How Should We Approach End-of-life Care?

By | October 23, 2018

I was recently asked by Gist Healthcare to weigh-in on end-of-life care and how we as a society should approach it and what needs to change. You can read the full interview conducted with Gist Healthcare writer Chas Roades here. But today, I am going to summarize some of my thoughts on why Advance Care Planning needs to be discussed regularly and at every level of service.

How do we approach end-of-life care, what needs to change and what models should we follow?

We need to start from the premise that we should not wait until the end of life before having the discussion. Having such conversations during times of good health versus illness is important. We also need to include the entire community in the dialogue. The topic should be addressed not just in PCPs’ offices, but also in churches, temples, mosques and anywhere else where communal conversations about personal issues take place. And the discussion should be coordinated across the community. For example, in 2011 Sentara Healthcare collaborated with Bon Secours, Chesapeake Regional and Riverside Regional to form the Advance Care Planning Coalition of Virginia.  Other partners included Area Agencies on Aging and Eastern Virginia Medical School (EVMS). This has expanded into a state-wide Coalition. The California Coalition for Compassionate Care was the inspiration for building the Virginia program.  We are a long way behind California, but in time we believe we can get there.

Advance Care Planning (ACP) discussions and the incorporation of end-of-life wishes into care plans must happen at every level of service and be discussed on a regular basis. ACP should never be targeted just to those with a limited life expectancy.  Expanding the location and settings where these conversations occur and broadening the range of caregivers who can engage in such discussions will help create the space needed to overcome the present stigma associated with the issue. The role of ambulatory palliative care is crucial within this context.

Long term, we need to include developing communication skills into our medical school curricula. We teach individuals how to be good doctors, but we never teach them how to be good communicators. Redefining success is also required. Since physicians are trained to diagnose and treat in order to prevent death, having conversations concerning end-of-life matters is counter-intuitive to our core function. Success should be defined as enhancing “life” for those we serve, which includes conversations around death as a natural part of the life-cycle. We must balance the instinct to treat and provide care with the desires of those we serve. If we adjust our perspective, the joy of service will return and enhanced shared decision-making can take place.

End-of-life care should be a national conversation, but who should be having this conversation?

This needs to be a participatory conversation, not a topic for just thought leaders to “teach us” about. How do we make it acceptable and “cool” to talk about such issues? A pivotal point for me was when I read When Breath Becomes Air by Paul Kalinithi. Dr. Kalinithi made a statement “that doctors need hope too”. This hit me right between the eyes and caused me to really think through why physicians might struggle with such conversations. For me, I have redefined success as delivering treatment in a manner desired by those I serve, thus filling my “hope bucket”. We should all remember that to maintain balanced and healthy relations, we must focus on the needs and desires of others while simultaneously fulfilling our needs.