When it comes to confronting death, doctors are as much at a loss as the rest of us. They are in the business of saving lives, not ending them. By instinct and by training, they avoid what Pauline W. Chen calls “the final exam,” the emotional challenges posed by terminally ill patients. Death represents failure. It asks unanswerable questions. Perhaps most vexingly, it threatens to crack the hard professional shell of detachment that medical training puts in place. In modern American medicine, death is everywhere and nowhere at the same time.
Dr. Chen, a surgeon specializing in liver transplants, is her own patient in “Final Exam,” a series of thoughtful, moving essays on the troubled relationship between modern medical practice and the emotional events surrounding death. She recalls episodes from her own medical training, and cases in which she was involved, to dramatize her misgivings about the “lessons in denial and depersonalization” that help doctors achieve a high level of technical competence but can also prevent them from expressing empathy or confronting their own fears about death.
In the current system, she writes, “few of us ever adequately learn how to care for patients at the end of life.” Among other things, “Final Exam” is a crash course in the specifics of human mortality. Dr. Chen begins with her first dead body, the dissecting-room cadaver that she disassembles over a period of many weeks, sometimes sawing and flaying, at other times gently separating minute muscle fibers and veins, as she learns to itemize every muscle and bone.
My brother died aged 60 of brain tumour. I remember to this day how awful it was. The curtains were drawn around the bed. The nurses ignored us until after he died, and then came offering tea and sympathy. His last few hours were a blank, as far as the doctors and nurses were concerned. We, on the other hand, had many questions. Was his calling out a sign of pain or morphine delusion? Would increased opiates to control his pain depress his breathing or not? (No one, in fact, came to offer this so the question was artificial.) Should we help him sit up or not? Not the least amazing thing was that both my sister in law and I, who are quite strong personalities, seemed mesmerised by his slow descent into death and did not insist on him being attended to and our questions answered. All this was 8 years ago, but well into the period when medical and nursing personnel were told that care of the dying is part of quality of life, and not a defeat, not to be blanked out. Alas. I believe that they still think of medical treatment as drugs and invasive procedures. Anything short of that is not regarded as real, scientific or worthwhile.
Dr Chen paints her perception of the experience of dying with a VERY broad brush. And Terry surely had a sad experience but I hope it was an exception. In my experience as a nurse and nurse educator for over forty years, death was an experience to be treated with both dignity and humility on the part of health care providers. As a student nurse I was taught to respect the human body in both life and death. Our human anatomy classes dealt with donated bodies who were treated lovingly and VERY respectfully–there was no fooling around in our classes; we were PRIVILEGED to have access to each body and treated each with what our professor called simple Christian thoughtfulness. Throughout my years of practice, I learned about the process of death from numerous patients who allowed my–via both them and their families–to participate in their experiences. I have watched a nurse “carry” a child through the process of dying; I have cried with a new mother over the death of one of her twins–and then laughed with her as we together dreamed of that baby’s experiences in the arms of Jesus! This was NOT because I was a Christian but rather because my colleagues truly view death as a personal human experience with the all the attendant emotions.
Yes, our perception of dying has changed but I would say most health care providers have striven to make it sweet and dignified and personal and spiritual–as best they can.
I also want to apologize to Terry for the treatment he and his family and his brother received. He is right: eight years ago was a time when we were supposed to be more enlightened about the dying process–after all, Elizabeth Kubler Ross came out with her theories more like forty years ago!
I hope Terry Tee and his family can forgive the nursing care they received. And I truly hope it was from none of my graduates or colleagues!
This article brings out a very important point, that is that there is never nothing that can be done to help the patient. I must say though that without the sure hope of Salvation through the blood of Christ shed at Calvary, I do not know how I would be able to confront this and help the dying patient.
In these stressful situations, the emotions of patient and family members run the gamut and are visceral and open. Grief, anger, fear, confusion. Kind words from nurses and physicians often are taken wrong. I have a saying that the words that leave the medical staff’s mouths often are not the same as those that go into patient and family’s ears. The nurses perhaps wanted to give the family space? Offering prayer for the patient and family is a good place to start for a Christian nurse or physician.
Further thoughts, if I may. I thank the above contributors. To Robroy I would want to say that yes, I myself, as on-call chaplain to a hospital, have experienced the flash of fury from family who were all churned up and looking for a lightning rod. However, in our case my brother, remember was calling out, which added to our distress and indicated his. Surely staff should have attended? One lesson that I drew from this – that is to say, from my own silence and inertia – is that staff should remember that sometimes the sheer weight of grief can make the relatives mute; therefore, do not assume that their silence indicates that they do not want help. To dr joan, I would say that I wrote an article about my experiences that day, which was published in a Catholic newspaper and used in training courses. This helped enormously in letting go. P. W. H. is absolutely right: there is always something that can be done, only, I would add, if not to help the patient, then to help the family in a harrowing time.
This just underlines the need for hospice care. After all, acute care hospitals deliver….acute care! The hospice team which has nurses and doctors trained in palliative care is able to meet the needs in every area. Most doctors and nurses are trained in acute care and don’t really know how to shift. Often the family won’t agree, thinking that this in giving in and not fighting for the loved one. Terminal, comfort, palliative care is not NO Care, but rather is appropriate care. I have seen families refuse and thus condemn their loved one to a very horrible death, not to mention the stress on the family. Factor in the government interference, and the legal climate, many thearipist just give up and go down the familiar road of full court press standard acute care. It doesn’t have to be that way.
A very interesting piece to me. I just this moment returned from the funeral home, where a 2 1/2 month old baby (SIDS) is being grieved. The mother and father are one-generation-removed from the Amish community (they elected not to remain Amish). When I arrived, there were probably 100+ Amish family members there, already. They do not just ‘visit’ and offer their condolences – the entire community grieves with the family, and then sits down to share time with them – – often hours and hours of time. It reminds me of the story of Job, where we are told that Job’s friends came to him, and sat with him for seven days, and “no one said a word. . .”
Clearly, formal education about death and the comforting of the living is not the only answer. The Amish forego education, but they understand ‘community.’ I was humbled to even be there.
I will always remember my Clinical Pastoral Education where I saw death on a daily basis. At Parkland Hospital in Dallas, the chaplains are in charge of “decedent care.” We are responsible for moving the dead from their rooms to the morgue and for checking them out from the morgue to the funeral home.
I also had to deal with the families and loved ones for the dead and dying. I found the doctors, nurses, and medical team all very supportive of the chaplains and willing to answer any medical questions that the family had. In one case, I remember that a family from Mexico had lost a son on a trip to the US. The whole family was involved in an auto accident and the son and grand mother were the only ones injured. They elected to stay until the grandmother was out of danger and then they left to return the son to Mexico for burial. Since the night that the son died was such a blur, one of the family asked if she could talk to the doctor again. (This was about 3 days after the event.) I took her down to the Surgical ER and asked the charge nurse to see if the doctor was available and, to my astonishment and relief, he was just ending a shift and agreed to meet with us. He answered the woman’s questions so she could try to answer the family’s questions back in Mexico.
I agree with Country Doc too, that hospice care is a great service for the dying. I know several hospice chaplains and I honor the work that they do. Understanding how people die and how families and friends handle the death – whether it is sudden or gradual – will help doctors and others be better at their jobs.
YBIC,
Phil Snyder
Having worked in senior care for lo these many years, I can say without a doubt that it doesn’t take much to minister to a grieving family in the hours before the death of a love one. It’s as simple as poking your head through the door and quietly saying to the family, “Is there anything I can do for you (or get for you, or anyone I can call for you?)” There is no judgment, no offering of condolences before the fact, no inane words of sympathy. Just letting them know you are there and that you care without being intrusive. Anyone can do it: physicians, nurses, med techs, chaplains, candy-stripers, orderlies. Doesn’t take any special education, just a sympathetic heart, a mind with common sense and a compassionate soul. They may never remember your name, but they will remember the way you treated them in their time of grief.
allyHM, of course you are right on a basic level. If you have a brain turmor it doesn’t take a neurosurgeon to be kind to you and help. Many will die and need little extra care, especially if they die at home. Usually they have a strong, well adjusted family to help them. But in the last five years we have seen tremendous changes in medical ethics and care. We doctors see the family destruction and often feel out of the loop. The loss of a Christian culture is devastating. I think we are more and more going to see the elderly and dying treated like a biological entity, like we see in the unborn holocast. And some churches are supporting this activity! I have worked in the nursing home situation over fourty years and am a Certified Medical Director of long term care and boarded geritician. Our nursing home is the greatest. I have been their medical director for 35 years. Two others in our community I refuse to use as they are corporate profit centers and in my opinion unethical. The best thing I have seen in the last five years is the hospice movement, but the crooks are already moving in. We Christians have a tremendous responsibility.