They are among the questions not many of us want to think about: What would happen if I were too sick to make my own health care decisions? Who would make them for me? Would I want to be on life support? What about hospice care?
Recent high-profile stories, such as the tragic case of a brain-dead pregnant woman in Texas, have put the issue of end-of-life care in the spotlight. Many people may be thinking about what they would want for themselves and their families if they were in similar situations. While the Texas case was a rare example in which state law played a role in treatment, the majority of times, people’s personal wishes are carried out.
Our recent study found that a record number of older adults are officially putting their end-of-life care preferences in writing. In 2010, 72 percent had completed living wills, up from 47 percent in 2000.
Some health care stakeholders have encouraged physicians to broach the topic of a living will (known as an advanced directive) at regular physician visits. Depending on your age, lifestyle and personal preference, this may indeed be something you should do. Your physician is certainly an excellent resource.
The doctor’s office, however, may not be the right place for everyone to have this conversation. Depending on cultural backgrounds, family dynamics and other circumstances, some people may choose to keep this discussion between them and their families. However, I recommend that everyone have “the talk” with either their family and/or their doctor at some point, especially if they suffer from a serious illness, chronic condition, or are simply getting older. I also encourage people to document their preferences in writing to provide their families with added legal protection.
If you are thinking about planning for end of life care, consider:
1. It’s never too early or late to talk to your family about future health care and your preferences.
2. An advance directive is one way to plan ahead. A living will is a popular type of advance directive that leaves instructions for treatment and health care preferences in the case that you do not have the capacity to make those decisions yourself. This may include whether or not you’d want to be resuscitated or receive life support depending on the circumstance.
3. You may appoint a health care surrogate who would make treatment decisions on your behalf.
4. Appointing a surrogate and talking with that surrogate about your preferences is most important, especially if you are not married and don’t have kids or if you have a large family and it would be hard for physicians to figure out who your preferred surrogate decision maker would be.
5. People are often encouraged to complete both a living will and appoint a surrogate. There are some easily available ‘combined directives’ online; e.g. Five Wishes (Who your surrogate would be, the kind of medical treatment you want or don’t want, how comfortable you want to be, how you want people to treat you and what you’d want loved ones to know) and the digital MyDirectives platform.
6. Our study found that of people who only filled out one of the forms, more chose to appoint a surrogate without specifying end of life care. Many people may find it easier and less emotional to identify the person they trust to make these types of medical decisions versus deciding whether they want CPR or life support. Treatment decisions can be difficult because they are often rife with “what-ifs,” and depend on unforeseeable factors such as how sick the person is, whether his or her brain is working and chances of recovery.
7. Formal paperwork can be completed for free without an attorney at websites such as www.caringinfo.org
Take the next step:
- Learn about palliative care at the U-M Health System and the U-M Geriatrics Center and Institute of Gerontology
- Read about Dr. Silveira’s recent research on advance directives
- See this Detroit Free Press article “Matters of life and death: Making decisions now will help loved ones in future” that includes an interview with Dr. Silveira
Maria J. Silveira M.D. M.A. MP.H. is a palliative care doctor and researcher specializing in advance care planning. She is with the Veterans Affairs Ann Arbor Healthcare System and assistant professor in the Department of Internal Medicine at the U-M Medical School.
Founded in 2011, the U-M Institute for Healthcare Policy & Innovation includes more than 400 health services researchers from across the University of Michigan and several nonprofit and private sector partners. IHPI’s members form one of the nation’s largest communities of physicians, health scientists and policy analysts dedicated to studying how health care works and how it can be improved.