Blue Cross Blue Shield of Massachusetts, The Conversation Project and Ariadne Labs held a summit last week that attracted 58 different organizations and over 500 professionals to the JFK Library.   The issues that brought this broad group together were concerns that not enough people express their health care treatment wishes and select a person to speak for them should they be unable to speak for themselves.

The springboard for the summit was a telephone poll of over 1800 Massachusetts residents conducted by UMass Medical School and SSRS in March 2016 that showed that:

• Less than half of the respondents had completed a health care proxy, designating a person to make health care decisions in the event they are unable to make their own decisions;

• 80% of respondents thought doctors should discuss end of life care issues with patients, but only 15% had actually had such a discussion with their physician; and

• Of respondents who had a serious illness, only 25% had discussed their wishes with their physician.

Demystifying the Health Care Proxy

Many people avoid completing health care proxies because they think they are complex legal documents. The sophisticated medical language that some forms use intimidates people. The coalition that presented this summit is committed to educating the public that a health care proxy is a tool of empowerment that allows people to designate an individual to speak for them.

Proxies as a Passage to Adulthood

One of the goals of this coalition is to normalize the completion of health care proxies by everyone, long before people are likely to have a serious illness. Since accidents and disease can strike at any age, the coalition wants to train young adults to think of a health care proxy as a necessary decision. The summit discussed how to normalize this action, including the possibility of enclosing a health care proxy form in license renewal applications and/or as part of the paperwork associated with high school graduation.

Proxies for those with Alzheimer’s disease

Those with Alzheimer’s disease and their families face different issues. There is a misperception that if someone has not completed a health care proxy prior to a diagnosis of Alzheimer’s, it is too late to do so. In fact, while the law varies from state to state, most states acknowledge that people with dementia retain the ability to make certain decisions. Many who are long into their illness can still clearly identify the people they want to make decisions on their behalf.

Whether young or old, designating a health care proxy who knows your values and wishes for care is the best option for receiving the care you wish. Of course, deciding what kind of care you want, and communicating those decisions to your proxy is a much longer and iterative process, but it cannot begin without designating a proxy. Here is a link to the Honoring Choices  tool kit that explains the steps one should take to designate a proxy along with an easy to use form.