Some of you who get this blog through email will see this twice. It is about a book that discusses end-of-life care, important since my dad's latest stay in the hospital has stretched to seven weeks. So I sent it out to my family email list. It is also worth posting to my blog for those who aren't family.
My aunt and cousin suggested the book Being Mortal, Medicine and What Matters in the End by Atul Gawande. I agreed it sounded interesting and timely, so my cousin had a copy shipped to me. Thank you. I finished reading it this morning so that I could summarize it before I go to Texas tomorrow.
Gawande is a surgeon and also a writer. This is one of four books he has written. He is also a staff writer for the New Yorker and this book is an expansion of ideas from articles he wrote for that magazine. The book explores two related topics.
The first topic is what do we do with our elderly when they are no longer able to care for themselves? We've come a long way from old people being stashed in poor houses in horrifying conditions (alas, still the norm in some parts of the world). Social Security and Medicare closed the poor houses and care was taken over by hospitals. Between cost and space those became too much, so nursing homes were created.
Alas, the driving forces of a nursing home are patient safety and ease of staff responsibilities. Residents were denied permission to walk unassisted if they were at all unsteady. They were all woken at the same hour, dressed and herded to breakfast together, sent to the day's activities together whether individual residents wanted to or not, and put to bed all at the same time. Residents hated the places because they were made to feel helpless, all choices of life taken out of their control.
In 1983 Keren Brown Wilson built the first assisted living facility. The difference from a nursing home was basic: the residents were in charge. Staff were there to assist as needed, but the residents called the tune. If a resident wanted to be irresponsible, such as not taking meds, that was up to the resident as would be the case for the rest of us who are well enough to manage our own lives. A person should not lose autonomy because they need help in living.
The concept of assisted living has blossomed. Alas, it has also become corporatized. Some places that call themselves assisted living centers are more like regimented nursing homes than a match for Wilson's vision.
Bill Thomas of Chase Memorial Nursing Home of New Berlin, NY experimented with another direction. He convinced the directors to bring in resident dogs and cats and added 100 parakeets (which arrived before the cages). The transformation of the human residents was amazing. A good deal of the improvement because they now had a purpose in caring for the dogs, cats, and birds. Thomas also got the place involved with the school next door. Residents tutored students. Kids adopted new grandparents. Existence had meaning. The place became Eden Alternative.
The book also has the story of Jacquie Carson of Peter Sanborn Place. It was built as apartments for independent low-income seniors. But seniors tend to become dependent. Carson responded by offering services as her residents needed them and resisted mightily efforts to send her residents to the horrors of nursing homes. She succeeded quite well. She showed the concept of assisted living was also available to low-income people.
The book also discusses places such as NewBridge and Green House. There appears to be several of these around the country.
The second topic of the book is what to do about care for those that have conditions that medicine can no longer fix. Doctors tend to be optimistic about the usefulness of treatment. Patients and family members tend to mentally inflate that optimism even more – if a doctor says 1-2 years the family tends to think 10-20 years. All this aggressive treatment tends to be expensive, its first problem. So the question is: When should we try to fix and when should we not?
Gawande is introduced, and introduces us, to hospice care. We're used to this being for the dying, but Gawande says many of the ideas should be introduced into the discussion long before the final days. It is definitely a discussion that initially can take to two hours. It focuses on these questions:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes? The fears might be around pain, dependence, loss of enjoyable activities. The hopes might include spending time with extended family for as long as possible.
What are the trade-offs you are willing to make and not willing to make? One man said as long as he could watch football on TV and eat chocolate ice cream, he was good. This discussion also explores the trade-off between pain now and more time later.
What is the course of action that best serves this understanding?
Once the course of action is set in motion a main question is: How do we make today a good day?
In 2010 Massachusetts General Hospital did a study of 151 patients with stage IV lung cancer. Some of them explored those questions and others with palliative care specialists. The result: those who worked with palliative care "stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 percent longer." (emphasis in the original.) Yes, many of those aggressive treatments do much more harm than good, its second problem. We live longer when we stop trying to live longer.
The book can be hard to read as Gawande delves into several terminal cases, including his father's case. Even so, he writes with great humanity. And he makes a lot of sense. I'll be exploring these ideas with Dad and his care team. I'll also keep them in mind as I also become old and frail. Highly recommended.
Yes, I head to Texas tomorrow for the Reconciling Ministries Network Convocation. I'll be gone six days, so may not post much in that time. I'll have a big post about the Convo when I get back.