The desire to give death meaning is universal. Death allows us to understand that our existence is finite, and this in turn grounds us in our experiences. But despite the advancements humankind has made in the fields of science and technology, death itself remains one of life’s unsolved mysteries.
If death has a purpose, what is it? Is death a gateway into our spiritual existence, or an evolutionary requirement? Until recently, there was little conversation around what constitutes a “good” death versus a “bad” one. However, as medical science continues to push the boundaries of mortality, the pursuit of an ideal life has shifted from one of longevity to one filled with purpose and meaning. Just as the conversation has opened up around what makes for a good life, we must also begin to consider how to have a good death.
Disease vs. Illness
Traditionally, death has been seen as a failure of the art of medicine. “Physicians are taught from the beginning to diagnose and treat, to diagnose and cure, to diagnose and make better, or at least control,” says Dr. Angela Genge, director of the ALS clinic at the Montreal Neurological Hospital. “The fact that you’re dealing with death means that somehow you can’t make the patient better, you can’t control. And some people are fundamentally afraid of that.” Medical professionals’ rejection of death and emphasis on diagnosing and curing has resulted in the limitation of biomedicine’s scope; in focusing solely on treating disease, the practice of medicine has neglected the holistic view of the patient.
A 1993 study of physicians in training conducted at the Harvard Medical School by Byron J. Good and Mary-Jo DelVecchio Good found that the introduction to this mechanical culture of biomedicine occurs early in a student’s medical education. “They don’t want to hear the story of the person. They want to hear the edited version,” a study participant said. Students are quick to discover that disease is considered the object of medical attention, while other “fictional” qualities of medicine are often neglected. This can include consideration of a patient’s life experiences, their goals and values, and their support network.
For those suffering from chronic or terminal illnesses, however, the prospect of living with an illness and dying with it are important considerations. Long after a disease has been deemed as treated or managed by medical professionals, the patient must continue living with the illness afterwards – and it is this time that poses the greatest challenges. Beyond its effects on the body, what other implications does the disease have on the patient’s experiences of living? To understand this, medical professionals must have a holistic understanding of each patient’s life; only in this way can they provide support for the patient’s experience of both living and dying with their disease.
Redefining a Life Well-Lived
Death cannot be encapsulated in a single moment. For most individuals, it is a process that takes place through a series of smaller “deaths.” How can healthcare providers support the patient during these gradual milestones – physical, spiritual, and otherwise – of death?
How do you want to die? According to one article by Bethany Cairns and Mariam Ahmad for CBC, 90% of individuals would prefer to die at home. Research has also shown that when faced with life-changing diseases and chronic illnesses, many patients would rather choose death than face the consequences of living with intensive support systems in place to manage their illness.
Palliative care and hospices represent one way of transforming the medicalization of death into something more private and personal. There comes a time in a patient’s battle with their illness when death is imminent and inevitable. Also known as end-of-life or comfort care, palliative care helps patients explore where their values lie within the dying process. It is designed to help families and patients make their peace with death. The growth in palliative care and hospices in recent years has encouraged more conversations around what role medical institutions should play in preparing patients and their loved ones for death.
With the growing acceptance of death and the focus on quality of life has come increased advocacy for assisted deaths and the creation of new ceremonial procedures, like living funerals. Some of these new death rituals have given families a way to navigate the complex and uncertain nature of death. Living funerals, for example, are redefining death by reframing the funeral event as a celebration of life. This tradition, which started in Japan, gives loved ones a time to honor and appreciate the living. It also gives the dying person an opportunity to speak openly about the inevitability and imminence of their death.
The Death Plan
Death is as much a part of life as birth, yet it is often treated as the elephant in the room. Cultivating awareness and acceptance around death will prevent individuals from resorting to futile medical treatments in the face of death. As individuals, many of us will have the opportunity to plan the circumstances around our own deaths. To take advantage of this opportunity, we must understand that death is a process that, to some degree, we can control – and, as a result, find greater purpose in.