Planning for Medical Care at the End of Life
For millennia the goal of medicine has been to sustain life. During the past century we have made huge strides in prolonging life, and high tech medical care can now sustain human life at extremes that were previously unthinkable (consider Neonatal Intensive Care Units and Mechanical Heart Transplants).
Medical practitioners are trained to extend life, but are generally not trained much about death, even when it is inevitable and close. Doctors are trained to, and are expected to, “do something” to “fight off” death (the enemy) at all costs. Patients and families often don’t think about how they would like to die, and with no plan in place many end up dying with multiple painful interventions prior to death. Atul Gawande describes this escalation of medical care prior to death in a hospital as a modern tragedy. “We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do.”
Well, how would doctors, who perform these lifesaving interventions, choose to die? In a study recently recounted on Radio Lab up to 90% of doctors (given a scenario in which they had irreversible brain damage but not a terminal illness) would decline CPR. More than 80% would decline ventilation, dialysis and chemotherapy and more than 55% would even decline intravenous hydration and antibiotics. Notably, >80% would accept pain medication. The doctors interviewed stressed the importance of quality of life over quantity of life. Some doctors have even tattooed “No CPR” on their chest to alert their coworkers.
In searching for quality over quantity of life there is a growing awareness of and desire for hospice and palliative care. Palliative care is not simply doing nothing and waiting to die, but a philosophy and system of care to help people with a terminal illness have the fullest possible lives right now (focusing on decreasing pain and improving mental capacity). There is also growing evidence, contrary to conventional wisdom, that hospice and palliative care actually improve survival (while decreasing depression and improving quality of life).
Many people who have witnessed the death of a loved one in a modern hospital stress the need for all of us to think about our end of life wishes and to communicate them with our family, friends and the medical system. Written legal documents are important, and will be addressed below, but many people who have been in the extremely difficult position of being a health care agent for a dying loved one say it is the conversation that they had when the person was healthy that helped to guide them when they were dying.
To that end, in 2010, the Pulitzer Prize winning columnist Ellen Goodman and some colleagues started The Conversation Project. This collaboration with the Institute for Healthcare Improvement has a wonderful website that helps you examine your thoughts about dying and a step by step guide to communicating your wishes.
Dr. Susan Block, Co-Director of the Harvard Center for Palliative Care, and an advisor to The Conversation Project, describes her personal experience in having “the conversation” with her dad in the Atul Gawande New Yorker article. Years after they spoke she recalled her father’s words: “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.”
End of Life Medical Care Documents
There are many terms for these types of documents, and some vary state by state depending on laws. In general these documents are called “Advance Directives.” A helpful glossary can be found on the National Hospice and Palliative Care Organization’s website.
A specific type of advance directive that specifically addresses wishes about medical treatments is called a “Living Will.” One of the most important components of an advance directive is the designation of a healthcare agent (also called a Durable Power of Attorney for Healthcare or Health Care Proxy or, in Oregon, a Healthcare Representative). This is the designation of the person who will make decisions regarding your healthcare if you are no longer able.
Important things to know about Advance Directives in general:
- They can always be changed if your wishes change.
- They vary state by state, some states honor other states, but not all do.
- Many people don’t realize that emergency personnel cannot honor advance directives only “Pre-hospital medical care directives” (aka “POLST” orders, see below).
The National Hospice and Palliative Care Organization’s website Caring Connections has an online library with printable PDF copies of all 50 states advance directives.
Advance Directives in Oregon:
- You do not need a lawyer to prepare Oregon’s Advance Directives.
- The directive must be signed by two witnesses (neither being your physician nor health care representatives).
- The people you choose as your health care representatives must consent and sign the advance directive before it becomes legal.
Oregon has an electronic pre-hospital medical directive registry by which you can inform emergency personnel of your end of life wishes. Known as a POLST form (which stands for Physician Orders for Life-Sustaining Treatment) this order (which is only active if signed by a physician, nurse practitioner or physician assistant) is a complement to not a replacement for advance directives.
GreenField Health encourages all of our members to think about these difficult issues before they are pressing. If you already have an advance directive and/or a POLST please bring a copy with you to your next visit so we can file them in your GreenField electronic record. It is not uncommon for Emergency Rooms to call primary care offices searching for advance directives in cases where family cannot be located, and if we have them on file we can forward them to the ER.
If you don’t have advance directives, you might want to check out the CDC’s resources, the Prepare for Your Care website or The Conversation Project’s “How to talk to your doctor” page and then discuss your thoughts and concerns with your GreenField clinician.