“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
— Susan Sontag, from “Illness as Metaphor”
Those who enter the kingdom of the sick often feel isolated, uncertain and fearful. Yet help is available to those who ask and who are open to a deep conversation about hope. As a rabbi involved in palliative care and hospice, let me tell you how my end of the conversation goes.
First, I want to understand the person, not the “patient.” I want to hear the story of this person who has “traveled on this earth.” I want to know her strengths and vulnerabilities, his accomplishments and failures, their legacies and fulfillment.
The goal of both palliative care and hospice providers is to take a person “broken” by illness and make them “whole,” a human mind and soul that stays intact through illness, either to better health or, when that is not possible, to a dignified death.
Nonetheless, it’s crucial to note that palliative care and hospice are not synonymous terms.
Palliative care focuses on providing comfort and support to people of all ages with serious, chronic, and life-threatening illnesses. It provides relief from symptoms of the underlying illness in order to help improve the person’s ability to tolerate medical treatments, live fully in the moment and make informed decisions about future courses of care.
Currently, most hospitals have a palliative care program, offered through a team that includes a physician, nurse, social worker and chaplain. This team wants to know what is important to you right now: seeing your great-grandson read from the Torah for the first time at his bar mitzvah, dancing at your daughter’s wedding, taking that dream vacation, hosting a Passover seder and making your world famous matzah ball soup. These goals remain in spite of any diagnosis or illness. Then, they will devise a plan to ensure that you can continue to function at the highest possible level to achieve those goals.
(In New York since 2011, physicians and nurse practitioners must offer terminally-ill patients information and counseling concerning palliative care and end-of-life options.)
Hospice is an extension of palliative care focused on relieving physical pain and existential suffering and allowing death to come naturally.
One of the most important emotions and feelings in Judaism is hope, a sentiment epitomized in the Israeli anthem, “Hatikvah,” which means “the hope.” However Jewish tradition does not encourage false or unrealistic hope.
Therefore, Jewish palliative care supports those with realistic hope of returning to the kingdom of the well, while Jewish hospice reflects the values that Judaism has traditionally demanded of the caregiver at the end of life: ameliorating pain, maximizing function, respecting dignity, facilitating lucidity and providing peace.
The goal of both Jewish palliative care and hospice is to ensure that a network of support is in place for the person/patient, drawing family, trusted religious advisors, friends and others into a cohesive medical-psycho-social-spiritual team.
By aggressively treating symptoms and avoiding invasive procedures of little or no benefit — those that may actually shorten the patient’s life span — hospice allows the dying person to use his or her final months to complete the spiritual, emotional and relationship tasks in a setting better suited to the journey.
Oftentimes, hospice serves as a conduit between the known and the unknown, creating a bridge between worlds. The Zohar, the book of the Jewish mystics, teaches us:
When the hour of death is at hand, the soul is greatly terrified, and refuses to leave the body. The soul, hearing the Divine Presence call out, is then touched with an irresistible longing to cleave to the Divine Presence. By its own choice, the soul will depart from the body.)
It is God who finally calls the dying to heaven. Our job in hospice is to walk on this bridge with them. Eventually we’re going to walk off the bridge without them in order to help their family, friends and loved ones carry on.
Accepting hospice services when curative treatment is no longer effective becomes a means, not to abandon life, but to hold onto it while maintaining appropriate hope.
Rabbi Charles Rudansky is director of Jewish Clinical Services at MJHS Hospice and Palliative Care (mjhs.org/hospice-palliative-care). This article was written for the Center for Jewish End of Life Care (centerforjewishendoflife.org), a collaboration between MJHS (mjhs.org) and UJA-Federation of New York ( ujafedny.org.).