Palliative care should be provided not instead of traditional medical oncology care, but in collaboration with all appropriate active cancer treatment, from the moment of diagnosis—or even before diagnosis—through the remainder of the patient’s disease trajectory.
—Deane L. Wolcott, MD
More than 2 decades ago, Deane L. Wolcott, MD, helped develop comprehensive patient-centered psycho-oncology care in cancer centers across the country. Today, many aspects of that patient-centered care, including psychiatric, dietary, pain management, cancer rehabilitation medicine, survivorship, and palliative care services, have been integrated into a multidisciplinary, collaborative care model in hospital cancer centers, as well as in some community oncology practices. However, more needs to be done, especially in private oncology practices, said Dr. Wolcott, to ensure that all patients with cancer get integrated, comprehensive supportive care, including palliative care, from the moment of diagnosis and throughout all phases of cancer survivorship.
The ASCO Post talked with Dr. Wolcott, Director, Oncology Supportive Care Services at the Samuel Oschin Comprehensive Cancer Institute at the Cedars-Sinai Medical Center in Los Angeles, about the role of psychological supportive services in palliative care, the psychosocial issues patients contend with at different stages of their illness and survivorship, and the importance of screening cancer survivors for distress and providing referrals to mental health specialists if necessary.
Critical Part of Cancer Care
Please talk about the role of psychological supportive care services in palliative care.
The first point to make is that palliative and psychosocial care should be made available to patients from the moment of cancer diagnosis and throughout survivorship. The Institute of Medicine (IOM) report on delivering high-quality cancer care outlined five principles of cancer patient care from diagnosis onward, and they include care planning, palliative care, psychosocial support, prevention/management of long-term and late effects, and family/caregiver support.1
The definition of palliative care has had a difficult history in both public and physician perceptions of that term. As a result, for many people, palliative care is synonymous with hospice end-of-life care. I believe the human aspects of cancer care, including what we historically have called psychosocial oncology or palliative care are critical parts of cancer care delivery from the moment of diagnosis forward.
The fundamental aspect of palliative care is a genuine commitment to whole-person care, including managing patients’ physical, psychological, and spiritual distress, thereby seeking to preserve patients’ quality of life. Palliative care should be provided not instead of traditional medical oncology care, but in collaboration with all appropriate active cancer treatment, from the moment of diagnosis—or even before diagnosis—through the remainder of the patient’s disease trajectory.
One of the challenges we face is that palliative care services often have developed relatively independently of other supportive oncology services. For example, oncologists, nurses, psychiatrists, psychologists, social workers, and dietitians tend to work in separate departments, and their services are often not integrated into whole-patient care. But there is a sea change underway in the models of care for hospital-based palliative care programs, with greater emphasis on multidisciplinary collaborative care.
We are facing a workforce shortage—currently there are only about 200 psychiatrists and psychologists who are members of the American Psychosocial Oncology Society. Many of these professionals work in major academic cancer centers and have academic as well as clinical roles. We need adequate professional resources and sustainable models to ensure that patients with cancer treated in smaller hospital cancer centers and in community-based oncology practices have access to needed psychiatric and psychological care. We also need to rapidly increase the workforce of palliative care physicians to meet the needs of patients with cancer in all oncology care environments.
This workforce shortage is becoming particularly acute as the number of cancer survivors is rapidly increasing. Community cancer service organizations, such as the American Cancer Society and CancerCare, are a critically important component of our national cancer supportive care services delivery system. We need to further develop models for collaborative supportive care among hospital programs, community oncology providers, and community-based resources.
The role of psychiatry in comprehensive patient-centered cancer care is important, but it is most valuable if it is part of an integrated multidisciplinary care delivery system where patients have access to psychological expertise, social workers, dietitians, experts in pain and symptom palliative care management, and patient and family support groups.
Disease Phases and Distress
Please describe the psychosocial issues patients may experience at different stages of their illness and survivorship.
Thirty-five years ago, Avery D. Weisman, MD, published a study on the psychosocial phasing in cancer,2 in which he described a prediagnosis phase, early diagnosis and active treatment phase—what we now call the survivorship phase—recurrence/relapse phase, and end-of-life phase. And throughout those different phases, there are distinctive typical patterns of distress and anxiety.
Often the prediagnosis phase—for example, when someone has a lump that needs to be evaluated—causes the highest level of acute anxiety and fear. Some people in this situation will have tremendous cancer anxiety and will not have cancer. And while that is often the time of greatest distress, we have very few resources available to support people during that prediagnosis phase.
Once people are diagnosed with cancer, we tend to see understandable initial fear: What is my prognosis? Am I going to survive? Do I have to face the possibility of death? This initial concern is often followed by fears of having significant pain as a result of their cancer or cancer treatment. So, fear of pain, death, and dying, and then the distress brought on by the treatment itself can all cause tremendous anxiety.
For people who are doing well and have completed active treatment, there are often conflicting emotions. There may be a sense of initial relief but then a feeling of anxiety over not getting the same level of care and clinical observation they received during treatment. Patients often feel a sense of abandonment, which is where I think the whole cancer survivorship emphasis is really important.
The recurrence phase is another time of great distress, anxiety, and fear—and, not uncommonly, anger—because the patient has to go from being a long-term cancer-free survivor to possibly accepting a limited life expectancy. So it is a time of great distress that needs a lot of attention and care.
Patients who develop rapidly progressive disease and are approaching end-of-life, along with their families, experience a whole other series of stresses. These include such uncertainties as: Is it realistic to maintain hope? To what extent is it important to continue aggressive active treatment? And when should the process of accepting a likely limited life expectancy begin?
Other factors that contribute to the levels of distress, anxiety, and depression patients may feel include the age of the patient and other illnesses the patient may have.
We are also continuing to learn how many cancer patients at all phases of their illness cope very effectively, constructively engage with their families and social support systems, maintain active social role function, and often develop a greater clarity of their life priorities and values. The common and often remarkable resilience of patients with cancer is one of the most important aspects of the cancer experience.
How do pain and fatigue contribute to anxiety, depression, and insomnia?
They are all interrelated. Anxiety, depression, fatigue, and pain are the four most common symptoms patients with cancer experience, and they can each contribute to insomnia. You cannot diagnose major depression in someone who is in pain. If you get the pain under control, the next day the patient is usually less depressed. You need to systematically assess and manage pain, fatigue, anxiety, depression, and insomnia. Successful management of one symptom often contributes to decreased severity of the other symptoms. We ideally want to continuously minimize each of these symptoms throughout the patient’s medical course.
How can oncologists assess patients for psychological distress?
It is an enormous challenge. We are seeing an exploding incidence of cancer with a relatively small number of oncologists available to treat these patients. It is not reasonable to expect medical oncologists to spend significant amounts of time communicating with their patients about the psychological distress they may be experiencing. A number of distress screening instruments have been developed, including the National Comprehensive Cancer Network (NCCN) Distress Thermometer and the Edmonton Symptom Assessment Scale, which can be used in the office practice environment.
I don’t think there will be a real solution to this problem until we have a national commitment to develop and implement a comprehensive supportive oncology care delivery system, including palliative care services that are available to all physicians in all locations.
Matthew J. Loscalzo, MSW [Executive Director, Department of Supportive Care Medicine, and Professor, Department of Population Sciences at City of Hope, Duarte, California], has developed SupportScreen, a Web-based touch-screen tool that patients can use to self-report both physical and psychosocial concerns via a questionnaire. SupportScreen is being used at City of Hope and other cancer centers, and we are implementing this screening tool at the Samuel Oschin Comprehensive Cancer Institute. Our early findings show that with this technology, we are identifying many more supportive care needs than we had previously.
The Commission on Cancer has mandated that by 2015, hospital providers must have a plan in place to evaluate patients for distress and refer them to programs for help. Tools such as the NCCN Distress Thermometer, which measures a patient’s distress on a 0-to-10 scale, can also be useful. If a patient has a score of 4 or higher, it is an indication that the person should be further evaluated and, if warranted, referred to a mental health-care specialist.
How we will effectively screen all patients with cancer for psychological distress with the limited resources we currently have, however, remains a big challenge.
Do you have any final considerations about supportive care services you’d like to emphasize?
I believe the important themes in oncology supportive care services must include integrated, multidisciplinary supportive care teams that fully assist the care provided by medical oncologists, that integrate traditional care with palliative care and cancer survivorship services, and that help support patient resilience during the profound stresses of cancer and its treatment.
At the cancer care delivery system level, we need to develop clinically effective, high-value, sustainable business models to support truly comprehensive supportive care for all patients with cancer in all care environments, throughout all phases of their illness and survivorship, as was so eloquently outlined in the IOM report. ■
Disclosure: Dr. Wolcott reported no potential conflicts of interest.
1. Institute of Medicine: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC, National Academies Press, 2013.
2. Weisman AD: A model for psychosocial phasing in cancer. General Hospital Psychiatry 1(3):187-195, 1979.
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 ASCO’s Senior Director of Education, Science and Professional Development Department.