National Healthcare Decisions Day

Many people recognize the importance of end-of-life planning, but few are as acutely aware as Michelle Nowlan, Director of Clinical Ethics and her colleagues on the Ethics Committee. A common reason for a medical team to request an ethics consult is when a patient has lost decision-making capacity, the patient's wishes are unknown, and critical medical decisions need to be made. 

These challenging situations can often be avoided by selecting a health care proxy (HCP) and documenting a Living Will ahead of a health crisis. A HCP is an individual you select to make medical decisions on your behalf. Selecting the person who will speak for you in the event that you cannot is an important medical choice. Once the HCP is selected, the next step is to share your wishes and values about the types of treatments you may or may not want to receive. Completing a Living Will is a strong companion document to your HCP since it is written by you and expresses your specific health care wishes and will support your HCP if and when the need to make those difficult choices arises.    

What are the biggest obstacles to preparing these plans? They require uncomfortably serious reflection and emotional conversations. As hard as it is to consider your own mortality, the experience of sharing what matters to you most with those you love can be a positive and meaningful experience.

April 16 is National Healthcare Decisions Day (NHDD) — an annual reminder to face this challenging topic. To get started, it helps to dispel some common misconceptions about health care conversations.

Misconception: End-of-life Decisions are Primarily About your Death

The best end-of-life conversations focus on how you want to live in your last phase of life, not just how you hope to die at its end. Do you want to live at home? Do you want privacy or do you want to be with others? Do you like detailed information about your health or do you prefer to work with just the big picture? How do you define a quality life?

Remember that you can be relatively healthy but still reliant on your HCP to make or help make decisions. You want to empower your HCP with information about how you envision your final phase of life.

This workbook can help you process these questions, organize your decisions, and prepare for conversations with your loved ones.

Misconception: Discussions About your End-of-Life Decisions Will be Depressing

"Nobody wants to think about what their last months and years might look like," reflects Nowlan. "But it can be positive to think about your values and what makes your life worthwhile and share your thoughts with those closest to you."

Talking with your proxy and family can then be an opportunity to share and pass on your values. Including them in your plans also creates a bond of trust.

These materials can help you choose your HCP and plan your conversation.

Misconception: The Clearest Instructions are Absolutes

After you've discussed things with your loved ones, it is time to write the formal documents. For New York State residents, the Department of Health's form is perfect for naming a proxy.

New York State does not have a standard Living Will form. When drafting a Living Will, there can be a temptation to speak in absolutes. In interviews, Nathan Kottkamp, NHDD's founder, gives this example: "The instruction, 'I never want to be kept alive with a ventilator' seems straightforward. But what if the need for a ventilator is only temporary? The ambiguity of simple but absolute statements can put your HCP in a difficult position."

It is better to explain the desires and reasoning behind any instructions — and to give your proxy the space to make decisions.

Misconception: One and Done

It can be tempting to finish an end-of-life conversation and think, I won't have to do that again! But there is a reason why NHDD is an annual event: these should be ongoing, open-ended conversations.

"You should regularly revisit your decisions," says Nowlan. "Your definition of quality of life can change over the course of years — especially after a major health event. So our plans need to adapt.

"You are never too young or too healthy to start planning. Follow the five "Ds" to review your advance directives on a routine basis and after a life-changing event:

  • Each Decade,
  • With a new Diagnosis,
  • A Decline in health,
  • Divorce, or
  • A Death in the family

Being voiceless during a health crisis is one of the hardest situations we encounter in health care. Know that you can continue to be a part of life-changing conversations through powerful tools like your informed health care proxy and your advance directives.