Atul Gawande and a New Paradigm for Living Well Through the End of Life
Last week, I attended a symposium featuring Dr. Atul Gawande, organized by the New Jewish Home. The subject of the symposium, which was sponsored by the Himan Brown Charitable Trust, was Dr. Gawande’s book, Being Mortal: Medicine and What Matters in the End. After giving a rich and moving talk, Dr. Gawande was interviewed by Audrey Weiner, the president and CEO of the New Jewish Home, and co chair of the Age-Friendly NYC Commission. (Click here to see a brief video of highlights from Dr. Gawande’s talk and conversation with Audrey Weiner.)
Dr. Atul Gawande has paved the way for the discussion of a new model of aging and a new vision of mortality. By creating such a powerful discussion on this important topic, our vision of the how we can live out the last few years of life is forever changed.
Evolution from Human Doing to Human Being
The well attended symposium got me reflecting on my life. Very often, my friends and I will lament the fact that we simply do not have time to really enjoy simple things like a sunrise, the soft caresses given to a beloved pet, the giggle of a niece, the smell of fresh air after the rain, and other precious life moments without worrying about everything else we have to do that day, or the next day, or the next week. How we long for the time that we can stop and examine a newly blooming spring tulip or grape hyacinth. What a luxury it would be to stop at a hedge of lilacs and note the subtle color differences from one bush to the other or the nuanced fragrance of the white lilacs as compared to the deep purple. Oh, for the time to just enjoy being!
The reality is that that time will come for us all and, ironically, it is the thing we often dread the most. Although evolution is a natural and necessary state, change can be challenging. The changes in our older lives can be particularly so. Change from running a business to retirement, change from being healthy to being not so healthy, change from being married to widowed, change from being completely independent to needing some help. I call these later life transitions the evolution from being a human doing to becoming a human being.
Person Centered Life Care
As with everything they touch, the Baby Boomer generation changed the system of aging. They have demanded more support and respect for the human being stage. I refer to the care we receive in the last few years of life as “life care.” As the researcher Davina Porock points out in her TEDx talk “Healthy Dying,” healthcare exists to heal a condition. There will inevitably be a time in all of our lives where that will not be appropriate. I think of life care as a plan that supports the desires of an elder person. Desires are as individual as each person and can include eating what and when one wants, having a pet, tending a garden, giving advice to younger people, reading to children who live in households that do not foster reading or education, or even having a cocktail or glass of wine. To provide life care includes taking the time to learn an individual’s preferences and desires and finding a way to enable them. This person centered concept celebrates the human being, not the human doing or the human dying.
Palliative Care Counseling and Patient Preference Discovery
Sometimes life care means choosing not to have another surgery or not to take medicines that make the mind foggy. Dr. Gawande stressed the importance of having the discussion with one’s family about these choices. He shared the poignant story of his father’s evolution after receiving his brain tumor diagnosis. At the time of his diagnosis, Dr. Gawande’s father felt there was no meaning left in life for him if he couldn’t be an active surgeon. Time showed him that those thoughts weren’t altogether true. He, in fact, loved time with his family and friends around the dinner table. He also loved food. Dr. Gawande told a meaningful story about his dad’s love of food. Dr. Gawande’s dad opted for one more treatment as a sort of Hail Mary pass against the growing tumor. He and his family support system were not made aware of the fact that a possible side effect of the treatment was the loss of taste. Very sadly, Dr. Gawande’s dad lost his sense of taste – one of his few remaining pleasures.
Dr. Gawande also expressed a need for a discussion between patient and physician around the priorities and desires of the senior patient. He hopes that palliative care and counseling will eventually become protocol in the treatment and care of seniors. The challenge of this is that ninety seven percent of medical students in the US do not take even one course in geriatrics.[ref]Rapplyeye, E. (2015, Sept. 24). 5 things to know about the national crisis facing aging Americans. Beckers Hospital Review.[/ref] It is estimated that there will be just one geriatrician for every 3,798 older adults by 2030.[ref]Ibid.[/ref] Because of this dearth of geriatric doctors, Dr. Gawande supports palliative care discussion training for all physicians treating older patients. Dr. Gawande is running a study now in which one half of the doctors in the practice are randomly chosen and trained in palliative care discussions, while the other half are not given this training. Those given the training have honest discussions detailing the repercussions of treatment options and ask patients what is important to them in their last phase of living. Dr. Gawande gave us a cliffhanger when he hinted at some of the research findings. I anxiously await the results of his study.
Home or Homestyle Living
Throughout my life, I have had discussions with friends and family about life during advanced aging. Our biggest common fear is ending up in in a typical nursing home or hospital, existing in a groggy state from drugs or continual treatments. Simply being kept clean and alive is not appealing; it sounds like prison to us. My brothers and I saw this up close as we supported my mother through two years of rapidly declining Alzheimer’s. Her progression contained all of the painfully difficult twists and turns that are common with the disease. Although we lost the mother we had known all of our lives, one thing about her remained the same: she wanted to be in her home, surrounded by the things she knew. She wanted to eat what she wanted and when she wanted. She fought to maintain what little independence she could. Eventually she had her last episode at home and we saw her through her final two days in palliative care at the local hospital. Even in an extremely compromised state, she knew that she wanted to be home, and we did everything we could to make that happen for her.
Dr. Gawande profiled two models of excellence of senior living that honor the person, offer more individualized care, foster independence, create community, and the opportunity to care for another. Isn’t this what we all hope for in our last years? One senior living model that Dr. Gawande talked about is the Eden Alternative. The Eden Alternative was developed by the imaginative, compassionate visionary Dr. Bill Thomas. Dr. Thomas was named one of the top ten Americans shaping aging and is recognized internationally for his innovative health systems. Dr. Thomas’s vision is that people should live in real homes, not institutions. Dr. Thomas lived on a farm flush with plants and animals. When he would arrive to work in the nursing home, he would be saddened by the harsh contrast of the sterile institutional environment. He set out to change things. He succeeded in getting approval for one hundred parakeets, four cats (two per floor), and four dogs into one nursing home. He also planted vegetable and floral gardens for the residents to hone their gardening skills. The residents responded with better health and happiness. The Eden Alternative model continues to thrive internationally and positively affect the lives of many.
The second model, also founded by Dr. Thomas, is the Green House Project. Dr. Thomas sought the support of the Robert Wood Johnson Foundation to build a model that supported his vision. Green House senior living facilities are a collection of small houses that are built around a shared kitchen, instead of a nursing station. Nearly two thousand people reside in the more than 170 Green House homes in nearly thirty states. Through the use of public private partnerships, Green House homes include homes for veterans, low income seniors, and short term rehabilitation. The home like setting improves the quality of life and of care for the residents. A surprising aspect of the Green House Project model is that it sees an equivalent net profitability and return on investment to the traditional large nursing homes.[ref]Jenkens, R., Sult, T., Lessell, N., Hammer, D., & Ortigara, A. (2011). The financial implications of the Green House Model. Seniors Housing and Care Journal,19(1), 21.[/ref]
Audrey Weiner, the CEO of the New Jewish Home, mentioned that the New Jewish Home is transforming some of their care facilities into Green House communities. Their Sarah Neuman Center in Westchester County offers the option of small home living. The facility will house five small houses that will each be home to thirteen residents. An exciting new project of the New Jewish Home, the first high rise Green House, is a skilled nursing facility on the Upper West Side of New York City. Named the Living Center, the new facility will feature design that supports social interaction in a home like setting.
I plan to present these models in further detail in the future, with case studies and interviews.
Toward a New Paradigm for Aging
The ever growing elderly population here in the US and globally continues to drive substantial innovation in care and end of life planning. We are all going to become frail and need assistance at one time. We are all going to reach the last couple years of our lives. It is of great comfort to me to know that there is a new paradigm of living life in these inevitable times. We can have conversations with our family and our physician about what we want for life care when the time comes. We can now expect systems that mindfully support our evolution from human doing to human being.