How Medicine Changed Our Relationship with Dying
Certain questions stay with society generation after generation. Matters of death; matters of dying and mortality — answers to these ruminations remain elusive despite our yearning.
How should we take care of dying loved ones? Should we keep the dying alive as long as possible if the cost is their comfort? How do we manage sickness if a cure is impossible?
In Being Mortal: Medicine and What Matters in the End, Atul Gawande — accomplished surgeon and writer — answers these questions through reflections of his own experiences as a medical professional and with anecdotes from nursing homes, hospices, and his personal life.
Gawande illuminates death with thoughtfulness and wisdom. He explains that living well and dying well are one in the same, and how we must improve the latter.
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
The medicine of just a few decades prior would be considered impotent in 2019. Diseases of the heart and lungs were particularly deadly in the early 1960's and 1970’s. Treatments of the time were less effective in mitigating resultant traumas of heart disease, stroke, and emphysema. Today, medicine has reached a point where these once-devastating diseases are neither — necessarily — deadly nor crippling.
These advances have done wonders for life expectancy. Many of us reading this have likely encountered someone well into their 80's or 90's; I’ve personally met several people over the age of 100. But for us to live longer than humans have ever lived before means we must take care of elderly people longer than we have ever had to before. With this new-age longevity in mind, Gawande raises several questions.
With people living longer than ever before, how can we allow the aged to age and die gracefully? And how should we balance longevity with comfort?
Should we place more gravity in keeping the dying comfortable or alive as long as possible?
Despite the medical success story of new-age longevity, these questions cannot be overshadowed. Ever-evolving technology and medicine are letting us live longer, though our approaches to long-term treatment and care for those who become dependent (which, eventually, is everyone) have developed at a much slower rate.
Through interviews and anecdotes in nursing homes and hospices, Atul Gawande posits that a high stressor for the elderly is a fear of “being a burden” on their loved ones. This is fueled further by a desire for individuals to remain as independent and autonomous as possible, in spite of the physiological detriments associated with aging.
To be frank, Gawande explains, our society isn’t set up all that well to care for the aging and dying for long periods of time. Keeping people alive is a magnificent step in medicine and for humanity, though taking care of dependent elderly for an extended time remains a challenge.
Traditionally, before the development of nursing homes and advanced medical practices, aging was a community affair. Parents would take care of their children and the favor was returned as the children became adults taking care of their aging parents. Life expectancy was shorter and medicine was worse at postponing the physiological declines of aging. Aging (and dying) was a familial responsibility and care-taking was the only option, given that life-extending medicine hadn’t arisen yet.
Then, with the societal and medical developments of the 20th century, hospitals and nursing homes sprouted across the Western world and aging became less of a community affair and more “outsourced.” People live longer, certainly, though care-taking has taken a backseat to medical treatment.
Taking care of the aging and dying, Gawande argues, should take salience over keeping someone alive via medical intervention. Comfort and enjoyment are an oft-overlooked part of medical treatments, though they should take center-stage. Sacrificing happy aspects of life to stay alive is not an easy undertaking, and people have varying degrees of willingness to sacrifice.
As Gawande put it,
“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
Gawande places a great emphasis on understanding the expectations of the patient and the families of the patients. Rather than listing out everything medically possible to maintain a beating heart, Gawande explains that hopes, expectations, and fears should be hashed out first.
Dying well isn’t about hanging on to the final strands of life if it means suffering and battling while languishing in just how painful life has become. Well-being, meaning, and happiness should be accounted for as the most valuable currency. Gawande explains further:
“It is not death that the very old tell me they fear. It is what happens short of death — losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, ‘Old age is a continuous series of losses…’”
While medicine has achieved profound, astonishing victories and achievements in the previous decades, this should not be the foundation for end-of-life care. An unwavering belief in medicine’s ability to fight death can result in arrogance and a lack of recognition of the nuances of aging: there is more to life than simply being alive.
“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all….Medical professionals concentrate on the repair of health, not sustenance of the soul…yet…we have decided that they should be the ones who largely define how we live in our waning days.”
Gawande explains further how hospice care and palliative care remain tantamount in allowing people to live and die well. Helping dying patients achieve a comfortable state — as opposed to forcing them through arduous treatments accompanied with a promise of staying alive longer — is the focus of the second half of the book. Gawande shares the story of his own father’s death and the difficult decline beforehand due to a spinal tumor.
Primarily, he explains, it is acknowledging the uncertainties rather than maintaining arrogance in the guise of confidence that helped smooth the process with his father. Gawande asked his father, also a surgeon, “How much are you willing to go through to have a chance at living longer?” This honest, difficult question helped Gawande’s entire family achieve peace of mind.
By giving his father autonomy up to his final moments, Gawande explains that, at our core, we all desire to be the authors to our own narrative that is our life. Medical professionals aren’t there to rewrite or interfere with our respective narratives, but they are there to help facilitate our own telling of our finale. Doctors must focus on helping the dying and aged tell their own endings to their stories.
In an altogether moving, resonating book, Atul Gawande details how society — the people and the doctors that comprise it — must reevaluate our view of aging, dying, and end-of-life care. Living well requires dying well, and part of dying well is allowing those on their deathbed to continue authoring their own story up to the final pages.
As Gawande poignantly puts it:
“All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.
This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life — to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.”