Fresh Thinking on the End of Life

hospiceby John C. Blair, II

Twenty-first century public policy debates tend to devolve into a binary argument between those who favor the choices of individuals amalgamated into a “market” versus those who favor a state intervention to add a dash of “equality” into outcomes.

However, Atul Gawande’s Being Mortal touches on an issue that frustrates all political persuasions.  The current end-of-life care choices and care delivery options frustrate nearly every American family. It is difficult to find an American in their sixties or older who does not implore, “Please don’t let me end up in a nursing home.” Whether it’s the smells, the food, the drab interior, the loss of autonomy, or fear of institutions, nursing homes are almost universally disdained throughout the nation.

Being Mortal addresses the question: How did we end up with a society in which so many end up with a nursing home as their final destination?  Gawande’s tome traces the history of American end-of-life scenarios from the literal poorhouse to the hospital to the current nursing home paradigm.

Gawande makes a convincing argument that the nursing home “default” is a product of viewing this period of life through a medical lens rather than incorporating other perspectives. Gawande, a Boston surgeon, writes, “Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul.” Thus, values such as autonomy or stoicism are lost in the pursuit of “safety” and “preserving and repairing health.” We end up seeing medical professionals trying to extend “existence” at the cost of what many consider empty and meaningless lives.

Gawande details the tragic consequences that this narrow medical focus can have for individuals, families, and societies as individuals pursue one in a million medical surgeries rather than focusing on the quality of their remaining life. He points to a study that found that forty percent of oncologists offer treatments that they believe are unlikely to work.

Gawande offers some suggestions on how end-of-life care options can become more holistic and loosen the grip of a purely medical perspective on these choices.

One suggestion is to allow and train physicians to practice “interpretive” medicine rather than “informative” or “paternal” medicine. Paternal medicine is when physicians communicate with patients aiming to ensure that patients receive what the doctor believes is best for them. Informative medicine is when a physician simply gives patients facts and figures and leaves the decision up to the patient. Interpretive medicine has physicians ask patients, “What is most important to you? What are your worries?” When the physician determines the patient’s priorities, he or she then maps out a program to best achieve those priorities.

Another suggestion is to better promote hospice care as an option to patients and their families. Gawande recounts his own positive experience with hospice treating his cancer-stricken father. Hospice can provide a much better quality of life than the safety-focused nursing home.

Gawande also points to a community-focused solution to “avoid the nursing home option” in Ohio. Athens Village was a group of a hundred people who banded together to pay four hundred dollars a year. This money went to hire a handyman to take care of each member’s household. Additionally, a director was hired who coordinated volunteers to cook food and check up on the members. A nurse agency provided discounted nursing aid costs. Churches and civic organizations provided a van transportation service and meals-on-wheels. This community allowed its members to remain in their homes and maintain autonomy rather than reside in nursing homes.

Being Mortal offers a lot of food for thought for Virginia policymakers. As the Commonwealth’s population ages, lawmakers and bureaucrats are likely to face more families asking, “What can we do to avoid the nursing home?” Perhaps it would be in the state’s best interest if the General Assembly provided funding for the state’s medical schools to instruct physicians in “interpretive” medicine for end-of-life conversations with patients. Another option would be to see if any legal or regulatory burdens exist that would prevent the formation of a community such as Athens Village.

John C. Blair, II is an attorney who resides in Albemarle County.