How to Talk to Loved Ones About Your End-of-Life Wishes

The following article was originally published by 70 Faces Media and appeared as part of a series supported by MJHS Health System, 70/Faces Media and UJA-Federation of New York to raise awareness and facilitate conversations about end of life care in a Jewish context.

Do’s and don’t’s for broaching the most difficult of topics.

BY RABBI RICHARD ADDRESS

Conversations about end-of-life decisions are delicate, personal and unique — and rarely if ever, begun and completed in one sitting. One thing is certain, given the mobility of our society, the advances in medical technology and the continuing cultural denial of death: The need for these conversations has never been more profound.

How to begin? There is no one way, no “one size fits all.” Family gatherings such as Thanksgiving, holidays and birthdays can be a good time to have the conversation. In addition to Cohen’s book, Rabbi Gordon also recommends reading Having the Last Say, Bruce Feiler’s “This Life” column: The Family Stories That Bind Us, and Susan Garland’s “Your Money” column: Telling Their Life Stories, Older Adults Find Peace in Looking Back. It is important to prepare for the conversation. Start by letting people know that you plan to have this conversation, how important it is to you and that you need cooperation, understanding and support. We’ve compiled 8 Do’s and Don’t’s that will help you have the most productive and meaningful conversation possible with your loved ones.

8 Do’s and Don’t’s

Consider the following:

1 Do your homework ahead of time.

Before you sit everyone down, you should designate a health care proxy and complete, or at least review, the relevant documents that express your wishes in cases when you are unable to speak for yourself. Important documents, which you can learn more about at the resources listed below, include:

• Your will
• An advance medical directive which states your wishes for end-of-life care.
• Health Care Proxy which is a legal and enduring form designating a health care agent to speak for a person if they can no longer speak for themselves.
• POLST (Physician’s Order for Life- Sustaining Treatment) or MOLST (Medical Order for Life-Sustaining Treatment) forms. This is not recognized in all states, but it supersedes an advanced directive. Please note that the creation of these documents expressing your wishes has been supported by every major Jewish denomination.

2 Do educate yourself.

Take the time to become familiar with the terms associated with these documents and, equally as important, your local laws as they relate to decision making. It is important to understand the possible tax implications of your estate (if applicable) and the potential challenges of “spending down” as your situations change. These issues are important especially if you are in a second marriage or if you are living with a partner. Also, be aware that some of these laws vary from country to country and from state to state. Consulting with trusted advisers such as an elder care attorney, financial adviser, accountant, and if desired, your rabbi is strongly recommended.

3 Don’t just fill out these forms and forget about them.

You should review all documents and directives at least every five years. Why? Because we all change, and we may change our mind on certain treatments. Also, the pace of medical technology is rapid, often outpacing society at large and so what was frontier medicine years ago may now be standard practice.

4 Do share any documents you develop with as many people as possible.

This can include your family, doctor, lawyer, and anyone else you deem appropriate. If or when you enter an assisted-living facility or nursing home they will also need copies. Make sure that these people, especially your proxies, know your wishes and are up to date on your thoughts. They may be called upon to make serious life and death decisions.

5 Do be firm in your resolve to have these discussions.

Some family members may have already witnessed situations in which no advance planning has taken place and thus be more inclined to participate. Others may push back. That’s OK; it’s important, and you need to do it.

6 Do remember that having these conversations will help your children, even if they don’t agree with everything you say.

Differences of opinion may emerge as to your wishes and the thoughts and feelings of your loved ones. Jewish tradition has the concept of stewardship, which, in the spirit of the 5th Commandment to honor and respect the wishes of parents, says that adult children should honor the wishes of their adult parents, assuming the wishes of the parents have been made in full knowledge and clarity. Having these conversations and documenting your wishes will help, in moments of crisis and stress, alleviate guilt and give clear direction, especially in cases where you may not be able to make your wishes known. Clarity of wishes and acknowledgment of those wishes (even if some may harbor other wishes) is a powerful and necessary act.

7 Do speak in a language of love, affirmation and concern.

These conversations look at your choices and your belief in your quality of life. Try to avoid language that relates to being or not being a “burden.” Remember, that your loved ones who care for you are adults and that just below the surface, these conversations raise the reality of our mortality and the evolving concern over the issue of loss and legacy.

8 Do understand that these conversations may raise all kinds of psychosocial — and spiritual — issues.

Our society does not do a good job of embracing our aging or accepting our own mortality. Yet the conversations you will have with your loved ones are discussions about just this. We have these conversations and sign these documents and, in doing so, accept in a very real way, the reality of our own mortality. This is a spiritual issue.

For spiritual guidance, Jewish sources, sample forms, and other related information visit Jewish Sacred Aging.

Books That Can Help Your Conversation

• Being Mortal, by Atul Gawande
• On Matters of Life And Death, by Rabbi Elliot Dorff
• A Jewish Guide to Practical Medical Decision Making, by Rabbi Jason Weiner
• Navigating The Journey, edited by Rabbi Peter S. Knobel

More Resources for Your Conversation

• The Conversation Project
• National Health Care Decision Day
• The Five Wishes
• The Coalition to Transform Advanced Care
• YourLifeYourWishes.com

At MJHS, we value both personal and professional caregivers and recognize the critical work you do. That is why we have created these online caregiving resources to help you through this crucial time in your life.

If you need additional help and support caring for your loved one, please feel free to contact MJHS. We can recommend other care options available to you through one of our programs.