Experts ask, ‘Who’s Your Person? What’s Your Plan?’ during National Hospice and Palliative Care Month
By Teresa Fama, MD, Jonna Goulding, MD, and Jewelene Griffin, RN.
We do a lot of planning in life. We plan where we’ll live, go to school, go to work and retire.
Few of us plan how we wish to be cared for in the event of a health crisis or at the end of our lives.
A 2013 national survey by The Conversation Project found that while 90 percent of people surveyed said talking with loved ones about end-of-life care is important, only 27 percent had actually done so.
The Vermont Ethics Network, led by Executive Director Cindy Bruzzese, is working to change that by encouraging Vermonters to start conversations about planning health care decisions. The discussions might start by first talking with loved ones about how you’d wish to be cared for if you were unable to verbalize those wishes yourself.
Though these might be challenging conversations, they can inspire greater control over the health care you receive when you are nearing death. They can also remove the burden of decision making in a crisis from your family and loved ones.
Vermont Ethics Network’s “Who’s Your Person? What’s Your Plan?” initiative encourages families to take three steps in spelling out emergency or end-of-life health care wishes:
- Determine “Who’s your person?” If you’re 18 or older, complete an advance directive, a legal document that determines who’s authorized to make medical decisions on your behalf if you’re unable to communicate those wishes yourself. The advance directive identifies your health care agent, also known as a health care proxy or power of attorney for health care;
- Determine “What’s your plan?” Adults with chronic illnesses, or those seeking to provide more specific information about their values and health care preferences, can take this step to complete an advance directive with detailed information about health care goals, treatment priorities and preferences. This document provides guidance for your family, friends and health care providers in times of critical illness or serious injury. It answers the questions you may be unable to;
- Determine “Are there limits?” Individuals who are seriously ill or dying, or who are certain they would not want life-prolonging interventions, should consider talking with their provider(s) about medical orders to limit the use of aggressive, life-sustaining treatments when nearing death. These wishes can also be included in an advance directive or living will.
Once completed, your wishes can be shared with the Vermont Advance Directive Registry (VADR), a secure database that stores an electronic copy of your directive. This makes it discoverable by any hospital or provider treating you in an emergency. Learn more here.
Questions to begin framing the advance directive conversation might include:
- What do you value most about life — living a long, active life, enjoying the company of family and friends?
- Has a loved one’s illness, medical treatment or loss influenced your feelings about death and dying?
- Do you believe life should always be preserved for as long as possible? If not, what kinds of mental or physical conditions would make you think life-prolonging treatment should no longer be used — a lack of unawareness of life and surroundings, an inability to appreciate and continue important relationships, severe pain or discomfort?
- What beliefs or values do you hold that should be considered by those making medical care decisions for you?
We recognize these aren’t easy questions to answer and points none of us really wants to think about. But starting conversations and taking steps to spell out your wishes while you’re healthy can relieve those closest to you of making decisions in times of crisis. Advance care planning ensures your wishes are followed, even if you’re unable to voice them yourself.
To learn more, visit the Vermont Ethics Network at www.vtethicsnetwork.org.
Editor’s note: Teresa Fama, M.D., is medical director of Specialty Care and Rheumatology at The University of Vermont Health Network - Central Vermont Medical Center (CVMC). Jonna Goulding, M.D., is CVMC’s director of Palliative and Spiritual Care. Jewelene Griffin, R.N., leads the Hospice and Palliative Care program at Central Vermont Home Health & Hospice in Berlin.
