Part of the Living to the End of Life Special Report
(Editor’s note: This content is provided by The John A. Hartford Foundation, a Next Avenue funder.)
Health care is deeply personal — especially as we age and face serious illness. Although it may not feel like the easiest conversation to have with our loved ones, it’s critically important to think through and discuss the kind of care we want if we become incapacitated and unable to speak for ourselves. What will we want our doctors and nurses to know? How will we define what matters most?
Those are vital questions, and in fact they’re part of conversations that should start as early our 20s or 30s. That’s what we heard from clinicians and patients in a series of focus groups to inform our 2016 report, Conversation Starters: Research Insights from Clinicians and Patients on Conversations about End-of-Life Care and Wishes. Through this research, we also found that many early advance care planning conversations are happening with people’s lawyers and financial planners rather than with their health care providers.
Clear Advance Directives
This raised an interesting question about the development of advance directives — those legal documents that explain how you want medical decisions to be made when you’re too ill to speak for yourself. We know that there are many barriers to the use of advance directives by health care providers (clinicians). How could we make sure these directives are written in a way that is truly helpful? How could we make sure that clinicians carrying out directives can do so easily and reliably?
This is where our new resource, Advance Directives: Counseling Guide for Lawyers, comes in. Through a grant provided by The John A. Hartford Foundation, a multidisciplinary group of experts convened by the American Bar Association Commission on Law and Aging came together with the American Academy of Hospice and Palliative Medicine to create this tool kit with a simple goal: help attorneys draft very clear advance directives for their clients that will be readily understood and used by clinicians.
The tool kit contains a list of helpful resources and an advance care planning checklist for lawyers. The checklist provides guidance to inform every step of the process, from assembling the most helpful documents for the first client meeting to assisting clients in identifying the right health care proxy (a health care power of attorney) or what to do if no one is available to serve as their proxy. The tool kit contains all of the important ingredients to ensure that attorneys and health care teams are working together to carry out the wishes of a patient.
Receive the Care You Want
We still have a ways to go in getting more of those early advance care planning conversations started. In the same way that conversations about organ donation are becoming more and more routine, we’re hopeful that momentum will build for advance care planning. A research analysis conducted in 2016 found that only one in three Americans currently have some sort of advance directive. Similarly, only 27 percent of people surveyed by our grantee, The Conversation Project, reported having conversations with loved ones about their end-of-life wishes. The good news is that 90 percent of those respondents agreed that having these talks is important.
And they are important! Having conversations and documenting our wishes means more of us will receive the kind of care we want — care that is in sync with our personal goals and values and care that means we can live better than ever before, even at the end of life.
If you already have an advance directive in place, fantastic! If you haven’t yet started that important conversation, don’t despair. Schedule that meeting with your attorney, and be sure to share the new tool kit with him or her prior to your first meeting. By taking steps now to foster better communication between your legal representative and your health care team, you’ll be well on your way to ensuring that your health care responds to what matters most to you, when it matters most.
Next Avenue Editors Also Recommend:
- What Matters? Don’t Let Health Care Get in the Way
- The End-of-Life Care That Veterans Need
- 5 Life Lessons From End-of-Life Experts
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