How Not To Have A Worse Death
Desk notes from an end of life care expert
Many of us hope to die peacefully, at home, in their own beds, surrounded by family. But the truth is, most of us will die in the hospital surrounded by loved ones who have been traumatized by what should be a natural, inevitable, experience.
As a researcher and expert on end-of-life care, I have spent my career dealing with the stark realities of death and dying in our country. The real truth is most people will spend their final days in and out of the hospital, often undergoing painful and burdensome procedures. Procedures designed to keep us alive well past the time our bodies are ready to go. The active dying state will leave the patient unable to communicate, and not having instructions about what they wanted, caregivers are left helpless, guilty and even angry with a system that failed to extend the life of their loved one. But the medicalization of death is not the only elephant in the room.
When should we stop intervening? This question led researchers like myself to ask if a ‘bad death’ could be avoided, or was it becoming increasingly inevitable? The good news is we now have evidence linking “bad” deaths with the lack of preparation. The bad news is less than one third of Americans ever make a plan for how they want to die.
Factually, only one in four Americans communicate or document the type of care they would want if they were dying, with four in five reporting that such planning is “irrelevant.” Even among seriously and terminally ill patients, less than half have documented their end-of-life care treatment preferences and less than one in ten have discussed their preferences with their treating physicians.
What if I told you that the “I don’t need to do that right now” mindset is often the root cause of dying a worse death?
Mortality salience, or the mere reminder that one is mortal, causes psychological threat and what is referred to as “death anxiety.” Our defense mechanisms encourage us to put the thought of death out of our minds to avoid the threatening feeling of thinking about it. Death and dying is a well-established psychologically threatening topic.
One common reason given for avoiding planning for death is that it will take away patients’ hope. Yet prior research has shown that when terminally ill patients engage in advance care planning, their hope does not decline. In fact, terminally ill patients actually report experiencing more hope in the process of planning for their end-of-life care. For many terminally ill patients, hope helped them determine their own future goals of care and better understand the benefits of planning for their own deaths.
Since we are all going to die, why are so few of us planning for it? Why are we neglecting to make plans for how we want to go? And how does this affect us in ways unseen ultimately?
One obvious answer is that we fail to grasp the consequences of not making plans. We make last wills and testaments because we realize that if we don’t, our money and assets could go to unintended recipients. But when we fail to make plans for our end-of-life care, it is because we wrongly assume that we will be taken care of in the way that we want. We assume we will die a “good death,” despite the statistics saying that is rarely achieved in American healthcare settings.
The ability to plan for one’s future medical care is available through documents called advance directives. Advance directives include a living will (a written statement detailing our desires for medical treatment if we are no longer able to communicate our wishes) and a health care proxy (a form designating an individual who can make medical decisions on our behalf) and can be completed by anyone who desires to make explicit requests for the care they want to receive at the end of life. Once completed, the key to making sure these documents are used is to communicate these wishes our doctors, family members, and anyone else we want to know about our preferences. This form of planning has been linked with a host of positive outcomes, including better quality of life, higher likelihood of getting the medical care we want, higher likelihood of dying where we want (which is home for most), and lower cost of care.
Death literacy is everyone’s best insurance for facing the end of life. Discussing the inevitable openly and often, improves everyone’s experience when the time comes. As the old saying goes, “Nothing is certain but death and taxes,” so we ought to be certain we will die and plan accordingly.
Dr. Shen is an Assistant Professor of Psychology in Medicine at Weill Cornell and a Bevival.com contributor.
