By Natalie Zizzo
“What happens at the edges of life?” “Is there something after death?” These are common questions in many faiths and cultures. Less common are questions such as “what is dying like?” “Can there be a good death?” Even rarer: “what is the experience of death and dying in modern medicine?”
Although up to 75% of Canadians would prefer to die at home, almost the same percentage actually die in hospital. Despite this likelihood of dying in the medical setting, most people remain naive as to what this reality entails; that is, until it happens to them or to a loved one. This matters because dying in real life is not like the dying we’re used to seeing on TV. On TV, death is often thwarted. CPR manages to save lives 70% of the time, and half of these survivors get to go home by the end of the episode. In reality, CPR has an immediate survival rate of less than 37% and a long-term survival rate of about 13%.
So let’s talk about death. Chest compressions, ventilation, dialysis, surgery, feeding tubes, IV hydration. All of these are interventions that may be provided near the end of life. To be sure, these interventions can save lives. But often, they are used to prolong lives. And in many cases, the quality of life that they prolong is not the quality of life the patient wants. Unfortunately, most people do not reflect upon or discuss their preferences for end-of-life or urgent care ahead of time, with only 9% of Canadians having ever spoken to their healthcare provider about their wishes for care.
Harder still, patients at the fringes of life may not have the capacity to make decisions regarding their care. In these cases, choices regarding treatment are left to the surrogate decisions maker, usually a family member or friend. Ideally, the surrogate is guided by the patient’s preferences, but only 13% of Canadians have an advanced care plan, and less than half of Canadians have ever discussed these types of situations with their loved ones. This leads to situations where surrogates have to make decisions regarding care without thorough knowledge of the patient’s preferences, which can have negative effects on both the patient, who may not be provided with the care they would want, and on the surrogates themselves, who can experience substantial negative emotional burden that can last months or even years.
The burden of not talking about death extends beyond the patient, the family, and healthcare providers. It’s also costing us. Ontario spends $5 billion a year for the care of people in their last year of life (that’s 10% of the overall health budget). In the last 30 days of his or her life, the average person generates $14,000 in health-care costs. And yet, in regions where advance care planning is the norm, health care spending goes down. Knowing what patients want results in a course of treatment that ultimately costs less.
There is a clear need to have more open and transparent discussions about death and dying in the medical context. Moreover, we need to recognize that death and dying in medicine is a discussion relevant to more than just the elderly; it can affect us all, from the extremely premature baby, to the young adult who has a stroke, to the middle aged with Huntington’s. Luckily, discussions about death in medicine are slowly becoming more prominent. However, talking about death and dying with others can remain an uncomfortable, and even taboo, topic.
Enter art. Art is an ideal medium for communication on complex issues. It provides multiple ways to interact with a topic, and a single piece can offer many different interpretations. It is relatable and accessible, and so provides an innovative way of engaging the public and healthcare providers on health issues in a shared safe space. Too often, health promotion has relied on conventional means to convey health messages. But by their verboten nature, taboo health issues must be explored through unconventional means. We must create neutral spaces where people from all backgrounds can come together to confront difficult issues; an art exhibit creates one such space where people are encouraged to learn, to feel, and to reflect.
We believe discussions on death and dying in the medical context should be promoted through art. In a series of three one-day exhibits at health conferences, and one month-long exhibit open to the public, Until the Last Breath will explore the reality of death in medicine through art that is engaging, thought-provoking, and credible. By empowering the public to explore these issues, we can help people confront the difficult topic of death, and ultimately improve health outcomes.
Natalie Zizzo has a Master in Bioethics and is the Communications Lead at TABOO Health. To learn more about TABOO Health check out our website. To partner or volunteer with us, contact us.
One Reply to “Until the Last Breath – Demystifying Medical Death and Dying Through Art”
Thank you for this post.
I have many thoughts on this subject, from philosophical reasons why we as humans actively avoid discussing unpleasant, yet inevitable subjects, to recent and immediate observations with my own family. I will offer just one here: we all have the ability to change the ending to this story, and that’s by having a healthcare directive in place. I do. I’m also willing to have an uncomfortable conversation now to prevent an impossible situation later. I don’t want my family to have to guess what I would want, and I don’t want to cause them unnecessary pain by forcing them to make the decisions I should have made. That’s what we do when we fail to write down, or discuss, our own end-of-life desires: we saddle our families with the burden of responsibility. We don’t mean to, but we do.
I’m only sorry I don’t live in town – I’d like very much to see the exhibition. Good luck!