Being Mortal: A Doctor’s Hard Look at Mortality

Being Mortal: A Doctor's Hard Look at Mortality

We are all mortal. We are all going to die. And yet each day when we rise with that virtual list pounding in our heads as to what we have to accomplish, death is never on the list. And it shouldn’t be. But one day it will be—though it may be totally unexpected. Because—yes, we are all mortal.

In his comprehensive and helpful book Being Mortal, Dr. Atul Gawande (Complications, Better, The Checklist Manifesto) once again forges new territory as he educates physicians, other medical personnel and us about the importance of choice when one is severely ill or close to death. Because doctors are trained to heal and to save, more and more patients and their caregivers are realizing that how we will be living, the quality of our individual lives should be a major consideration when making difficult decisions about surgery, chemotherapy, clinical trials, and end-of-life therapies.

If you are in charge of someone’s health, do you know what that person truly wants?  

Gawande recounts the story of a daughter whose father was hospitalized with cancer—a tumor growing and filling his spinal column. While driving across the Golden Gate Bridge to her home, she was thinking about her father’s surgery that was scheduled for the following morning. She was going over all that the doctor had said. It was almost midnight, but she suddenly realized that she didn’t truly know what her father wanted. Yes, the doctor had talked about possible outcomes—but nothing had been settled.

Make sure you know. 

She turned around and drove back to the hospital, waking her father and asking him: If the surgery results in you gradually becoming a quadriplegic is that really acceptable? He thought for a while and finally answered yes. As long as he could eat chocolate ice cream and read he would accept the gradual loss of movement that might occur. The doctor was removing some of the spinal tumor but had stressed that he couldn’t get it all and the chances of it growing back were strong. So they talked! The daughter and her father had the conversation so that depending on the results of the surgery—if he woke up or if for some unknown reason he didn’t wake up—she knew—no intubation, no Intensive Care Unit for months and months because that would mean no chocolate ice cream, no reading.

The beginnings of assisted living. 

Gawande writes about Keren Brown Wilson who is credited with creating the model and the term assisted living. She fought for funding and was finally able in 1981 to open Park Place in Oregon, utilizing the following definition of the type of care the facility was offering: Assisted living… is a program that promotes resident self-direction and participation in decisions that emphasize choice, dignity, privacy, individuality, independence and homelike surroundings.

One of the things Wilson assured her clients, something they had asked for: each home or unit would have a lock on its door. Because nursing homes were more like large wards where people had little that they could identify as theirs and staff had access to their “space” whenever they considered it necessary. Wilson’s experiment was a huge success and assisted living facilities sprung up all over the United States. Some statistics: since 1981 there are 40,000 more assisted living facilities. Read more at: http://www.assistedlivinghistory.com

What current senior homes provide.

The assisted living model includes 24 hour staffing so there is always someone “in house” to provide needed care. Residents have their own home or apartment and they can prepare meals if they choose to, but there is often a community area for eating meals and participating in activities. Today, many senior living residences have a variety of living options. In addition to independent and assisted living areas special care units now exist.  These specialty units complete continuation of care: if a client ages or health deteriorates, 24 hour nursing care or a locked unit for Alzheimer’s and dementia is available.

Gawande and his father. 

The most affecting portion of the book is Gawande’s open discussion of helping his father who also developed a tumor in his spine and slowly found his independent life as a doctor, husband and father slipping away. The irony of researching and writing this book and then being faced with the very same difficult and personal issues of his interviewees underlines the strength of this physician-writer. He writes:

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well. 

My personal experience. 

The last sentence rang true for me as I watched my mother experience living alone in her condo, then losing her ability to drive, then finally agreeing to move to a senior center. She did so with the hope that she could reside in independent living. But the beginning of her dementia signaled that assisted living would be her destination. As the months piled on, I often had to remind her to go to dinner or to take her medication. Soon the nurse was in control of that and as the disease progressed, Mom finally lived in the memory unit, something that was very hard for me and my family. There was no other solution. Her dementia prevented her from living with us as she could never be left alone near a stove or other appliance that might do her harm or worse. I remember arguing with the staff that my mother would never be a “flight risk.” I was wrong, even about that! Reading Being Mortal helped underline for me that we made the right choices.

End of life decisions should always include choice.

And that is what Gawande emphasizes in this book: choice. The cases he relates are all about allowing the patient to decide: should I have another surgery when death could be less than weeks away? Decision: no. Hospice: yes. Gawande takes us on his own personal journey of watching Hospice nurses do their work. He is amazed at how they approach a dying client and how they are able to help this person choose what they need as their end of life journey begins.

Gawande writes: When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

P.S. In 1990, the state of Oregon began to research a better way to insure that patients being treated in the hospital or by EMT’s would have their healthcare wishes properly followed. Called the Physician Orders for Life Sustaining Treatment or POLST, the final stage for completion of the form occurred in 2009.

Definition of the POLST

POLST is a medical order. For those with serious illness or frailty, a POLST Form is completed with your health care professional to direct the kinds of treatment you want in a medical crisis. As a seriously ill or frail patient, POLST orders help give you more control over the treatments you do or do not want to receive in a medical crisis. The form works even if you later lose the ability to speak for yourself. The POLST order is signed by your physician, nurse practitioner or physician assistant after a discussion with you and/or your Health Care Representative. Since it is a medical order that will be followed in an emergency, it is important that it reflect your wishes now, in your current state of health.

To see if you live in a state where the POLST form is used, go here

Also, to view a video of how the POLST works go here.

P.P.S. The state of California has just made assisted-suicide legal.  

Being Mortal: A Doctor's Hard Look at Mortality

Thanks to: www.gone-ta-pott.com

18 thoughts on “Being Mortal: A Doctor’s Hard Look at Mortality

  1. This is a very helpful article with excellent insights into how to face life near the end of one’s own journey or a loved ones. My family was very involved with my mother’s journey when her time came, but being informed and somewhat prepared helped to guide ALL OF US through the process. But I remember when Mom went to her heavely rewards I was proud of her and how she did everything in her life with dignity and class. Our family being informed really ended up being a great help. Bill

    • Love you, Bill. It was one of the journeys of our lives and in the end I think we made the right choices for everyone concerned. God bless Mom, forever.

  2. Profound wisdom about issues we will all have to face and all have to educate our loved ones to face. Thank you for sharing this information. Hard to discuss but really no one escapes this issue.

    • Hi Kathy,
      Yes, as we age and our parents age providing a smooth pathway works so much better than avoiding the inevitable. Thanks for reading, Beth

  3. Thanks for sharing this important information! It is so hard to think about the death of our loved ones and ourselves, but denial is no answer. We need to all be prepared for the inevitable, and this article helps us do just that!

    • Hi Laura, thanks. I really love Dr. Gawande’s take on things. He always holds one’s hand and teaches gently, but doesn’t hold back what we need to know. Have a good week, Beth

  4. Such a good reminder that we need to make sure we ask as many questions as possible when we enter the healthcare system and think about end of life care, in particular. I’ve found out the hard way in the past that a doctor’s definition of successful surgery wasn’t the same as my definition. If I had probed a bit further, at least I would have made a more informed decision.

    • Hi Katy,

      Yes, I always say THE DOCTOR WORKS FOR YOU. Asking questions, keeping them from running to the next patient is your right. But we all learn as we go. When my mother had dementia, I sometimes had to fight with the doctors and I didn’t always win. Having Gwande for a doctor–that would be something. Beth

  5. Thank you for your detailed review and for sharing your personal experience with caring for a parent with failing health. Your post will certainly help other adult children prepare for some of the challenges of working with parents who need a lot of support through the dying process.

    • You are totally welcome, Karen. There is doubt when you enter this world, but communication with family members and educating yourself as you go, is the best way to make the pathway as smooth as possible. Beth

  6. My husband and I have both read this book and it’s fueled some really good conversations–with more to come, I’m sure, as we get older. We lost both sets of parents between 2003 and 2010, and wish we’d had Dr. Gawande’s wisdom then. I recommend his to just about everyone I know, and hope my book group will read it, too. I’m still surprised at contemporaries who refuse to discuss this topic with their parents or spouses. None of us gets out of here alive, and I can’t imagine not making my wishes known for when “that time” comes. Thanks for a thoughtful post.

    • You are totally welcome. I can’t imagine not discussing these things. My husband has a chronic illness, so we have to be alert to what the future might bring. So glad that your marriage affords conversation about these matters. I would say, Roxanne, we are both VERY lucky. Beth

  7. Hi, Beth
    Good article to force us to face directly the issue of mortality. The issue is harder on the children who makes the decision of surgery and care for their parents. The children do not know it is what the parents want.

    Is Assistant living facility good for them? It’s all depend whether you are lucky enough to find a good one. As for me, I hope I will never need to go there.
    The parents can help their children great deal if they list out their desires well before anything will happen.

    Nice week!

    -Stella Chiu

    • Hi Stella. I think a lot of it is awareness and the relationship you have with your parents. You have to open the door some time and talk about these things. You can’t ignore them. When I had to take the car keys away from my mother, that was the beginning. Very difficult. Now I know someday it will happen to me. As for assisted living, there are good places. Get long-term care insurance, put money aside. Plan. It’s inevitable. Beth

  8. Oh, my heart pounded a little heavier while reading this. We are all at the age of tending to our parents.

    My dad had a stroke 15 years ago and he is still with us today, frail but total brain power!! But I wish I could persuade my parents to move to independent living. Well, it’s a long story.

    Thanks for this post, Beth. It’s so important for us to be aware of what is available for us. This book sounds incredible and thank you for introducing it to me.

    Best to you.

    • Hi Cathy, I know you are super busy and have a lot on your plate, but if you ever need to read a doctor who has great insights read this man. He has other books. Your experience with MS just might be a key to something he will one day write about. Wish I could get you two together. Beth

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