Communicating End-of-Life decisions

My 87-year-old mother and I have had many chats over the past 15 years to plan for end-of-life. As you can imagine, the content of these chats have evolved over the years. Now she’s quite certain about what she wants from her life at this stage. Now that she’s so clear and she’s worked with her lawyer and doctors to complete an Advanced Directives and Medical Power of Attorney, we wonder how this information gets communicated at key moments. So let’s look at end-of-life decisions and information sharing as part of this series about Caregivers and Health Information Technology (HIT). This topic touches on several of the 18 needs of people at the center of care presented previously:

  1. Control of their life
  2. Common goals for the health journey developed with the person at the center, known by the entire health team
  3. Plans to attain those goals
  4. The same information in the hands of the entire team including the people at the center that they can understand
How do people at the center of care make decisions when they approach the end-of-life?  Some people focus on Advanced Directives, Do Not Resuscitate, Health Care Proxies. Another document is Practitioner Orders for Life-Sustaining Treatment (POLST), called MOLST (Medical Orders for Life-Sustaining Treatment) in some states.
From Wikipedia: Unlike advance directives, a POLST summarizes the patients’ wishes in the form of physician orders for end-of-life care.[3] POLST provides explicit guidance to health professionals under predictable future circumstances.[1] POLST can build on an advance directive but can also function in the absence of an advance directive. If the individual lacks capacity, a surrogate can engage in the conversation and the consent process that forms the basis of the POLST process. The challenges that patients, families and their healthcare professionals face at the end of life can be daunting. Caring and sensitive communication can elicit patients’ wishes which can then be documented in an advance directive. To put these preferences into actionable orders requires an additional tool, the POLST form. Healthcare professionals and their organizations can overcome the myriad barriers to communication across systems of care by developing a POLST program, creating a method that respects some of the most deeply held values of patients.[7]
In Massachusetts where I live you can find POLST here.  In California, where my mom lives it’s here. A map with state-by-state links is here.
Once decisions are made, communication can be tricky. Will the decisions be available at the point of care when the decisions are important? Some people’s documents are in one medical record, some in many. Some people send the documents to their children or their proxies. Some people tell everyone they can think of and give them copies of the documents. My mom and I were advised to tape the documents to the refrigerator or inside of the front door so the EMT’s would see them.
My Health Care Wishes is an app from the American Bar Association to manage and store your Advanced Care Plan documents including Advanced Directives, DNR orders, POLST, and Anatomical Gift.
Making decisions is necessary, but not sufficient. They must be communicated.  What experience have you had with this challenge?

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