Public Opinion Research on Palliative Care and Living with a Serious Illness
By Lisa Morgan
Do people know much about palliative care? What are the top concerns of people living with a serious illness?
In a recent public opinion survey, when palliative care was explained people wanted it. Here’s the definition:
“Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
“Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. This care is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”
What People Want
More than eight in ten consumers said they would consider palliative care for themselves or a loved one if they had a serious illness. They also strongly believed that it is very important for palliative care to be available at all hospitals.
In fact, after hearing the palliative care definition, a majority of people strongly agreed with the following statements:
- Palliative care treatment options should be fully covered by health insurance
- It is important that patients with a serious illness and their families be educated that palliative care is available to them together with curative treatment
- Doctors who treat patients with a serious illness should refer these patients to palliative care when the patient is experiencing difficult-to-manage pain or other symptoms
- Palliative care should be available to patients with a serious illness based on a patient’s need, not based on their prognosis
When they were asked to choose the TWO MOST important things to say about palliative care, consumers chose relieving suffering and providing the best possible quality of life.
Overall, the most compelling statements were the ones about improving life expectancy, providing the best quality of life, appropriate at any age and providing care along with curative treatment, matching treatment options to patient goals, being a team approach to care, providing an extra layer of support, and providing relief for patients:
- Recent studies, including one published in the New England Journal of Medicine, have shown that patients with a serious illness who have received palliative care lived longer than those that did not receive this care.
- The goal of palliative care is to relieve suffering and provide the best possible quality of life for a patient and their family.
- Palliative care provides patients with relief from the symptoms, pain, and stress of a serious illness.
- Palliative care is appropriate at any age and at any stage in a serious illness and can be provided alongside curative treatment.
- Palliative care doctors, nurses, and other specialists work together as a team with a patient’s other doctors to provide an extra layer of support.
- Palliative care helps patients and family members coordinate a patient’s care among health care providers and navigate the medical system.
- Palliative care is available to patients with a serious illness regardless of their prognosis.
- The palliative care team of doctors, nurses, and other specialists spends time with a patient and their family to help them match their treatment options to their goals.
- Palliative care is about treating the patient as opposed to the disease.
Concerns About the Health Care System
These are the ways that patients and caregivers said the current health care system is NOT meeting the needs of patients with a serious illness:
- Medicine, number of doctor’s visits, health insurance and out-of-pocket costs for these patients is too expensive
- Doctors need to better understand these patients needs
- The health care system is working for the for-profit/business industry and not for patients
- The cost of healthcare is particularly devastating to the elderly population
- Seriously ill patients too often receive limited care and options for their care
- Doctors have too many patients so can’t provide the focus and care that these seriously ill patients need
- There needs to be more alternative treatment options for cancer
- There needs to be more affordable options for home assistance/home care for seriously ill patients
When patients were asked about their specific concerns, the top three were:
- Patients and their families not having enough control over their treatment options
- Doctors might not choose the best treatment option for these patients’ medical conditions
- The lack of understanding about what patients and families are supposed to do when they get home
These concerns have one thing in common─communication between patients and their doctors. All of these issues are part of what palliative care teams provide.
About the Public Opinion Survey
The national survey was conducted by telephone and online in June 2019 by Public Opinion Strategies (POS) on behalf of the Center to Advance Palliative Care (CAPC). View the report here.
Lisa D. Morgan is Chief Marketing and Communications Officer for the Center to Advance Palliative Care (CAPC).