Creating Optimism in Advanced Care Planning Conversations
By Jonathan Thorne, M.D., Internal Medicine
“Quality” and “value” metrics are becoming the vernacular for the American healthcare industry payment models, but do we, healthcare providers, offer our patients choices to achieve the highest “quality of life” and receive the best “economical value” during the final weeks or months before they die? The data reveals missed opportunities abound when it comes to discussing goals of care, Advanced Directives and their documentation.
Retrospectively, my medical school education and residency training zeroed in on identifying and treating every disease in the Kelley’s Textbook of Internal Medicine. As an outpatient PCP for 18 years, my focus was on making sure that I met national standard benchmarks of “quality” healthcare including hgbA1c for diabetics, BP for hypertensive patients, routine vaccines at annual physicals, etc. Of course during my early years in practice, when I was documenting on paper and had more time to spend with each patient, conversations about end of life goals were less taxing and less forced. Then, electronic health records arrived and my time was suddenly consumed with documentation, which is ubiquitous across all medical fields.
As I transitioned into a new role in the local emergency department evaluating my medical group’s patients to reduce ED overutilization and offer alternative treatment plans instead of hospitalizations, I realized that very few patients had Advanced Directives or code status in their records. Many patients have terminal illnesses, end-stage chronic diseases and are severely debilitated physically or mentally, but have not had significant meaningful conversations concerning their prognosis and eventual death with their health care team or families. Furthermore, unexpected situations similar to the unfortunate 1990 Terri Schiavo case occur every day resulting in the emotional division of family members, eventual death of an individual and ultimately the death of a family. Hopeless patient suffering and lack of knowledge about prognosis creates anxiety, worry and depression for everyone involved. Tentatively, I began to give patients and their caregivers the information that they really wanted to know despite being a new face to their health care team. Their appreciation was palpable.
The paucity of meaningful conversations and documentation in combination with the overwhelmingly positive patient and family feedback emboldened me to initiate a pilot program in my company in 2017. Starting with building our electronic health record documentation template into the social history, then having discussions with our nurse and social worker care coordinators who were eager to learn more and help educate patients about advanced directives. However, no one is more impactful with these end of life conversations than the physician providers on the health care team, from PCP’s to specialists, surgeons, gynecologists, etc.
Lastly, during a recent patient “group education” meeting, patients and their family members added that they have financial concerns about costly medical procedures, medications and hospitalizations. Most had experiences with loved ones who had died despite increasingly expensive interventions. If they had been informed of a poor prognosis based on measurable functional status tool, such as ECOG or Palliative Performance scales, then they believed that unnecessary suffering and medical expenses would have been avoided. When I noted statistics revealing healthcare costs are an increasing cause for claiming bankruptcy for Medicare patients and the average one night hospital stay in the lowest acuity bed was over $2000 (a critical care bed was over $10,000), they were less than enthused to be hospitalized if they have a poor long term prognosis. Every patient attending the meeting was interested in learning more about Palliative and Hospice care and the means to attain those services when appropriate.
We all owe our patients and their loved ones the peace of mind that accompanies informed decisions regarding advanced care planning and quality of life during their last months and days. If you were in their shoes, wouldn’t you desire the highest quality and value of care? Do you have your Advanced Directives in place and feel confident that your loved ones know what your desires are when you are incapacitated? I am optimistic that as a healthcare community, central Ohio providers will empower our patients and each other to have impactful conversations about what “quality” and “value” mean to each individual.