In life, some skills are taught. They are passed down through parents, friends, and teachers. These include how to swim, ride a bike, multiplication, and even basic things like eating. And then there are some things that do not have a formal teaching process. We move through life reacting and observing to pick up these untaught skills. Building experience that will prepare us for the next time. One of these untaught skills is how to deal with the end of life.
It's a sensitive topic. The end of life means death is at the door, which carries with it for all involved a wide array of complex and oftentimes painful emotions. I'll admit that it has taken me at least 10x longer to blog about this topic compared to other posts I have written. In health care, the topic of end of life is very sticky.
Health and medicine is conventionally about curing illnesses, fixing problems, and prolonging life. And many of us enter the field of health care for those very reasons. However, end of life care makes most health care providers uncomfortable because it throws a twist on a core belief: medicine allows people to live life to their fullest potential.
In a WBUR special titled: "Quality of Death: End of Life Care in America: Inside Out," Jim Conway, an IHI Senior Vice President and chair of Massachusetts' Committee on End of Life Care, said, most in health care believe that "doctors are not in the business of death, they are in the business of hope." If I am not feeling well, I do anything possible to feel better and reach out to medicine for help and hope. When I've caught a cold and have difficulty breathing through my stuffed nose, I take some pills to decongest my nose. If I'm experiencing lower back pain, I seek physical therapy to help realign my hips and spine. In these cases, the medical remedies are restoring or enhancing my ability to live my life to its fullest potential. As Dr. Jim Januzzi was quoted saying in the WBUR special, "The default is to do everything. Americans view medicine as a way to avoid deaths."
Medicine is a business of hope. That's what we've been trained to believe. George Annas, Boston University professor of health law, as quoted in the WBUR special explains, "The longer we live the less comfortable we are with dying; the more we fear it and the more we look to medicine to try to cure it." Jim Conway, counters this conventional notion by stating, "A respectful death is also a form of hope." In our fear of death, we place great effort in treating people during the final weeks and months of their lives. What we often don't realize is that in doing so, we are exposing these people to unnecessary pain and suffering.
When is the right time to stop aggressive treatment? When should palliative care begin? Palliative care aims to increase comfort while giving patients and their families the opportunity to explore treatment options beyond aggressive medical care. It also helps patients and their loved ones come to terms with the inevitability of death. Palliative care includes pain management and psychological care.
From a numbers perspective, palliative care makes sense. Studies have shown that while the majority of people would like to die a quick and painless death at home surrounded by family and loved ones, 80% in the US die in hospitals, sometimes hooked up to machines. Studies have also shown that when patients are started on palliative care at an earlier stage, they use less medical care and are more satisfied in their final months. A third of Medicare's annual budget is spent on the last year of life. That's about $144 billion. 70% of health care costs are for the elderly. Unfortunately, the amount of care received does not translate to better outcomes. Research has shown that greater intensity of care at the end of life is not better for these elderly patients, but is actually worse care.
Palliative care also makes sense through the lens of patient-centered care. Elderly patients in seeking aggressive treatment oftentimes bounce back and forth between hospitals, nursing facilities, or home. Many times, the treatments leave patients feeling confused, agitated, and sick. Studies have shown that when patients and their loved ones discuss end of life issues early on, the patients are more likely to have a comfortable death and their loved ones are less likely to suffer from prolonged grief and depression.
However, despite all of these rational reasons, I think it is still easier to talk about treatment options instead of palliative care and hospice options. Health care tends to attract type A overachieving personalities. So, how do you train future health care professionals to understand that palliative care does not mean you are giving up or that you are accepting failure? How do you let go? How do you make the transition from treatment to comfort? When is the right time to make that transition? It's not easy as a family member to watch loved ones pass, so I'm sure it is just as difficult for health care providers. I am no where near practicing medicine on my own, but I am already dreading the time where I'll have to initiate the palliative care conversation with my future patient and his/her family.
This complicated situation really should have a manual, but none exists. Since there is no manual, we must rely on experience. But, we can't wait till we start practicing independently to begin learning how to navigate these situations. Conversations about end-of-life care should be happening now while we are training. We need to experience it before we start running the show. End-of-life care should formally be included in our curriculum. A rotation in hospice or a nursing facility? We should all have the privilege to join a care team that is caring for an elderly patient nearing the end-of-life. At the very least, our professors and mentors should not hesitate to initiate discussions about end-of-life care with us. Only with this experience and support will we be able to deliver the care our patients truly want and deserve.
Help us build our experience. Prepare us for the next time.
Listen to the WBUR special titled: "Quality of Death: End of Life Care in America: Inside Out. In this documentary, special correspondent Rachel Gotbaum investigates end of life care in the US. What prevents many patients from having a dignified death? What kinds of challenges do patients, providers, family, and society face when dealing with end of life care? Click here to listen.