by Rebecca Gagne-Henderson PhD, APRN, ACHPN
We find ourselves in an era of frequent and normalized overtreatment of the very old and very ill. This overtreatment contributes to frailty and debility, which leads to the institutionalization of those unfortunates to lay and wait for death to come. Overtreatment includes interventions that have little to no benefit to the patient. It is also associated with treatments which are performed without the patient’s fully informed consent (1). We all, clinicians and patients alike, need to recognize when it is appropriate to stop overtreatment and allow a natural death.
To illustrate overtreatment, I would like to tell you a story of a patient I once had many years ago. She was in her 9th decade. She had dementia, was bed-bound, non-verbal, and was receiving feedings via a gastric tube. As I reviewed her medical history, I found that 3 months prior she had been admitted through the emergency department from her nursing home with Vancomycin-resistant Enterococci Sepsis (VRE). Her gastric tube was the source of the infection. She was taken to the ICU, intubated and placed on pressors. Three weeks later she was released back to her nursing home. Five weeks later she was readmitted to the ICU from her nursing home with Methicillin-resistant Staphylococcus aureus Sepsis (MRSA) from her “bedsore”, a stage III decubitus ulcer. She repeated the arduous course in the ICU and was returned to her nursing home.
Two days later as the nursing home staff were providing incontinence care as she was turned in her bed the nurse’s aide heard a crunch and felt her hip shift. Once again, she was sent to the hospital emergency department. Fortunately, the ED MD recognized her and stated that this was enough and sent her back to the nursing home with a referral to hospice. Often, rather than doing things for the patient, we are doing things to the patient.
This is when I became involved in the case. I had a meeting with the husband, and we discussed hospice and the physiology of the dying process when people are no longer able to eat and drink. I explained that we were only prolonging the dying process and in so doing we were causing suffering. He agreed and asked for the artificial nutrition and hydration (ANH) to be stopped and that we allow a natural death for his wife.
As I went to enter the patient’s room her distraught nurse blocked the door and said, “You want to kill her”. We went to the medication cart area to talk. She expressed her belief that not providing ANH was tantamount to killing.
We spoke of the patient’s poor quality of life. There was a picture of the patient on her medication record. The image showed a face contorted with pain and suffering.
It looked very much like Edmund Munch’s iconic painting “The Scream”. I asked her if she felt her patient was suffering and if what we were doing was contributing to the suffering. She wept and said, “Yes, I guess the best thing would be to never have started the feedings”. I would have to agree with that conclusion. The practice of overtreatment produces devastating societal and personal effects along with evidence that patients whose wishes are to forego aggressive treatment are frequently ignored (2, 3).
Death was once a communal and familial event, most commonly occurring at home (4, 5). Modern dying has confounded death and dying awareness with technologies such as Cardiac Pulmonary Resuscitation and Mechanical Ventilation, Continuous Renal Replacement Therapy and other forms of artificial life support. In addition, the advent of antibiotic therapies has separated the aged from what was once known as “the old man’s friend”, that being pneumonia or other infections (5). Infections were once the most common way that people died naturally. Whilst these discoveries have proven wonderful in decreasing mortality, especially in the young and otherwise healthy, it results in overtreatment of the aged. Now, the majority of deaths in the older population occur in the hospital after long bouts of frailty and multiple chronic conditions (6). This predisposes the old to a long and prolonged dying process (5, 6).
We know that conversations with a palliative care provider can reduce 30-day readmissions and increase the number of patients admitted to hospice (7). There can be an analogy drawn between these conversations and the Greek myth of Charon, who delivers the newly dead across the River Styx. This myth tells the only way one enters the afterlife is if someone places a silver coin beneath the tongue of the dead to guarantee safe passage by the ferryman, Charon. If there was no coin, it is believed that their souls were left to wander the banks of the River Styx aimlessly for all eternity.
It could be said that conversations about prognostication, personal goals, quality of life and wishes are much like the coins in the myth. Such conversations provide the understanding of the patient’s circumstances required to have a strong Sense of Coherence, that is a sense that the world and their circumstances are understandable, manageable, and have meaning (8, 9). With a healthy Sense of Coherence one is better equipped to move forward through the dying process in a state of peace. On the other hand, those who do not have the intuition or the information regarding their condition and circumstances find themselves wandering the riverbank aimlessly and faltering without the proper preparation to recognize what the future holds.
Through twenty-seven years of clinical experience many patients I have cared for appeared to be dying with a “Devolving Sense of Coherence”, that is finding themselves seemingly in the unexpected process of dying and feeling unaware that this was to be anticipated (10). They had not prepared themselves for death (i.e.; life review, remoralization, legacy building, reconciliation). To say that these patients had less than peaceful deaths is an understatement. Palliative sedation was required for five patients in my care, and all of them received sedation for existential reasons and were in a state of Incomprehensibility (10). Before conducting my PhD study, these five patients were never seen in the light of Incomprehensibility, rather they were described as having terminal agitation. My work suggests that there may be possible interventions that could lead to increased Comprehensibility as one advances toward death, that is understanding of the prognosis, ability to plan and manage the expected death.
I believe that a Sense of Coherence, Salutogenesis (the source of well-being) and end-of-life for older people may very well be a developmental phase worthy of examination independent of other life phases. Birth and dying are the only two unifying events that all of humanity share. They are periods of the utter unknown to those in the midst of the experience. Whilst there is little, if any, intervention possible to assure the being in the womb, we have a great opportunity to comfort and facilitate growth for those facing death.
1. Noah BA, Feignson NR. Avoiding Overtreatment at the End-of-Life: physician-patient communication and truly informed consent. Digital Commons @ Western New England University of Law. 2017.
2. Wong SPY, Kreuter W, O’Hare AM. Treatment intensity at the end of life in older adults receiving long-term dialysis. Archives of Internal Medicine. 2012;172(8):661-3.
3. Pasman H, W. R, Kaspers PJ, Deeg JH, Onwuteaka-Philipsen BD. Preferences and actual treatment of older adults at the end of life. A mortality follow‐back study. Journal of the American Geriatrics Society. 2013;61:1722-9.
4. Toolis K. My father’s wake: How the Irish teach us to live, love and die. New York, NY: Da Capo Press; 2017.
5. Blauner R. Death and social structure. Psychiatry: Interpersonal and Biological Processes. 1966;29(4):378-94.
6. Field D. Awareness and modern dying. Mortality. 1996;1(3):255-65.
7. Gagne-Henderson R, et.al. Using the Rothman Index and Length of Stayas a Trigger for Palliative Care in the Medical Intensive Care Unit and Step-Down Units. Journal of Hospice and Palliative Nursing. 2017;19(3):232-7.
8. Antonovsky A. Health, Stress, and Coping. San Francisco: Jossey-Bass; 1979.
9. Antonovsky A. Unraveling the Mystery of Health. San Franciso: Jossey-Bass Publishers; 1987.
10. Gagne-Henderson R. Learning How Older People Form Sense of Coherence through an Interpretation of Their Experiences of Decline and Serious Illness during a 30-Day Readmission: An Interpretive Description. Lancashire, UK: Lancaster University; 2021.