I’ve had a few near-death experiences in my lifetime, including a jet ski accident and a slippery car crash on black ice. After each incident, I was able to walk away relatively unscathed, always thankful for another chance at life. All the while, however, I never really considered what would have happened if I technically “pulled through” but remained seriously ill or in critical condition.
Would my family know my preferences around being put on life support, if I can’t breathe on my own? Would they understand my views on dying in general?
It wasn’t until working on Emmi’s upcoming multimedia program “Choosing a Healthcare Proxy” that I was able to fully grasp why healthcare proxies (also called healthcare representatives/agents) are so necessary. In a situation where a person is too injured, sick or weak to indicate how they want to be cared for in an emergency, proxies can speak up for you when you can’t communicate much yourself. And your proxy can be a friend, neighbor, family member etc. - what really matters is that they will carry out your medical wishes and discuss your values with your doctors when/if the time comes. For me, had those previous accidents been more critical, I could have been at risk for being really hurt and no one having any idea of the medical treatments I did or didn’t want, since I did not have a proxy in place and had no specific documentation for my wishes.
Fortunately, there are experts across the country doing everything they can to educate and inform the greater public about the importance of choosing a healthcare proxy and including it with an advance directive (the physical document that lists all of your healthcare wishes). I spoke with Dr. Sanders Burstein, senior physician advisor for Honoring Care Decisions and an Emmi medical advisor, who has these conversations every day, to get his perspective. Here’s what he shared:
Today, what do you think are the biggest barriers that prohibit people from putting healthcare proxies in place for themselves? What risks are people taking by not getting a proxy in place?
Dr. Burstein: When asked, most people agree that it is a good idea to have an advance directive, but most do not have one, most often citing the following:
- I haven’t gotten around to it
- I need more info to get started
- I don’t know where to get one
- I haven’t figured out what type of care I want
It’s understandable that people don’t have a sense of urgency about this topic, since we are asking them to think about something that is unexpected – a sudden event that could leave you unable to speak for yourself. People think that completing an advance directive is something done only at the end of life. Actually, I would like to separate the issues related to end of life from the importance of advance care planning.
Patients have the right to make health care decisions – to choose or refuse care. The best decisions are made when people are clear about the things they value most in life and when they understand and appreciate how the benefits and risks/burdens of choices would best achieve their personal goals.
Most people will lose the ability to speak for themselves due to a health condition during their life, not just at the end of life, so the process of making decisions based on goals and values will fall to someone else – a health care agent or proxy. If you have not identified your health care agent with an advance directive, some state laws specify who will make your decisions and other states would require a court order. If you have named your agent with an advance directive but have not discussed your goals and values with your agent, they will experience distress not knowing how to make the best decision for you or they may make a decision that is different than one you would make for yourself.
Do you see any generational differences in your patient populations when discussing healthcare proxies? For example, do you change how you approach the conversation depending on if it’s a younger adult, an elderly person or someone very ill? What factors do you consider before having this talk?
Dr. Burstein: The differences I observe are more related to a person’s own beliefs about their health status rather than their age. Healthy people don’t expect to lose the ability to make decisions, so they often don’t take the time to think about this issue. People with chronic illness are hopeful that they will beat their illness and don’t take the time to plan for complications that are predictable. A sudden event like a car accident is unexpected but could happen to anyone; a complication of a known chronic disease is not unexpected; we may hope for the best, but we should plan for the worst. When I help facilitate the discussion around advance care planning, I start with exploring people’s understanding of the role of the health care agent and their understanding of their health status. I ask them to reflect on lessons learned from their experiences with illness and to discuss what matters most to them. We explore fears and concerns and unacceptable outcomes. The conversation is best when it promotes an ongoing dialogue between the person and their health care agent.
In thinking about the Emmi “Choosing a Healthcare Proxy” program, what do you think is the benefit of using multimedia and online technology to get this universal message out there?
Dr. Burstein: People are in different stages of “readiness to act” when it comes to advance care planning. Emmi provides an option for people who want to do it on their own terms (time and place) or who are not ready to meet in person with a facilitator. The Emmi program flows very nicely in a very non-threatening manner. All of the strategies that engage people, to move them from contemplation to action help support this important message: planning in advance helps you maintain control over the kind of care you will receive and is a gift to those you love.
Emmi will be releasing a new program, “Choosing a Healthcare Proxy,” in late 2017 to help guide patients on selecting representatives for themselves.
Dr. Sanders Burstein is senior physician advisor for Honoring Care Decisions, a program to promote and improve advance care planning at Dartmouth-Hitchcock and local communities in NH. He is an independent contractor for Respecting Choices (R) and medical advisor with Emmi. Board certified in Family Medicine and Geriatrics, he recently retired from clinical practice, but continues his work in promoting shared decision making and advance care planning.