Physicians of the Victorian age had a saying, “The operation was a success, but the patient died.”
Surgeon (and best-selling author) Atul Gawande, in Being Mortal, recounts the horrible last weeks of Joseph Lazarus, the first patient newly-minted Intern Gawande disconnected from an artificial ventilator.
Incurable cancer had rapidly spread throughout Joseph Lazarus. One tumor was compressing his thoracic spine. His choices were comfort care and surgery.
More than seven hours of surgery brilliantly removed the pressure. But after 14 days in ICU, blood clots, respiratory failure, and systemic infections, the Lazarus family asked young intern Gawande to remove the ventilator. He did and listened to Lazarus’ “heart fade away.”
This is a book all caregivers should read. Written in a conversational style, it was not an easy read because it challenges and forces a look at a reality most of us would rather avoid: Our mortality.
Now surgeon (and author) Atul Gawande takes a provocative look at our entire elder care system in his book Being Mortal. Written in a conversational style, it is not an easy read because it challenges and forces a look at a reality most of us would rather avoid.
Gawande laments the medicalization of mortality. Medicine is extraordinarily successful in the treatment of curable disease, but fails to honestly address issues we all must eventually face.
In Lazarus’s case, Gawande and his colleagues easily explained the dangers of various treatment options, but failed to address the realities of Lazarus’s disease. The chances of Lazarus returning to anything like his life of just a few months earlier “were zero, but admitting this and helping him cope with it seemed beyond us.”
Gawande examines every level of the care system. Medical care suffers due to a lack of trained geriatricians (who have a totally different treatment orientation from other specialities). The problem? Money. Geriatricians make nowhere near as much as, say, surgeons. Further, geriatrics teaching programs are harder to fund than more glamorous programs.
The book criticizes many assisted living and skilled nursing facilities as marketing more to the adult children (bright, clean, smell-free) than alleviating the “Three Plagues of nursing home existence: boredom, loneliness, and helplessness.”
Harvard trained physician Bill Thomas passed up exciting offers to return home to upstate New York and become medical director of a local nursing center. Frustrated at the warehousing mentality (set times for awakening, bathing, food, recreation, bed) he took steps to enable residents to live to the best of their capabilities. Tremendous, measurable results ensued from as little as giving each resident privacy and autonomy (all to the extent possible).
After examining a number of other similar models, Gawande noted that proponents share a vision of what kind of autonomy matters most. Most people think of autonomy as being free of limitations and coercion. But another kind of autonomy – being the authors of our lives to the very end – is at the “very marrow of being human.” That later type can be addressed in various treatment settings.
Hospice could have been an available option for Lazarus. The terminally ill may have priorities other than extending their lives. Those may include minimizing suffering, strengthening relationships, being mentally aware, not being a burden, and having a sense that their life is complete. That is what hospice is about: Making every day the best day possible to focus on those priorities.
Lest anyone Be tempted to equate ideas of death with dignity with assisted suicide or euthanasia, Gawande bemoans the fact that in those places where assisted suicide is legal, particularly in Europe, in spite of “legal safeguards” the use of that option has increased dramatically as people choose the “fast lane” out. The problem is that this avoids the goals of a good life to the very end. The Dutch, for example, have devoted very little tp palliative care and hospice-type options – and why should they when “other options” are available?
Near the close of the book, Gawande tells of his daughter’s beloved piano teacher. Imbued with an indomitable spirit and love for her students, she had rapidly spreading cancer. She was given an aggressive treatment option that would extend her life by months (but with a debilitating physical toll) or hospice. She chose hospice and went home.
Gawande told his tearful daughter there would be no more lessons. A few days later the phone rang. It was the piano teacher. She did what she loved; she taught piano until four days before her death at home a few weeks later.
Being Mortal: Medicine and What Matters in the End
by Atul Gawande
Metropolitan, 282 pp., $26.00
Bonnie Wolff says
The words are so powerful. Perspective is everything. I am rejoicing in the time that you had to develop your relationship with your mother-in- law, happy for her that pain and suffering has ended and her new life is begun.
Loss at anytime is difficult but seems especially harsh during the holiday time. Prayers lifted for comfort for you and your family.
Bob Mason says
Thank you very much!
Susan Waller says
My sympathy on the loss o f your mother in law…never easy, especially at Christmas.
Thank you for the column and the book review… very helpful and timely.
Bob Mason says
Thank you.
Brenda Branson says
My deepest sympathy to you, Ann, and family over the loss of Ann’s Mother.
Those we love don’t go away,
they walk beside us every day.
Unseen, unheard, but always near,
so loved, so missed, so very dear.
Have a blessed Christmas.
Brenda Branson
Bob Mason says
Thank you, Brenda
Mike Anderson says
Thank you Bob for the wonderful information you provide to us lay persons.
I am sorry to hear of your family loss during these holiday seasons. Take time with your family and enjoy the season.
Thank you again for reaching out to us all and imparting wisdom that is sorely needed.
Bob Mason says
Thank you.
I. Srefani Fehlhaber says
So sorry for your loss. This should be a joyous time of the year. No one should be allowed to die before christmas. Then there is reality/ My condolences.
Bob Mason says
Thank you very much for your thoughts.
Harold Holmes says
Thanks, Bob, for helping us think about options as we age!
Janet Hendrix says
I plan to read the book. I also plan to make an appointment with you early in 2016.
I belong to the Caregivers Support Group in Raeford, N.C.
Georgene Saddlemire says
Mr. Mason,
I lost my mom in October. We both know now we will always miss being able to see them , to call them, to tell them again that we love them. We also know that the end of life, here on earth is sometimes very difficult. I have learned so much about this after going thru day care help, assisted living, separating your parents, nursing ” home ” existence and then saying goodbye to our loved ones. I am very anxious to read the book you have suggested. I have gone to your seminars, learned about being able to keep my WWII Dad in the place he loved till the end, had wonderful help from Hospice. and along the way learned a lot of things I wish I didn’t have to experience. I am so appreciative for the knowledge you have shared with us. And now… for people to come forward and acknowledge that our world for the elders is so less than perfect. I don’t know what can ever change things . The system is broken. Maybe one person, one day at a time, we can go to a nursing home and make a difference for someone. It seems like a drop in the bucket compared to what needs to be done, but its all I know to do right now. I hope others will begin to know the great needs of our elderly and try to make a difference in their life.
Again I’d like to thank you for the hours of free time you give to our community, educating us and helping us to cope the best we can. I have used your services and appreciate the help you gave our family.
My heartfelt Sympathy to you and your family. I know its been a while, but we never stop missing them.
I am also very happy to hear the relationship you had with your mother in law. I’m sure now you know more than ever how important that was. My mother in law was very tough . It took many years of patience on my part to have the relationship I wanted to have with her. But every day I feel her love in the things she taught me. Life is short. I don’t have any elder relatives here on this earth, but I do have a great respect for all of those that are here. I plan to attend the Home Health Caregivers Meeting in February. Thanks for continuing to keep us informed . There is no book of instructions. We need all the help we can get.
Sincerely,
Georgene Saddlemire