Advance Care Planning: Letting Others Know Your Wishes
Advance care planning isn’t just for people at the end of life; it’s something you need to do even if you’re healthySusan Berg, MS, LGC
“Advance care planning is something that all adults over age 18 should be doing in case you become unable to make your own decisions due to a sudden unexpected accident or illness," says Susan Berg, MS, LGC, program director for D-H's Center for Shared Decision Making, which is celebrating 20 years of providing information and counseling to help patients make health care decisions. "Advance care planning isn’t just for people at the end of life; it’s something you need to do even if you’re healthy,” she says.
One of the most important aspects of advance care planning is selecting a health care agent who can speak on your behalf and make health care decisions for you, if necessary. This is especially important in New Hampshire because the state’s surrogacy law will select someone to make decisions for you if you have not completed an advance directive and named a health care agent.
“Even if the state selects the person you would have chosen, the law only gives that person authority to make decisions for up to 90 days,” says Berg. “After that, they have to go to court to become your legal guardian. So, that’s another burden that you would be putting on your loved ones if you don’t have an advance directive.”
Berg says it’s important to tell your health care agent that you have named them and to discuss your wishes with them. “It’s essential that they are aware and have agreed to be your agent. Your agent needs to be someone who knows you well and would be able to make decisions for you based on what you would want, not what they would want for themselves,” she says. “These are deep conversations about how you like to live and when does quality of life become more important to you than prolonging life. So, it’s not necessarily going to be a one-time conversation.”
Berg notes, however, that you do not need to include in your advance directive a plan for every potential accident or illness scenario. “You can’t say as a healthy 60-year-old how you would feel if you had COPD (chronic obstructive pulmonary disease), for example,” she says. “You can’t plan for everything and that shouldn’t be a stumbling block for completing an advance directive. The New Hampshire advance directive has two sections. The first asks you to name a health care agent and the Living Will section allows you to consider what life prolonging treatments you would want if you are near death or permanently unconscious.”
Advance Care Planning is an ongoing process since your preferences may change as your health and circumstances change. It is important to revisit your advance directive to make sure it still reflects your wishes. At a minimum, review it whenever any of the “Five Ds” occur: decade, death of a loved one, divorce (or marriage), a new diagnosis or a decline in health. When health declines, more specific advance care planning conversations with your care team addressing your preferences for care related to expected complications can lead to documentation about the level of care you would want. Amelia Cullinan, MD, a Palliative Care physician and medical consultant to Honoring Care Decisions, and her colleagues offer training for care teams in engaging patients in serious illness goals of care conversations.
In addition to the Advance Care Planning Honoring Care Decisions program, D-H’s Center for Shared Decision Making offers the following services:
Decision Support Counseling: D-H health coaches meet with patients who need help thinking through any medical decision, from a hip replacement to cancer surgery.
Patient Support Corps: Trained volunteers help patients prepare for medical appointments by brainstorming questions and concerns. Volunteers may also go with patients to medical appointments to take notes and, with permission, make audio recordings for patients to read or listen to later.
Decision Aids: The center helps clinicians identify patient decision aids and web-based tools for their patients. These “point of care” tools are used during patient visits to support a shared decision making conversation.
Chronic Disease Self-Management Program: D-H health coaches and peer facilitators lead small group, highly interactive workshops. The workshops meet for two-and-a-half hours, once a week, for six weeks. They are designed to help participants gain self-confidence in their ability to control their symptoms and learn how their health problems affect their life. Groups are offered throughout D-H facilities and in surrounding communities. Learn more about the self-management programs we offer here.
Learn more about services offered by the Center for Shared Decision Making here and about Honoring Care Decisions’ Advance Care Planning services here. Or call 603-650-5578 for appointments in Lebanon or 800-730-7577 for appointments in Concord, Manchester and Nashua areas.