Every day we live, we are each one day closer to our own death. A truism, of course, but one that we tend to suppress in the rush and tumult of other demands on our attention and time. Until, one day, we can no longer pretend it away.
It's sheer coincidence that WisePiper posted his poignant GBCW today, on a day when I was planning to write a brief review of Atul Gawande's latest book, Being Mortal. (If you haven't already read WisePiper's diary, I urge you to do so, and to leave a comment there if you are so inclined.) But if, as my daughter and many others will tell me, there are no sheer coincidences--then it is indeed an opportune moment to talk about this book and its themes.
Please join me after the curlicue for more discussion of this book.
Gawande is already an accomplished medical doctor, a surgeon, and a highly-acclaimed writer. At the age of 40, in 2006, he was named a MacArthur Fellow; here is a portion of the statement the foundation released with the announcement of the honor:
In articles published in professional journals and mainstream periodicals, Gawande scrutinizes the culture, protocol, and technology of modern medical practice from the perspective of a dedicated and empathetic professional. In all his published work, he brings fresh and unique perspective, clarity, and intuition to the field.
His interest in promoting a kind of health care that is more responsive to the real needs of his patients as human beings, not as cases, is only one of the attributes that makes him so appealing and successful. Gawande also writes very clearly and well about subjects that most people find daunting, especially about terminal illness and death and the failure of contemporary Western medicine to treat with compassion people who do not have the possibility of cure.
Being Mortal, Medicine and What Matters in the End continues his effort to make some real differences in the practice of medicine, both from the doctors' POV and from the patients'. It's an attempt to kickstart a more serious discussion of how we choose to live the last stages of our lives as we approach our inevitable death, whether that death arrives in old age at the end of a long decline or somewhat earlier as the result of illness. (He does not directly address the concerns over sudden, unexpected death from accident or injury, though some of the same points he raises would apply.)
As is his habit, Gawande interweaves stories from his patients to illuminate the larger questions he wants to raise. The longest and perhaps most troubling story is his account of the last days and weeks of a young woman who was diagnosed with Stage IV lung cancer just before she was about to give birth. The young woman and her family, understandably shocked and dismayed by the diagnosis, sought every available allopathic treatment, but they all failed quickly, with no discernible effect on the advances of the tumors. Her death, only a few months after her diagnosis, came in a way that none of them would have wanted--but no one close to her, including Gawande, knew just how to help her avoid the last traumas and have a peaceful passage instead.
There are alternatives: hospice, sought early and used consistently being the most significant. But there is still a lot of uncertainty about how to use that option, I can testify from personal experience in the case of my father's recent decline. Had we asked more questions earlier, perhaps his passing could have been more calm, less panicky for all involved.
One of the personal stories Gawande references is the decline and death of his own father. A vigorous man with a thriving medical practice of his own, the father had to retire somewhat earlier than he expected due to a spinal cord malignancy. In a telling passage, Gawande relates how hard it was for his father, his mother, and himself--all three of them doctors--to absorb the news that the oncologist was conveying. Information that you have a disease that will kill you or someone you love is hard to hear, no matter the education and experience you may have. It may be hard to tell that to a patient, and yet it's even harder when the news comes for you or your dear ones.
I surmise that Gawande is attempting to sway public policy with this book, albeit indirectly, by encouraging a cultural shift away from avoidance of these hard questions and toward honest and compassionate discussion of them. The medical profession in particular may well need to reframe its perspective on patient treatment, away from the effort to preserve life at all cost and toward a standard of care that preserves dignity, comfort, and simple pleasures of daily living as long as possible. Given the inertia and resistance to change of large institutions, it's likely that we as patients and as human beings who will all eventually die will have to bring pressure to bear so that we can have the lives we wish for up until the moment of our death.
After my father's death, my oldest niece (who is a family practice doctor) and I agreed that the whole family ought to read Gawande's book, though at that time neither one of us had done so. Reading it now makes me wistful that I didn't read it a couple of years back, when it might have helped me make some changes on my father's behalf. This book would accomplish a great deal if other families, like mine, would make the effort to confront the reality of being mortal and engage in these hard discussions before they are absolutely necessary. We could, after all, still get hit by a bus. But even if it is the cancer that gets us, it would behoove us to think about the manner of our passing.
My questions to you tonight therefore: What does a "good death" mean to you? What do you need or want to do to have that outcome for you? Do your family members know and accept your wishes? Do you have these expectations in writing?
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
REVISION from Tuesday morning:
In my haste to post this diary last night, I neglected to say anything about how my own brush with mortality as a result of cancer has affected me, thus making my title a bit of a misnomer. Belatedly, I’d like to remedy that omission.
My Stage IIIC2 endometrial diagnosis, in early 2011, was bad enough, but since I was young and in otherwise good health it made no sense at all not to do whatever I could to stay alive. That conviction was challenged a few short months later, when despite having been subject to several months of arduous chemotherapy, my cancer cells had taken up occupancy in my lungs. The oncologist didn’t call it Stage IV; she called it “disease progression.” Regardless of the term used, it was terrifying and overwhelming news. I and my family feared the worst, and soon. My oncologist recommended that I start on Megace, an artificial hormone that would decrease the amount of estrogen available to my tumor cells. In most cases, that remedy was merely palliative, though some of the patients in my oncologist’s practice had had better results. Still, at that point, the word “cure” was off the table.
It was then that I really threw myself into getting well. I’ve documented that adventure in many of the MNCC diaries I’ve posted since September of 2011. Fortunately for me, I got lucky. The combination of remedies I had worked well for me, and my tumors began to shrink and disappear. I’ve been officially NED since June of 2012.
But my family and I did not behave as if we lived in a Hallmark-card kind of fantasy in those intervening months. (You’ll understand, I’m sure, if I prefer not to share any specifics.) We’re still dealing with the aftermath of that time, and it likely will take quite a while longer to restore a good emotional and spiritual baseline for us all. That’s a top priority, of course, as is my effort to regain the ground I lost in terms of my physical strength and stamina. I’m about to become a Bikram yoga student, and my older daughter and I are planning to take part in a 10K/half-marathon this December—in Jamaica! (This project is a fundraiser for my local Cancer Support Community, so you will be hearing more about it later.)
I feel more than lucky to have the time to do all of these things. If I had indeed continued to suffer from disease progression; if I had had no good results from all my treatments; if I had indeed died in 2012—that outcome would have been catastrophic not only for me but for my husband, my daughters, and my extended family and community. I would not have had a peaceful or reconciled passing.
Yet my scare in 2011 wasn’t wasted or without benefit. In between exploring alternative and complementary remedies, I started this group and this series. I continue to be immensely grateful to everyone who stops into these diaries, whether I write them, or ZenTrainer, my co-administrator and partner, or someone else in the MNCC. The dialogue we have in these diaries is a testament to the compassion we really do have for each other, pie fights in other venues notwithstanding.
I’m glad to be here now, in other words; to have had this reprieve—my own personal “Groundhog Day” kind of do-over—that enables me to do better this time around with living, and eventually with dying. At some distant date, I continue to hope. No metaphorical desk-clearing in the offing for me any time soon. ;)
Thank you, Rescue Rangers, for picking up this particular diary. For the comments alone, it's exceptional IMO. Thank you, community at large, for the Rec List as well. Gawande's book conveys an important message that deserves wide circulation, and I appreciate the forum that Rec List standing offers toward that end.