The Growing Appeal of Hospice Care

0

Hospice is becoming a more viable option for Jewish families looking for end-of-life care.

Joan

“No one wants to go in her room,” an outspoken middle-aged man says. “Aunt Joan looks awful.” As the hospital chaplain on call, I’ve been paged to offer support to the family clustered in the brightly lit hallway. Within a few minutes, I learn that they gathered after hearing of their elderly aunt’s death after struggling with a terminal illness. The family is Jewish, but not religious. They are at a loss when it comes to dealing with the death of their Aunt Joan.

“You should go in there and look at her yourself,” they tell me. I open the door and enter. Joan’s body is propped up in bed. A wild tangle of shimmering white hair surrounds the contorted face of a dead, skinny, old woman. Joan’s mouth is wide open, as if she is trying to shout or, perhaps, scream.

All heads turn toward me as I walk out of the room. “I can see why her facial features are disconcerting and perhaps even scary,” I acknowledge. “At the same time, Joan means something to each of you. You’ve come here to acknowledge that fact.” I invite those who are willing to do so to join me in the room.

As we stand in a semicircle around the hospital bed, meaningful memories are expressed. Joan’s face no longer looks so distorted; the gathering, the telling and the sharing have softened it. A few tears are shed. “We will miss you, Aunt Joan. We love you.” Hands reach out for support. Most hold the living and a few reach out to touch the dead. Then it is over. The family wants to leave. I wish them well and encourage them to seek out further support as they continue to process Joan’s death.

Befriending Death

Regardless of how meaningful and helpful my brief encounter with Joan’s family was, I have no doubt that hospice would have better served everyone involved. Supported by hospice, Joan and her family could have crafted a specific, sensitive and well-informed end-of-life care plan. Hospice personnel would have been present for both Joan and her family throughout the dying process. Knowing that people carry vivid images of their last vision of the deceased, hospice professionals certainly would have respectfully prepared Joan’s body for her family to view as they honored her life.

Saying a meaningful goodbye to a loved one is one of the most difficult tasks we are ever called to do. The support of caring professionals who work with families through the grieving process and help dying individuals prepare for death can offer needed strength and healing balm. While hospital chaplains are trained to provide immediate and sensitive care to those awaiting surgery, making sense of trauma or facing end-of-life issues, hospice professionals focus on offering long-term and in-depth support solely dealing with death and dying.

This approach to death isn’t new. The roots of our modern Western hospice movement date back to the 11th century, when religious orders in Europe created special homes for the dying that focused on offering spiritual comfort to the terminally ill. Characterized by providing spiritual, emotional and palliative care to the dying and spiritual and emotional care to the bereaved, hospice is based upon a holistic vision of life.

Today’s hospice movement builds upon the work of Swiss psychiatrist Elizabeth Kübler-Ross and British nurse-turned-physician Dame Cicely Saunders. Saunders coined our contemporary use of the term “hospice” in reference to her palliative-focused care of the terminally ill. In 1967, she founded the first modern hospice in a London suburb. In 1974, the first American hospice was established in Branford, Conn. By this time, most Americans no longer died — or, for that matter, were born — at home. The institutionalization of the dying and a growing faith in medical advancements to continually push off the inevitable created a need for dying individuals and grieving families to be supported through the process. Hospice professionals customize the care they offer for each family as they focus on the alleviation of physical suffering while helping all involve accept the natural process of death. Yet, we remain largely disconnected from the wisdom embodied in hospice. Why?

In comparison to a death that results from an exhausting and aggressive series of increasingly futile medical treatments, “hospice is a much more natural way of approaching the death of a loved one,” states Rabbi Ilene Schneider, the former coordinator of the Jewish Hospice Program for South Jersey’s Samaritan Healthcare and Hospice. A graduate of the the Reconstructionist Rabbinical College, Schneider works to dispel the misconception that hospice encourages people to actively speed up the dying process. It does not. When a person will not recover from an illness and prolonged treatment only brings prolonged suffering, she says, hospice care is a way to “stop treatment and make the person comfortable.”

Stopping treatment in an age of ever-advancing medical innovations isn’t easy. According to a 2013 study published in the Journal of the American Medical Association, the percentage of American seniors who used hospice between 2000 and 2009 doubled. This is good news. Yet, 75 percent of these seniors used hospice for three days or less. Clearly, hospice is being regarded as “an add-on to a very aggressive pattern of care during the last days of life,” writes Joan Teno, the study’s lead author and associate director of the Center for Gerontology and Health Care Research at Brown University Medical School in Providence, R.I. An aggressive model of care focuses solely on curing disease and offers no support when it comes to the inevitable. A readier acceptance of death allows medical support teams to provide appropriate palliative care rather than to prolong physical existence for as long as machines can pump air and circulate blood.

While some hospices do have residences and all hospices have office locations, it’s best to think of hospice as a philosophy. “Hospice is a status, not a place,” states Rabbi Karen B. Kaplan, author of Encountering the Edge: What People Told Me Before They Died. Kaplan, a Reform rabbi, served the dying and grieving as a Jewish chaplain for seven years before turning her energies to teaching and writing. She describes a hospice office as “an organizational hub” for chaplains, nurses and doctors all specializing in end-of-life care. Members of the hospice team move from this center point and travel to their patients whether living in private homes, hospitals or nursing facilities. There is an interdisciplinary nature to the holistic care provided by the hospice team that meets regularly to discuss each patient and his or her family.

Kaplan highlights hospice bereavement protocol consisting of follow-up phone support and home visits that can continue for up to a year following a death. In her book, Kaplan tells moving stories of visiting bereaved family members over the course of many months following the death of a loved one. With regard to the process of grieving, she writes that “grief does not occur in a neatly packaged period of time with a clear beginning and a clear end — even after several years, a certain event, thought, experience or smell may suddenly stir up the sense of loss for a little while.” Through their visits, hospice chaplains help the bereaved understand the ebb and flow of grief’s fluidity. Families under the care of hospice are not left alone to sort through the complex and difficult feelings of letting go. The support of hospice chaplains is only a phone call, or a home visit, away.

Did Joan’s family receive follow-up care? Even if her death came as a surprise, the support provided by hospice would have eased the anxiety facing the family awkwardly gathered in the hallway. Perhaps hospice wasn’t considered because Joan wanted to extend her physical existence at all costs. It’s possible that hospice wasn’t regarded as an option because the topic of death was one the family was so used to avoiding. It’s also possible that Joan and her family didn’t consider hospice because they were Jewish.

Semantic Barriers

“Hospice is a hard sell” for Jews, observes Rabbi Tsurah August, the hospice chaplain for Jewish Family and Children’s Service of Greater Philadelphia. August identifies heself as an “inclusive Jew” and was ordained by both the Academy of Jewish Religion and the late Rabbi Zalman Schachter-Shalomi through the Aleph Religious Fellowship. She highlights linguistic hurdles to Jewish acceptance of hospice and the misconception that by engaging hospice, the patient and their family are giving up on the possibility of a cure or treatment. “It’s a double whammy,” she laments.

August runs the Jewish Hospice Network, a JFCS program, and launched the Hospice Awareness Shabbat project earlier this year. The project involves partnering with rabbis of Philadelphia synagogues and planning a Shabbat service focused on informing members of individual synagogues about both hospice philosophy and various hospice services in the Philadelphia area. Before each Hospice Awareness Shabbat, August writes an article in the host synagogue’s newsletter to raise awareness. During the service itself, August shares a Torah reflection incorporating the spirit of hospice philosophy, and members of the synagogue who have used hospice are invited to share their experiences.

When hospice first emerged as a viable end-of-life treatment option in the United States in the latter half of the 20th century, “a lot of Jews thought it was a Christian thing,” Kaplan says. In the 1970s, few Americans were familiar with the work of hospice or hospice chaplains. For many Jews, the word “chaplain” itself carried Christian connotations. Due to these associations, Jews feared becoming the subject of unwelcome conversion attempts. As Kaplan notes, “semantic barriers” explain why most Jews didn’t draw upon hospice support at that time.

Schneider concurs. “Hospice care never was really accepted by Jews in the beginning,” she says. “That feeling still exists to some extent.” Even the incorporation of the terms “grief counselor” or “spiritual support counselor” are attempts to overcome some of the overt Christian associations with the word “chaplain.” In Schneider’s experience, “spiritual support counselor” and “chaplain” are used interchangeably but neither expression is fully adequate. How to find the right term to clearly express what a hospice chaplain does? Should the terms “pastoral care provider” or “spiritual companion” replace “hospice chaplain”?  

“The thing is to get in the door,” August emphasizes. Regardless of the term being used, hospice philosophy speaks for itself. Hospice chaplains support dying individuals in defining what matters most to them. For many Jews, this often entails a reflection on what is permitted in Jewish law.

The Question of Jewish Law

“Is it OK to be Jewish and be on hospice?”

During her time at Samaritan, Schneider frequently was asked this question. “I’d tell them it’s absolutely possible,” she says. “There is nothing within hospice that goes against halachot.”

Rabbi David Glicksman, who is Modern Orthodox, agrees. “Without blinking,” he says, he regards hospice as a halachically acceptable form of caring for the dying. Glicksman, a clinical pastoral educator, currently works as a part-time hospice chaplain at the Regency Jewish Heritage Nursing and Rehabilitation Center in Somerset, N.J.

According to Glicksman, there’s a default position in Judaism to preserve life that posits: “No, you can’t stop. You have to do everything” possible to stay alive. This is often the first reaction that Jews have to hospice. In Jewish law, one can break key mitzvot in order to save a human life. Consider the talmudic teaching: “He who saves a single life saves the world entire.” However, hospice chaplains realize this approach to safeguarding life needs nuance. “If further medical intervention is futile, the focus should be on palliation,” Glicksman asserts.

Some very observant Jews are also open to receiving additional emotional support from members of other faiths. Glicksman’s brother-in-law was a “black-hat, Yeshiva-type” Jew from Lakewood, N.J., who died in hospice. A Christian chaplain came to support him and the brother-in-law appreciated how this chaplain affirmed the “strong spiritual support” the dying man had in his own community, Glicksman said.

Despite these examples, there is generally “a strong resistance to hospice in Orthodox and haredi communities,” Glicksman notes. Hospice is viewed as disregarding the mandate to affirm life at all costs and the advances in medical science that are seen as a gift from God. For Orthodox Jews, issues of death and dying are likely to be resolved by reaching out to their rabbi. Yet, as technological innovations continue to complicate the world of medical ethics, some Modern Orthodox and haredi rabbis are approaching their communities’ resistance to hospice in more nuanced ways.

According to extensive, community-based research conducted by the Metropolitan Jewish Health System in New York, there is a growing and active discussion among Orthodox rabbis about circumstances when the continuation of medical treatment can be considered halachically “futile or unjustified” due to the “intense suffering” it entails even as it intends to prolong life. In the health system’s report, “Increasing Access to Palliative Care for the Orthodox Jewish Community,” Rabbi Tzvi Flaum, well known for his contributions to the study of Jewish medical ethics, states, “There is confusion about halachic decision-making at the end of life. However, the difference between philosophical and practical aspects of decision-making are taken into account by experienced poskim [rabbis who make halachic determinations]. The halachah supports ameliorating pain and suffering and definitely supports pain management in illness and throughout life, until the very end.”

Non-Orthodox Jews are generally much more open to hospice, especially when the difference between religious and spiritual support is explained. In Schneider’s experience, most of the Jews she served were not religious and hadn’t been affiliated with a synagogue since their children were small or became Bar or Bat Mitzvah. When Schneider visited a secular Jewish home, she would notice items like a mezuzah or Shabbat candles. “They may not use them, but they have them,” she says. At first, many families would hesitatingly receive her support because they feared the judgment of a rabbi when it came to their nonobservance. She learned to quickly allay their concerns by explaining that her role was one of offering spiritual support in a nonjudgmental way.

“What Is Important to You as a Jew?”

Rhona Bergman’s husband of 35 years, Ira, was culturally Jewish but identified as agnostic. He struggled with health issues for most of their marriage. Yet, she says, he was always proud of “never giving up.”

When he was stricken with cancer, it was “really, really bad,” Bergman recalls. Now living in Delaware, Bergman and her late husband were residents of Philadelphia throughout the course of his illness. “I think he saw death as a failure,” Bergman reflects. As a former hospice nurse, she saw death in a different light. Hospice philosophy made perfect sense to Bergman and she often would return home sharing insights gained with Ira. Her husband was supportive of Bergman’s profession but never saw hospice as something he would consider.

As her husband’s illness progressed, Bergman tried to convince him of the benefits of palliative care. She also knew that her family as a whole “needed the support” that hospice provides. After learning that his insurance company would no longer cover the cost of his oxygen needs at home, Ira signed up for hospice through Wissahickon Hospice in Bala Cynwyd. This is another benefit of joining hospice: in addition to the spiritual and professional support that it offers, insurance companies will cover a host of expenses for hospice patients that might not otherwise be covered, including equipment like oxygen, therapy and more.
After doing all of this, he asked to see a rabbi. “This was huge for him. He never went to services,” she emphasizes. August came to their home. “They adored each other,” Bergman recalls. She adds that Ira also “loved and accepted” the hospice nurses who cared for him.

During one visit, August noticed that Ira had a shofar in his possession due to his interest in wind instruments. She mentioned the Jewish tradition of blowing the shofar every day for the month of Elul. Given that it was the month of Elul, Ira started blowing the shofar daily leading up to Rosh Hashanah and Yom Kippur.
About a week before he died, Ira woke up one morning and said, “I think I’m going to die today. Where is my horn? Give me my horn.” He blew the shofar and then proceeded to make numerous phone calls to say goodbye to friends and family. During this time, he was surrounded by his wife, their three daughters and Clyde, the family dog. The medications helped ease his suffering. A week later, when Ira breathed his last breath, Bergman remembers, an incredible smile came across his face. It was “a smile unlike any smile he had ever had,” she says. “He was free.”

For Bergman, hospice care was essential to the transformation witnessed in Ira’s final weeks. Given his previous antipathy regarding hospice philosophy and religious practice, she couldn’t have anticipated the profound connection he would feel to the hospice staff, particularly to August.

August was able to connect to Ira on a deep level while helping him prepare for his death. “One thing Rabbi Tsurah had shared with me about their conversations was that Ira’s biggest regret and concern was that he could not fathom how he’d be able to say ‘thank you’ and show his gratitude to the people in his life for all that they’d done for him during his illness,” Bergman says. The support of hospice helped Ira find a way to articulate this concern and take the time to express his gratitude.

“What is important to you as a Jew?” August often asks this question of her hospice patients. As death approaches, she says, it is very helpful to feel connected to “one’s deep identity because everything is shifting.” It’s particularly important to give the dying a sense of connection to “something bigger than illness or loss,” she explains.

Whether a Jewish hospice program exists as its own agency or within the framework of a larger, nondenominational body, the focus of Jewish hospice is to draw upon Jewish traditions while providing nonjudgmental and loving comfort to all involved. On a practical level, members of a Jewish hospice team can offer a weekly challah and Shabbat candles to families in their care. Jewish chaplains can provide a great deal of comfort with regard to sharing information on shivah, Jewish funeral practices and providing an environment for survivors to express their views or questions about the afterlife.

August offers her support in planning or leading a shivah minyan for bereaved families. Ideally, a hospice patient can plan the funeral, shivah and even write his or her own eulogy. “This can be very empowering,” she says. She encourages the bereaved family to use the full seven days even if they do need to return to work. Even taking an hour each day to read, reflect and connect in a personal way to the remembrance of the loved one can be very healing.  “Some say they don’t want their family to sit shivah,” August notes. This is because of a misunderstanding of the practice. Shivah isn’t about having a party or feeding people; it’s about taking the time to support the grieving and remember the dead in a way that is meaningful for each individual.

Individuals matter in hospice. “We go with the needs of our patients,” affirms Schneider. This includes serving the needs of interfaith families. “There’s nothing like doing a Jewish funeral in a Catholic cemetery so a man can be buried next to his wife,” she says.

A gentle death

It’s easy to avoid deep and difficult conversations about our inevitable death and the loss of those we love. Perhaps the fear of death is inherent in the human condition. After all, it seems we are the only mammals capable of imagining a future existence bereft of our individual presence. Combine this with the fact that culturally we are severed from experiencing the entrance and exit points of human life — until they are directly visited upon us. So often the grieving are called upon to support a loved one with a “deer in the headlights” ignorance of what the experience of dying entails. Joan’s story serves as a case in point.

Great insight unfolds when tending to the dying. Members of hospice teams carry with them an essential repertoire of knowledge, once held by our not-so-distant ancestors. Most importantly, hospice philosophy inspires families to talk openly about death. This matters. The telling of stories matter. How individuals and families are treated when death is upon them matters. Today’s modern hospice movement provides spiritual, emotional and palliative care to the dying — and spiritual and emotional care to the bereaved while openly embracing the truth that dying is a natural part of living. By doing so, hospice can be a way to make room again in our culture for the wisdom garnered from both difficult and healing encounters with death. As August succinctly sums it up, “There is a way to have a gentle death.”

Amy Wright Glenn is a hospital chaplain and freelance writer. She is the author of the book, Birth, Breath, and Death: Meditations on Motherhood, Chaplaincy, and Life as a Doula. This is her first contribution to Inside. This article originally appeared in Inside Magazine, a Jewish Exponent publication.

LEAVE A REPLY

Please enter your comment!
Please enter your name here