Q: Why do we say people "fight" an illness?
A: This question gets to the heart of a huge problem we have in the United States; how we think about sickness and death. We focus our medical care system on treating illness rather than promoting health. Let me use some Medicare data to illustrate this point.
Eighty percent of people who die in the U.S. are covered by Medicare at the time of their deaths, representing more than 2.5 million people per year. A very disproportionate percentage of Medicare spending, over 25 percent, occurs during the last year of patients' lives (even though the benefits of this care are limited).
In addition, we identify dying as “losing” the fight against illness. This attitude is unfortunately deeply ingrained in the thinking of the medical community. Health care professionals too often consider the death of one of their patients as a failure; rarely will most medical professionals prioritize the ‘quality’ of someone’s death.
The reality is that death is a part of the continuum of life, and as far we know everyone will eventually die. Many cultures respect this fact, and honor the dying and the dead. For example, Nov. 2 is the Dia de las Muertos (the Day of the Dead) in Mexico, where the dead are honored. In Korea the ashes of a loved one may be honored by turning them into colorful beads. In Japan death is seen as liberation and acceptance, in the Hindu religion it is preferable for a loved one to die surrounded by their friends and family to help their soul continue to survive (as per their karma), and there are many other examples (my apologies for summarizing the incredible detail and nuance of this issue for these varied cultures so briefly).
When asked, most Americans (around 70 percent) identify a "good death" as dying in a peaceful and dignified manner at home, without pain or suffering, and in a manner that will minimize any negative impact on their family and friends. However, only about a third of Americans die at home.
There are some actions our health care system can immediately take to improve how we address end of life. The first is to better prioritize a patient’s wishes with regards to how they would like their end of life to be handled. To do this we must encourage patients to create an advanced directive to outline what their wishes are, and to share these preferences with their family and loved ones.
A second step we can take is to expand the provision of hospice care, a model (and a philosophy of care) that focuses on improving end-of-life care for patients with a terminal illness. It includes focusing on symptomatic care (including pain management and in general keeping the patient as comfortable as possible), respecting and preserving the patient’s dignity (including addressing issues such as incontinence, physical hygiene, etc.) and addressing the location for this care to be provided (including doing so in the patient’s home). Even though Medicare covers hospice care (including hospice care in the patient’s home), only about 40 percent of Americans are "in hospice care" at the time of their death.
One of the barriers to having patients enter hospice care is the limited predictive models that exist to identify when a patient’s life is likely to end. For example, the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) showed that a prediction of two months survival was given to 17 percent of patients who actually died the next day, and to over 50 percent who died within a week. We clearly need to do better.
As the end of life approaches many patients have a deterioration of their mental status/cognition, and many families are emotionally and logistically unprepared to address end-of-life issues at that time. Therefore, end of life issues must be addressed early while an honest and transparent discussion with the patient and their family can occur. I urge everyone to consider this important issue, to write an advanced directive and to identify who they want to make decisions for them should they become unable to make decisions for themselves, and to discuss this with their family and loved ones.
Jeff Hersh, Ph.D., M.D., can be reached at DrHersh@juno.com