The scene plays itself out over and over in hospitals across America. A patient, let’s call him “John”, lies incurably ill in the intensive care unit. A machine breathes for John and various drugs support other body functions. He’s unable to communicate.
The doctor explains to the John’s family, “I’m sorry to say that John hasn’t responded to treatment the way we hoped. We can keep him alive here in the ICU, but he’ll need a couple of surgeries – one to place a hole in his neck to breath through and another surgery to place a tube in his stomach for nutrition, but nothing we do will make his brain recover.”
“He’ll spend the rest of his days like he is now, either in a hospital or perhaps a nursing home. He won’t ever go fishing or watch a Ranger’s game again and I wonder if he would want to live like that. What do you think?”
If John’s family is lucky, they’ll be able to look at his living will and know his preferences. If he never completed a living will, then they have to participate in one of the most emotionally difficult decisions any person can ever face.
Tuesday, April 16 is National Healthcare Decisions Day, a day dedicated to advance care planning.
Most of us make plans for the future for all sorts of situations. Some planning is relatively trivial like planning for a party or vacation. Other future planning is more consequential, such as retirement planning. But the most important future planning is advance care planning, a deliberate process of thinking about health care treatment choices at a future time when you might have a serious injury or illness.
As long as you can communicate, you and your doctor will face treatment decisions together. But what if you’ve been in a terrible car accident, suffered a massive stroke, or have some other illness leaving you unable to communicate? (Up to 80% of patients are unable to communicate near the end of life.)
Your doctors are going to try to make you better, but what if their efforts only prolong dying or leave you permanently impaired with a quality of life you would not want? Who would participate in medical treatment decisions for you and would they know your values and the decisions you would make for yourself if you could?
Those difficult questions are easier to face if you’ve previously engaged in advance care planning with your family and physicians and then documented those plans with a living will.
Advance care planning and living wills are associated with receiving treatment more in accord with each person’s unique values. In Texas, your living will can indicate a preference for either the most aggressive treatment in the face of terminal or irreversible illness or a preference for comfort treatments only and allowing a peaceful death. Living wills not only help lessen patient suffering, but living wills decrease family emotional distress at life’s end as well.
Finally, advance care planning can lessen the financial burden on families at life’s end and if we are blessed to be old before we die (which most of us will be), advance care planning can lower the amount of money we spend as a nation on non-beneficial treatments near the end of life.
Advance care planning isn’t hard to do. You can of course ask your physician for guidance, but there are also a number of innovative tools available to help you engage in advance care planning and to create your own advance directives.
You can download a variety of free paper-based resources in English or Spanish, including short resource papers on Advance Care Planning, Serious Brain Injuries, the Texas Directive to Physicians and Family or Surrogates (Living Will), and more from Baylor Health Care System’s website.
You can also download free paper advance directive forms in English and Spanish from the Texas Hospital Association.
If you prefer an on-line approach, there are options available to you on the Internet that you may want to explore. The best of these on-line sites I’ve seen is the MyDirectives® website. You can also follow the National Healthcare Decisions Day conversation on Twitter at this hashtag: #NHDD.
Bottom line: Advance care planning is necessary, the benefits are real, and the tools exist to help, so just do it!