During my 20 years as an Air Force officer, I experienced and witnessed untold misery and suffering. However, as I enthusiastically embarked on my new career as a nurse, I was unprepared for the scope of suffering I have witnessed in patients who were clearly at the end of life, and were not going to survive despite medicine’s best efforts.
Frequently decisions for patients without medical decision-making capacity are made after discussions between the physicians and families. However, what often emerges is a sense of false hope, which leads to unnecessary diagnostic tests and myriad interventions. Unfortunately, during this end-of-life struggle it’s the dying patient and society who bear the burden. Sparse health care dollars are being used inappropriately.
Although death has a contract with everyone, Americans – who I think tend to have unrealistic expectations concerning life’s natural end point – attempt to renegotiate the deal, often leading to unnecessary suffering.
Ninety-four-year old Alice was transported from the nursing home to the hospital because she had abruptly stopped eating. Upon her arrival at the hospital, Alice’s medical problems included dementia, small cell lung cancer, pneumonia, sepsis (a potentially fatal blood infection), severe dehydration, a urinary tract infection, kidney failure, and respiratory distress. Doctors worked diligently over the next couple of weeks to stabilize Alice, giving her antibiotics, putting her on intravenous fluids, balancing the out-of-whack electrolytes that were causing her kidney failure, and providing feedings via a tube in her stomach as she had lost the ability to swallow. Many in the medical community see these measures as futile.
While efforts to save Alice were actually prolonging the dying process, Alice, in her noncommunicative state, was suffering, as evidenced by the perpetual grimace on her face and the numerous groans and moans she emitted whenever she was touched or physically adjusted. Because of her tentative medical state and low blood pressure, doctors were reluctant to initiate a variety of comfort procedures, including providing Alice with opioids like morphine, which can relieve physical distress but may hasten death.
As talk of “death panels” and “rationing” continue to stir debate over the government’s role in health care, an encounter with a patient who is suffering in the midst of terminal illness is an all-too-common occurrence. To illustrate what it is like to be a nurse in the “trenches” at the bedside with patients who are at the end of life and suffering, where the focus is on unrealistic goals rather than comfort, I evoke a quote from Primo Levy, who survived the holocaust in Auschwitz: “If we know that pain and suffering can be alleviated and we do nothing about it, then we ourselves are tormentors.” As nurses, it is “we” who spend 99% of the time with patients, having developed an unabashed competency in recognizing patients’ physical and emotional needs, which are sometimes lost on physicians and certainly on families.
As a palliative care nurse practitioner at a major teaching hospital in New York, I wish to go on record as saying that many patients at the end of life whose families opt for inappropriate life-sustaining treatments are subjecting them to an indignity and suffering akin to being tortured. Patients in a semiconscious state, unable to advocate for themselves, are often thrust into a netherland of discomfort and painful interventions as they slowly unravel physiologically toward their demise. Many nurses, who spend countless hours at these patients’ bedsides, often experience moral distress and conflicted emotions, seeing the futile life-sustaining treatments as pointless and cruel.
Whereas dying is seen as a disease and death as the physicians’ failure to enact a cure, studies, including this one in the New England Journal of Medicine, document that unnecessary tests, procedures, and hospitalizations in the final months of a patient’s life often cause emotional and physical stress and pain, effectively negating any benefits associated with the treatments.
In addition to the emotional and physical costs, there are the financial costs to society to be considered as we underwrite medically futile treatment. As patients get sicker, more and more high-tech and expensive procedures are employed, which drive up the costs.
The Centers for Medicare and Medicaid Services estimates that 5% of the beneficiaries who die each year take up 30% of the $446-billion annual Medicare budget. About 80% of that money is spent during the final month, often on mechanical ventilators, resuscitation and other aggressive life-sustaining care. More often than not, the aggressive steps taken to save someone’s life are futile.
As a patient advocate, I want to lessen the unnecessary suffering and astronomical costs associated with end-of-life care in this country. Mindful that the subject of how best to honor and care for those facing death due to terminal illness or old age has always been controversial, I trust the traditions of hospice and palliative care, which both work to keep dying individuals in a state of dignity and comfort without resorting to extraordinary and ultimately futile measures. For a broader, more comprehensive view, I invoke a Buddhist teaching: “for we are alive, therefore we will die.” This is the simplest, most obvious truth of our existence, and yet very few of us have really come to terms with it.
Eugene Cauvin a palliative care nurse practitioner and a doctoral student at Pace University in New York.