Dr Jessica Zitter authored an important opinion piece published in the June 30th NY Times. Entitled: The Lifelong Mistreatment of Black Patients she delves into this uncomfortable and important topic by describing her patient with end stage lung disease, who was now ventilator dependent. He and his family were facing a heartbreaking decision: proceed to tracheostomy and live the rest of his life on a ventilator, or shift to comfort focused care, remove the breathing tube and allow a natural death.
2 terrible options.
The thrust of her piece centered around how historical (and likely continuing) disparities of care experienced by people of color can impact decision-making when nearing end of life. She makes the point that to better serve our patients, providers need to understand these realities and accept that it is our responsibility to be better partners with our patients.
Apropos to my blog is an observation that deserves more attention than she could give in such a short piece. Dr Zitter writes that “although African Americans are deprived of proper treatment for much of their lives, at the end they suffer from too much of it. They are more likely than white people to die attached to machines, their deaths stretched out, their suffering prolonged”.
Yet…
While many providers feel that dying ‘attached to machines’ (i.e., burdensome aggressive treatments that have little chance to change the disease trajectory) necessarily equates with prolonged suffering, is that truly the case?
who gets to decide what is suffering?
I wonder if it’s because providers see through the privileged lens of those lucky enough to have had life-long access to (hopefully) high quality health care that makes us equate what we interpret as too much care (ex. the patient dying on a ventilator after a prolonged ICU stay, or a patient with metastatic cancer trying toxic 5th line chemotherapy with little chance for improvement) with suffering at end of life.
For those of us with easy access to health care for much of our lives, it may be easier to shift away from continued aggressive treatments towards comfort focused care when nearing end of life because we know that we had ample opportunity for good quality care throughout our lives. We have the piece-of-mind that comes from believing that everything has been done, and it’s now the end of the line.
But for those who have spent their lives with limited/poor access to care (either due to socioeconomic issues, our dysfunctional US healthcare system, institutional racism, implicit bias within the medical community, etc.), perhaps knowing that everything was tried at least towards the end of their life, may be comforting. It’s not ‘too much care’; it’s the care that’s interpreted as being necessary to stay alive. Care they may have never had access to previously. The belief that ‘everything’ has been done at the end of life can have important benefit to the patient, and perhaps just as importantly, the family they leave behind. And this should not be given short shrift.
There is a growing push by national organizations (ex., The Conversation Project and Prepare for Your Care) to improve end of life care by emphasizing the importance of discussions around goals of care before life limiting illness occurs. While this is important, we should not be lulled into believing that all patients will be benefit from this approach. It may only really apply to a subset of the population- those privileged with lifelong easy access to care.
My bias is that to really improve end of life care, particularly for populations of color and underserved populations, we as a nation need to improve the care all patients receive across their life span.
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