Originally published in the July 20th edition of the Union Leader, Dr. Burstein was kind enough to give Central New Hampshire VNA & Hospice permission to reprint the following article.
My father died when he was 53 years old, nine days after becoming suddenly ill. That was 32 years ago, and the experience still haunts me. As a physician, I felt helpless in the face of a mysterious illness that was out of control, and I did not anticipate the events that subsequently led to his tragic demise. For months afterward, I questioned myself and the decisions our family made on his behalf as he slipped away from us; mostly I regret not having had the chance to talk with him more about the important things that matter between a father and a son. I learned that it is never too early to share feelings with loved ones and to plan for how we will care for each other when we rely on others to protect us, to assure the best care, and to protect us from needless suffering. Most people lose the ability to speak on their own behalf at some point during their life. Whereas 90 percent of people feel it is important to talk with their doctor about the kind of care they would want at the end of life, fewer than 10 percent actually have this conversation. While making health care decisions can be difficult in the best of circumstances, making decisions for others is more complicated.
Most people believe that their doctors and their family know what kind of care they would want, but studies show that doctors and family members are often uninformed and experience distress when decisions are needed. This distress can last for many months after the death of a loved one and is completely preventable with skilled advance care planning.
Advance care planning is simply planning in advance for the kind of care you would want. When done well, it gives you control over the kind of care you would receive and should be based on what matters most to you. Advance care planning can result in your creating an advance directive, in which you name an “agent” to speak for you if you cannot speak for yourself. It also allows you to document the types of health care you do and do not want, particularly if you experience what you consider to be a bad health outcome. The simple act of creating an advance directive can turn out to be an incredible gift for loved ones in the event of an accident or severe illness.
Despite recent gains in public awareness of the need for advance care planning, only 37 percent of New Hampshire residents have an advance directive. Even amongst those with an advance directive, there is no guarantee that decisions are known or that they will be honored. Advance directives are only as good as the process of advance care planning, and are best done when you understand your choices, reflect on lessons learned from life experiences, and discuss with your health care agent what in life matters most to you.
Advance care planning is also only as good as a system that promotes good conversations, and that ultimately honors decisions that are well informed and based on personal goals and values. Even with the best of intentions, good doctors do not take the time needed to have these conversations with their patients. Simply filling out an advance directive form is inadequate and ineffective without a good conversation, which can be done by physicians, nurses, social workers, chaplains or even volunteers who are trained in the skills of advance care planning. Medicare is now recognizing the value of a good conversation and has taken steps in the direction of promoting this important work. We have an obligation to make sure that these conversations are done well and that we honor our patient decisions.
Honoring Care Decisions, a new program at Dartmouth-Hitchcock, is working with a team of physicians, nurses, social workers, chaplains, volunteers and community groups to improve this process. I encourage everyone to find someone who is willing and able to speak on your behalf for the time when you won’t be able to; it will happen, so please take the time to plan in advance. To start the conversation, check out http://theconversationproject.org/ or https://www.prepareforyourcare.org/ or play the conversation game http://mygiftofgrace.com/.
Discuss what matters most to you with someone you trust, and share how you would want to be treated based on your own personal goals and values. It may be one of the most rewarding experiences you have; if not for yourself, do it for your loved ones.
Dr. Sanders Burstein is medical director of Dartmouth-Hitchcock Nashua and medical director of D-H’s Honoring Care Decisions initiative.