Life With Death

Surviving Mortality and Overcoming the “Crisis” of End-of-Life Care

 

When was the last time you thought about your own death? Not because the possibility of death was imminent – rushing toward you on a busy highway or following you too closely on a deserted street – but because you were interested: feeling curious or engaged in questions about what the process of dying feels like, how it comes about, or what it can mean to you.

We imagine and plan our lives meticulously; what we wear, how we eat, where we vacation, with whom, and for how long. Some people even revel in this planning. We want to really live, after all – seizing the day and getting the most out of the experience. But somehow the end of our lives, and the process of our death, escapes this sort of scrutiny and planning, despite – at least according to many – the final and most significant journey we will ever take.

When we do manage to think about death, particularly in Canada and the United States, we engage with it as a personal tragedy, social crisis, or mysterious entity to be avoided at all costs. This is in part because in our everyday thinking, death is set apart from life. We speak of “life or death situations,” and “matters of life and death,” as though these are separate and distinct categories, only coming into contact as opposing forces.

In fact, death is an integral part of life. At a cellular level, death is constant. Apoptosis, or “programmed cell death,” is the natural process by which cells terminate themselves. They die to protect other cells from infection and disease, or to generate growth, renewal, and development in a cell group. In any ecosystem, life and death exist on a continuum both within individual organisms and within the system as a whole. The process is inevitable and universal. All that lives must die.

But even considering how natural, unavoidable, and continuous the processes of dying are, the topic remains taboo and fraught. So, how can we imagine life with death, talking about our final days as part of (and not set apart from) our lives? How can we attempt to “survive” our own mortality – not by living forever, but by successfully taking our wishes for a pain-free and dignified life seamlessly into the final moments of it?

Reframing the crisis, proposing alternative ways to address death and dying

Through our practice of fatalizing death on both a personal and societal level, we perpetuate a so-called crisis of end-of-life care. News media now regularly warns us that a decline in fertility rates, combined with a steady rise in the average lifespan in industrialized countries, will create a disastrous scenario in which the financial and human resources of the population will be crushed by the heavy top of a demographic pyramid. We fear that the costs of healthcare associated with end of life will force us to make difficult decisions that demand an ethical standard that is yet to be set. While these concerns about demographic shifts and their consequences are valid, our hand-wringing about it all has only made things worse. The narrative of the “gray dawn” and its impending doom has taken away our power over the situation, allowing the crisis to be a thing in and of itself rather than a set of overlapping factors that we can understand and shape.

Crisis, as it turns out, is a word that not only connotes disaster, but also a critical juncture in the decision making process. It is an opportunity for change: a turning point after which things are no longer the same.

With this in mind, we offer some ideas about how to reframe the notion of crisis as it has been applied to end-of-life care. Our suggestions span the overlapping areas of culture, policy, and education, all based on the basic question: What would it look like to live in a world in which we could decide when and how we die?

Advancing a cultural directive

More and more services and online programs offer help in writing advanced directives that explicitly address how one wants to die. While these documents could provide essential information for doctors – saving time, energy, and heartache in the long-term – reports indicate that on the ground they are not particularly effective. The problem is simple: Documents get misplaced, forgotten at home, go unnoticed in a medical file, or are overridden because of factors that the patient could never have anticipated. What matters instead, as informed by health professionals, is the presence of a loved one and their capacity to advocate on the patient’s behalf. People must therefore have frank discussions with those around them, acknowledging various possibilities for what may happen at the end of their lives, and clarifying their loved one’s perspective on questions ranging from the abstract
 to the pragmatic.

Advancing a cultural directive suggests 
the deep meanings of life, death, personhood, and care are commonly discussed. Clearly 
we will not all agree on the big questions, but it is for that reason that they must be out there in the open, shared among young and old alike. The arenas of policy and education are two ways to forward a cultural directive.

Providing a policy framework

People are uncomfortable with the thought 
of reaching an old age characterized by feebleness. As they come to understand more about medication and the ravages of aging, they will want to be discriminating about which treatments they accept. One policy solution is to reverse the default treatment in hospital care. That is, instead of defaulting to treatment, we would default to palliative care, putting
 the onus on individuals – in conversation with doctors – to clearly identify and articulate what treatment they wish to have. Reversing the default opens the door to another major policy shift, one in which people can opt out of socialized medicine programs (at the national or local level) on a day of their choice. Governments could respond by cutting payroll taxes and even refunding money when appropriate. The added benefit to individuals for choosing an end-date for their treatment could be a tax cut for participating in the program, which could provide much-needed funds for quality palliative and hospice care.

To help us live our death as something that is as comfortable and predictable as possible, policymakers would ensure that essential drugs, including but not limited to painkillers, would be licensed appropriately and distributed effectively. And to facilitate dying with dignity, wherever one prefers, there should be investments in promoting all care options – from community end-of-life care 
to “remote death monitoring.” While some of these interventions may call up dystopian images of Logan’s Run – in which death is programmed and policed – an honest confrontation of death in political terms is required if we wish to facilitate the psychological, social, spiritual, and practical support that the last days of life demand
 and deserve.

Updating educational goals and practices

A key feature of technological development 
in medicine has been its ability to extend the time of death. Medical education, however, either ignores death or treats it as a failure that exposes the deficiencies in a physician’s
 skills or knowledge. Surgeon and author Atul Gawande writes extensively about this problem in his latest book, Being Mortal: Medicine and What Matters in the End: 
that physicians’ anxiety about discussing death prevents them from knowing how 
to help patients through it.

In undergraduate and postgraduate 
medical programs, healthcare professionals must be taught how to provide a successful path through death. This would include training in delivering essential bereavement support that is so critical in palliative and end-of-life care. Professionals must also be trained to adequately inform their patients about the costs and benefits of medical interventions at the end of life. As people age and become ill, they are taxed with the most expensive care of their lives: that which is delivered in the six months before they die. Information about all aspects of this care must be fully understood by various members of both medical and palliative care teams. Indeed, more resources must be invested in patient-centric research that gets to the 
heart of how people die, in order to arm medical professionals with what they need to accompany people on that path.

Moving towards the light

Steve Jobs called death “life’s change agent,” noting its ubiquity and its capacity to motivate. Indeed, thinking about the end of life in less fearful terms is something that is gaining traction and causing real change. The door is open for the reimagining and redesign of processes associated with dying. Asking how to make our final days a crisis that engenders opportunity rather than tragedy is one step in equipping ourselves with the tools we need to address difficult issues before they present a problem.

Our knowledge of the facts and our willingness to face them head on will allow us to accept death – no longer fearing, ignoring, or avoiding it. Ultimately, we will reach a cultural moment where we won’t just allow people to live and die with dignity, but we will be able to fully support them in political, social, and personal ways.

the author

Reynald Fleury

the author

Maya Shapiro

Dr. Maya Shapiro is a resident anthropologist at Idea Couture.