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Writer's pictureMichael Connelly

Why end of life care needs to change

Casey Mean’s best selling book Good Energy offers a powerful personal analysis of how healthcare needs to change. The book offers individuals lifestyle changes that can significantly improve one’s health. The book also gives advice on why individuals need to trust themselves and not the health system with the management of their chronic illness.


The health system is designed to treat acute care issues. However, that design inhibits healthcare from managing a very different health issue - chronic illness. Chronic illnesses manifest themselves in multiples - if you have one chronic illness you likely have several others. Health care is siloed - specialties seldom coordinate care. This is a real problem. Illnesses like diabetes, COPD, and heart failure are often interconnected. The health system is not interconnected.


Dr. Mean’s illustrates this problem with her mother’s end of life care. Her mother has cancer, but she also has multiple other chronic issues that will cause the cancer treatment to fail. The siloed physicians are oblivious to this reality. This quote from the book describes the problem well: ”The most important thirteen days of my life came from ignoring a team of doctors. Right after my mom’s pancreatic cancer diagnosis, a medical team out of Stanford and Palo Alto Medical Foundation jumped to action, recommending a laundry list of surgeries and procedures…"


Her mother was clear that she did not want extraordinary measures - especially anything causing pain, nausea, and isolation.


“I confirmed with the oncologist: ‘You are recommending an invasive diagnostic procedure that would under no scenario extend her life more than a couple of months and risk my mom dying alone in a hospital room?"


Note this was during the COVID outbreak.


"Even though we were certain that this is Stage 4 pancreatic cancer…and that she has liver failure and almost no red blood cells left?’”


"'Yes, that is what we are recommending,' the doctor replied.”


This physician panel of nationally renowned experts is solely focused on treating the patient's cancer - not on the patient's/family's stated preferences to allow the patient to die without further futile treatment.


The family took their mother home without any further treatment.


“The final thirteen days I shared with my mom were the most meaningful of my life.

If we had taken the advice of the medical system, they wouldn’t they wouldn’t have happened.”


Most patients don’t have a skilled advocate like Dr. Means protecting their care. By the way, that is the role of palliative care but this specialty is seldom part of the acute care treatment model. 


Fundamental changes are needed for end of life care. Pragmatic solutions to these issues are offered in my book The Journey's End.




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