What is palliative care?
Recently, WITF asked three local Palliative Care experts to participate in a screening of the Frontline documentary Being Mortal. The documentary explores the way the medical community approaches life-threatening illnesses – and how patients, families and doctors often struggle with complicated treatment decisions during end of life. After the screening, our local experts were asked for insight into the world of palliative care.
Palliative care is defined by the National Cancer Institute at the National Institutes of Health as “care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. The goal of palliative care is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to the related psychological, social, and spiritual problems. The goal is not to cure.”
“I’m typically not a doctor who can fix things, but I’m typically a doctor who can help you cope with and understand and make those better choices,” said Dr. Arlene Bobonich of PinnacleHealth’s Palliative Care division. “Palliative care aims to help patients and families who are suffering from critical, complex or life limiting illnesses with an intention of symptom relief and plan of care.”
When asked if palliative care is a “new approach” in medicine, Dr. Kristina Newport of Hospice and Community Care was quick to point out, “I don’t think that palliative care is a new idea. It’s really identifying what are the pieces that were important to being a human in medicine that we lost along the way. And how can we bring those back and match those up with the technology we have so that people have what they need in terms of technology, but they also have what they need in terms of living theirs lives and achieving their goals and priorities as well.”
But the fear of dying still looms large over many patients. And end of life issues are often the most difficult to discuss with friends and family. “I think we have this image that we are all going to be the picture of health and live a very long time and death comes suddenly and painlessly,” said Dr. Margaret Kreher of Penn State Hershey Medical Center’s Palliative Care Team. “I think that’s just how we envision it and most of us don’t die that way. So generally there’s a view of ‘oh, that must mean that I’m giving up or that my doctors are giving up if they called you’. That’s the biggest misconception.”
Dr. Kreher was drawn to palliative medicine early in her career. “I trained at a time before highly active anti-retroviral therapy in HIV, and at that time, 3 out of 10 of our patients were young people dying of AIDS. And through that experience, I think I grew an appreciation for just how important it is for people to figure out what are their priorities in life? How can I get there? How do I need to feel to be able to do that? How do I reconnect? What’s important to me? That was an important time for me in learning because I grew to appreciate that people do a lot of good things when they try to figure out what’s important.”
All three doctors stressed the importance of being honest with your physicians about what matters to you – be it a last vacation, making amends, or just living out your final days in your home. Dr. Newport said, “I know that the involvement of my team represents something that is uncomfortable and that people don’t always want to face. But some of the strongest patients that I’ve ever cared for were people who were able to say ‘that treatment isn’t right for me anymore and I’m going to go and live my life now’. That is not something that someone who is weak or is giving up can do. It takes a lot of strength to recognize when it’s time to change your focus.”
But what can happen when a seriously ill patient feels able to discuss their wishes, desires, needs and goals for whatever time they have left? Says Dr. Bobonich, “once that barrier is broken, my personal experience is that things go beautifully. Absolutely beautifully.”
