Pledge to end your fear of death and end-of-life care

Are you or a loved one aging, perhaps with a chronic heart or lung condition that limits daily activities? Do you have an older parent in a nursing home or who needs assistance with daily living activities? If so, read on and make the pledge.

As physicians, we see death every day. We see death made worse and more painful by poor advance care planning. Yet, despite the certainty of death in all our futures, it is astonishing how often families and loved ones have neither discussed nor planned for the inevitable.

Discussing death is hard. But not having these crucial conversations is far worse.

Over 50 percent of Canadians who die each year do so in hospitals. We no longer die quickly at home from acute illnesses like infections, but from chronic illnesses whose protracted course often ends in hospitals. Death has been removed from daily life and is managed for us in sanitized institutional environments. Perhaps because death is less familiar, it is easier to fear. It is certainly much easier to ignore.

Consider older nursing home residents, most in their mid-80s, many of whom have some dementia, have daily pain, depressive symptoms and are affected by diabetes, heart and lung disease or stroke. “Frailty” is the term used to describe such persons, whose complex burden of age-associated conditions increases their risk of further decline. Their life expectancy is normally around 18 months — shorter still if they lose weight, need more assistance or become short of breath.

Because we do not have crucial discussions, as many as 30 percent of frail nursing home residents are admitted to an intensive care unit and 50 percent to hospitals in their last month of life. Because we have not normalized difficult conversations around death, we will never know whether this is what they would have wished.

A key reason is fear.

Fear of death, fear of the unknown, fear of dying in pain and alone. Fear of talking to doctors and nurses about death. Fear of being abandoned if they forego aggressive care options. Fear of dying in pain and alone in a community ill-equipped to address their needs.

Doctors and nurses are also afraid. They have limited training with difficult conversations. They fear the sense of defeat from the sense that they are giving up on patients. Fear is why these discussions don’t happen.

So, this year, pledge to overcome your fear of death and have an end-of-life discussion with your frail loved ones and with your doctors and nurses.

Reflect on what matters to you most, your values, your life goals and expectations and anything else you feel is important. Ask yourself: how do your wishes align with the specific and best-practice care choices that you might have to make, today, or in the future? Know that you can seek help from your doctor or nurse, or use one of many available toolkits.

Once your wishes are clear, it is critical that they be honored. Write them down. Share them with your loved ones and powers of attorney, who need to know because they might have to speak on your behalf one day if you lose that ability. Share them with your doctors and nurses. Know that you are allowed to change your wishes, especially as your health changes.

Our health care system must pledge to overcome its inertia and engage decision-makers and community stakeholders to ensure that all people have equitable access to quality services that support their wishes as they approach the end-of-life.

Failure to do so is a pledge to continue with 3 a.m. “do everything” resuscitation attempts that prevent natural death and that many frail patients would never have wished for had that crucial discussion taken place.

Paul Hébert is a professor of medicine, Université de Montréal, Montreal, QC, Canada. George Heckman is an assistant clinical professor of medicine, McMaster University, Hamilton, ON, Canada. Both are researchers, Canadian Frailty Network.

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