Advanced Care Planning: Honoring Patient Priorities and Values

Submitted by: Amanda Brownell, MSW, LCSW

 

 

“It was helpful to us because what I thought was totally different from what he thought, so I needed to hear his thoughts and his wishes and that’s important. And doing it now, not if we are down to a crunch where we have those decisions to make and not with our kids giving any influence. This is not for our kids, this is for us” (Vital Decisions Client, Anonymous 2018).

 

 

In many ways, Jane is living an average day in the life of an aging American.  She and her husband are recognizing that their day to day is getting more difficult.  They notice their children are becoming more concerned about their well-being.  They, like some, are grappling with, “How will my final year, months, days look?” Questions they ponder are, “Will I die at home? Who will care for me? How much do I want to rely on my children? When will living longer seem less important that the quality of the time I have left?

However, unlike the majority of Americans, Jane has taken time to think through her wishes with her husband. She has had the difficult conversations that involve what those shift points may look like.  She has undergone a process to examine who she is, what she values and how those may shape what she wants her last months, weeks, and finally days to look like for her and her family.

Jane has engaged in a program with Vital Decisions, an organization that works with people with advanced illness, like Jane, to align who they are, have always been, and what truly matters to them with their end of life healthcare choices.  Through a 5 step process with a trained professional, Jane has sat in the comfort of her own home and discussed her and her husband’s preferences.  She has taken steps to document those wishes in order to inform her loved ones and doctors.  Lastly, she has developed a clear decision making process to implement as her and her husband’s health and preferences may shift over time.

Recent research that looked at data from 795,000 Americans found just 29 percent had completed a living will that contained end of life care wishes, and only 33 percent had designated a health care power of attorney. (Preidt, R. (2017, July 7). 2 out of 3 Americans Don’t Have ‘Advance Directive for End of Life’. Retrieved from https://health.usnews.com/health-care/articles/2017-07-07/2-of-3-americans-dont-have-advance-directive-for-end-of-life).  What makes this so concerning is that, while almost half of adults 60 and older have to make treatment decisions in the final days of life, 70% of people in this situation lack decision making capacity—so someone else has to make the decision for them  (Silveira, M.J., Kim, S.Y.H., & Langa, K.M., (2010). Advance directives and outcomes of surrogate decision making before death. NEJM, 362, 1211-1218). End of life decisions made by families and physicians will shape the last memories and final moments of their lives; when those decisions have been discussed in advance, the care they receive is much more likely to reflect their own preferences.

With organizations like Vital Decisions we can begin to change the narrative, so that families across the country will no longer question those final moments and individuals can be confident that who they are will be honored to the very end.

 

 

Vital Decisions specializes in Advance Care Planning Behavioral Science, working closely with individuals and families to ensure each patient’s priorities and values are understood and honored. Their programs integrate technology, interpersonal and family interventions, resulting in a more collaborative decision-making process that better reflects an individual’s priorities and preferences.

For more information on Vital Decisions, please visit www.VitalDecisions.net.