Whether delivered under the umbrella of palliative care, supportive care, or psychosocial oncology, these types of services strengthen the feelings of meaning, value, and dignity in patients with cancer, says Scott A. Irwin, MD, PhD, Director, Supportive Care Services, Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, Los Angeles, CA.
Psychosocial oncology, according to Dr Irwin, enhances patients’ general well-being and quality of life. Prognoses and patient satisfaction improve, as well as team satisfaction and morale, and emotional suffering is relieved. Patients’ adherence to treatment is increased, which, in turn, leads to improved clinical outcomes. Clinical revenue is maximized, and unnecessary clinic visits, hospital readmissions, and hospital length of stay are all reduced.
“There is this huge and positive impact when we provide whole-person, patient-centered care,” he said in a July 2017 webinar hosted by the American Psychosocial Oncology Society.
The “Illness Experience”
When plotting the trajectory of one’s life, a “normal” path and a particular anticipated future are often expected. “But when a serious illness comes along, it knocks us off that path,” said Dr Irwin. “This causes fear, anxiety, and uncertainty.” When this imagined path is irreversibly changed, it forces us to ask, “What will bring us meaning, value, and dignity now?”
“Things may become more or less important, but people don’t change their minds about what gives them meaning and value,” Dr Irwin said. However, the health system in the United States is arguably not set up to cater to these fundamentals.
Instead of only asking patients about their pain level or bowel movements, perhaps there should be more of a focus on asking them, “What’s important to you today, or how can we help you better live your life, given this new reality [of a cancer diagnosis]?” Dr Irwin suggested.
Helping people to get back on a predictable path by minimizing uncertainties and maximizing what brings them value, dignity, and resilience in life, presents a new opportunity for modern healthcare. Across all cancers, there is approximately a 70% 5-year survival rate, and cancer is still the second leading cause of death in the United States.
Furthermore, only 5 late-stage cancers are curable, so as a result, a large part of medicine is focused on symptom control and improving quality of life. And although most people want to die at home, only 23% actually do; 77% are dying in hospitals and nursing homes, even though it goes against their final wishes.
“I see a lot of misdiagnosed loss and grief in patients that’s thought to be depression,” Dr Irwin said. “But it’s actually them grieving the loss of the things they wanted to do.”
He stressed the importance of bettering the “Illness Experience.”
“I think our health system has forgotten Hippocrates’ words: ‘Cure sometimes, treat often, comfort always,’” Dr Irwin said. “We need to remember what we’re trying to accomplish.”
Palliative Care: What’s in a Name?
The difference between supportive and palliative care comes up often in psychosocial oncology, according to Dr Irwin. “In general, I think we can call almost everything palliative care,” he said. “But many providers frame palliative care as only end-of-life care, and overlook its value early on toward diagnosis, particularly for symptom control.”
Palliative care is defined as specialized medical care for people with serious illnesses—focused on providing relief from symptoms, pain, and distress, whatever the diagnosis—provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage of a serious illness, and can be provided together with curative treatment, or as the sole source of care.
By contrast, supportive care refers to the prevention and management of the adverse effects of cancer and its treatment across the disease continuum. It is often considered to be focused earlier in the trajectory of treatment, and typically less interdisciplinary than palliative and hospice care.
A survey of medical oncologists and midlevel providers revealed a general consensus—palliative care is perceived as more distressing than supportive care, so providers significantly prefer the latter moniker. They also reported a higher likelihood to refer patients who are receiving active primary and advanced cancer treatments to a service called supportive care.
“These definitions are highly overlapping, so I take the same approach that I take with a psychiatric diagnosis,” said Dr Irwin. “I’m less concerned that I get the diagnosis right, since I don’t have an objective way to measure a psychiatric diagnosis. I’m more concerned that I get the symptoms under control and improve the patient’s quality of life.”
Whatever we choose to call it, the overarching goals of psychosocial oncology include supporting patients, caregivers, and their cancer care team by promoting resilience, dignity, and quality of life; preventing and relieving suffering by addressing all aspects of physical, social, spiritual, and emotional well-being; and helping patients to plan for the future, achieve personal goals, and navigate transitions in care.
The Real Impact: Whole-Person Care
Research has shown that palliative or supportive care is more effective than usual care alone in reducing patient and family suffering, improving quality of care, enhancing symptom control, and lessening feelings of disrespect from the patient’s point of view. It costs less than standard care alone, prolongs life (as opposed to hastens death), allows patients to tolerate and benefit from active cancer therapy more easily, eases the emotional burden of patients and caregivers, and helps survivors of cancer with psychological and social problems.
So how should providers approach the task of delivering this type of care? According to Dr Irwin, providers should be specialized in the field, but should work as part of the rest of the cancer care team to provide integrated, whole-person, patient- and family-centered care.
Know the person, he stressed. Ask questions of patients to truly get to know them and their treatment goals—questions such as, “What should I know about you as a person to help me take the best care of you that I can?”
A survey of patients with advanced cancer asked what factors negatively affected their sense of dignity. They replied with answers such as, “feeling like a burden,” “not being treated with respect or concern,” and “feeling a lack of control.” Only one response concerned bodily functions, whereas the rest were psychosocial in nature. “This is what’s important to patients,” Dr Irwin said. “We need to ask them if they feel like they’re being treated with respect and concern, and if not, what can we do?”
Dr Irwin said that in his experience in medicine, “We never asked these questions, but these are the important questions; the ones people want to answer. People want to be treated like they have worth, and that their care is worthy and fitting to them. And the only way to know what kind of care makes them feel worthy is to ask them.”