by Virginia Anderson, Senior Writer/Editor
Jamie H. Von Roenn, MD
Photograph by Marina Makropoulos
January 2011: Palliative care is frequently perceived as an end-of-life measure, an option only when curative or life-prolonging therapy is no longer beneficial. Experts in palliative medicine argue that this is a false perception and that palliative care—including symptom management, psychosocial counseling, and discussion about treatment goals and expectations—should be incorporated into oncology care beginning at the time of diagnosis, particularly for patients with aggressive disease or high symptom burden.
“There is a growing recognition that palliative care is an important component of care for patients with cancer, as well as uncertainty and ambivalence about how palliative care and oncology could optimally work together,” said Susan D. Block, MD, of Harvard Medical School and Dana-Farber Cancer Institute.
Physicians may believe in the value of palliative care but still hesitate to bring up the subject with their patients, fearing that it will destroy their hope or imply a lack of commitment to treatment.
“People equate palliative care with the end of life, when in fact it is part of care throughout the continuum,” said Jamie H. Von Roenn, MD, of Northwestern University. “There clearly is a time, not only when patients are dying but when they are cured, when treating the disease isn’t the goal. We should always give good symptom management when people present with disease; if they are cured, we should treat the symptoms of our therapy; if they recur, we should treat the symptoms along with the disease recurrence.”
In fact, a recent study conducted by Jennifer S. Temel, MD, demonstrated that palliative care interventions improve outcomes for patients with terminal lung cancer, leading to an increase in survival of nearly three months (Temel JS, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363:733-42). The study was funded by a Career Development Award from the Conquer Cancer Foundation (formerly known as The ASCO Cancer Foundation®).
“Oncologists often have fears about talking to their patients about palliative care and have concerns that state-of-the-art cancer care and palliative care cannot be done simultaneously,” Dr. Temel said in an interview with the Conquer Cancer Foundation. “This study shows that addressing both symptom management and cancer therapy at the same time is not only feasible, but also beneficial for patients, and will have a huge impact on both fields.”
Susan D. Block, MD
Photograph by Sarah Putnam
Dr. Von Roenn reminds oncologists that palliative care is valuable even when it has no effect on survival.
“The goal is improving quality of life, symptom control, and follow-though on patient choices,” she said.
Better education, coordination for improved care
While it is standard practice in oncology to treat symptoms like nausea and vomiting related to cancer care, oncologists may neglect to look for less obvious symptoms that require palliation, whether those are physical issues like fatigue or psychological issues like depression.
“Ideally, physicians should be better trained in the principles and practices of palliative medicine, so that in the same way that we routinely talk about toxicities of therapy, we specifically address how those toxicities translate into symptoms for patients and how we’re going to treat them,” Dr. Von Roenn said. “Just like oncologists don’t call an infectious disease specialist every time someone has neutropenic fevers, we should be relatively expert as oncologists at treating pain and symptoms and call a palliative care specialist for the very difficult problems, not the things we see all the time,” she added.
And no oncologist is expected to be the sole provider of a patient’s palliative care. A team approach to palliative care can include everyone in an oncology setting: physicians, nurses, social workers, financial planners, palliative medicine specialists, and others. “We’re just beginning to see the emergence of strong palliative care/oncology collaborations in the outpatient setting, in which care is shared and we’re able to focus on patients’ goals,” Dr. Block said. “One of the things I say to patients is, ‘The oncologist is going to help you live as long as possible with your cancer, and we [the palliative care specialists] are going to focus on helping you live as well as possible with your cancer.’ Most people want both—they shouldn’t have to make a tradeoff.”
An ideal collaborative model, she explained, would include palliative care specialists in oncology clinics and on specialized consultation units in hospitals, focusing on “patients with high symptom burden, high levels of anxiety about their diagnosis, and with advanced illness,” she said. “In many cases, palliative care physicians are best equipped to manage the physical issues, address the decision-making and goals-of-care issues, provide support to the patient and family to make sure that family members at high risk for bereavement problems are identified, and coordinate care in the community.”
The politics of palliation
Despite its many benefits for patients, palliative care is a charged issue in health care. The sensational mischaracterization of palliative care discussions as “death panels” during the recent health care reform debates was a “step backward” for the field and for patients, Dr. Von Roenn said.
According to Dr. Block, the politicization of discussions about patients’ values and goals for future care “thwarted the ability of the health care system to appropriately recognize and address patients’ wishes to have control over their own decisions at the end of life by sabotaging legislature that would have furthered advance care planning.”
Palliative care also suffers from a Medicare policy that requires patients to stop undergoing active therapy in order to receive a financial benefit to be applied toward hospice care, which can be expensive. “The message is that you can have one [aggressive treatment] or the other [palliative care], when really you should have both in an appropriate balance,” Dr. Von Roenn explained. The policy “demands, from a financial point of view, that if you want the best symptom care and support for yourself and your family at the end of life, you must give up disease-modifying therapy, and that’s all wrong.”
“Patients can be receiving the most cutting-edge, aggressive chemotherapy under the sun and also be receiving palliative care,” Dr. Block said of the false dichotomy, “and indeed I think that combined, collaborative model is the way of the future.”
Cost management: A fortuitous side effect
Palliative care can help patients manage the cost of their treatment by providing a framework for clear discussions about the patient’s goals, eliminating unnecessary tests and non-beneficial therapies from treatment plans, and emphasizing patient choice. “People oriented towards palliative care frequently try to limit the number of evaluations patients undergo because they wear patients out and waste money,” Dr. Von Roenn said. “This focus limits tests to what is essential” for decision-making. “If the information from the test won’t affect decisions about care, don’t do it.”
Dr. Von Roenn used the example of the routine practice of oncology trainees ordering a thyroid scan to evaluate a thyroid nodule in a patient with newly diagnosed, incurable metastatic cancer. “How will this change treatment or improve care? We should be teaching residents when and how this information will affect patient care, and that’s when we should do further evaluation.”
Cost savings is not the goal of palliative care, Dr. Block emphasized, but it is a valuable side effect: “The best literature that we have suggests that palliative care can be a significant asset in managing and better utilizing health care resources for patients. All patients should have the opportunity to express their wishes, to receive the care they want, and to avoid the care they don’t want. The goal is to give patients the best possible care from their own perspectives—better communication will help achieve this goal, and in the process is likely to save money.”
As perceptions of palliative medicine continue to evolve, palliative care specialists hold a unique place in oncology. “Palliative care physicians need to have outstanding communications skills, a good scientific mind, and an attitude of deep compassion and humanism,” Dr. Block said. “Many of my oncology colleagues share these characteristics. What distinguishes a palliative care physician is that they find something compelling about companioning patients through this journey and providing medical care to patients for whom many would say, ‘There is nothing to be done.’”
Dr. Von Roenn, a palliative care specialist, is a Professor of Medicine at Northwestern University’s Feinberg School of Medicine, member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, and Medical Director of Northwestern Memorial Hospital’s Home Hospice Program. She is a member of ASCO’s Cancer Education Committee and serves on the Editorial Board of ASCO Connection.
Dr. Block is a Professor in the Departments of Psychiatry and Medicine at Harvard Medical School, a Professor of Medical Oncology and Chief of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute, and a psychiatry physician at Brigham and Women’s Hospital.
|ASCO Recommends Steps to Improve Advanced Cancer Care Planning
In January 2011, ASCO issued a new policy statement which recommends steps to ensure that physicians initiate candid discussions about the full range of treatment and palliative care options soon after patients' diagnosis with advanced cancer. Later in 2011, ASCO will issue clinical guidance to help oncologists initiate these conversations and better integrate palliative therapy into oncology practice.
Learn More about Palliative Care on ASCO University®
ASCO University, the Society’s online education platform, offers three modules related to palliative care:
- Oncology Literature Reviews: Updates in Lung Cancer, July–September edition. This module includes a review of Dr. Jennifer Temel’s study on palliative care and lung cancer outcomes and features expert commentary on implications for practice. Completion of the palliative care section of this module is worth 1 AMA PRA Category 1 Credit™; completing the entire five-section module earns 5 AMA PRA Category 1 Credits™.
- Palliative Care Review Module. Launched in December 2010, this timely 25-question self-assessment on palliative care includes detailed answer rationales with links to references for further reading. This is an ideal choice for fellows preparing for Board exams and physicians preparing for Maintenance of Certification exams, or for a general review resource. Completion of this module is worth 1 AMA PRA Category 1 Credit™.
- Palliative Radiation. This activity is designed to help physicians assess the benefits and risks associated with palliative radiation treatment in different case scenarios. Experts in radiation oncology provide an overview of how and when this treatment strategy may be useful and discuss practical cases that explore the decision-making process. A brief self-assessment that includes answer rationales and reference links is available, along with selected presentations from the ASCO Virtual Meeting library and helpful resources for patients from Cancer.Net. Participants may earn up to 1.5 AMA PRA Category 1 Credits™ upon completion of the activity.
ASCO’s International Efforts in Palliative Care
AfrOx Accra, Ghana
ASCO will partner with the Africa Oxford Cancer Foundation (AfrOx) to hold two-day palliative care workshops, based on ASCO’s Education in Palliative and End-of-Life Care for Oncology (EPEC-O) curriculum, in Accra and Kumasi, Ghana, from January 31 to February 3, 2011. The increasing incidence of cancer, AIDS, and other life-limiting illnesses in Ghana demands the assimilation of palliative care into the national health care system. The Ghana Health Service recognizes the importance of palliative care, and it will be a key component of Ghana’s forthcoming cancer plan; however, lack of available funding for palliative care training has been a problem. The workshops, which will feature palliative care experts from around the world, will help to provide the foundation for a sustained, ongoing palliative care training program in Ghana. Visit the AfrOx website (afrox.org/22/palliative-care) for more information on their international efforts in palliative care.
In 2011, the Conquer Cancer Foundation will award the first International Education and Development Award in Palliative Care (IDEA-PC). An extension of the well-established IDEA program, this new award is designed to provide support to early-career oncologists from low- and middle-income countries who are interested in palliative medicine. Participants in the IDEA-PC program will be matched with ASCO mentors who specialize
in palliative care, and must have a
demonstrated interest in integrating palliative and supportive care services in their current institution. Applications for IDEA-PC (and the general IDEA program) close on January 12, 2011. Visit conquercancerfoundation.org for more information.
Palliative Care Resources for Patients
Cancer.Net offers numerous resources to help your patients learn about palliative care, including the purpose of palliative care, how it differs from hospice care, and the importance of talking with the health care team. Start with an informational article for an overview (cancer.net/treatment; cancer.net/espanol for a Spanish version).
Patients can listen to a podcast of Charles L. Loprinzi, MD, discussing several essays from Art of Oncology about palliative care (cancer.net/podcasts). Art of Oncology is a collection of essays originally published in the Journal of Clinical Oncology, written by doctors about the most difficult conversations that they have with their patients, including symptom control, hospice care, and end-of-life planning. Background on these essays is available at cancer.net/perspective.
To help guide patients through these difficult yet important doctor-patient discussions, ASCO has also developed a free comprehensive educational booklet for patients with advanced cancer.