July 6, 2018

Decisions concerning medical care in the final stages of life present a range of Jewish ethical and legal conundrums. 

Messy and complicated, they have vexed ethicists, medical professionals and religious leaders.

While Jewish tradition maintains that human life is of infinite value and that its preservation and extension override virtually every other religious imperative, relieving pain and allowing for the soul’s peaceful departure are also values well established in Jewish tradition. 

Of course, there is a moral distinction between hastening death and removing obstacles to its natural progression, but in practice the difference isn’t always easy to discern.

Here is a general overview of issues that arise at life’s end — and how Jewish authorities have weighed in on them. 

Jewish thinkers often emphasize that specific cases vary substantially and must be considered individually. 

Most Orthodox authorities generally consider nutrition, hydration and oxygen — even if artificially provided by a feeding tube or ventilator — to constitute essential human needs that never should be discontinued as long as they are effective. This position is reflected in the 1990 paper on end-of-life care by Conservative Rabbi Avram Reisner. However, the Conservative movement’s religious law authorities also endorsed a paper by Rabbi Elliot Dorff. He advanced several possible justifications for removing artificial nutrition and hydration for the terminally ill. Among them is the contention that a medically administered treatment that conveys food and water to the patient by tube is more properly regarded as medicine than as simple food and water.

As for hospice, it is a form of medical care for people suffering from terminal illnesses with a life expectancy of six months or less. 

Jewish thinkers often emphasize that specific cases vary and must be considered individually. 

Jewish hospice programs typically are equipped to provide hospice services while abiding by Jewish traditions. Because hospice focuses on a patient’s quality of life rather than aggressive medical treatment, some Orthodox rabbis do not believe hospice conforms with Jewish tradition. 

Do-not-resuscitate orders, known as DNRs, are legally binding directives signed by doctors ordering medical professionals to withhold CPR or advanced life support in the event a patient’s heart stops functioning. 

A patient needing CPR is in acute distress and could be saved, even for a brief period, with proper treatment. But given the often low success rate of resuscitation and the high likelihood of adverse effects for the elderly or those weakened by terminal illness, some authorities permit DNRs under certain conditions. 

Advance directives are documents specifying a person’s wishes concerning medical care in the event they are unable to make such decisions for themselves and/or appointing a health care proxy to make decisions on their behalf. 

As for experimental therapies, most Jewish authorities would require a patient to submit to a therapy if it is known to be effective at curing their condition. 

This is not the case regarding experimental treatments whose success rate and potentially adverse side effects are not known. 

Jewish authorities from across the denominational spectrum support the right of a patient to refuse treatment that is risky or of unproven value. 

Dorff writes that it is permissible to undertake a hazardous therapy if it presents a “reasonable chance” of cure, even if it simultaneously poses a risk of hastening death if it fails.

As for refusing treatment, Jewish tradition generally requires that every effort be made to sustain and extend life, but that position is not absolute. 

In cases where diseases are incurable, and medical interventions would be risky, painful, of uncertain efficacy or serve merely to prolong a life of unbearable physical or psychic pain, there is support in Jewish tradition for an individual’s right to reject such treatment. 

Taking active steps to hasten death are prohibited in Jewish law, but praying for death is another matter. Jewish bioethicist J. David Bleich has formulated it this way: “There is no contradiction whatsoever between acting upon an existing obligation and pleading to be relieved of further responsibility.”

A longer version of this story ran on myjewishlearning.com.

Before Rabbi Carla Howard co-founded Jewish Hospice Care in 2001, no place catered specifically to Jewish families seeking help for end-of-life decisions. 

“You’d go into a phone book, you’d look up Trinity or find whatever you could,” Howard told the Journal in a phone interview. “But the thing is, we’re Jewish, so where do we go for Jewish hospice care?” 

Back when Howard was fresh off her ordination and was doing independent spiritual counseling work, she received a call from a young couple in Cedar Sinai Medical Center’s neonatal unit who were grappling with taking their newborn off life support. 

Howard, who was a midwife at the time, said, “They had nowhere to go. They had no one to walk them through end-of-life counseling; no Jewish spiritual or crisis guidance.” 

And so, Howard took the Hebrew word for a midwife — doula — and applied it to her new role: “Doula of Death.” She then co-founded the Jewish Hospice Project, the city’s first Jewish end-of-life service. The nonprofit organization rebranded itself in 2005 as the Jewish Hospice and Healing Center of Los Angeles (JHCLA).

Howard, along with a staff of three chaplains, an operations manager and a committed core of volunteers, works out of a Pico-Robertson office providing mobile hospice care to patients all over the city at homes or nursing facilities. 

The JHCLA client base includes a broad range of Jews, non-Jews and patients dealing with various crises beyond bereavement, including relationship problems, feelings of social isolation and LGBTQ issues. JHCLA works closely with JQ International, a Jewish LGBTQ-advocacy organization. 

“The Torah commands us to provide for our fellow human beings a good death. . . . What does that mean? It means treating a death as an entire family experience.” — Rabbi Carla Howard

“Spiritual care should service anybody in crisis,” Howard said. “We work with a lot of young people trying to connect in this world of disconnect, of Tinder, social media and whatever else.”

With its end-of-life care, JHCLA emphasizes catering to the family members of hospice patients. Howard invokes Torah to outline what makes JHCLA unique. 

“The Torah commands us to provide for our fellow human beings a good death —  and that comes from v’ahavta … love your neighbor as yourself. But a good death? What does that mean? It means treating a death as an entire family experience,” she said. “Even though it happens in the body of one person, everyone is affected. The whole family is the unit of care. You have a mini-community that is complicated. Every person brings their own spiritual and psychological piece to it.”

Nearly two decades into her mission to bring Jewish end-of-life care to Los Angeles, Howard  said she still finds fulfillment and purpose. 

“It’s meaningful work,” she said. “That’s how I’m sustained. Most people face death with terror. We try to help each patient and their families release in peace.” 

When Rabbi Michael Berenbaum, a professor of Jewish Studies at American Jewish University, was dealing with the impending death of his mother, he found comfort in JHCLA’s care. 

“As my beloved and feisty 92-year-old mother was facing the last of her days, I turned to [Howard],” Berenbaum said. “I found her guidance compassionate and wise and also so deeply Jewish. I have referred many other people to her and to the Center, all of whom have reported back on the meaningful nature of their experience.”

Howard hopes word continues to spread about JHCLA’s communal impact. 

“In my opinion, we’re the best-kept secret in Los Angeles,” she said. “We’re a nonprofit so we don’t have a huge marketing budget. However, unfortunately, our services never go out of need.”

Conversations about end-of-life decisions are delicate, personal, unique — rarely begun and completed in one sitting. 

Given the mobility of our society, the advances in medical technology and the continuing cultural denial of death, the need for preparation never has been more profound.

Although there is no standard way to begin, family gatherings can be a good time.

It’s important to prepare for the conversation. Start by letting people know that you plan to have this discussion, how important it is to you and that you need cooperation and understanding.

Here is a list of do’s and don’ts.

1. Do your homework ahead of time.
Before you sit everyone down, designate a health care proxy. Complete, or at least review, the relevant documents that express your wishes in cases when you are unable to speak for yourself. Important documents include:

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

2. Educate yourself.
Become familiar with the terms associated with these documents and your local laws as they relate to decision-making. Understand the possible tax implications of your estate and the potential challenges of spending down as your situations change, especially if you are in a second marriage or living with a partner. Consulting with trusted advisers is strongly recommended.

3. Don’t just fill out forms and forget about them.
Review all documents and directives at least every five years. Because we all change, and we may change our minds on certain treatments. The pace of medical technology is rapid, often outpacing society at large. Frontier medicine years ago may now be standard practice.

4. Share documents you develop with as many people as possible.
This can include your family, doctor, lawyer and anyone else you deem appropriate. If you enter an assisted-living facility or nursing home, they will need copies. Make sure that these people, especially your proxies, know your wishes. They may be called upon to make life-and-death decisions.

5. Be firm in your resolve to have these discussions.
Some family members already may have witnessed situations in which no advance planning has taken place and thus be more inclined to participate.

Differences of opinion may emerge as to your wishes and the thoughts and feelings of your loved ones.

6. 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 Fifth Commandment, says that adult children should honor the wishes of their parents, assuming the wishes of the parents have been made in full knowledge and clarity. Having these conversations and documenting your wishes will help during moments of crisis and stress to alleviate guilt and give clear direction, especially in cases in which you may not be able to make your wishes known.

7. Speak in a language of love, affirmation and concern.
These conversations look at your choices and your belief in your quality of life. Avoid language that relates to being or not being a burden. These conversations raise the reality of our mortality and the evolving concern over the issue of loss and legacy.

8. Conversations may raise psychosocial — and spiritual — issues.
Our society doesn’t 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.

For spiritual guidance, Jewish sources, sample forms, and other related information visit jewishsacredaging.com. 

A longer version of this story ran on myjewishlearning.com.