Diane E. Meier, M.D.
Director of the Center to Advance Palliative Care
Professor of Geriatrics and Palliative Medicine, and Professor of Medicine
Icahn School of Medicine at Mount Sinai
What Is Palliative Care, Anyway?
Millions of Americans with a serious illness could benefit from palliative care, but many people know little about it and often confuse it with end-of-life care, or hospice. Below are answers to frequently asked questions to help you learn more about and understand this important health care service.
What is palliative care?
Palliative care is a new medical specialty that focuses on improving the quality of life of seriously ill patients and their families by addressing the pain, symptoms, and stress caused by serious illness. It is delivered by a team of doctors, nurses, social workers, and others, who work alongside patients' regular doctors to provide an added layer of support.
What's the difference between palliative care and hospice?
The short answer is that all hospice is palliative care, but not all palliative care is hospice. Palliative care is appropriate whether the person will be cured of their disease (such as a childhood leukemia), live with their illness for a long time (such as heart or lung disease), or have a progressive illness (such as advanced cancer or dementia). It is appropriate at any age, any stage of disease, for any type of illness, and in any setting, ranging from home to hospital. The only eligibility requirement is that the patient and family need help.
Because of Medicare statutory restrictions, hospice is only provided under very limited circumstances. Medicare and private insurance require two doctors to agree that the patient is likely to die within six months. In addition, the patient has to agree to give up regular insurance coverage for disease treatment. Hospice is an either/or model: Either you get treatment for your disease, or you get hospice. You cannot have both. Palliative care has no such restrictions.
Who is palliative care for?
The field of palliative care is growing rapidly because the majority of people who need it are not dying and are still benefiting from disease treatment. Most people who need palliative care have one or more chronic conditions, such as dementia, frailty, heart disease, lung disease, kidney failure, or cancer. Today, people are living longer than they used to with these disabling conditions. What palliative care tries to do is make those added years of high quality for the patient and his or her family.
We have patients ranging from children with a chronic disease to young people with curable leukemia, and from middle-aged individuals with cancer pain or extreme fatigue to older adults with memory loss or mobility problems. The common denominator of the patient population is that they are functionally impaired, debilitated by their illness, and need another person to help them get through the day.
What role does the palliative care team play?
One of the most important roles the team plays is communicating with patients and their families. Without palliative care, patients and families often do not know what to expect in the future during the course of their illness, or know how to manage predictable symptom crises at home. A good example is somebody with heart failure or emphysema frequently calling 9-1-1 and ending up in the emergency room and hospital because of acute attacks of shortness of breath. The reason this happens is that nobody has taught the family a home-based protocol they can follow at the first sign of difficulty breathing.
For such an individual, the palliative care team would discuss a protocol with the patient and family members so they would know in advance the series of steps they can take to alleviate a breathing problem before it becomes a crisis. A physician or nurse would be available by telephone 24/7 if families and patients run into trouble in spite of a protocol, and would customize their recommendations based on the patient's individual circumstances.
Services are tailored to the needs of patients and their families. For instance, the team might help with pain management, provide respite care for exhausted family caregivers, or arrange for a home health aide to help a functionally impaired person bathe three times a week. We also communicate with seriously ill patients and their families about what to expect in the future, the best-case scenario, the worst-case scenario, and the pros and cons of different options; and help them make the best decisions for themselves in context of their own priorities.
How else does palliative care help?
By improving quality of life, palliative care helps patients and their families avoid preventable 9-1-1 calls, emergency room visits, and hospital admissions, as a recent study has found. Our own research at The Mount Sinai Hospital showed that providing palliative care consultation to patients with cancer who were at high risk for readmission resulted in a stunning drop in the need for re-hospitalization. Additional research has shown that patients who receive palliative care at the same time as cancer treatment live longer than people who only get usual cancer care but don't get palliative care.
What advice do you have for patients and families who might benefit from palliative care?
Patients and their families have a right to care that improves their quality of life, supports their family, and potentially prolongs their life. But patients and families need to step up and take responsibility for demanding this kind of care from their clinicians, and possibly even educating their doctors about palliative care. Unfortunately, this is necessary because many of today's doctors and nurses were trained at a time when there was no field of palliative care, so they don't really understand what it is, and still confuse it with hospice. You can learn more about palliative care and whether it is right for you and your family at the website getpalliativecare.org, which provides clear and comprehensive information, resources, and a palliative care provider directory.