Jim Shalom
Jim Shalom

The Modern Ordeal of Dying Slowly

I am a nursing home physician. Since nursing homes represent the last chapter in the lives of our residents, part of my work is dealing with them as death approaches. For the elderly and frail, dying in a nursing home tends to be different from dying in hospital: there are fewer medical interventions, more nursing and personal care, and the process takes longer.

Here are two examples of end-of-life situations our home has recently contended with.

Chaya
Chaya, a 98-year-old wheelchair-bound Holocaust survivor with one adult daughter and numerous grandchildren, had been a resident of our nursing home for more than nine years. Over time, she experienced gradual mental deterioration. When I first met her several years ago, I encountered a spunky individual who still knew what she wanted, insisted on things being done her way and adamantly refused unnecessary help. She rarely asked to see me, but when she did, she insisted on being seen immediately and on having her problem thoroughly attended to, as she saw fit. For many years her trajectory was one of extremely slow and gradual decline.

She had a Holocaust survivor’s mindset. Over the years I have encountered many Holocaust survivors who have coped with end-of-life disease and infirmities with extraordinary and ferocious determination. I concluded that these patients had not survived the hell and dangers of World War II simply by chance, but because of a singular determination to live that had accompanied them into old age. In dealing with their illnesses and age-related infirmities, I repeatedly encountered situations in which they overcame, or at least delayed, physiological exigencies.

Here is an example of Chaya’s resilience: when the nursing home experienced a COVID outbreak last January, she was one of the residents infected. Despite being almost one hundred years old and frail, she did not develop any symptoms of COVID. Like all the other asymptomatic infected residents, she had to be transferred to another nursing home equipped with a special Corona ward. Once deemed no longer actively infected, many of the other residents who were transferred out returned with new medical problems, such as pressure sores. Chaya, however, came back to us in the same condition as before she left.

I would keep her daughter informed, usually by telephone, of any new problems. Each time I phoned her, I could sense the daughter’s heart skipping a beat from anxious concern for her mother’s welfare. Despite Chaya’s advanced age and overall frailty, and the realization that her mother’s time would come soon, her daughter had difficulty reconciling herself to the inevitable. Nonetheless, she was adamant that her mother should not be referred to hospital and agreed with our emphasis on comfort care.

Eventually, time caught up with Chaya, and her downhill course was visibly apparent. She began eating less, and refused all attempts by her family, our dietician, or other staff members to improve her food intake. As a result, during her last year, her weight dropped by five kilos. She became less socially responsive, spent more time in bed, and slept more. As there were no associated new medical problems, no medical intervention could help. While an internist might disagree and assume the presence of a possibly treatable disease underlying her deterioration, I would assert that this was simply an age-related progression. Her time had come. Consequently, what she needed and received was increased personal care, comfort and support.

During her last few days, the family did, more or less, come to terms with the fact that she was dying. A prolonged dying process helps families to reconcile themselves to the inevitability of death: they can see that their loved one is suffering, has a poor quality of life and no hope of a better outlook. Notwithstanding, I still see many family members who have difficulty accepting the approach of death, who find themselves emotionally shocked when it occurs.

In taking a step back and reflecting on the past nine years, Chaya’s daughter found  accompanying her mother’s slow, relentless deterioration onerous emotionally. Nine years was a long time to observe her mother’s decline, which culminated in a retreat into her own world and total dependence on supportive care. The final stage, in which little positive quality of life remained, with Chaya only minimally aware of family and events around her, were the hardest for her daughter.

The results of the care she received presents an ethical-existential conundrum: assuming she had received optimal overall care, the net result was a long-drawn-out final chapter that included prolonged poor quality of life.  Should that be our goal? Was that the intended outcome of her treatment?

Sara
Sara was an 88-year-old wheelchair-bound resident with advanced dementia and diabetes, who, though she could no longer speak, related to her surroundings and appeared to recognize her son and daughter, who visited her often. She would smile and grab my hand when I sat beside her. She had been with us for three years and was stable medically. Our main tasks were adjusting her diabetic medication in accordance with her sugar levels, ensuring she took her medicines (she was not always cooperative), and attending to her personal care needs (ADL – the basic activities of daily living). A month before the end she suffered a stroke that made it hard for her to swallow food. Her supportive family refused permission for the insertion of a nasogastric tube (zonda) or a feeding tube directly to her stomach (PEG). Consequently, she was treated with fluids via infusion. Gradually, she rallied, and was even able to eat a little. Nonetheless, her course was stormy. She went on to develop intermittent fevers and decreased oxygen levels, which we assumed were caused by aspiration (swallowing into the lungs rather than the stomach, causing infection). She was treated each time with antibiotic injections (avoiding the necessity for her to swallow medication), oxygen supplementation and inhalations. Her devoted son asked us to refrain from invasive measures, and certainly not to refer her to hospital. She would stabilize for a few days, and then develop a fever again. A course of relapse and recovery like hers often occurs in people of her age. She held on for about a month before dying peacefully.

During that last month, treatment questions arose:

  1. Her son had asked us to refrain from invasive measures. He did not want her suffering prolonged. What defines an invasive measure? Is providing an antibiotic active? What about infusions? Oxygen? Inhalations?
    All these can prolong life but can also relieve suffering caused by an untreated infection.
  2. Since our goal was comfort treatment only, should I have been ordering blood tests? On the one hand, Sara was deteriorating, and it was apparent that she would not hold out much longer. On the other, if she did have a problem such as a mineral (electrolyte) imbalance from not eating or drinking properly, theoretically that imbalance could have been contributing to her poor condition and being unwell and may have been treatable within the confines of the nursing home provided her electrolyte levels were monitored.

The dilemmas presented above characterize the particularity of end-of-life situations in which both intervening or refraining from doing so can have simultaneous positive and negative consequences, with the ultimate balance of advantages and disadvantages impossible to calculate in advance. Moreover, not all considerations are purely medical: some depend on the value system and goals of treatment. In deliberating, for example, referral to hospital in a case that is not clear cut, referral may be preferred if the family’s priority is to keep the patient alive for as long as possible; if, on the other hand, the objectives are comfort and relief of suffering in a familiar environment, non-referral may be preferable.

These dilemmas extend beyond hospital referral. Sara’s son asked us to refrain from active treatment so as not to prolong his mother’s suffering. However, “actively” treating an infection with antibiotics, oxygen, inhalations and fluids, while possibly prolonging life, can also relieve suffering, such as shortness of breath due to infection.

Susan Sontag, the American writer and philosopher, wrote in 1978 in her book Illness as Metaphor: “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.

There have been dramatic health trend advancements developed over the past 100 years. One is an impressive continuous reduction in deaths from acute illnesses, such as infections. A second is more effective treatment of destructive diseases like cancer and heart disease that enables patients to live much longer, even when a cure is unattainable. Another advancement is improved stabilizing of chronic illness such as diabetes and hypertension to the point that complications may be reduced for a long period. These positive developments allow people to lead a fuller, less medically compromised life for extended stretches of time.

The capacity to provide nursing-type care has likewise improved in recent decades. If in the past a patient needed to see a physician to have their blood pressure or sugar levels checked, these tests can now be performed with home-use devices. And finally, extensive personal care has also become more prevalent. Assistance with eating, showering, walking and toileting by a professional can be provided in various contexts, from home help for a few hours a week to a live-in caregiver or institutionalized care.

Better comprehensive care – medical, nursing and personal – has led to increased longevity.

Unfortunately, these positive developments can be double-edged. The plus side is that people are living much longer. That, in itself, is no small achievement. At the turn of the 20th century, life expectancy at birth was only 40-plus years; by midcentury, it was around 70 (more for women), and most recently life expectancy reached 76 years for men and 81 for women. We can now prolong life, but at the cost of additional accrued disease. We can delay death, but never avoid its inevitability.

Let us now consider the quality of extended life rather than just its length. In dealing with chronic illnesses, early treatment can typically confer normal or almost-normal quality of life. However, decades later, when complications set in, as, sadly, they often do, many patients find themselves with significantly compromised quality of life. The relentless processes of aging and advancing disease eventually will lead to a situation in which the need for medical, nursing and personal care intrudes more and more. This intermediate situation in which one is alive, but suffers significantly compromised quality of life, can continue for years. As in one of the cases presented above, swallowing food may become difficult. Cognitive deterioration and dementia, to the point of not recognizing family members, is more common. At the end of life, patients can spend 8-10 years seriously ill and cognitively compromised. That is a long time for a family member to accompany a person who is slowly dying.

Family members do not want their loved ones to die, but seeing them in an extended state of limbo, at times for years, is also very painful. Although physiologically alive, these patients, who have extensive needs, lack many of the characteristics we associate with personality and living. The emotional strain of caring for family members in such a situation can stretch even the strongest of people.

This emotional quagmire is described clearly and poignantly in Chekhov’s novella The Peasant: “Whenever there is someone in a family who has long been ill, and hopelessly ill, there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.”

The concept of “their time has come”: While death often comes unexpectedly to the point that we perceive it as premature, in other cases, such as that of Chaya, my impression is that the life’s odyssey has run its natural course, and the time to die has arrived. In these instances, acute medical interventions may postpone the inevitable for days, or perhaps, at most, for a few weeks. I personally believe that this situation, when it occurs, signifies that the comprehensive care provided allowed the person to live close to their full potential.

COVID aside, modern Western medicine has gradually shifted its emphasis from dealing with acute problems to stabilizing chronic illness and slowing the progression of destructive diseases. Consequently, as people live much longer, they carry a greater cumulative burden of chronic illness, with its associated multiple follow-ups and medications, especially towards the end of their lives. These people have a greater need for long term involvement on the part of family members, as, apart from medical stabilization, nursing and basic personal (ADL) support are also necessary. Dilemmas regarding what is beneficial and what is not will continue to beset us in end-of-life situations. The earlier joy of family members of having these people alive and well will, for many, be sadly supplemented by extended emotional turmoil later. Factors that can ease this turmoil for both patient and family include good symptom control, placing the emphasis on care rather than the futile pursuit of cure, and learning to judge the situation not by results (which invariably decline) but, rather, in the knowledge that the patient has received the best care possible, and that their wishes were respected insofar as possible.

In closing I should add that, since I work with the sickest and most problematic of the elderly, my perspective is somewhat skewed. Many people go on to live long, healthy, and mostly independent lives with their cognition intact almost to the very end.

 

About the Author
Jim Shalom is a specialist in family medicine, with interests in end-of-life care and the Israeli political scene. He resides in Galilee. He has spent most of his adult life living and working in Israel. He has studied and extensively followed the Israeli political scene including the Palestinian Israeli conflict.
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