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Harmony in Hospice: Maximizing Quality of Life at the End of Life

Learn about the many benefits of palliative care, from managing symptoms and reducing hospital visits to supporting caregivers and honoring end-of-life wishes.

Palliative care can feel like a difficult subject, but it is life-changing for people with terminal illnesses and their loved ones. Receiving palliative care has been shown to improve quality of life and, in some cases, even extend life expectancy.

Director of the University of Maryland Parkinson’s Disease and Movement Disorders Center, Lisa Shulman, MD, hosted a recent webinar with Maisha Robinson, MD, MSHPM, Chair of the Mayo Clinic’s Department of Palliative Medicine. A trailblazer in her field, Dr. Robinson explains what palliative care is, how it encompasses more than hospice care, and the numerous ways it impacts quality of life. She and Dr. Shulman also discuss positive shifts in attitudes and approaches to this specialty.

What is Palliative Care?

Palliative care is an interdisciplinary form of medicine that seeks to recognize, prevent, and alleviate all forms of suffering, including physical, psychological, spiritual, and social. It aims to optimize quality of life for those with serious and often terminal illnesses. Though many people think palliative care and end-of-life or hospice care are the same, Dr. Robinson explains that the terms are not interchangeable. Palliative care is an umbrella term, and hospice is a type of palliative care. This specialty can help people when they’re diagnosed, as they deal with their disease, and at the end of life.

A holistic approach to well-being, palliative care encompasses symptom management, caregiver support, care coordination, nutrition, and even finances. “We’re thinking about a whole range of things, and it’s really a whole person approach to care and whole family approach to care,” explains Dr. Robinson.

What are the Benefits of Palliative Care?

There are many ways in which palliative care enhances quality of life, including improvement in symptom management during the course of the disease. Because palliative care involves discussing end-of-life wishes, it clarifies what procedures people want and where they would like to spend their final days. This helps reduce hospitalizations, emergency room trips, and the likelihood of being in the intensive care unit. As a result, it also lowers healthcare costs. Dr. Robinson points out that palliative care improves satisfaction for individuals and their families during the disease and at the end of life. “It can also reduce prolonged grief and post-traumatic stress disorder among family members after the loved one dies,” she explains.

Research backs up these benefits. A 2010 study from Massachusetts General Hospital looked at the effects of timing when it came to receiving palliative care for people with lung cancer. Individuals either had the usual lung cancer treatment or that treatment plus palliative care at the time of diagnosis. The group that received earlier palliative care enjoyed better quality of life and improved mood. There was more documentation of whether the individuals receiving early palliative care wanted CPR, and they were less likely to pass away in hospitals or need to go to an emergency room. People in the early palliative care group also survived about 2.7 months longer than those who had the usual lung cancer treatment.

Brain Disease and Palliative Care

Dr. Robinson notes that there is a slightly different approach to palliative care for those with neurologic conditions. People who experience dementia, stroke, and degenerative brain diseases like Alzheimer’s often lose the capacity to make medical decisions for themselves. That’s why she makes a point to discuss end-of-life wishes and other preferences early on. “We want to make sure that we are providing the kind of care people want at the end of life, and in order to ensure that we have to ask about it sooner in the disease process,” Dr. Robinson explains.

Having a neurologic condition can also affect the transition to hospice care. Individuals can shift to hospice care when it is likely that they have six months or less to live if their disease continues its normal progression. But, it can be challenging for clinicians to estimate life expectancy for those with neurologic conditions. “Neurology lags behind some of the other conditions. And so we use a few of the guidelines we have and sort of extrapolate to other neurologic conditions,” explains Dr. Robsinson.

A Shift in Thinking About Palliative Care

Dr. Shulman shares that when she trained as a physician, there was no discussion of palliative care. “As a result, many physicians still find it to be an area of challenge,” she explains. Dr. Robinson confirms having a similar experience. “If we think about palliative care or hospice care, we feel like we failed our patients and their loved ones,” she says. But introducing palliative care near end-of-life misses out on months or even years of support. That’s why Dr. Robinson wants more of her colleagues and the populations they serve to better understand the benefits of palliative care.

Dr. Robinson notes that there has been progress in recent years, including a significant decline in feeding tubes for people with dementia. She also notes that palliative care is often integrated into ALS clinics now. Many people used to be concerned that they had to choose between palliative care and treating their disease. Nowadays, more people know they can receive that care concurrently.

More Research

Further research and education about palliative care can help so many people improve their quality of life—whether they are experiencing advanced dementia or terminal cancer. The American Brain Foundation is committed to supporting research to improve the lives of those impacted by brain disease. Join us in our mission to discover tomorrow’s innovative techniques, treatments, and cures—donate today and make a difference.