Death, Taxes, and End-of-Life Care
April 02, 2014 | By: Guest Blogger
Heiko is a Partner in the Action Mill, a human-centered design company in
Philadelphia. The Action Mill works with health care organizations to improve
communication and decision-making about end-of-life care. Jethro tweets
“Our new Constitution is now
established, and has an appearance that promises permanency; but in this world
nothing can be said to be certain, except death and taxes.”—Benjamin Franklin
Death is certain but how we die and how we live until we die
is a path determined by many decisions as well as many things beyond our
In the recent JAMA article, “Scope and Outcomes of Surrogate Decision Making Among Hospitalized Older Adults,” the authors conclude that,
“Surrogate decision making occurs for nearly half of hospitalized older adults
and includes both complete decision making by the surrogate and joint decision
making by the patient and surrogate. Surrogates commonly face a broad range of
decisions in the intensive care unit and the hospital ward setting. Hospital
functions should be redesigned to account for the large and growing role of
surrogates, supporting them as they make health care decisions.”
Before we enter the ICU—either in a bed or next to one as a surrogate or health
care professional—we are parents, children, siblings, spouses, and partners.
But families often lack the support and tools to make decisions that are
aligned with our loved one’s wishes. Most of us have avoided the kinds of
conversations that inform how we want to die because of our fear of death.
About a year ago, my design company decided see what we
could do to help turn this problem around. One of the projects we started is a
game called “My Gift of Grace” that helps families and health care
professionals talk about living and dying well.
It is a conversation game built around 47 questions that get
at players’ values and goals of care in unusual ways. Questions like: “In order
to provide you with the best care possible, what three non-medical facts should
your doctor know about you?” and “Imagine you were lost at sea and your family
had to pay for the search to find you. Who should make decisions about how long
to search for you?”
In celebration of National Healthcare Decisions Day (April 16), we are
working with organizations around the country to bring our game to health care
professionals, parents, children, spouses, and partners.
We have created a free event planning toolkit to help
organizations organize events where staff, families, and patients will play the
game together. You can learn more about these events here.
We hope you will join us.