In 2010, Jennifer S. Temel, MD, published her landmark study in The New England Journal of Medicine showing that the introduction of palliative care early after a diagnosis of metastatic non–small cell lung cancer, along with cancer therapy, not only provided patients with a better quality of life but also appeared to prolong their survival.1 Dr. Temel’s study is largely credited with raising interest in integrating palliative care into standard oncology care to improve patients’ symptoms from their cancer and its treatment and helping to separate the association of palliative care with end-of-life hospice care.
Despite improvements in the perception of palliative care as a support to active treatment to relieve physical and emotional symptoms and improve quality of life rather than as a last resort if the cancer is no longer controllable, a recent study looking at oncologist barriers to palliative care referrals found that obstacles remain to fully integrating such programs into mainstream cancer care, including “persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy.”2 And another recent article by Dr. Temel and her colleagues in The New England Journal of Medicine found that “most health care professionals believe [palliative care] is synonymous with end-of-life care.”3
“My perception of why oncologists can be reluctant to refer patients to palliative care is that they do not have a clear understanding of how palliative care can be helpful to their patients,” said Dr. Temel, who is Clinical Director of Thoracic Oncology at Massachusetts General Hospital, Associate Director of the Dana-Farber/Partners Cancer Care Hematology/Oncology Fellowship, and Associate Professor at Harvard Medical School, Boston.
The ASCO Post talked with Dr. Temel about physician bias in referring patients to palliative care, misperceptions about such care, and its role in active treatment.
A Complex Area
Please talk about the bias oncologists may have against introducing palliative care as part of standard oncology care at the time of diagnosis or during active treatment.
I think there are still a lot of misperceptions on the part of clinicians—physicians and nurses—that palliative care and hospice care are synonymous, so many of them still believe that if you are administering cancer-directed therapy, you can’t offer palliative care at the same time.
These misperceptions persist because the fields of hospice care and palliative care did grow up together, and many palliative care organizations are also hospice organizations, so it is a confusing area. It is especially complex because the rules concerning hospice care are unclear, and some hospice organizations do have the ability to provide cancer treatment along with end-of-life care. So it can be very confusing for clinicians to understand the distinctions.
I think another reason there is confusion is that most clinicians are really only exposed to palliative care in the hospital setting where it does predominantly entail end-of-life care. So even what they are seeing clinically is tying palliative care with end-of-life care, and they can’t really envision how they can be doing palliative care for outpatients and for patients who are doing well.
Grey Zone of Survivorship
As patients live longer with their cancer and its treatment side effects, isn’t it imperative to treat all symptoms, including pain, fatigue, and psychosocial
issues?
Yes. I’m a thoracic oncologist, and there have been so many amazing recent discoveries in lung cancer treatment; patients are absolutely living longer, and that is wonderful. However, they are often living longer with many attendant physical and psychological symptoms that can interfere with their enjoyment and quality of life.
I think cancer care is in a transition right now because, in the past, patients with metastatic disease like lung cancer lived only a short time. Now we have patients living for years with their metastatic disease—with brain or bone metastases or the sequelae of their cancer treatment—so it is getting more important to define the role of palliative care in conjunction with active treatment.
For some diseases like lung cancer, we didn’t have any experience in taking care of long-term survivors, but now our clinics are filled with them—which is great. Still, I don’t think we know how best to manage the treatment toxicities seen in these longer-term survivors with metastatic disease. Additionally, I think the psychological coping for patients who are given a life-threatening diagnosis like lung cancer or pancreatic cancer, and who then end up becoming long-term survivors is challenging for them and can present a burden that we have not even begun to understand.
So I think there is a new challenge to think about here: how to bring palliative care to people who are in this grey zone of being survivors with their metastatic cancer.
The Oncologist’s Responsibilities
In addition to the confusion over the definition of palliative care, are there other issues preventing oncologists from considering palliative care for their patients?
When I started this work a decade ago, many oncologists had the sense that it is their job to provide the psychological support to help patients cope with their cancer and to manage their symptoms, and to refer them to palliative care would be shirking their responsibilities as a good doctor. That attitude is in contrast to the data clearly showing that oncologists are just not able to do all of these tasks—and not because their intentions are poor.
It is really hard, within the confines of a 15- or 20-minute office visit, to focus on all of the issues a patient is facing, including all of the cancer treatment toxicities, and then make sure that you still have the time, resources, and clinic space to focus on these other essential aspects of cancer care.
When to Refer
How do you assess a patient for palliative care and make the judgment that your patient needs palliative care?
There is currently not a standard trigger for when people need palliative care, although many researchers are studying this issue in patients with serious illnesses. We are conducting a large follow-up trial to our previous study,1 in which we randomly assigned patients with advanced non–small cell lung cancer to early or standard palliative care. We plan to analyze the data from this trial to determine who benefits most from palliative care, but we do not have that data yet.
I think the number-one criterion for referring a patient to palliative care is that the patient, family, or clinicians feel that the patient has issues or symptoms that aren’t being adequately managed by the oncology team.
Explaining Palliative Care
How can oncologists approach the subject of palliative care with patients so there can be a thoughtful process of shared decision-making?
When clinicians explain the purpose of palliative care to patients, clarify that it isn’t reserved just for those at the end of life, and talk about some of the benefits of palliative care regarding symptom management and improved mood, most patients are excited to meet with a palliative care specialist.
Just explaining to patients and their families what palliative care is and being sure that you make the distinction that it is not synonymous with hospice care really helps alleviate fear.
Closing Thoughts
Do you have any final thoughts about the importance of patients receiving palliative care while on active treatment?
We now have clear data from a number of randomized studies that receiving palliative care simultaneously with cancer care improves symptoms and quality of life. There are even some data from our group and others that it might also impact survival. ■
Disclosure: Dr. Temel reported no potential conflicts of interest.
References
1. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733-742, 2010.
2. Schenker Y, Crowley-Matoka M, Dohan D, et al: Oncologist factors that influence referrals to subspecialty palliative care clinics. J Oncol Pract. December 3, 2013 (early release online).
3. Parikh RB, Kirch RA, Smith TJ, et al: Early specialty palliative care—translating data in oncology into
practice. N Engl J Med 369:2347-2351, 2013.
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is Senior Director of ASCO’s Education, Science and Professional Development Department.
