It’s 6 p.m., and an 87-year-old woman with heart failure, diabetes and chronic obstructive pulmonary disease (COPD) starts to feel short of breath. She lives alone, and her doctor’s office is closed; its office voicemail tells patients experiencing an urgent medical issue to hang up and dial 911 or visit the nearest emergency room.
In most circumstances, the woman would have little choice but to call an ambulance and go to the hospital. If she were in a palliative care program, however, her call might have been answered by a specially trained palliative care doctor or nurse. That doctor or nurse might have been able to help her manage her shortness of breath, assess whether her medications needed adjusting, and arrange for a nurse to make a house call. Rather than enduring hours in the emergency room and a hospital stay, the woman would remain in the comfort of her own home.
That’s exactly the goal of palliative care—to help seriously ill patients lead the kind of life they want to live. This may mean controlling their symptoms enough to go on a vacation, making it through chemotherapy with as little discomfort as possible, or simply staying in familiar surroundings during their illness.
Though helping very sick people live better may seem like an obvious objective, it hasn’t always been the health care system’s primary goal.
“The current system has done amazing things in finding intensive, aggressive treatments to fight very difficult diseases, but these treatments are often complex and burdensome,” said Dr. James Mittelberger, a palliative care doctor and director/chief medical officer of Optum’s Center for Palliative and Supportive Care, a UnitedHealthcare sister company. “Our health care system in general hasn’t done as good a job focusing on the pain, symptoms, quality of life and goals of people and families. With palliative care, we are helping patients and families deal with the stress and symptoms of serious illness and filling a serious gap.”
Home-based palliative care is often better than shuttling in and out of emergency rooms and hospitals, according to Dr. Dana Lustbader, a palliative care doctor and chair of the Department of Palliative Care at ProHealth Care, an Optum company in Lake Success, New York. That’s especially true for people with multiple chronic conditions or serious illness, as well as elderly patients.
“Older people tend to decline when they’re in the hospital,” Lustbader said. “They end up spending too much time in a hospital bed, which can cause muscles to weaken, and there’s a greater chance of a medication error. They can also get very confused.”
Another major benefit of palliative care is that it focuses intensely on family caregivers, who may need just as much support as the person who is ill. People who take care of seriously ill family members are more likely than non-caregivers to develop depression and other mental health issues, have higher levels of stress and frustration, face increased risk of heart disease, and are less likely to take care of themselves by eating properly and exercising, according to the Family Caregiver Alliance.
“If the caregiver falls apart, the patient declines,” Lustbader said. “Nurses and social workers provide a lot of support to family caregivers—making sure there is adequate food in the home, making sure they have transportation to doctors’ appointments, or even finding them access to resources in the community that may be able to help.”
At times some of the most valuable support palliative care doctors and nurses offer comes in the form of helping caregivers navigate through difficult conversations with their loved ones, conversations that many feel completely unprepared to handle on their own.
Lustbader recalls a patient whose wife pleaded with her not to tell her husband that he had lung cancer that had spread to his brain, for fear that the information would depress him. Lustbader was able to help her understand why it was so important to be transparent with her husband about his condition. And when Lustbader talked to the patient, she learned that he had important goals that he wanted to fulfill in the time he had left.
“He said, ‘My family is worried about me, but I want to go to Israel and take my grandson to the Western Wall before he’s bar mitzvahed,’” Lustbader said. “In the next week, we got his symptoms sufficiently under control so that he and his wife and his grandson could go to Israel.”
Achieving a wish that may have seemed impossible or even absurd – whether that’s a religious pilgrimage or simply receiving care in the comfort of one’s home instead of in a hospital — is the highest purpose of palliative care. It’s about making a person’s life better and easier at a time when it is inherently difficult.
If you think that you or a loved one could benefit from palliative care, talk to your doctor. To understand what services may be available, call your insurance company and ask about palliative care.
What is Palliative Care?
Palliative care provides specialized medical care for people with serious illnesses. The focus is on providing relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both patients and family members. Care is best delivered through a team of doctors, nurses and social workers who work together with the patient’s other doctors to provide an extra layer of support at home.
Sometimes the term “palliative care” is used in place of hospice care, but they are not the same thing. While hospice is a form of palliative care, it is only for terminally ill patients in the final six months of their lives.
Patients can get palliative care from a specially trained team while they’re going through chemotherapy, dialysis or other treatments. In fact, studies show that patients with advanced cancer live longer and have a better quality of life when they receive palliative care than when they do not.