By Stephanie Anderson and Carole Montgomery
A deep divide exists in the American health care system between patients’ values and the care they receive.
Let’s start with a story – Marcus was in his mid-40’s when he underwent high-risk heart surgery during which he suffered a brain injury. Afterward, the surgeons at first reassured his family that the surgery itself was successful (his heart was working fine) in spite of his brain injury.
Unfortunately, after many days in the ICU he remained unconscious and was not able to get off the ventilator. Specialists told the family that his brain injury was severe, and he would likely not be able to carry on a meaningful conversation or live independently ever again.
The “paperwork” Marcus had filled out a year ago named his father as his “decision maker” – but they’d never talked about any of this before, so his dad didn’t know what Marcus would think about all of this – and fiercely wanted his son to live – no matter what.
Sadly, his brother was firmly convinced that Marcus would never want to live (or be “kept alive”) in this condition – and became so angry with their father that he left the hospital and wouldn’t return – a family fractured. After several weeks in the ICU, the clinicians were deeply upset and conflicted, wondering if they were really doing what Marcus would have wanted.
Marcus’ story highlights this problem: If patients have not clearly defined their values, beliefs, and preferences about healthcare decisions, there will be uncertainty as to how to care for them. This uncertainty may be so intense that it causes suffering – suffering for families and loved ones, who are tormented by their decisions; suffering for the clinicians caring for them, contributing to burnout; and, most importantly, suffering for patients, who may receive care that goes against their core values.
The COVID-19 pandemic has made these problems real for many people. The fragility of health and the knowledge we are not invincible – that any one of us can suddenly become unable to participate in our own healthcare decisions – has risen to the forefront of everyday consciousness.
Instead of feeling powerless amid that uncertainty, many people are realizing the importance of taking control where they can. One way is by identifying who they want making their medical decisions if needed and making sure that person knows what matters most for those decisions.
The issue of advance care planning typically shows up in healthcare settings; this has led to a “medicalized model” where advance care planning is the job of healthcare. But at its core, the problem we’re trying to solve is about a shared human experience: what matters most to us when our health – our very life – hangs in the balance. Normalizing conversations about that topic needs to happen where we live, worship, learn, work, grow old, and seek care.
This shift in thinking opens a paradigm where the solution is owned across all sectors. Some of the most successful programs Respecting Choices, our internationally recognized, evidence-based system for person-centered decision making, has helped develop were a partnership between community-based, faith-based and healthcare organizations – elevating a holistic approach to address individuals’ mental, spiritual, social, and emotional priorities when making healthcare decisions.
This is not a one-solution problem. Education alone is not enough. Increasing the number of individuals with completed documents is not enough. We need a defined communication process and re-designed system to support it. The system must include access to quality conversations, accurate transfer of information so the content of the conversation lives on across time and location, and preparation of the healthcare team to respect the difference between all of what can be done in modern medicine and what should be done based on what matters most to the person.
Fundamental systemic change in our country is essential and cannot wait.
To learn more about this topic and its policy implications, watch the recording of Advance Care Planning in the Age of COVID: Lessons Learned and Policy Implications, a Petrie-Flom webinar held on July 8th, 2020.