By Donna Burke, Guest Author
The text reflects the author’s views only, and we neither endorse or disapprove of its content but rather publish it to foster the conversation about end-of-life issues.
In 1900, almost everyone died at home, surrounded by family, perhaps in the presence of the family doctor and family clergyman. In fact, it was not unheard of to die in the very same room as the one in which you were born.
Today, we die not only away from home, but, most often, also inside the multi-billion dollar business of hospital medicine. We die surrounded by IV drips, EKG machines, and dialysis machines that speak for us (and about us) in digital tones, monotonous beeps, and ear-piercing shrill alarms.
When the patient died at home, his family doctor relied on direct observation and hands-on skilled examination of the body. The doctor actually touched the patient. He also listened carefully to the patient’s subjective reports, such as descriptions of pain, weakness, or loss of appetite.
Nowadays, with medical technology, the doctors must consult the machines instead of the patient. Echocardiograms or ultrafiltration machines do the talking for us, making it seem as if hospital death is something that is happening around us, rather than to us. Patients are now defined in biomedical language of disease, and as such, have little recourse but to view themselves as victims of their own bodily processes.
Disease vs. Illness
Contemporary medical textbooks define disease as a disorder of bodily functions and systems. But there is a very crucial difference between disease and illness.
- Disease is a breakdown and malfunction of the organs and physical system of the body.
- Illness is the patient’s personal experience. It is subjective and includes fear, anxiety, pain, loss of identity, anger, and confusion.
While the doctor may be focused on the disease process and control of the symptoms, the patient may be focused on entirely different things, which may be much more important to them.
Hospital: A Foreign Country
When we enter a hospital, it is very much like entering a foreign country whose language and customs are strange to us. We are awakened at 4:00 a.m. for lab work, and then, unable to return to sleep, must wait several hours for breakfast to arrive. If we need assistance for the bathroom, we must call for the nurse, and it could be thirty minutes to an hour later before s/he arrives. The hospital routine is arranged around shift changes with little regard for the patient’s comfort level.
Ironically, the word “hospital” derives from the word “hospitality,” yet, the rituals of the hospital are not at all hospitable. The aim of the hospital is to keep feeding the machines the data that they need. The doctors and professional staff are familiar with the hospital culture, but most often, the patients are not. Yet, the majority of terminally ill patients spend their final days in this strange land.
Death in Our Culture
I do not believe that Western medicine’s failures in treating the needs of the dying are the fault of the doctor and professionals. We, as the patients and family members also contribute to the culture that denies the natural process of death. Our contradictory wishes present not only a dilemma for doctors, but also a painful dichotomy for the patient and family. In Western culture, we want it both ways. We want the doctors to employ every state of the art intervention to save us, yet we still want death to be natural.
Death does not have to be this way. The experience does not have to be veiled in mystery or fraught with confusion, guilt, indecision, and fear. Cultural attitudes towards death shape how different societies respond to death and dying. For example, some ancient societies, such as the early Egyptians, saw death as a transitional passage to another realm of life. Others, such as primitive non-technological cultures, include casual discussions about death in daily interactions, and children and family participate in funeral rituals and the preparation of the body.
How We Die
By contrast, in the United States, there are few rituals associated with grieving, and the handling of the body after death is turned over to paid professionals, from the efficient and sterile way in which the nurses are trained to handle the body from the time of death to the way the morticians prepare the body with cosmetics, hair styling, and clothing to give it the appearance of life. The funeral directors, undertakers, morticians, and other paid professionals all work together to keep the “messiness” of death away from us.
Western cultures tend to view death as a feared enemy that can be defeated by modern medicine and fancy high-tech machines. Our language reflects this battle mentality. We say that people “combat illness” or “fall victim” to illness after a “long struggle.” And we use euphemistic language to describe death, such as s/he is “no longer with us” or has “passed on.”
It is time for us, as a culture, to recover the traditional acceptance of death as unavoidable.
Today, death as a natural experience has been removed from most American’s lives. There is no witnessing of the birth/death cycle as it would have been in our country even less than 100 years ago. There is less connection with others and few rituals to guide behavior.
In addition, our society excludes the aged and sick from our day to day lives. When our older relatives become frail, it has become the norm to find care in professional residential settings, or nursing homes. This makes the dying process foreign, something that we do not witness directly, or incorporate into our daily lives. Such is not the Hindu way. Nor, for that matter, is it the Indian way; nor the Asian way; nor the Eastern way. It is the modern Western way.
In Western societies, one learns of death in the abstract, so to speak. The knowledge of death is in the head; neither the heart, nor the eye experiences it directly. When death does occur, the dying and their loved ones are too often segregated, left stranded alone for what is, after all, the second most profound experience in a human being’s life.
A New Attitude
Dr. Atul Gawande states in his book Being Mortal, “This experiment of making mortality a medical transaction instead of a natural experience is only decades old. It is quite young, and the evidence is that it is failing”. It is not too late to embrace a new attitude, one that pulls back the veil of what we may find scary and disturbing, and bravely learn to accept the truth of our mortality.
I think that modern medicine can learn a hard lesson from Leo Tolstoy’s The Death of Ivan Illyich.
“What tormented Ivan Illyich the most,” writes Tolstoy, “was the deception, the lie which they all accepted, that he was not dying, but was simply ill, and he only need quiet, and undergo a treatment, and then something good would happen.”
We fail ourselves, and our dying when we perpetuate this lie by refusing to discuss death with dignity, on the patient’s terms, as an option for the terminally ill in our Western hospitals. It is time for us, as a culture, to recover the traditional acceptance of death as unavoidable, and as a very important part of our lives, and to honor the emotional needs of the dying, and also of the grieving family left behind.
- Gawande, A. Being Mortal: Medicine And What Matters In the End. Metropolitan Books. Henry Holt and Company. New York. 2014.
- Kleinman, A. The Healing Narratives: Suffering, Healing and the Human Condition. Basic books. New York, New York. 1989.
- Laungani, P., Young, B. “Implications For Practice and Policy.” In: Death and Bereavement Across Cultures. Parkes, C.M., Laungani, P. & Young, B. ed. Routledge Publishing. New York, New York. 1998.
- Tolstoy, L. The Death of Ivan Illyich. Bantam Dell. New York. 1981.
About the Author
Donna Burke is a mental health therapist in Dundalk, Maryland. She recently lost her husband after a long and painful illness and experienced first-hand how modern medicine can postpone death indefinitely, many times at the expense of the wishes and dignity of the patient.