With the proliferation of inpatient care services across the world and especially in the global south, a large majority of people die in hospitals. However, many people suffer poorly managed pain or other physical maladies and live out their final days feeling undignified and burdensome, especially to their loved ones.
Few of us have tried to imagine how different things might be when the end is nigh. Not many of us have grappled with the immutable fact of our mortality. When someone we love or ourselves is diagnosed with a life-threatening illness, the foremost thought we have is death. Few of us will have the bold confidence and privilege of Frank Sinatra to face the end “And now the end is here; And so I face the final curtain; I’ve lived a life that is full.”
Death is not the worst thing that can happen to us or our loved ones. The most troubling and painful thing is to see someone we love suffer and die painfully. In his book “The Best Care Possible: A Physician’s Quest to Transform Care Through End of Life”, Ira Byock attempts to provide candid insights to the dangers that confront seriously ill and dying people and coping with the pitfalls that trap so many.
Byock argues for the need to transform the way we care for seriously ill people and support caregivers. Byock observes that when it comes to caring for people with advanced and terminal illnesses, “our social systems are so broken and our health care system is so dysfunctional and, frankly, neglectful that it would be easy to become furious”.
Throughout history, mankind mostly died quickly and probably easily. Byock writes that dying has become a lot harder over the last 50 years. Byock argues that serious, chronic illness is an invention of the late 20th century, the fruit of scientific advancement.
But Byock argues, compellingly, that our epochal success in forestalling death impacts individual and family life in ways we have yet to understand. Byock writes that our society must take into account the new normal – serious illness, physical dependence, senescence, and senility.
It is a paradox that while so many treatments now work and many people survive longer it is not easy to die well. Clinicians have coined the term “illness burden” for the legion aches, pains, and disabilities that come with diseases and the side effects of treatment. Byock observes that people are more ill before they die today than ever before.
Byock observes that significant medical advances in prolonging or replacing organ functions have not been matched by proficiency in preserving comfort and quality of life for the sick or their families. Byock notes that even in excellent medical care facilities clinicians do not posses the skills needed for comprehensive caring. Physicians are over burdened by treating pain or nausea, ward visits, coordinating appointments for tests and transmitting information among various specialists.
The incessant focus on treatments for sustaining life can leave someone who is living with an advanced disease physically uncomfortable, feeling lost and confused, not knowing how to get through each day or how to prepare for the end. It is no wonder that a consistent finding of public surveys is that nearly everyone wants to spend their final days at home, surrounded by those they know and love.
According to Byock, 50 percent of deaths in the US happen hospitals and nearly 40 percent of those who die in hospitals spend their last days in ICU where they are sedated and restrained so they do not pull down breathing tubes, intravenous lines or catheters. Dying is tough!
Evidently, a transformation is needed in the way our society and culture -- not merely our health care system -- cares for the terminally ill and supports family as caregivers. In the short-term and urgently, effective advocacy by patients and families is needed to avoid common but deadly goofs, avert suffering, and prevent regrets.
Knowing what to expect, what to demand, and what limitations to accept can lessen the burdens of care giving, illness and certain death.
This book is crying out to be read!