Make sure your choices will be honored

Does the name Terri Schiavo ring a bell? She’s the woman who was in an irreversible vegetative state as a result of cardiac arrest and whose parents and husband fought a hard – and very public - legal battle over what they thought Schiavo would have wanted at the end of her life. Her husband (and guardian) felt that Terri wouldn’t have wanted to be kept alive through artificial means (a feeding tube). But Terri’s but her parents disagreed.

I recently attended a meeting at which Ellen DiPaola, Esq., President & CEO, Honoring Choices Massachusetts, a group whose goal is to educate and engage adults about making their own plan for health care and receiving “person-centered care all through their lives,” including at the end of life.

Ms. DiPaola made three points that should be the focus of someone documenting their end-of-life wishes:

1. First, identify your health care agent, someone who will make decisions for you if you’re incapable of making them yourself. This person should be someone you trust, someone who really knows you and someone who can be part of the decision-making process about your care if you are incapable of communicating your wishes yourself. In the legally-binding "heath care proxy,” you will document who your agent is and the parameters for your agent’s decision-making authority.

2. Really consider the care you want and document all of your choices and preferences for care in a personal directive, sometimes referred to as an “living will or advance directive.” It’s used to document your wishes about what’s important to you and the care you wish to receive – and wish not to receive. For example, if you can’t breathe on your own, do you want be keep alive through artificial means? Do you want a feeding tube if you can’t eat? If you go into cardiac arrest, do you wish to be resuscitated, or will you sign a “DNR?” Do you have religious and/or cultural beliefs that may preclude you from receiving certain types of care? Also consider whether you do or do not wish to be placed in facility-based living or if you wish to remain at home. Do you want hospice or palliative care?

If your physician determines that you are no longer able to make decisions on your own behalf, your health care agent has the legal power to make decisions on your behalf using your personal directive as information and instructions to get you the care you want. Your care team will provide care that aligns with your wishes and personal values.

Make copies of your health care proxy and personal directive. Give one to your agent and one to the health care professionals who care for you.

It’s important to note that while a personal directive is not legally binding, the legal system considers it evidence of your choices and preferences. “Every competent adult has the right to direct their health care and receive care that aligns with their personal values, care goals and choices,” says Ms. DiPaola. “The health care proxy and personal directive work hand-in-hand to help your Agent get you care your want- no more and no less- all through your lifetime and at the end of life.”

3. Tell your doctors and other care providers what your wishes are and who your agent is. Ask that a copy be added to your medical record. And be sure they can access the paperwork if and when it’s necessary. Consider posting a copy in a magnetic folder on your refrigerator so it can be seen easily in the event of an in-home emergency.

Honoring Choices even has a “Getting Started Tool Kit” to guide people to make their own health care plan with a free Health Care Proxy and Personal Directive, and discussion guides to talk with your doctors. Download it free of charge at

So, this sounds easy, right? Fill out a few pieces of paper. Tell some folks about it.

But for so many, starting the conversation about end-of-life wishes can be the primary barrier to making those wishes known. There are myriad tools available to help people start the conversation. Here are a few:

1. The Conversation Project – “dedicated to helping people talk about their wishes for end-of-life care.”

2. Five Wishes – “America’s most popular living will because it is written in everyday language and helps start and structure important conversations about care in times of serious illness.”

3. Death over Dinner – “an uplifting interactive adventure that transforms this seemingly difficult conversation into one of deep engagement, insight and empowerment.”

4. Lasting Matters – “an easy, affordable and comprehensive way to document and organize your personal wishes and intentions related to end-of-life planning and planning for death, helping to ensure peace of mind for your loved ones.”

To ensure that my family won’t have to make decisions about my end-of-life care, I’m going to review my health care proxy and personal directive. It’s been a while since I have, and it may need some updating. I’ll start with Honoring Choices’ Tool Kit.

Lauren Schiffman
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