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The “Value” of True Informed Consent in Palliative Care

On the day my Uncle John was diagnosed with terminal pancreatic cancer, he made a choice: He would travel the world and celebrate his life right up until the end.  He would not undergo radiation or painful chemotherapy.  In fact, that day was the last day he ever saw the inside of a medical office or a hospital.

In Atul Gawande’s seminal book, “Being Mortal,” Dr. Gawande discusses society’s need to be more upfront with patients about what they can expect if they choose to be treated for diseases that simply cannot be cured.  Patients should be given a choice between prolonging life at all costs or trying to check off more boxes on their bucket lists.

End-of-life care has received considerable attention over the years, as some estimates put its cost at nearly 30% of Medicare spending, while the benefits are often subjective. Addressing the issue underwent a setback when groups mobilized against efforts to instill “death panels” into healthcare.  While the topic itself stokes major controversy, the solution is not controversial at all.  And the solution – patient choice – should be applied not just to “end-of-life” care, but to palliative care as well.

Implemented properly, a comprehensive palliative care informed consent process could satisfy all moral and ethical concerns.  It could also reduce the cost of healthcare exponentially. Setting up the process takes the considerable human capital, compassion and complete insulation from perverse incentives.  It does not, however, require blockchain technology or deep machine learning.  

The key to a successful program is having the right professionals - with zero financial incentives tied to a decision – empathetically explain medical options available to patients with terminal conditions. 

Undoubtedly, many will forgo the trip to Disney Land for the chance to live longer, or may even attempt to do both.  That decision should be embraced.  But so too should the decision to travel the world and celebrate the end of life.  Cheers Uncle John.

Brian S. Kern, JD, is the founder of Toro Risk Consulting Group.  Judge Paul W. Armstrong (Ret.) contributed to this blog and is the chair of Toro’s advisory board and a career patient’s right advocate who successfully argued for a patient’s “right to die” with dignity before the NJ Supreme Court in 1976.