Sunday, June 24, 2018

Parshat Hukkat: Death Doulas and the Role of Communities

Davar Torah by Betsy Teutsch
Longer Lifespans, Dying, and the Role of Community
June 23, 2017

My cousin Daniel shared a story with me on our trip to Petra this spring that has stuck with me.

His non-smoker mom, my aunt, died in her early 60s of lung cancer. Daniel and Barbara both lived in Minneapolis, so he was the anchor caregiver. His older sister, my cousin Laurie, had come in and stayed with their mom 24/7 towards the end, but after 5 days she needed to leave. He had not spent nights with his mom. Back at the hospice, he got up to leave at dinnertime, as was his pattern.

The hospice nurse blocked his path and asked him where was he going? Home, he explained. “No you’re not. Turn right around, go back in to your mom. She won’t be here in the morning.”

He did as bidded, spending his mother’s final night with her. Accompanying her through her death, he told me, was the most meaningful experience of his life.

And, he further shared, he recently heard a woman describe her work as a death doula. He immediately knew he wanted to train and volunteer in this role. Death doulas provide respite care for families of hospice patients, or play a more direct, intimate role for people without nearby family or friends.

Of course our community is blessed to have many professional chaplains and others devoted to the care of elders, and David has edited a book entitled “B’Horef Hayamim, In THe WInter Of Life” - but to my ears the death doula role sounded new and important.

Baby boomers have been characterized as the generation that changes societal norms at every stage of our development - courtship, cohabitation, marriage, childbirth, divorce, retirement.... It makes sense that demedicalizing the dying process will be another boomer focus, not unlike the return to natural childbirth.

When Robert asked me to give a davar, I picked Parshat Hukkat by the date. When I opened it, **there** was my opportunity to explore my conversation with Daniel in our community.

First, our parshah has a lengthy description of the ways in which those in contact with dead bodies become impure, and what is to be done about it. Then we have the deaths of Miriam and Aaron, two of our tradition’s greatest.

Becoming ritually impure, in Temple times, was not unclean, dirty, polluted, or bad. It is a state that contrasts to purity. From an anthropological standpoint, the impurity likely stems from the uncanny liminality of a body after the soul/breath has departed. Perhaps an intuitive germ theory is operating as well, a concern that there may be a contagion that killed the person, as well as a well-observed awareness that dead bodies quickly decompose. Also, sudden deaths destabilize families, bringing grief, danger and vulnerability--certainly an altered state of affairs.

However, our tradition must compromise. Dead bodies need to be attended to respectfully, with the rituals performed quickly by a hevrah kadishah, or Holiness Fellowship. Members of our community participate in Philadelphia’s progressive hevrah kadishah and find the work profound. Attending to the dead is a mitzvah of chesed shel emet, an act of pure kindness, since it cannot be repaid.

In traditional Jewish communities, post the Temple’s destruction, Cohanim are the only category of Jews who may not touch dead bodies, or even be in a graveyard.

But what does our parshah tell us about the process of dying? Genesis features Isaac’s deathbed scene, as well as Jacob’s, but by and large, our foundational text doesn’t tell us much about the dying process. We don’t hear that Miriam moved out of her independent living arrangement into a continuing care community, ultimately dying in its skilled nursing facility, nor do we hear that Aaron aged in place and spent his last days in hospice.

I want to explore this gap. We 21st Century folks are the beneficiaries of, on average, extra decades of life, pushing off death until ages that were formerly so rare as to be mythic. David and I have 2 aunts and an uncle who have lived beyond 100 years. Did you as children ever know anyone over 100?

In biblical times, life expectancy was in the 35 year range, kept low by high infant mortality. This average lifespan (remember for everyone who died at 0 there is also someone who lives to 70, when  you are averaging.) didn’t go up until the 18th century--due to modern health discoveries and better diet, more children survived. By the late 19th century life expectancy was 45-50.

For every year of the 20th century, 3 months of life were added to the average life span, or 300 months, plus 5 years have already been added in the 21st century. That means that we have 30 more years than previous generations.

As we are reminded in the Unetaneh Tokef prayer, many people die before their time from a wide variety of calamities. But most do not.

This has resulted in huge changes in how we manage old age and infirmity. Formerly people just didn’t live this long. Think about naming. Were you named for a grandparent? Did you name a child for your parents? It is no longer uncommon for babies born, even to parents in their 30s, to have four living grandparents and a few great-grandparents, too.

Families are much smaller than previous generations - a result of lowered infant mortality and family planning - and more geographically dispersed.

This means that many people will live to very old ages without any immediate family, either because they have outlived them all or live far away from them. Friends and community can fill some of that space, but resources are strained taking care of elders who live so so long, often with serious physical and cognitive infirmity.

This presents a major communal challenge that our tradition has little to say about, since our ancestors could not have imagined people living so long. Who could have foreseen segregated elder communities with their own staff, activities, celebrations, and culture?

The deaths in this week’s parshah, Miriam’s and Aaron’s, are simply announced. This was typical for most of human history. Death overtook people quickly before antibiotics and modern medicine.

Now, people live for decades with a variety of chronic conditions. I got close to my aunt when she was in her 80s. I made many trips to Sun City, Arizona, to visit her, each time thinking it was likely our final visit. We celebrated her 90th birthday. Her 95th. Her 99th birthday. Then we were back a year later for her 100th. Now going on 102,  she recently shared her bad news. Despite being unable to walk or see much of anything, or hear well, her heart is still strong. She is ready to be done with it, but her body is not cooperating. Perhaps that is a subject of a different davar torah.

What is the role of the community in all of this? We are a multi-generational community. How will we relate to elders at the later stages of life? What are  the roles of one’s community, one’s friends, and one’s family, if the dying person has a family?

A little background on the doula movement. It was pioneered at the Shira Ruskay Center of the Jewish Board of Family and Children's Services and NYU Medical Center, and began pairing five volunteers with patients. The program was ultimately named "Doula to Accompany and Comfort."

“The volunteers went through training on both clinical and spiritual aspects, including but not limited to the complexities of end of life health care, physical issues like incontinence and disorientation, and hope in the face of death.[6]”

The movement has spread. People find the work highly gratifying. There is also a spreading “Death Cafe” initiative, including one hosted in Mt. AIry a few months ago, to bring this sugject out in the open.

  1. Have you had an experience accompanying a friend or family member through his or her death?
  2. If you have experience with being part of a Hevrah Kadishah, please share reflections.
  3. What is the role of our community as we age?
  4. How does the role of a Death Doula fit into Jewish practice and mitzvot?

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