The Power of Death

Contemporary Reflections on Death in Western Society

Maria-José Blanco, Ricarda Vidal, Maria-José Blanco, Ricarda Vidal

• Publisher: Berghahn Books
• Year: 2014
• ISBN:
  9781782384342
• Edition: 1
• Topic: Sciences sociales
• Subtopic: Mort en sociologie

The social and cultural changes of the last century have transformed death from an everyday fact to something hidden from view. Shifting between the practical and the theoretical, the professional and the intimate, the real and the fictitious, this collection of essays explores the continued power of death over our lives. It examines the idea and experience of death from an interdisciplinary perspective, including studies of changing burial customs throughout Europe; an account of a"dying party" in the Netherlands; examinations of the fascination with violent death in crime fiction and the phenomenon of serial killer art; analyses of death and bereavement in poetry, fiction, and autobiography; and a look at audience reactions to depictions of death on screen. By studying and considering how death is thought about in the contemporary era, we might restore the natural place it has in our lives.

PART I

DEATH IN SOCIETY

1

LIFE EXTENSION, IMMORTALITY AND THE PATIENT VOICE

Catherine Jenkins

So, today there are machines to breathe for the patient, medications to sustain blood pressure, tubes to provide nutrition, equipment to perform the tasks of the heart, lungs, kidneys, and bladder. Of course, using these devices is imperative if a patient might recover. The question is their usefulness for a person who will never be cured. (Kiernan 2010: 171)

Throughout human history, people have tried to sustain youth and grasp immortality. Dating from the third century, the Alexander Romance tale, ‘The Water of Life’, tells of a healing spring. In the Middle Ages, the ‘Fountain of Youth’ was said to exist in the elusive territories ruled by the mythical Prester John. The Travels of Sir John Mandeville, published in the late 1300s, includes a tale of the author drinking from the well of youth in India. In 1513, Ponce de Leon went in search of the ‘Fountain of Youth’, but died eight years later. Sadly, none of these historical or mythological figures is still breathing, so it is safe to assume that none was successful in his quest to find a cure for death. But it does point to an assumption that the living tend to make about death: everybody wants to live for as long as possible. Certainly today’s medical technologies can maintain essential bodily functions, and all outward appearances of life, long after the brain’s neurons have stopped firing. But does this prolong life or simply extend the dying process? Is the quality of life suffering because of our fixation on the quantity of life?

What is this persistent need we have to overcome our own mortality? In 1973, cultural anthropologist Ernest Becker published his Pulitzer Prize winning book, The Denial of Death. As Becker states his thesis: ‘the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity – activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man’ (xi). We repress the knowledge of our mortality and instead we become the heroes of our causa sui, we hope immortality projects will provide a sense of purpose and meaning in our lives. According to Becker, even scientific advances are delusional immortality projects. Becker argued that ‘a project as grand as the scientific-mythical construction of victory over human limitation is not something that can be programmed by science’ (285).

Most would admit, however, that the extension of human life expectancy that has taken place over the last few hundred years is a real and positive advancement. On a recent episode of The Joy of Stats: 200 Countries, 200 Years, 4 Minutes (2010), medical doctor and statistician, Dr Hans Rosling found that prior to 1810, life expectancy globally was less than forty years. United Nations’ statistics now register the life expectancy in almost all countries as surpassing forty years, with many developed nations, including the UK, offering a life expectancy closer to eighty years, effectively doubling what it was two centuries ago (2007: 80).

This significant increase in longevity can be attributed to many things: initially, the improvement of public sanitation, and better availability of clean water and good food. Scientific advances pushed life expectancy even further by increasing the understanding of our biological make-up, as well as giving us tools to help combat potential threats from disease. In the last half of the 1900s, medical science leapt forward in both diagnostics and treatment, with laboratory, imaging, pharmacological and surgical advances to prolong life.

The late Dr Roy Walford sought to optimise human biology by developing a calorie-restricted, high-nutrition diet. In a 1996 interview, when asked what he thought the maximum life expectancy was for a human, he responded, ‘between 110 and 120,’ but added, ‘If you started calorie restriction early in life, I think the survival curve could be greatly extended to 140, 150, 160’ (in Mitchell 1996). But Walford was only talking about optimising our given biological potential.

Medical science is now pushing even further in the areas of genetics, stem cell, cloning, and other research – all towards the goal of life extension. For instance, since 1990, molecular biologist John Tower has been exploring the aging process in fruit flies. Part of the genetic programming of most biological organisms includes a determination of life span. By increasing the amount of superoxide dismutase, a naturally occurring anti-oxidant also present in humans, Tower has found a way to override the genetic determination of death, dramatically increasing life expectancy; his fruit flies live forty per cent longer than untreated fruit flies.

While the work of doctors like Walford and Tower is impressive, as of yet, such research has only been able to extend life, not eradicate death. There are, however, those who think that such a breakthrough is inevitable, indeed immanent. Dr Jerry Lemler is the CEO of cryonics company Alcor Life Extension Foundation. According to Dr Lemler, ‘in the next generation, or two at the latest, people will not have to die anymore’ (2006). Lemler’s statement underscores the assumption that, unless they are suffering from suicidal ideation due to some form of mental illness, everybody wants to live. But is this necessarily always the case? Do we all consistently suffer from what Becker called ‘death anxiety’ (1973: 22) or is that an assumption made by those of us who are relatively young and healthy? Is this perspective necessarily shared by the aged and ill?

Certainly there are those who continue to rail against death to their last breath. Physician and palliative care advocate, Dr Ira Byock states, ‘Avoidance of death is pervasive in our society […]. Denial of death doesn’t get easier as people get sicker; sometimes it gets more entrenched’ (2010). But there is another side to this coin, one which is rarely acknowledged: those individuals who move past denial into acceptance and sink peacefully into death. Patients who believe and accept that they are dying seem to lose their death anxiety and just want to get on with it. In Dying Well: The Prospect for Growth at the End of Life (1997), Dr Byock recounts the story of one of his patients, Maureen Riley. After test results confirmed her worsening condition, she said: ‘I’m a bit disappointed that I’m still alive’ (Byock 1997: 224).

Dr Diane Meier, award-winning Director of New York’s Center to Advance Palliative Care, recalls her ‘light-bulb moment’, when she realised how far medicine had strayed from its foundational goals of healing and relieving suffering. In 1995, while on rounds, Dr Meier noticed a patient in restraints, struggling to try to remove his feeding tube. When she asked about the patient, she was told that he had a malignant lung mass that had metastasised to his brain. When first diagnosed, several months previously, the patient had refused treatment. Having witnessed the demise of his wife from cancer two years earlier, he elected not to put himself or his adult children through the same ordeal. He simply wanted to go home and die. Unfortunately, contemporary human death is rarely that simple. In this case, the patient’s son called emergency services after finding the man unresponsive where he had fallen on the kitchen floor. Once the man was readmitted to hospital, the medical machine took over and he lost his right to decide his own future. Although he had made his wishes plain earlier, he was no longer in a position to reiterate his acceptance of death. Because of increased eating difficulties, medical staff inserted a feeding tube. During brief moments of consciousness, the patient removed the tube – seventeen times. Although he was no longer able to verbally refuse treatment, the patient was sending a very clear, strong message. Yet each time he pulled out the tube, medical staff reinserted it, eventually restraining both his hands and feet to prevent his interference. When Dr Meier asked the intern in charge of the patient’s care why they insisted on reinserting the tube when the patient’s actions made it clear that he did not want treatment, the reply was, ‘Because if we don’t do this, he’ll die’ (in Marantz Henig 2005). Perhaps, but perhaps the medical staff in this case over-estimated their power over death.

When predicting death, Dr Byock notes that ‘accuracy is almost impossible’ (1997: 201). Regardless, the patient’s repeated desire to forego treatment, even with the understanding that it might mean death, was ignored by medical personnel intent on artificially prolonging his life against his will. This is an example of the Hippocratic notion of doing no harm becoming twisted into an urge to forcibly make the body live longer, regardless of the psycho-emotional damage wrought, and regardless of how contrary these actions might be to the patient’s wishes. Dr Meier typifies this as ‘well-intended but harmful intervention’ (in Marantz Henig 2005).

While a tube may be inserted temporarily to aid patients recovering from illness or surgery, nasal or gastric feeding tubes are sometimes introduced into the terminally ill. A lack of interest in food is a normal biological response to long-term illness and imminent death. Elderly or ill animals often stop eating as a precursor to death, so why is it not medically permissible for humans to do likewise? Dr Byock calls this loss of appetite ‘part of the “wisdom of the body”’ (2010) and suggests that ‘Dying of a progressive inability to eat is, probably, one of the most natural and physiologically gentle ways to expire. In the context of advanced illness, hunger is rarely, if ever, a source of discomfort’ (2010). Rather than automatically inserting a feeding tube when a patient stops eating, he suggests that patients and their advocates ask: ‘“What purpose will the feeding tube serve?” If the answer is, “I won’t allow mom to die of starvation,” the subsequent question might be, “What would it be acceptable for her to die of?”’ (2010).

Robin Marantz Henig, author of ‘Will We Ever Arrive at the Good Death?’, writes:

What we’re addicted to […] is the belief that we can micromanage death. We tend to think of a ‘good death’ as one that we can control, making decisions about how much intervention we want, how much pain relief, whether it’s in the home or the hospital, who will be by our sides. We even sometimes try to make decisions about what we will die from […]. But often, our best-laid plans can go awry. Dying is awfully hard to choreograph. (2005: n.p.)

Marantz Henig recounts the story of one patient who was intent on controlling his demise. This geriatric patient was suffering from high blood pressure, kidney failure, and Parkinson’s disease. While it was unlikely that he would regain health, his multiple conditions were being managed with a dozen different medications and regular dialysis treatments. Angry at his continued decline, the patient stopped everything – the medications and the dialysis. Both the patient and his doctor assumed that he would die of kidney failure, organ shut-down being a fairly peaceful way to go. After three weeks without dialysis treatments, his kidneys retained some level of function, but because of his uncontrolled high blood pressure, he had a stroke. This led to a very different sort of demise, a much less peaceful one than the man had planned for himself. While we have gained a measure of control over our health and can manage a multiplicity of complex illnesses, death itself remains somewhat unpredictable.

Contemporary medicine allows us to control ailments that a generation or two ago would have meant certain death. We routinely perform coronary artery bypass surgery to relieve the heart. We prescribe anticoagulants and blood pressure medication to reduce the likelihood of strokes. We insert feeding tubes when patients stop eating. We introduce vaccines and antibiotics to control infections like influenza and pneumonia, which used to be called ‘the old man’s friend’. Dr Byock states that ‘Malnutrition and infection are two of the most natural ways for people … to die’ (2010), but if we are controlling these potentially lethal conditions, what is it acceptable to die from? ‘In deciding that a loved one will not be allowed to die of malnourishment, a family is making a tacit decision to let the person die of something else’ (Byock 1997: 180). Is it even acceptable to die? Is the patient’s voice being heard amidst the incessant clamouring of expert voices? Are doctors always treating patients in good faith that their health will improve or just going through the motions because they have the tools at their disposal?

The tension between a patient who has accepted his or her mortality and the physician, or larger medical community, who perceive death as a failure to maintain life, points to a fundamental disconnect. This urge to prolong life at all costs can unfortunately translate into a well-intentioned, but potentially cruel, prolongation of the dying process, rather than a meaningful extension of life. Stephen P. Kiernan cites studies indicating that ‘more than 90 percent of Americans want limits on their medical care at the end of life, no long-term feeding tubes or ventilation, for example, if they are never going to regain consciousness. Even more people want their pain managed aggressively’ (2010: 172). Unfortunately, this wish directly conflicts with physicians’ concerns about legal action if they neglect to do everything medically possible to prolong life, as well as concerns about having their prescribing practices examined if they are perceived as being overly generous with pain medications. Thus, the quantity of life, rather than the quality of life and its value to the patient, takes precedence.

Medical advances have caused statistical changes in causes of death over thirty years, beginning in 1976. According to an American National Vital Statistics Report, sudden deaths by heart attack and stroke decreased by 61 per cent and 71 per cent respectively during this time; over the same period, however, slow deaths from cancer and severe respiratory diseases increased by 22 per cent and 77 per cent respectively (in Kiernan 2010: 163). While death used to be a sudden occurrence, it now resembles a manageable health condition. A long, slow death is a process requiring careful planning, reflection, and decisions. While the extra weeks, months, or years are a blessing for tying up affairs, optimising time with loved ones, and working towards the resolution of any long-term disputes, it may also create additional burdens. The patient and/or family now need to decide on the best living arrangements, how to finance any additional care requirements, how to keep the patient as comfortable as possible, and how to optimise the remaining time. Seeing a loved one through the dying process is a rare and emotionally charged event; there is pressure to do it correctly, to make no mistakes.

The prolongation of life is due, in part, to the movement of the dying process from the family home into the hospital, what late sociologist Norbert Elias called the ‘rational institutionalization of dying’ (1985: 86). In the United States, between 50 and 60 per cent of people die in hospitals, even though the vast majority would prefer to die at home (Kiernan 2010: 167). A hospital death removes many choices from the patient and their family; visiting hours are limited, patients eat institutional food on a prescribed timetable, they are no longer in control of their environment, and their medical options – including the dispensing of pain medications – may be determined by others. The 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (the SUPPORT project) revealed ‘that 38 per cent of patients who died in hospital spent ten or more d...