In 2012, ASCO issued a provisional clinical opinion addressing the integration of palliative care services into standard oncology practice at the time a patient is diagnosed with metastatic or advanced cancer and for patients with uncontrolled symptoms.1 However, despite ASCO’s provisional clinical opinion and numerous studies showing the benefits of palliative care for patients and their caregivers, including one by researchers at Icahn School of Medicine at Mount Sinai,2 palliative care services remain underutilized for patients with cancer.
“Patients need early identification of their palliative needs, and those needs might be in the realm of symptoms that are not well controlled, both physical and psychological. But evaluations also need to be made of any other issues that are impacting patients’ quality of life,” said Deborah Dudgeon, MD, FRCPC, W. Ford Connell Professor of Palliative Care Medicine at Queen’s University in Kingston, Ontario, Canada, and Senior Scientific Lead for Person-Centred Perspective for the Canadian Partnership Against Cancer.
As the former head of Palliative Care for Cancer Care Ontario, Dr. Dudgeon helped to integrate palliative care into the 14 regional cancer centers in Ontario and also helped to develop a Web-based tool patients could use to describe the intensity of their symptoms—such as their level of pain—to their physicians for further evaluation and management.
The ASCO Post talked with Dr. Dudgeon about assessing patients for palliative care and dispelling the long-held association of palliative care with only end-of-life hospice care.
Expertise and Teamwork
When should patients with cancer be considered for palliative care, and who is best qualified to treat their symptoms?
Patients have many palliative needs and often present to a physician with symptoms of pain, shortness of breath, and other issues even before a cancer diagnosis is made. They need a physician with the expertise to manage their symptoms.
My own feeling is that all physicians need to have a basic level of knowledge about palliative care and that we, as oncologists, need to have the next level of knowledge, because many of our patients present with symptoms, both from the disease and from the treatments we give, including pain, fatigue, shortness of breath, weight loss, nausea, and vomiting. Then there is the need for the third level of care by palliative care experts who have more training and experience in managing symptoms that are refractory to simpler measures.
Ideally, you want palliative care to be provided by the primary physician who is managing the patient’s standard oncology care. But the integration of palliative care into standard oncology care is very much about teamwork. The type of care and who manages the care depends in part on the complexity of the individual patient’s disease and symptoms.
Patients should be assessed for palliative care needs throughout the course of their illness, for any issue that is negatively impacting their quality of life and their ability to cope with having cancer.
It is important for oncologists to be aware of available supportive services, including psychological, social, and spiritual resources, so they can refer patients to the appropriate expert for care, to help patients cope with emotional, mental health, and existential issues resulting from their diagnosis.
Integration of Care
Should palliative care be integrated into standard oncology care for all patients?
Yes. We talk about a simultaneous model of care, so it’s not a question of whether a patient should receive either palliative care or cancer care that is oriented toward the disease. There needs to be an integration of palliative care with disease-oriented management to optimize people’s quality of life throughout the course of their diagnosis, treatment, and recovery. The balance of where to focus changes over time, but both needs have to be addressed simultaneously.
Emotional Issues
How can palliative care be used to help patients cope with the emotional turbulence of living with a terminal disease?
Traditionally, palliative care has always tried to address the needs of the whole patient, including any psychosocial issues they may have. It is important for oncologists to identify early on any emotional or mental health issues patients have and then refer them to the appropriate specialist on the health-care team, such as a social worker, psychologist, or psychiatrist, if the oncologist is unable to manage those symptoms.
Screening Tool
Please describe the screening technique you developed to measure the palliative care needs of patients based on the level of physical and psychological symptoms they are experiencing.
When I was the head of Palliative Care for Cancer Care Ontario, we used the Edmonton Symptom Assessment System, which is designed to assist in screening for the intensity of nine common symptoms experienced by cancer patients—ie, pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath—to develop a Web-based tool for patients who came into our cancer centers.
Patients enter the level of severity of their symptoms on a 0-to-10 scale using a touch-screen computer every time they visit the cancer center; the information is captured electronically and printed to show to the clinician for evaluation. The printout includes a history of the patients’ symptoms over time so the clinician can see changes in the number of symptoms and levels of their severity and determine the best course of palliative management.
My understanding is that the 14 cancer centers utilizing this technology are getting about 27,000 patient inputs a month, so it is a very useful tool for oncologists to screen for palliative care needs. Following an in-depth assessment, they can then work out a management plan to address a patient’s symptoms.
Palliative vs Hospice Care
Are more physicians and patients now making the distinction between the roles of palliative care and end-of-life hospice care?
Not completely, but it is getting better. I think there are still a lot of people that tend to view palliative care as synonymous with end-of-life care, which is reserved for when treatment stops working and the cancer is no longer controllable. There is certainly a greater understanding among most cancer professionals about the difference between the two, but it is not universal.
The benefits of utilizing standard oncology care with early palliative care after a diagnosis were demonstrated in a study of newly diagnosed patients with advanced lung cancer published in The New England Journal of Medicine.3 The study found that introducing palliative care soon after a diagnosis not only improved quality of life for patients but also actually extended the length of their life. So we now have evidence showing that early integration has other value besides just quality of life. ■
Disclosure: Dr. Dudgeon reported no potential conficts of interest.
References
1. Smith TJ, Temin S, Alesi ER, et al: American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. J Clin Oncol 30:880-887, 2012.
3. Temel J, 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.
GUEST EDITOR
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. In July 2013, Dr. Von Roenn was named ASCO’s Senior Director of Education, Science and Professional Development Department. ■
