in line with their goals and wishes. But we don't ask.

As clinicians, we may be afraid to discuss with patients their preferences for end-of-life care. But I have found, especially in oncology, that half the time you begin this conversation the patient interrupts to say, "I am DNR/DNI." A lot of patients already know that aggressive care at the end of life is not in line with their goals and wishes. But we don't ask. For many patients it is a very easy and short conversation.

Advising Patients That It's Time to Stop Chemotherapy

Dr Schapira: There is so much emotional work on the part of the patient, the family, and the oncologist that goes into these conversations. What is your advice for situations in which you get a lot of pushback from the patient saying, "I don't want to discuss this. I want you to do everything possible for me to live a long life"?

Dr Temel: If you have patients and family members who are really hesitant to engage in these conversations and you are really struggling, calling for help is important. If you are at an institution that has a palliative care service, using their expertise is a good backup plan.

But I feel that if you put in the work up front, if you educate your patients and their families along the way by giving them information when they're ready, you help them work through it. If you approach it as a process, you just don't have those barriers at the end.

These conversations are never easy. They are always sad. Sometimes they are harder than others, but with the up-front work, and by building trust and relationships, these conversations often go smoothly.

Dr Schapira: You describe this lovely developmental work and the kind of exchange that builds trust over time. When you have conversations about stopping chemotherapy or anticancer therapy, do patients find it very hard to hear? You gave a session at ASCO, an educational session,[9] on how to talk about stopping treatment. What advice do you have for oncologists who face these situations?

Dr Temel: With respect to stopping chemotherapy, it is absolutely essential to prepare and warn your patients that at some point this will happen. I have never recommended stopping chemotherapy without multiple conversations with patients. Even when I am talking to newly diagnosed patients about first-line chemotherapy, I explain to them that chemotherapy is only going to work for a period of time. At some point it will stop working. Their cancer will grow and then we will assess how well they are; if they are healthy enough for more treatment, we talk about a second line of chemotherapy.

 
We can't surprise patients. We can't sneak up on them and say, 'Oh, sorry, this was the last round of chemo.
 

Stopping chemotherapy earlier in advance of death—which is a goal—goes awry when you haven't had the up-front conversations. If you give first-line chemo, second-line chemo, third-line chemo, fourth-line chemo and you never talk to the patient about stopping therapy, that's a problem. Chemotherapy is not going to go on forever. You need to say, "Here are the criteria that I am going to use to recommend that you stop chemotherapy." Of course, that is going to be a difficult conversation. But if you are having the conversations along the way, the patient is prepared.

It is those little steps along the way that allow patients to say, "Dr Temel, we knew this was coming. You told us this was coming. You said if this chemo didn't work and if I wasn't out and about more than half the day, that I wasn't going to get additional chemotherapy."

We can't surprise patients. We can't sneak up on them and say, "Oh, sorry, this was the last round of chemo." We need to get them ready.

Dr Schapira: It is a beautiful approach. If I may summarize, you prepare patients for stopping chemotherapy almost from the beginning. You coach them so that when they get to this point, it doesn't feel like as much of a shock, but almost like a development.

What Patients Don't Tell Their Oncologist

Dr Temel: Absolutely. I think palliative care clinicians are more experienced and comfortable using these coaching strategies, whereas in oncology we are focused on chemotherapy or the next clinical trial. We sometimes forget to check in with the patient and reinforce what the goals of treatment are.

Our intentions are never poor. It's not that we are avoiding these conversations or deferring them, but it is hard in the context of a 15- or 20-minute visit for oncologists to talk about risks and side effects, teach patients about antiemetics, obtain consent for chemotherapy, and talk about end-of-life preferences. Palliative care clinicians can focus on these other things. Palliative care provides the time for the patient and clinician to have these conversations.

Dr Schapira: In another of your studies,[10] you and your coauthors talked about the palliative care role as an interpretation of what the oncologist said to the patient and what the patient wants to say to the oncologist. Is that your view as well?

Dr Temel: Sometimes patients want to show a brave face and not let their oncologist know that they are having a tough time. Harkening back to the language of the "War on Cancer," patients want to show their oncologist that they are fighting. They know how much we care. They know how much we are invested in each treatment working and helping them.

Sometimes patients feel like they are letting their oncologist down, but with the palliative care clinician they can be more honest about how they're feeling. The palliative care clinician might say, "I know that Dr Temel is really excited about starting you on immunotherapy, but you need to let her know that things are really hard at home and that you are not sure you can keep coming in to clinic every 2 weeks." So palliative care can act somewhat as a liaison between patient and oncologist—when, as an oncologist, I sometimes don't see the difficulty or the challenges that the patient has, and the patient doesn't feel as though she can be fully honest with me about how things are at home.

Dr Schapira: What do you do in your practice to maintain contact with patients who are too sick to travel to clinic? Are there ways to connect with patients so that they do not think we have abandoned them?

Dr Temel: Without the touchpoints of scheduled visits, even the best of us can sometimes forget about our patients once they are referred for hospice services. So our team has been thinking about how to enhance communication between oncologists and patients on hospice. We did a very small pilot study where we sent email reminders to the clinicians, saying, "Your patient is on hospice. Don't forget to check in." The feedback we got from the patients' families after the patient was deceased was incredible. They loved the calls. They loved feeling connected.

Of note, there is a movement—both at our institution and at Medicare, in general—considering how to conduct virtual visits. I think it would be really helpful for patients and families on hospice to be able to do videoconferencing with their oncologist, to feel that connection and that touchpoint.

Dr Schapira: Devices such as smartphones and tablets are starting to be used to connect patients and family caregivers to medical services.[11,12,13] It's worthwhile to continue to support patients in palliative care, and using these technologies is certainly a creative approach.

Palliative Care by Oncologist or by Palliative Care Specialist?

Dr Schapira: Looking ahead, what do you think are the important issues to address to make more progress in palliative care?

Dr Temel: Now that we have clear data that early palliative care improves patient outcomes[1,3,4,5,6,7] and decreases healthcare utilization,[4,7] we need to figure out exactly what palliative care is doing to improve these outcomes and try to teach it to oncologists and see if it has similar results.

Another important issue in the field is determining who needs specialty palliative care and who doesn't. That is a very important question because there are simply not enough trained palliative care clinicians to see all patients with metastatic cancer.

Dr Schapira: There was an article published in the Journal of Clinical Oncology proposing a model for oncologists who are interested in total patient care to take an extra year in palliative care and become dually trained.[14] What do you think of that idea?

You cannot be an oncologist and not do primary palliative care.

Dr Temel: It is certainly an interesting model to think about. You cannot be an oncologist and not do primary palliative care. We have had some very positive experiences at our institution with dually trained clinicians who are wonderful oncologists and probably better palliative care clinicians because they really understand oncology decision-making.

Dr Schapira: In terms of helping oncologists feel more comfortable with discussing these important and meaningful questions, what kind of path do you think we should take? Should primary palliative care be incorporated into training at the fellowship level? Do you think communication skills require a periodic booster?

Dr Temel: Multiple studies have shown that house staff and fellows are not really trained in these communication techniques.[15,16] Jamie Von Roenn, who is now at ASCO, has a grant from the National Institutes of Health to develop a palliative care training program for oncology fellows in which fellowship programs are randomly assigned to offer or not offer palliative care training. That trial will certainly show us whether we can enhance fellowship education about palliative care.

With respect to how to train practicing oncologists, you have to be able to get a group of clinicians to the same place at the same time, or you have to consider online or virtual training. But there are elements of communication that aren't really amenable to virtual teaching. We are trying to think creatively about using a combination of virtual learning whereby clinicians can participate online on their own time as well as through in-person clinical interactions.

Guarding Against Burnout

Dr Schapira: For good clinical communication, some experts have emphasized that clinicians need to have a sense of well-being and to know how to manage their own stress. Are we addressing this issue sufficiently?

Dr Temel: A few of my colleagues are doing some research on this. William Pirl, one of the psychiatrists at Massachusetts General Hospital, just finished a study in which he and colleagues interviewed nurses and nurse practitioners on an inpatient unit. Certainly these individuals have a strong commitment to providing end-of-life care, and they have incredibly moving stories expressing the privilege they feel when taking care of patients at the end of life.

But on the flipside, end-of-life care is hard and the distress can be high. There were very concerning data on burnout in palliative care providers, presented at the ASCO palliative care meeting last year by Arif Kamal.[17]

I would say that we are not providing adequate support for the inpatient nursing population. Everywhere there are nurses in the hospital setting taking care of patients who are dying. Some of my colleagues are thinking about developing resiliency programs for palliative care providers to help them cope with what they face day in and day out in their role. Certainly, nurses and oncologists could benefit from greater support for taking care of very ill patients.

Dr Schapira: Let me close by asking you a practical question: Does the cost of caring for someone who is very ill come up in your conversations with patients?Do you think it is something that we need to systematically work into our communication practices? In other words, asking patients if they are incurring a financial hardship in addition to the emotional hardships we imagine they are experiencing.

Dr Temel: There is more and more evidence on the effects of financial toxicity on patients,[18,19] how the large out-of-pocket expenses negatively affect their quality of life, and that, often, we as oncologists are unaware of these factors. I certainly think we should be more mindful of that and assess how patients are coping with the financial burdens of their illness.

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