To better understand where patients are coming from (what we call “goals of therapy”), when evaluating a new patient for hospice, we often ask, “What are you hoping for?” Sometimes patients’ or their families’ answer reveals a readiness, or even eagerness, for death. Other times, although the doctor has certified a prognosis of less than six months, we find patients or families still very interested in life-prolonging treatments. In both cases, we meet people where they are, in terms of readiness, and walk the journey with them as their disease progresses, supporting the patient and family in body, mind and spirit.
As death nears, it becomes increasingly difficult to both prolong life and provide comfort at the same time. Some clear examples of this are chemotherapy, radiation, surgeries, ventilators, and CPR; most people agree that those measures for terminally ill patients only increase suffering without much hope for gaining good days. Other issues, such as travelling for doctors’ appointments, physical therapy, or some medications, such as those for blood pressure, cholesterol or thinning the blood are less clear.
Even when someone does not have a terminal illness, there are burdens to treatments. Take the example of pharmaceuticals: These cost the patient and society money, there may be inconvenience to taking, difficulty swallowing, side effects or interactions with other medicines. There is a psychological burden to having to take a handful of pills. There is an ecological burden to production of these chemicals and to their waste, through our bodies and into the water and soil.
Both as a person ages and as they are dying, it is extremely important to look critically at whether a medication is needed. A lot of the criteria physicians use to decide whether a medicine is indicated, in my opinion, should not apply to people nearing death. This opinion is not because I believe they don’t deserve the medicine. It is because I believe they deserve to not have to take the medicine. Because it is burdensome.
How can we decide to stop a medicine? The following concept may help: It is ethically the same question to ask, “should we continue the medicine?” and “If the condition he/she is taking this pill for just started today, would we start the medicine today?”
I feel and I fear that we have evolved, as a culture of patients, families, doctors, and other care providers to a point of dangerous consumption of medical resources. This graph shows just how far off our country is from achieving reasonable value in medicine. Note the arrow pointing to USA.
Burdens are high. 28% of Medicare dollars are spent on costs incurred in the last 6 months of life. Our bodies, our soil, our air and our water grow increasingly contaminated with chemicals that never even existed before 1970. Specific to end-of-life care, there is the additional burden of “over medicalization”: getting caught up in the details of a complex medical regimen and forgetting that there is a person preparing to depart this life. We are often “missing the forest for the trees”.
When polled, most people, when asked to consider how they would like die (before being confronted with a terminal diagnosis) would wish for a more “demedicalized” experience. Over the next few months, Compassionate Care WNC will host a series of Community Conversations on Compassionate Care (CCCC), exploring such issues as: How can we best serve the needs of the dying? How can we promote compassionate end-of-life services in this area? How can each of us prepare for our own death in ways that affirm our living values?
The first CCCC meeting will be held Tuesday, July 6th at 7pm at the Compassionate Care WNC building at 856 George’s Fork Rd. with a second meeting held Tuesday, July 20th at 7 pm at same location. Due to social distancing guidelines, only 12 people may participate in-person. Materials will be mailed to anyone who prefers to attend by Zoom meeting. Attendance is free. Everyone is invited and we are especially interested in the input of the spiritual leaders in our community. Materials and instructions will be provided so each participant can create their own Living Will and legally assign their own Health Care Power of Attorney. Call 828-682-9675 to register. Jeff Polgar, MD is the Medical Director of Compassionate Care WNC and Board Certified in Hospice and Palliative Care and Family Medicine