BETTER DESIGNS FOR CARE – THE CASE OF PALLIATIVE CARE

Recently, Collabria Care hosted an annual symposium on palliative care that drew over 80 physicians, nurses, social workers and others to American Canyon to consider the advances in palliative care. This annual event is jointly sponsored by Partnership HealthPlan of California.

Each speaker over the two day symposium offered challenges for daily practice in palliative and end of life care. None was more challenging, dare I say, ground-breaking than the last presentation of the symposium by BJ Miller titled “Not Whether, But How: Exploring the Potential of Palliative Care”. Dr. Miller is a palliative care specialist at UCSF, and an internationally-renown thinker and speaker (see his TED talk at https://www.youtube.com/watch?v=apbSsILLh28 ) who brings design thinking to the reformation of palliative care.

His hour-long talk was part philosophy, part design, and wholly focused on the care that we give our patients who have serious illness and are moving towards the end of life. His prime challenge to us was how to move from a disease centered to a human centered approach to care. He reproached current medical systems who are locked into the increasing complexity and technologies of diagnosis and therapy, and miss the opportunity to address what really matters to patients that he identified as:

  • Not being a burden, esp financially to family and loved ones
  • Spiritual peace
  • Community and communion of loved ones
  • Respect for culture and traditions

He challenged us to move beyond the dualities that our health system has set up, and which impede human centered care. These include:

  • Acute vs chronic. Where is continuity and continuum of care in our system?
  • Intervening vs. supporting. Our system is geared towards doing, often because we can rather than because it is best for the patient. How does our health system support the needs of patients which are different than the needs of the providers?
  • Curing vs. healing. Does our health system truly understand what is meant by healing which is more than the elimination or control of disease?
  • Quality of health vs. quality of life. The focus of health systems is to restore physical health rather than achieve the patient-desired quality of life.
  • Less horrid vs. more wonderful. I love this paradigm where a health system moves beyond alleviating suffering (particularly physical) to a system that strives to bring delight and meaning to the people it serves. In other words, a system that brings wonder and creates an environment and state that is more wonderful. Contributing to the “horrid” mindset is our health systems proclivity to define illness, suffering, disability, aging, and dying as “abnormal” which need to be normalized.
  • Self vs other. Our health systems are constructed on the model of we, the care providers, doing to they, the patients in need, who are often categorized and compartmentalized by their disease state (we have pediatric floors, medical floors, surgical floors etc). How could we envision a system where we the dying are caring for others who are also dying. I am reminded of Gayle Stephens (one of the fathers of family medicine) who advocated person centered care defined as care of a person by a person.

Dr. Miller emphasized two other design keys. First is “proportionality”. We have a health system that can’t help itself, is so taken by the awesomeness of its capabilities that it “bestows” on patients often more than is desired, more than is needed, leading to more suffering rather than less.  Related to the first is the tyranny of choice. Too often “what can be done (choices) takes precedent over what is best for the patient (as negotiated in communion with the patient)”.

As with many other sectors of society, healthcare is enamored of words which are latinzied and too often not understand by the user or recipient. Dr. Miller challenged us to think beyond words, to the realm of experience and how health systems can design and use experience to care for patients.

Finally, and perhaps most radically, Dr. Miller challenged us to move beyond the healthcare paradigm that is wrapped into a time continuum of past into future. Palliative care buys into this paradigm through disease and outcome prognostication. His final (or at least what he left us to ponder) challenge was how to create a system where patient-provider and all their individual and amalgamated meanings converge in the real time of the present.

I walked away exhilarated and inspired that these design principles not only apply to the domain of palliative care but all of health care. There is hope that in the redesign of palliative care will be a blueprint for the rest of healthcare.

Scott Endsley MD, Associate Medical Director for Quality

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