Dear Lit Loves,
Greetings! I've been in rapid-fire reading mode when it comes to newly released memoirs. I decided to read Being Moral: Medicine and What Matters in the End by Atul Gawande. Lately, I've found myself gravitating toward medical memoirs whether it be a book chronicling a strange medical diagnosis, personal palliative care experiences, or doctors ruminating on the fragility of life. Dr. Gawande is a surgeon at Brigham & Women's Hospital, a writer for The New York Times, and a professor at Harvard Medical School and the Harvard School of Public Health. Naturally, I was intrigued by what this well-trained doctor thought matters most when he encounters a patient facing a finite amount of time left to live.
First, Dr. Gawande readily admits that most doctors are hard-wired to overcome; to push for success in recovery, to fix and heal a patient no matter what. There is a realization though that there may come a time in a patient's life where pushing for healing and cure may have its limitations. With all the technology available today, it seems our medical culture is in a constant state of treating in a never-ending fashion when what might be best to do is to think seriously, especially when a patient is facing a terminal diagnosis, about what really matters to that patient at the end of life. It's the brutal reality most patients and families live in denial about: we are are born and we all will someday die. No, it's not a hot topic of conversation at the family Christmas dinner, but truly, we all should give it serious thought and make our wishes known about how we wish to live in the last years, months or days of our life.
Next, Dr. Gawande speaks about how most assisted living centers and nursing homes are really set up not to allow a person to continue to live in a meaningful fashion, but to basically assure families that their loved ones are being monitored and are safe. Most assisted living centers and nursing homes I've visited are quite institutionalized settings. You may have to share a room with someone. You may go from living in your own home to living in an unfamiliar place having to follow a schedule that is not of your own choosing, but rather what makes everything run efficiently for the assisted living center or nursing home. Now, there are centers where a person can maintain their own apartment, decide how they wish to spend their day, and pursue what they wish to accomplish on a daily basis whether that's a game of cards, reading in the library, taking a trip to a theatrical performance, or visiting with family and friends. And sometimes the children of an elderly person may decide that when it becomes too much for them to help with a parent's care, they want to find a place where their parents can reside that ensures someone else is monitoring the parent, giving medications, providing meals, and attending to falls. Sometimes when an older parent finds him/herself moving to an elderly living facility, it's really to give their children peace of mind as opposed to what might allow the elderly parent to maintain a sense of meaning and dignity and purpose in the latter years of their lives.
And then there is the palliative care movement which most people associate with Hospice, but I have learned that even hospitals have palliative care units as well. Most people are scared to death of palliative care because the automatic thought is okay, I'm there to die. I had one friend who refused to visit her grandmother in a Hospice facility because she was too scared of encountering a "house of death". Wow. I totally see it differently than my friend. I see it as a place where you can go, have your own independent bedroom and live out your final days on your own terms. A place where you don't have to continue suffering the side effects of chemo or radiation treatments, but you can enjoy whatever time you have left on your own terms and without pain. My father opted for in-house Hospice during his final days of life and I found it much more peaceful than the Intensive Care Unit of the hospital.
Finally, what I liked about this book is that Dr. Gawande speaks about the "hard conversations"we all need to have with our doctors, ourselves, and our closest loved ones. And it appeared that he learned how to broach these hard conversations with patients via a palliative care nurse who was well-trained in helping families sit down and talk about what matters to a person at the very end of life. It may not all be resolved or determined in a single conversation; it may take several conversations. Essentially, as a doctor or palliative care nurse you ask the terminal patient ( with family present) the following questions:
1) What do you understand is your diagnosis and what is happening to your body?
2) What are your greatest fears in the coming days?
3) What would be your goals for your life should your condition continue to deteriorate? Do you want to keep treatment going until the time of death? Do you want to be intubated if necessary and placed on a ventilator? Do you wish to continue to have more surgeries or radiation?
4) What would you be willing to sacrifice to keep on living? One woman realized her father wanted to keep on living only if he could continue to eat chocolate ice cream and watch sports on television. She was most shocked because she thought he would not be willing to endure leg paralysis which was a possible side effect of the difficult surgery he was to decide upon; however, he told her that even if both legs were paralyzed and he was assured he could still eat chocolate ice cream and watch sports on television, he was willing to go ahead and proceed with the surgery.
I guess the most important points I took away from reading this book included: have I thought about my own mortality? Have I thought about a terminal diagnosis and what treatments, if any, would I wish to endure and for how long? Would I want to be kept alive on a ventilator and feeding tube? What kind of resuscitation efforts would I want from doctors,nurses, and hospital staff if my heart suddenly stopped beating? And then I remembered that I had also completed a task that so many folks avoid and live in denial about: I had completed a living will; I had completed who I want as my healthcare power of attorney; I have had an attorney draw up a will for me; and I have had the hard conversation with my loved ones about what my wishes are when I do take my last breath. And that somehow gives me a sense of relief; a sense that I will have steered the boat to its final docking point; and that my loved ones will not have to sit and lament what I would want for myself in my final months, days, and hours. I guess the other important point I took away from this book is: have you and your loved ones thought about what you want for yourselves when you are in the home stretch of this marathon we call life? And it's one hell of an important and thought provoking inquiry. The worst thing a person can do is avoid the thought of mortality and communicating what they think to their loved ones. I can tell you that that produces a gut-wrenching and traumatic situation for loved ones and it's not a pretty place in which to find yourself.
Yes, I would highly recommend this book. It gives you a lot to think about and makes you think consider what gives meaning to your life, what's important to you in your final moments of life, and have you sat and discussed these important decisions with your own family and loved ones.
Best,
Grace
(Amy)
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