The Costs of Avoiding Death
Death and taxes; the two things we are told are unavoidable in life. Most of us have come to terms with facing taxes we owe, but when it comes to facing our death we have a number of ways to defer, delay, and avoid acknowledging it. These methods to avoid death are widely accepted, but at what cost? As other designers use long-standing principles from the field of design to improve graphics for legibility, or products for ease of use, at the Action Mill, we use these principles to improve human interactions with each other, and within the complex systems we have created. We had a hunch that our skills could be applied to improve how our culture deals with the experience of death and dying. Along the way we learned a lot about the hidden costs of not dealing with this experience well.
One of the consequences of our culture’s death avoidance shouldn’t be a surprise; it ends up costing us a lot in actual dollars. Patients with chronic illness in their last two years of life account for about 32 percent of total Medicare spending. Medicare pays for one-third of the cost of treating cancer in the final year, and 78 percent of that spending occurs in the last month. Rather than nickel and diming these treatments and trying to streamline them from only the caregiver side, there’s a simple way to reduce them: have the patients and their families talk about their end of life wishes. One large-scale study of cancer patients found that costs were about a third less for patients who had end-of-life discussions than for those who didn’t.
For those taking part in the discussion about health care costs, these statistics are familiar. But what may not be familiar are the other emotional costs of not having these discussions with family and potential health care proxies. In the course of researching this topic at The Action Mill, we interviewed professionals who work in end of life care. When we asked them how we could apply our skills to improve their day-to-day work most effectively, we heard the same answer over and over: give families a way to talk about death before they are faced with an emergency. In situations where a patient must rely on a proxy or surrogate to make decisions for them, these surrogates, who are often family members, experience extreme distress. A recent study found that 82% of surrogates who had to make end of life decisions for a loved one exhibited symptoms of Post-Traumatic Stress Disorder. This trauma is caused simply by doubt about decisions that must be made. Given the array of life-extending options, health care proxies and surrogates have to choose between a myriad of options that could potentially impact the longevity and well being of their loved one. This doubt and trauma are the hidden dangers for any family member who may be unprepared to make decisions for their loved ones when the time comes.
When we began exploring how to determine the best time to talk about end of life preferences, we thought about how families spend their time together in the best circumstances. Playing games is an activity many families like to do when they gather for holidays or vacation. With that in mind, we designed a game called My Gift of Grace. We call it “a conversation game for living and dying well” (thanks to Dr. Ira Byock for coming up with that tag line). We hope that it will be the first of many tools to help families navigate this difficult terrain, and for healthcare providers to become more familiar with these topics as well.
We’ve tested the game with over 100 people of all ages, and we’ve included over 40 questions that relate to a comprehensive range of topics related to death, life and dying. We recently launched our online store where anyone can purchase the game. We’re out to change how our culture regards death; to unhide it, and become familiar with it again. We think this is one of the best ways to be responsible for our own healthcare, and also re-affirm and re-orient ourselves to what’s important to each of us about the precious time we have.