The role of ethical wills in end-of-life care

By Nancy Gahles

I am a card-carrying Baby-Boomer and a member of the Sandwich Generation. Meaningfully caregiving for my own needs, those of my husband, my children, my aging and dying parents, and significant others as well as my patients has brought me into the fold of the intimacy of end-of-life issues in caregiving.

I used to be afraid of death. I was afraid that my parents would die, my grandparents would die, I was afraid that one of my siblings would die or my best friend would die. And it came to pass. One by one, many of my loved ones passed over. And I came to realize that all I had left of them were my memories. And they were valuable. They were more valuable than riches, they were more valuable than any pieces of clothing or jewelry or property. I can hold my memories of them. I can cherish my memories of them. I can actually feel them, laugh with them, and hug them through the feelings that these memories evoke. So it is that I came to understand that the best way to leave a legacy is through the memories you wish to preserve and through the values and beliefs that you wish to pass down.

There are so many times that I’m in a situation and I will think of my sister, I want to call her and ask her something. The same goes when thinking of my parents and my grandparents. In palliative care, we are waiting. I used to laugh when people would call Florida “God’s Waiting Room.” Now I know that palliative care and hospice care by that same name. It’s crowded. Sometimes the wait is long, and sometimes you are called right away. During that time I’m thinking, what state of mind are we really in? It’s not a thinking time or an intellectualizing time. It’s a time of feeling and emotions. It is a time of off-loading, lightening your burdens so that your journey be peaceful and light.

Feelings are generated there with your loved ones, which are going to be the foundation of the memories of this time with them. It bears witnessing, becoming comfortable with each other to talk about one another, real life. This is what an ethical will is about.

In patient care, I have found that the majority of people do not want to talk about death or the fact that they are dying. The person dying, as well as the caregiver, children, or spouse, are averse to discussing death. For many, this attitude leads to emotional chaos and end-of-life decision making that is crisis-oriented. The family is left to surmise, at best, and may leave the decision up to the doctor in matters of do not resuscitate (DNR) and the like. End-of-life decision making is one of the major causes of anxiety, depression, and burnout in both doctors and nurses.

Through my own experiences, I have found that when the person is still able to speak, that is the time to broach the subject of who they were, what their life was like, and what of their values would they like to leave to their loved ones. It is non-threatening and gives them an opportunity to tell the story of their life. Everyone I have ever encountered in all phases of my healthcare and spiritual practice wants to tell their story and be listened to. In this way, they are actually telling you how they want the story to end. In this way, the ethical will is a template of sorts for a legal will.

An Ethical Will

Unlike a legal will that expresses an individual’s wishes as to how their property is to be distributed at death, and names an executor to manage the estate until its final distribution, an ethical will is a non-binding document, a complement to a will. It is a living testimony to their life that may help to explain the disposition of assets to assist, heal, and repair family relationships after death. It tells the heirs what I want them to know and understand as opposed to what I want them to have.

The ethical will has its roots in Jewish history. It was very important to keep the traditions, values, and beliefs of the family intact and inviolable. The leaving of a spiritual legacy to family and friends is a time honored Jewish custom. This practice has roots in the Biblical charges given by Jacob and Moses to their heirs prior to their deaths. How to live a good life is the precept that fathers pass down to sons. In continuity of this tradition, Rabbis often impart final words of wisdom to their congregations about the proper way to live a Jewish life. Modern custom has fathers and mothers, grandparents, writing a legacy letter, a veritable love letter, to their families telling of their lives, their hopes and dreams, leaving a precious memory for their heirs. A common retort upon hearing of the death of one in your community is, “May His memory be a blessing forever. “

The Mourner’s Kaddish for Everyday is a powerful testament to the value of memories:

Build me up of memory

Loving and angry, tender and honest,

Let my loss build me a heart of wisdom,

Compassion for the world’s many losses.

Each hour is mortal

And each hour is eternal

And each hour is our testament.

May I create worthy memories

All the days of my life.

We do not know the hour of our death. It becomes significant, then, to begin writing an ethical will at life-cycle events. For example, the birth of a grandchild, a wedding, a death, a bar/bat mitzvah, a graduation, your birthday, an adverse life event, a divorce, or admittance to an assisted care or full time care facility.

Ethical wills are the story of your life and, as such, you can change or update your ethical will as you go along. A good time to begin is during the time between Rosh Hoshana and Yom Kippur, a time of reflection on your life. In the Christian traditions, Holy Week preceding Easter offers this same period of reflection—a time to ask forgiveness and to forgive, to finish unfinished business, a time of closure, healing, and reparations, a time to tell them who we were to them and who they were to us, tie up loose ends, and finish the work.

Start from the very beginning. Tell your story. Tell the story of how you became who you are.

1. Old is no obsolete. There will come a time when your progeny, the children, the grandchildren will need to know the secrets in the genes. They will need to understand the trials and tribulations of their ancestors and how they survived. This may help them in their life. They may not need to struggle to learn the way through the obstacles and challenges.
2.  We cannot lose the wisdom of our elders. My Mom used to lament, “When an old person dies, a little library dies with them.” How often have we wished our parent or grandparent were alive so that we might ask a question?
3.  Start now. The basic framework is writing a letter. It is often begun at one of the life cycle events mentioned above.

Here is an example:

Opening:

Dear ________-

Begin with the reason or cause/event that inspired you to wish to write these thoughts. Describe it in detail using your feelings, emotions about how you came to reflect upon your life in this moment.

Body:

Flow onward. Share history, your story. Give a context to who you are, how you became who you are, what shaped your life, what inspired and motivated you to do the things you did, to make the choices you made. What were the challenges, the significant events, people who shaped you?

The Legacy:

Give bits of advice, wisdom, and tales of caution. What do you want to leave them with? What values? What really mattered? What didn’t?

The ethical will is a love letter in the record of your personal history and philosophies. Tell what you stood for, what you accomplished, and lessons learned. What will you pass on?

This is a communication that is intended to live beyond the death of its creator. By telling the story of you, your values, your ethics, and your principles, it may assist in the understanding of the disbursement of properties or monies in the legal will and testament.

You may, in the ethical will, bequeath certain possessions that have meaning from areas in your life that you recount. For example, when telling of the day that you gave birth to your daughter, your husband gave you a ring. You would like that ring to go to your daughter and to be passed on to hers as a living blessing on the matriarchal lineage. 

Write down poems, stories, songs, and recipes that you want them to remember. Make a video or a recording of the tales.

The legacy may contain your hopes and dreams for their future. You can write here your wishes for your funeral arrangements, the prayers, songs, and even the guest list, the pallbearers, and the venue.

Sample Ethical Will

To My Beloved Children,

I am sitting in the nursing home with my Mom. I am holding her hand because it comforts her. And, frankly, I don’t want to let go of her. I want to feel her warmth, I want to laugh with her and I want to remember. I want to remember all the things she taught me about life, laughter and love. I have taught you, as faithfully as I could, that family is all. Family comes before money or any material goods. At the end of the day, you have only each other. Protect that bond. Cherish it. Have family meals together, no cellphones allowed, look each other in the eye and listen deeply, and with care to the day’s events of all your family members, no matter how dull or how long it is taking.

As we age, be patient and kind, even if you have heard the stories of Dad and me a thousand times before. I’m sitting with my Mom now and I’m singing to her, a children’s song, a lullaby. It’s very special to us. She nurtured and soothed me. I am doing the same for her.  We are mother and daughter. This is the way we roll. I am here to walk her home.

One secret: All the papers you will need are in the safe. You know the number. I have everything in order. Of course. You know me.

And, it wouldn’t hurt to name one of your children after me, for spiritual lineage.

With unending love,

Mama