I don't really know how to begin this post except with a warning to those who feel emotionally challenged with death and dying at this present time...
WARNING......you may not want to read this book... BUT.... you probably really should.
Once again it is an unusual choice ....and a challenging choice for a "holiday" read, as the contents are less than fickle and merely entertaining... it strikes at the heart of anyone who is watching someones decline and facing the end of their mortality AND as a consequence facing the questions and decisions that often need to be made at such a time. In Many respects it is probably a book about those who are aging/elderly and infirm but the contents can be applied equally to anyone, anywhere at any age.
Usually as I read books I love to underline the things I want to remember and the things I find interesting and noteworthy....IF you were to pick up my copy of this book you would find my pen marks scrawled on most of its pages! This book spoke to me on numerous levels and It resonated with my own thoughts and feelings on how I have tried to navigate through the various emotions and questions and scenarios we have faced with Heni...and will yet have to face...having lived with the prospect of her death over such a prolonged period of time...
It also resonated to me on a professional level (as a Physiotherapist/Naturopathic Iridologist/Health advocate) and made me shudder at the lack of dialogue and understanding that frequently occurs by medical professionals about the wishes and desires of those who they are trying to help.
The book is a mixture of Atul Gawande's personal experience with patients (as a surgeon) and research, mixed together with his own personal recollections of the experience of the deaths of both his grandfather and father.
He compares the aging and death of his own grandfather.... (who was looked after in his old age by extended family, retaining the freedom to shape his life and experience maximum independence and autonomy to the very end)... to today's medical model (where the elderly are left with a "controlled, supervised, institutionalized existence...devoid of anything they care about".)
He points out that pressure is ever in the domain of the clinician to do more and more for their patients... and the goal of medicine today is often to repair health and extend life (with overly invasive treatments such as surgery, chemo and intensive care) at the sacrifice of quality of end of life. He suggest that clinicians are afraid of doing "too little to help" and most have no appreciation that doing more and more can be as equally a terrible mistake as doing too little.
"too much can be no less devastating to a persons life"
He states that as peoples capacities decrease via age or serious ill health, the medical professionals should resist the urge to "fiddle, fix and control" and realize that people often have higher priorities than simply prolonging their lives and need "sustenance to the soul"
He navigates his way through the emotional minefield of decline and death with the questions of .... How and when do you accept the battle is lost?
Do you fight on at the chance of worsening the short time you have left or how do you know when enough is enough?
When do you switch from fighting for time to fighting for other things people value?
One of the quotes that I loved the most from the book was this one below:-
"You don't want Custer, you want Robert E Lee. Someone who knows how to fight for territory when it can be won and how to surrender when it can't.... someone who understand that the damage is greatest if all you do is battle to the bitter end"
Nature always has the "final victory" and "death is the natural order" and seemed to be accepted in generations past but Atul points out that Medical science has given doctors the ability to push ever against the limits of what are possible and they often believe that it is their job to "ensure health and survival."
We also as the recipient patients are at fault as we imagine we can "wait till the doctors tell us there is nothing else they can do....but rarely is there nothing more that doctors can do."
At what point then do you fight on and at what point do you accept and decide to make the most of the time you have left... enjoying the basic comforts and the fullest possible life right now?
Atul covers The importance of discussions with doctors and family about end of life preference and how these "break-point discussions" can contribute to a greater quality of end of life with individuals dying in peace and some semblance of control. It takes a great deal of courage as Doctors, individuals and families to bring up such a tender heart wrenching subject but by doing so it can spare families a great deal of anguish in the aftermath.
In short I was grateful to see Atul's thoughts, guidance and wisdom put into print and I hope that this book makes it on to the syllabus list of every type of medical school and establishment so that doctors and health practitioners everywhere understand the need to respect patient autonomy and good communication practice. I hope even more that it become a challenge to the health system and acts as a catalyst as Atul says to "refashion our institutions, our culture, and our conversations in ways that transform the possibility for the last chapters of everyone's lives."
This is an deeply insightful book and had me in tears on numerous occasions but I am so glad I read it. Hope you will be inspired to pick it up too.