Preparing for End of Life with Help from “Being Mortal” by Atul Gawande

2016 begins with a lot of well known people dying. I find that I have friends and family who, like myself, have been touched by these deaths.

My son-in-law tells me that Lemmy of the Motorhead died just before the New Year dawned. His death was followed by that of Vancouver’s own Dal Richards. My friends that went to his funeral were deeply moved. David Bowie was next and at least one dear friend has told me several times about how his music touched her. Then Alan Rickman died and here my Harry Potter-loving grandchildren had to take in that their both reviled and in the end beloved “Snape” died. For me I lost the quintessential lover, alive and as a ghost, in the film Truly, Madly, Deeply. Glenn Frey was next and my same David Bowie fan finds occasions to tell me about certain Eagles songs whenever the opportunity arises.

For me William Needles and Brian Bedford, both great Shakespearean actors who made Canada’s Stratford Festival what it is, died. I was reminded of making costumes for them at Stratford as a young university student.

My first New Year’s Intention for 2016 is to update my will. Toward that end I promised myself to read Being Mortal by Atul Gawande. The average age of the above named people is 74 and I have passed that number. It is time to get my affairs in order. I am one of those possibly insufferable people who tends to follow through on New Year’s Resolutions. I am starting by collecting my learnings from Being Mortal and sharing them with you.

Atul Gawande is a practicing surgeon, a professor at Harvard Medical School and a staff writer for the New Yorker. He is South Asian and married to Kathleen, a Caucasian woman. They live with their 3 children in Massachusetts. 

This book may change how you live your life; philosophically for sure and probably medically as well. There are very few of us who, within the circle of our families, are not touched by the end-of-life journey. Ultimately we will all personally be at death’s door. As Mr. Carson said in a recent episode of Downton Abbey, “Life is short. Death is sure. That is all we know.”

Not so long ago death was not a defeat for the person or for the doctor. Death was expected and accepted as a necessary and inevitable part of life. This has changed with modern medical technology and prolonging life at all costs is encouraged as the only way. Gawande’s voice challenges this arrogant assumption. 

The book has 8 chapters. In the next 8 pages I will give you the Coles Notes version of the book and my thoughts on it as well. I do hope it will encourage you to reflect on your own dying process, and to prepare as best as you can. 

The Independent Self

We now grow up and grow old. We do not suddenly drop dead of a disease before the age of 40 or die in childbirth as so many women before 1900 did. In western countries we grow up and we leave home and often move very far away. Family gets demoted in status and we create new families.  Veneration of the independent self is a core value. 

Dr. Gawande reminds us that this is well and good for a time but in reality independent living becomes impossible for almost all of us. This is not a pleasant thought. 

Why do we age we ask? There are different theories and the most common one is that we simply wear out over time. We are built to be repaired. We have many spare parts; two lungs, two kidneys, two sets of teeth etc.  Over time, general wear and tear takes its toll. It is a slow and steady descent toward death.

A newer theory is being explored that there is a genetic component to all of this. It is possible that we will discover that the time of our death is coded into our genes.

Living independently is very compelling for us in the western world. I grew up in an extended family but this is rare. Gawande’s father grew up in a very large South Asian family compound in India. His grandfather, the patriarch, governed the family and the family took care of him. He died at 110 when he fell from a bus and fractured his skull on his way to do business in another town. Now here is a way to go.

On the other hand, Gawande’s wife’s grandmother lived independently for a long time after her husband died, but had an unpleasant end that is more typical in western society.

Gawande lists the 8 activities of independent living. These are the markers and you must be able to do each unassisted.

1. use the toilet
2. eat
3. dress
4. bathe
5. groom
6. get out of bed
7. get out of a chair
8. walk

When one can do all these things it is hard not to take them for granted. However Gawande minces no words. As sure as the sun sets, we will lose one or all of these and usually very slowly. I have a friend who is in a program which assesses aging. She was asked to get out of a chair 150 times without any assistance such as using the chair’s arms. I am working on it! 50 and counting.

I was interested in how this chapter stresses the importance of feet . The examination of feet can help the care giver/doctor keep track of the biggest danger of all no matter the diagnosis. Falling! Yoga practice and Pilates becomes about balance as I age. 

I also thought about various experiments that I come across where seniors are deciding to create communes of sorts. Is there a way that combines the family compounds of South Asian countries with the fierce independence of North America? Think about the film The Four Quartets. And for a totally alternative take, see Maggie Smith in The Lady in the Van!

Dependence

“I don’t want to be a burden!” My mother’s words, said so often after my father died, echo in my heart and mind. I find myself saying the same thing.

Or I say to myself, “Dying is fine and acceptable but how I die matters.” 

We understand Philip Roth’s comment in his novel Everyman “Old age is not a battle. Old age is a massacre.” More commonly we simply say in moments of frustration, “old age sucks!”

In the past, as people grew older and had modest means, they ended up in poor houses that over time gave way to hospital beds that gave way to nursing homes. I walk by one everyday on the way to the street where I shop. It is not a poor house. Would I be safe there with square meals and professional health services. Yes. Do I want to end up there? NO.  

My sister spent the last part of her life in such a place. Her world became the size of a small room with a bath and a television. She did not go outside. She knit sock after sock and watched all the sports with an energetic mind. She communicated with the staff and her family. She made it work. But…

Recently I lost so much of what I valued; I lost a future I had co-created and I reeled. I would not allow losing my home. A dear friend tells me that both her mother and mother-in-law in their nineties and recently widowed are adamant that they will not leave their homes. My grandfather in his last few weeks was finally in a nursing home. When I visited he simply begged me to take him home. Dr. Gawande’s father also insisted at his end to be brought home. There is something very powerful about what “home” is for us.

There are no easy answers in this chapter but much to consider.

Assistance

Karen Brown Wilson set about to eliminate nursing homes. She wanted an environment for frail seniors that did not eliminate their autonomy.  She created Park Place in Portland Oregon. She made a place where the old and frail would live a life worth living. Her ideas came to be called “assisted living” and it caught on. Park Place was copied all over the world. It became too popular and developers slapped the name, “assisted living” on everything. Assisted living accommodations became glorified or not so glorified nursing homes. It became a system that provided care that was safe but devoid of anything the elderly cared about. By 2000 Wilson was done with it. She sold her company.  Today there are assisted care homes that work; Wilson’s ideas still make sense. But too often assisted living environments have become a stepping stone to nursing homes, something which was never Wilson’s intention. 

Why does assisted living fail? It is hard to help people to live meaningful lives. As I read this I thought that they need psychotherapists to help. Health and safety are easier than meaning. Meaning is more time consuming than our practical chores. When helping a senior dress, it is easier to just dress them than help them dress. Assisted living became something more for the sake of the children of the aging person. It became more about“this is where I am comfortable seeing Mom/Dad” rather than “is this where Mom/Dad is comfortable?”

“So this is the way it unfolds. In the absence of what people like my grandfather could count on- a vast extended family constantly on hand to let him make his own choices- our elderly are left with a controlled supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”

page 109 Being Mortal

A Better Life

Please Dr. Gawande give us something better.  

Here the author introduces us to some enchanting alternatives. Dr. Bill Thomas, a very charismatic doctor who preferred organic farming to medicine took a job at a nursing home to free his time for farming. He met the eighty “inmates”  (half with disabilities and half with dementia) and found them bored, lonely and helpless. Somehow he cajoled the authorities into change. He put in 2 dogs per floor and 4 cats, indoor plants, a colony of rabbits, a flock of laying hens, an outdoor vegetable and flower garden, staff child care was started and and after school program begun and just to top things off he brought in 100 parakeets on the same day. The birds were released into the beauty salon before the cages arrived. The cages had to be assembled the next day. You guessed it. Boredom was over. The residents woke up. 

It worked. Medications went down, drug costs decreased, deaths fell, and news spread that this was the place to be.

There is an interesting meditation at the end of this chapter on Josiah Royce’s book The Philosophy of Loyalty. It is an old book. I studied it years ago. I think about the hope it registered within me. Its premise is that life is worthwhile when you have a cause beyond yourself. This is a thought that deeply challenges narcissism. Today some psychologists refer to this idea “as the existence in people of a transcendent desire to see and help other beings achieve their potential.” page 127

I find this chapter inspiring. We have to bring more creativity to the field. There has to be more than one Dr. Bill Thomas and Karen Brown Wilson in the world. I also note it is one of the few places this book directly mentions dementia. Another book needs to be written.

Letting Go

Most of us who are aging and have made a will know something of what this is about.  You know these questions if you have made a living will, now legally known as a Representation Agreement. 

1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you cannot eat on your own?

Now the discussion turns to critical choice: Medical Interventions whose goal is to extend life and Hospice whose goal is full life now, freedom from pain and being made comfortable. 

Dr. Gawande tells us that this is when fighting for time switches to fighting for other things. Here the practice of interpretive medicine (see below) is essential, as are on-going discussions with one’s family or circle of support. 

Hard Conversations

This chapter seriously challenges the medical profession. Thank you Dr. Gawande. Only a surgeon could do this so well and have a real chance of being heard.

Three types of medicine are described and the first two we know well.

1. Paternalistic.  In this model the patient gets what the doctor knows is best. The doctor makes the decision and may only tell the patient what he/she thinks the patient needs to know. This is how medicine was practiced for a very long time. Sometimes when faced with so many difficult decisions we yearn to have it back.
2.  Informative.  We recognize this immediately as it is how we are mostly treated to-day. Here are the facts and the figures and the rest is up to you.                                                                                                                                                                                                                                             I have just cared for my daughter in law as she experienced a very invasive form of breast cancer. Chemotherapy or no chemotherapy? Mastectomy first and then chemotherapy or the other way around? Reconstructive breast surgery with the mastectomy or later if ever? Radiation in local hospital or in cancer centre in a cosmopolitan centre?  I was witness to the anxiety this approach creates. We are all blessed that she is recovering from the cancer. I wonder if all the anxiety created could have been eased by another approach.
3. Interpretive or Shared Decision-Making. Here the doctor is someone who gives information and gives guidance based on knowledge of the patient’s wants. 

Dr. Gawande had informative style down perfectly. But he wanted to learn how to make shared decisions with his patients, to do more than just provide information and leave it up to his patients to figure out what to do on their own. He sought help from gerontologists and palliative care doctors and nurses. He learned to ask “What is important to you?” “What are your worries?” He learned that if he talked more than 50% of the time he was not doing a good job. He needed to learn that patients are not always sure of their wants and sometimes their wants need to be rethought in a larger perspective. He took psychotherapy training 101 in my opinion and became an active listener.

For one patient it was enough for him to watch football and eat chocolate ice cream. This question keeps arising in me: “For what is it enough for me to stay alive?” I notice how frequently I change my answers.

With this medical approach, the doctor learns that the choices are relentless and this conversation needs to happen as the slow decline occurs. Gawande encourages this approach and supports it by stating “the finitude of one’s life can be a gift”.

Throughout reading this book, I talked several times with my friend Anne Simmonds, former chaplain at Wellesley Hospital and presently spiritual director. She has much experience in grief and in palliative care. I get impatient with a long slow decline no matter how carefully it is done. She offered me this. She spoke with me about her father’s death. She expressed exactly what Dr. Gawande said. She said that her time with her father was indeed cherished time, a "gift" she called this time. She saw herself  the privileged to have this experience with her father. I saw this as my first husband walked so closely with the death of his mother over many years. Dr. Gawande made it possible for me to see this in a new way. Being Mortal might also be called the challenge of being dependent. Of being able to see one’s impending dependence as a possible gift to one’s loved ones rather than as a burden.

Courage

In my impatience am I lacking in courage for the end of life journey?

We learn from Dr. Gawande that in sickness and in aging two kinds of courage are necessary.

1. We must confront the reality of mortality. We must seek out the truth of what is to be feared and what is to be hoped for.
2. And we must have the courage to act on what we find.

Otherwise we may in the end be choosing prolonging suffering and thereby shortening valued life. 

My brother died the day following his birthday in palliative care. He had a beautiful birthday and spoke with all his family, his children and their children sharing his love for each of them. At his funeral their faces radiated with knowing they were loved. It was remarkable to witness.

At the end of the book Dr Gawande addresses medically assisted suicide. He raises an interesting criticism. He thinks that the object of medicine is to enable well-being all along the way. Thus he speaks for palliative care and the death that this service provides. He worries that in the Netherlands, which embraces physician-assisted suicide, there is very little palliative care service. He further speaks for palliative care by noting that even when people have a lethal dose at their disposal half do not use it. He makes a strong case for increased palliative care services over longer time periods both in centres and in the home. Further I encourage you to read Anne Simmonds current  blog on this subject  http://www.annesimmonds.ca/ 

I think this is an amazing book. I recommend it as essential for all who want to prepare for end times with consciousness.  Am I more ready to update my will?  Yes, and I will include instructions for my children that will give them encouragement to have regular meetings with me as the choices present themselves. I will keep thinking about what it is that I want to stay alive for. I will give them the questions they are to ask me. What are my worries and what do I hope for and which is more important? I am fortunate that, being psychotherapist’s children, they know how to active listen!