Each day across America, families are confronted with the challenges of making care decisions for their loved ones, young and old, facing a medical crisis. And, unfortunately, many of these families are making these decisions unexpectedly, with no time to prepare.
From sudden illness to accidents, life is unpredictable. We cannot postpone our life planning until we are ready because, for many of us, there is no such time. After all, according to some recent estimates, nearly one-fifth of all hospice patients were under the age of 65.
The effects of this are significant. From the emotional toll to the stress on family finances — even the cost to the health care system — we can avoid these burdens by better embracing end-of-life planning. Quite simply, no plan is not a plan.
That’s why it’s essential for families to have end-of-life planning conversations today and why we need robust public discourse among our policymakers that reflects those family-based conversations and prepares for our society’s future.
After all, year after year, we take the time to arrange family vacations, save for retirement and even plan what next year’s garden will look like. Why, then, wouldn’t we allot similar time to discussing and deciding what we want in our last months of life?
It’s important to note that advance care planning does not mean deciding to die. For many of us, it means fighting to live, battling illness and accepting the best care that is available
Also, advance care planning is not just about treatment. It’s about deciding who will take care of us, who will speak for us and how we will have our individual wishes fulfilled. It’s also about conveying those wishes to our loved ones, so that they — in an emotionally difficult time — do not need to confront the challenges of trying to guess at our wishes.
Ultimately, advance care planning is a gift that we can give our loved ones. How and when we will die is something that is simply out of our control.
But making our wishes known so that they can be honored is something that we can and should control. The end of life should be a time of peace, where the greatest burden on our loved ones should be saying goodbye.
Too often, families are left to make those decisions on their own. This may lead to disagreement among family members, adding a new level of stress to an already painful time.
These conversations — and the decisions that result — don’t have to be hard. There are abundant resources available to help guide the process, from discussion guides to state-specific legal advance directives to, for some people, faith-based counseling through their worship communities.
In fact, there are ways in which our policymakers can increase communications around end-of-life planning — and need to, given the nation’s growing transition to a patient-centered health care system.
Right now, bills are pending in the House and Senate that would help to do so. One would increase the amount of palliative care faculty in America’s medical schools, nursing programs and other educational-training facilities. The goal of this legislation is to create a population of health care providers and medical workers who are trained in advance care planning, communication skills and care coordination for patients with serious, life-threatening or terminal illnesses.
Separately, the Personalize Your Care Act of 2013 would provide many Americans with coverage for voluntary advance care planning. This bill would provide important resources to those who might be most at need of advance care planning, and it takes steps to ensure that health care providers play a role in those specific conversations and directives.
These bills recognize the value of thorough planning to individuals to their families and to the system overall. Importantly, by driving attention to end-of-life decisions, they are encouraging increased dialogue at all levels.
There is no one-size-fits-all solution to advance care planning. Each process and each decision reflects an individual’s family relationships, personal faith, financial priorities, health status and more.
The only common truth is that advance care planning cannot occur too early, but it can happen too late.
Don Schumacher is the president and CEO of National Hospice and Palliative Care Organization.