Did you know that a new Medicare benefit lets you have a paid session with your physician to discuss plans for your care in the future?
In 2014, the Institute of Medicine published “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” The report found that as a society we need to do more to improve end-of-life care. The goal, according to the IOM, is “delivery of person-centered, family-centered end-of-life care.” Foremost in making that happen is improving communications between healthcare providers and patients.
Advance Care Planning Isn’t Fun — Get Over It
Such conversations are part of advance care planning, a process of reflecting on what medical care you would want in the event of a terminal illness or irreversible health condition where you are unable to reason or communicate. These conversations include talking about your values, describing what kind of end-of-life care you envision, choosing a surrogate decision maker and completing advance directive documents to provide direction to your proxy and healthcare professionals. Not light discussions, but certainly essential ones.
During my 15 years as a professor and clinical ethicist focusing on bioethical issues at the end of life, I have seen most families find such documents and conversations to be a gift, since they allow them to make a decision that supports the wishes of their loved one. Studies show that people who have these conversations are more likely to have their wishes honored, more likely to choose less aggressive and less expensive care and, most important, their families have an easier grieving process.
Only one in four of all adults have completed an advance directive document. Those who have tend to be more educated, of higher socioeconomic status, older and white. One goal of the new benefit is to help reduce such disparities. Of those who have completed advance directives, 31% have given a copy of the document to a healthcare provider, but only 18% have talked to the provider about their future care wishes.
“Studies show that people who have these conversations are more likely to have their wishes honored, more likely to choose less aggressive and less expensive care and, most important, their families have an easier grieving process.”
Medicare Makes It Possible for All
As of January, Medicare will pay for patients to have these conversations with their doctors and nurse practitioners. Some other health insurance plans, such as Blue Cross & Blue Shield of Massachusetts, will also be offering the benefit, and others are likely to follow. While patients have always been able to discuss these issues with a provider, now that person can be paid for her or his time.
This benefit was part of an early draft of the Affordable Care Act, but it was removed after Sarah Palin named it “death panels” on Facebook. Despite Palin’s claims, the conversations are voluntary and the government is not deciding who lives and dies. In fact, these conversations are often as much about stating what treatment you want as about what you do not want. In a study I published in the Journal of Clinical Ethics, I found that one-quarter to one-third of people request that aggressive measures be made to support their bodies at the end-of-life. What we choose depends on our age, as people over the age of 50 are more likely to refuse all life-sustaining treatments than those under 50.
Plan Your Doctor’s Visit: Visit These Sites
Before visiting with your healthcare provider, you should consider what your end-of-life choices are. Think about CPR, ventilators, feeding tubes, permanent vegetative states, brain death, pain control and who you want to make decisions for you when you are no longer capable of making your own. If you know who you want to be your surrogate decision-maker, bring him or her with you to the provider’s office for the discussion.
Websites such as the theconversationproject.org and texaslivingwill.org provide information for thinking about these issues. The National Hospice and Palliative Care Organization offers online advance directives specific to each state.
If you change your mind, you can change your documents or delete them at any time. Advance care planning is a process that you should revisit during life milestones — marriage, divorce, death of a loved one — and at least every five years. Make sure you give copies of the material to everyone who might need it, including proxy, physicians and family.
The documents are important, but the conversation is critical to your future well-being. If you have not completed advance care planning conversations or documents, or have not talked to your provider about your future medical care wishes, make an appointment to do so. If your insurance does not offer this benefit, contact them to request that they add it.
Craig Klugman, Ph.D. is a professor of bioethics and Chair of the Department of Health Sciences at DePaul University. He serves on the ethics committee at Northwestern Memorial Hospital, is the blog editor for bioethics.net, and is a fellow of the Public Voices project.