“There is no escaping the tragedy of life, which is that we are all aging from the day we are born.”
This book, written by physician Atul Gawande, is a very interesting perspective on aging, quality of life, death and dying. It is divided into 8 chapters, each worth of discussion by both health professionals and individuals. As a registered nurse with over 20 years of health care experience, I think that this is a book that everyone should read. The text will start conversations, spark consideration and hopefully, help individuals and their family to make decisions about quality of life with support (as needed) from health professionals. Having worked with seniors, in long-term care homes, the community, primary care and in palliative care areas, this book resonates with me both personally and professionally as we all consider quality of life issues.
Ch 1: The Independent Self
Gawande introduces that surviving to old age has improved with advances in nutrition, sanitation and medical care. He uses real family and patient examples to describe the value on independence, while the Western world may be quick to consider nursing home care once and individual requires assistance with activities of daily living and may have safety concerns. This is contrasted with the care provided to his own grandfather, from India, who was revered and cared for by who valued his role as patriarch. He described how is grandfather remained active, continued walking and died by falling off a bus at the age of 110 years of age. he lived “as he wished and with his family around him right to the end.” Not everyone can care for family with home and the decision to consider alternate care arrangements are difficult for families and their loved ones who value their independence and autonomy. In my own experience, it is very difficult to allow competent people to make decisions to live at risk when we value the safety of our loved ones balanced with them living the life that they strive for.
Ch 2: Things Fall Apart
As medical care improved, health of individuals also improved as “medicine has pushed the fall moment of many diseases further outward” and more individuals live to old age. It was interesting to read that “by the age of sixty, people in an industrialized country like the United States have lost, on average, a third of their teeth” and I wonder if this is more typical in the United States than in Canada. Gawande speaks strongly about the importance of the practice of geriatric care which is said to be lacking in Ontario also.
Ch 3: Dependence
With aging, life can be fragile and transitions can be difficult. There is a great range of services available dependent on care requirements but the loss of freedom can equal a huge sense of loss. The author spoke of the historical implication of poor houses which were described as grim places akin to incarcerations. My own grandmother remembers the local poor house which was located on the same location as a very popular long-term care home. Even at age 92, she remembers this stigma. Seniors have a right to choose and Gawande repeated the story of the senior who refused to leave his house near Mount Saint Helens in 1980. I remember, as a teenager, reading this story in a National Geographic and learning how he ended up buried under lava but lived out the end of his life on his own terms, in his own home. It sometimes becomes easy for families focus on the safety of care homes which based on medical models rather than promoting independence.
“Hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hospitals lobbied for help , and in 1954 lawmakers provided funding to enable them to build special custodial units for patients needing an extended period of recovery. That was at the beginning of the modern nursing home.”
Ch 4: Assistance
As a mother of 4, i found it quite interesting that the author shared that the chance of avoiding nursing home care relates to the number of children you have and that having a daughter is crucial to the help that will be received. I remember seeing residents with no visitors compared with those with big, supportive families who visited frequently during my shifts at my first nursing job in a long-term care home. Perhaps this is part of the reason for my larger family! Historically, families have had a stronger role in care but this has changed in a generation of dual income families who are responsible for sandwich generations. Gawande described a family who experienced their father moving in when he required more assistance. The daughter ended up feeling very overwhelmed as she balanced her dad, her family, her job and maintaining a household. This example led to a discussion on Assisted Living which was originally meant to eliminate nursing homes and promote freedom and autonomy to residents. This type of living was meant to give individuals freedom to make choices including control over their own schedule. Assisted Living buildings started expanding yet the autonomy started to be eroded into continuum of care models with safety and potential lawsuits curtailing independence and autonomy.
Ch 5: A Better Life
Quality of life is seen as key. An example was provided of a home with an innovative physician who proposed and successfully added a large number of pets including dogs, cats and birds which engaged residents, created excitement and made the residents happy. Decreasing institutionalization and residents live in household environments was reported to create significant satisfaction of residents.
“All we ask is to be allowed to remain the writers of our own story. That story is ever changing.”
Ch 6: Letting Go
This chapter discusses palliative and end of life care along with the difficult decisions made regarding oncology, when to treat and when to provide comfort measures. He spoke about the number individuals dying in intensive care units being given heroic measures to prolong their lives losing the importance of a quality of life. He shares the importance of hospice care in striving to ensure that individuals live the fullest lives they can, at the moment and provides vivid examples of fierce battles to treat metastatic cancer causing harm to individuals without necessarily prolonging their lives. The importance of advanced care planning is essential and helps make decisions during a period of calm that will guide decisions when complications arise. These discussions can be challenging for health professionals and families alike but are essential conversations for future planning.
“people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
Ch 7: Hard Conversations
The author shares that institutional care is being rejected, more people are dying at home and looking for quality of life solutions. He discusses his own father’s cancer diagnosis and the struggle that the family had in making decisions regarding treatment decisions. He talked about how physicians tend to practice in models of either a paternal relationship, telling patients what is best for them; an informative relationship sharing the facts and figures; and more rarely, an interpretive relationship where the doctor helps patients determine what they want and share in the decision making.
Ch 8: Courage
It is clear that Individuals need courage when dealing with their circumstances and making difficult decisions – taking treatments that offer the best quality of life and avoiding those that do more harm. Individuals want “to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind”.
This book had terrific, heart wrenching examples of individuals and families dealing with challenging palliative decisions. The author used very personal examples (including his own father) throughout the book. He shared how difficult it was for his own family to make decisions even though his father, his mother and himslef were all physicians and well versed in health care. It is a difficult reality but all of us have a finite time on earth and need to consider our advanced care plans. Reading this book is a good start to opening the dialogue with family and friends in a time where assisted suicide has been frequently debated in the media.
“Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone.”