Living With Cancer: The Role of Palliative Care in Long-Term Survivorship Care

A Conversation With Mary McCabe, RN, MA


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Jamie H. Von Roenn, MD

Mary McCabe, RN, MA

According to data from the Surveillance, Epidemiology, and End Results Program (SEER) and the U.S. Census Bureau registries,1 there are currently about 13.7 million cancer survivors in the United States, and that number is projected to grow to 18 million by 2022. In addition, 64% of this population has survived 5 years or more, 40% have survived 10 years or more, and 15% have survived 20 years or more. For some of these survivors, however, having a cancer diagnosis and treatment will result in myriad physical and psychosocial issues—including chronic pain, sleep disorders, anxiety and depression, and cognitive difficulties—long after active treatment is over.

While the term “palliative care” used to be synonymous with end-of-life care, the increase in the number of people surviving cancer for many years past their original diagnosis or living with cancer as a chronic disease has risen so dramatically, the term has been expanded to encompass a spectrum of care for survivors of any age and at any stage of illness, said Mary McCabe, RN, MA, Director of the Cancer Survivorship Program at Memorial Sloan-Kettering Cancer Center in New York.

The ASCO Post talked with Ms. McCabe about the changing role of palliative care in long-term survivorship care plans.

Important Relationship

What place does palliative care have in long-term survivorship care plans?

Very often people think that palliative care and survivorship care are unrelated and are even at opposite ends of the oncology care spectrum. But if one thinks about the definition of palliative care as focusing on symptom management, then it really does have a link to survivorship care. The two terms are very, very important in relation to each other, and if you think about the essentials of palliative care, including attention to both physical and psychosocial symptoms and the need for interdisciplinary care, then palliative care and survivorship care are very related.

Educational Process

Is the understanding of when to use palliative care changing, especially since ASCO and other organizations are recommending that the concept be integrated into standard oncology care early after a cancer diagnosis?

Yes, palliative care is about symptom management, and there is an educational process that has to take place so that people begin to think about it in that way. We need to focus on addressing symptoms that a patient either self-reports or that physicians or nurses identify when they have an interaction with the patient. Clinicians should elicit that information by asking questions regarding any symptoms and quality-of-life concerns the patient may be experiencing and not wait for the patient to bring them up voluntarily.

When we think about survivorship, it’s important to acknowledge that there are several types of at-risk groups in need of palliative care symptom management. For example, we know that a pediatric cancer survivor who has had very intensive therapy is going to have a lot of chronic problems post-treatment, so linking a good assessment of those problems with interventions is important. Patients who have undergone a stem cell transplant are another at-risk group.

Elderly patients are an additional group to pay close attention to. Soon, 76% of cancer survivors will be over the age of 60, and these individuals are going to have coexisting problems that may be exacerbated by their treatment. We need to monitor them and provide interventions.

In addition, we need to focus on the socioeconomically disadvantaged population with limited resources. We need to figure out how we can efficiently provide these survivors with the same quality of post-treatment care and plan their care so that it minimizes the morbidity they may experience.

Essential Components

What are the essential components of palliative care?

Symptom and pain management as well as attention to psychosocial issues are all important components. And discussions of goals of care are very important at any time along the survivorship care continuum. The other important component is determining which provider can be the most helpful, for example, in the management of pain symptoms during or after treatment. Chronic pain has been underappreciated in the successfully treated patient.

Fatigue is another common problem for many cancer survivors. Although it is not really possible to prevent or completely treat cancer-related fatigue because it is caused by a number of factors, but just acknowledging that it exists and recommending some possible interventions—for example, taking short naps throughout the day or engaging in light exercise—at least legitimizes the problem for patients.

Cognitive dysfunction, known as chemobrain in the lay press, is also an extremely important problem to identify, acknowledge, and offer interventions for, to reduce the problem. It is important to reassure patients and legitimize what they are telling us about changes in memory and/or in their ability to multitask.

Coordination of Care

Who is the appropriate medical professional to address the palliative care needs of cancer survivors?

There are many factors that determine who is the right provider to address specific concerns, including the type of symptom the survivor is experiencing and how far out the survivor is from treatment. There are some symptoms that the oncologist may feel very comfortable addressing, especially if they are consequences of the treatment. Other symptoms or problems, such as depression, may require a referral to another specialist, and there are some issues the primary care physician may feel comfortable treating, such as chronic pain.

One of the most important aspects of symptom management is for the patient to know who is responsible for treating a specific condition. After all, coordination of care is the reason there is such an emphasis on care planning for survivors. In the short-term, the oncologist may feel responsible for care of the post-treatment patient, but over time, as care for that patient is transitioned to the primary care physician, any residual issues related to the cancer and its treatment need to be communicated to the primary care physician. A care plan needs to include some identification of who is ultimately going to be responsible for the management and alleviation of particular problems.

Although the emphasis on palliative care is important, the key issue really is the focus on identifying and managing symptoms in the post-treatment patient and acknowledging that it is not sufficient for patients to have successfully completed treatment. It is the successful completion of treatment and living well post-treatment that are the ultimate goals. ■

Disclosure: Ms. McCabe reported no potential conflicts of interest.

Reference

1. De Moor JS, Marlotto AB, Parry C, et al: Cancer survivors in the United States: Prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomarkers Prev 22:561-570, 2013.

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. ■



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