Monthly Archives: February 2014

Arthur Kleinman has a beautiful essay in the most recent issue of The Lancet entitled How We Endure.  He writes,

for billions of poor people in our world, enduring pain, misery, and suffering is not only a description of their everyday reality but the moral message that they share with their children. And this is true as well of many people in rich societies who must endure seriously debilitating illnesses, disabling accidents, terminal organ failure, end-stage neurodegenerative conditions, and the final days of dying. While the media constantly conveys hopeful messages that cures are around the corner, and that even where treatment is futile people can still be “happy”, families and individuals struggle to come to terms with the genuine reality of enduring the unendurable. The acceptance of mortality, loss, and minds which are afflicted without the means of repair may be part of the wisdom of a career in medicine, but it doesn’t fit well with the upbeat media messages of the contemporary culture of consumer desire, personal social ambition, and technological ascendency over pain and suffering.

 

Poverty, joblessness, migration, and other social realities of our era, along with the experience of major natural disasters, nonetheless revivify for many the importance of striving to endure. For professionals who complain of burn-out and for family caregivers who exhaust their own inner resources, for those involved in humanitarian assistance, and for many other people faced with unrelenting hardship, and physical and emotional burdens, it might prove useful to reconsider the value of enduring in human experience. Instead of asking why patients, caregivers, physicians, aid workers, and other health professionals burn out, suppose we ask how they endure? And I mean by endure withstand, live through, put up with, and suffer. I do not mean the currently fashionable and superficially optimistic idea of “resilience” as denoting a return to robust health and happiness. Those who have struggled in the darkness of their own pain or loss, or that of patients and loved ones, know that these experiences, even when left behind, leave traces that may be only remembered viscerally but shape their lives beyond.

 

When I was a medical student at Stanford University during the early 1960s, I was given the responsibility of holding the hand and trying to calm a young girl who had been severely burned and had to go through the daily horror of debridement of her wounds in a whirlpool bath. She was in great agony, screaming with pain and fear. It was my assigned task to calm her and control her wild thrashing. Day after miserable day, I tried to do some good, to help her, but completely failed. Her suffering was an assault on my sense of agency and harrowing to watch. So I asked the little girl how she endured the fearsome procedure, because as I admitted I could barely endure accompanying her. She looked at me and to my complete surprise told me what she was experiencing while grasping my hand harder. She went on each day to tell me more about what her experience was like, and in the process became calmer and easier for the staff to work with. She endured because she had to endure in order to go on living. And she helped me endure what had become a devastating clinical role. Neither of us was resilient, in the contemporary meaning of the term; she withstood and kept me going as well. She taught me more in those moments than any book or clinical mentor could have done.

 

In caring for his wife during her experience of the ravages of Alzheimer’s disease, the late writer E S Goldman explained that he endured because the caregiving was there to do, it had to be done. The commitment to the other person was fundamental. That is how I felt about caring for my own wife who suffered from the same destructive disease; and I have heard many family caregivers of relatives with progressive and terminal conditions voice the same moral sentiment.

Kleinman’s piece reminds me of the many heroic caregivers I see in my practice almost everyday.  They know their loved ones’ physical and mental limitations from conditions like Alzheimer’s, Parkinson’s, or congestive heart failure will only become more severe.  Yet they nonetheless lovingly give their all to provide their husband, wife, father, or mother the best life possible.  Kleinman writes that 

the sinologist Michael Puett describes an ancient Chinese tradition that teaches that no matter how arduous we work at building human purpose and value in our lives, we are always ultimately defeated by all the negative things in the world. Nonetheless, our task is still to cultivate what is most human and domesticate what we can in the face of failure. . .

 

Our cultural images today seem blinded to life’s limits and dangers. While emphasising human flourishing and celebrating happy outcomes, they obscure the reality of human conditions. Physicians can work hard at achieving the best outcomes, while still acknowledging that their patients, like they themselves, must prepare for lives lived under some degree of constraint. This means that each of us at some point must learn how to endure: the act of going on and giving what we have. And we need, on occasion, to step outside ourselves and look in as if an observer on our endeavours and our relationships—personal and professional—to acknowledge the strength, compassion, courage, and humanity with which we ourselves endure or help to make bearable the hard journeys of others. These are the qualities that make acceptance and striving, if not noble, then certainly deeply human—worthy of respect of ourselves and those whose journeys we share.

 

Read Kleinman’s entire essay here.

In an article entitled Culture, Illness, and Care, medical anthropologist Arthur Kleinman writes about the important distinction between illness and disease.  He defines diseases as “abnormalities in the structure and function of body organs and systems.”  In other words, disease is what is actually physically wrong with the body.  In contrast, illness is what patients experience when they are sick.  This is profoundly influenced by multiple factors such as a person’s culture, social situation, and the meaning attributed to symptoms.

Kleinman writes that the focus of modern medicine tends to be disease. Doctors are trained to find a distinct abnormality in the structure and function of the body and provide an effective remedy.  This approach works for straightforward problems such as appendicitis and pneumonia that have a clear biological cause.  It is much less useful for conditions that do not have a clear physical etiology.  This is a significant limitation since about 50% of visits to the doctor are for complaints without an ascertainable biologic base.

In some cultures, physical symptoms are the most acceptable way of expressing psychological problems such as anxiety and depression.  When I volunteer at a local clinic that provides care for immigrants and refugees, I try to always ask about the stories of the people I see.  In learning about their life journeys and hardships, the causes of otherwise inexplicable physical symptoms, such as headaches, chest pain, and shortness of breath, often reveal themselves.

I have asked patients suffering from illnesses without a straightforward diagnosis and treatment how physicians can be most helpful.  They tell me that sometimes doctors become frustrated when they cannot find a diagnosis and cure for what is wrong.  I must admit that I have at times felt nervous seeing somebody whose symptoms I cannot understand and effectively treat.  But many of these patients tell me they understand that doctors cannot always figure out what is wrong.  They don’t expect us to be miracle-workers.  What these patients tell me they most appreciate is a physician who will not stop caring and trying to be helpful.