Must-Know Words and Phrases Related to End-of-Life Care

The following article was originally published by 70 Faces Media and appeared as part of a series supported by MJHS Health System, 70/Faces Media and UJA-Federation of New York to raise awareness and facilitate conversations about end of life care in a Jewish context.

General and Jewish terms you’ll want to know at this critical time.

BY RABBI JASON WEINER

Navigating any stressful and significant situation requires effective communication and clear understanding. All the more so when that scenario involves life-and-death decisions and the stress, guilt, grief and unfamiliar surroundings that often entails.

To help you better understand the various issues that may arise, both in a general and Jewish context, the list below explains terms you are likely to encounter. Click here to skip directly to the Jewish terms. You also may want to review our Must-Know Jewish Death and Mourning Terms.

General Terms

Advance Directive

A document that is legally binding (if signed by witnesses or notarized), in which one makes one’s healthcare goals, values and preferences known. There are different types of written advance directives used in healthcare: the “living will,” ” health care proxy” or “MOLST/POLST.” Each fulfills a different role, and hence a different need.

• Living Will: This type of advance directive document includes specific instructions regarding one’s goals, values and preferences as they relate to various treatment options and circumstances. This was the very first kind of advance directive, developed in the 1960s, and it is what many people think of when they hear the phrase “advance directive.” There are various versions of “living wills,” including Jewish living wills issued by different denominations.
• Healthcare Proxy: This is a document in which an individual assigns another person or persons the authority to serve as his or her surrogate — that is, to speak on one’s behalf when one lacks the capacity to do so — and hence to represent the patient when medical decisions need to be made and values-based input from and about the patient is crucial.
• Combined “living will” and “healthcare proxy” documents: Often referred to as “advance healthcare directives,” these documents combine the two above types into a single document. Most documents used nowadays in the United States are of this type, including those encouraged by various state laws. The current Orthodox forms are this type of document; their primary goal is simply to appoint a proxy, but they also include some mention of the patient’s values.
• MOLST/POLST (Medical/Physician’s Order for Life-Sustaining Treatment: A physician-initiated medical order form that begins with a conversation between the patient and doctor, based on the patient’s current condition. It assures the patient’s wishes regarding life-sustaining treatment will be carried out and is generally used for patients who are seriously ill. The MOLST is a durable form that travels with the patient and is honored across different care settings.

Chaplaincy/Pastoral Care

Most hospitals and hospices in the United States have chaplains available to provide spiritual care. Chaplains are clergy members who are ordained in their own faith tradition but have also undergone rigorous training to become interfaith practitioners. They function as an integral part of the interdisciplinary healthcare team. A professional chaplain can become board certified through various professional chaplaincy organizations including the Jewish chaplaincy organization, Neshama: Association of Jewish Chaplains.” Chaplaincy is based on the understanding that healing involves the whole person — body, mind and soul — and it attempts to support patients, their loved ones, and staff.

This is done by spending time with patients and families and providing a compassionate, non-anxious, non-judgmental presence. Chaplains are trained to listen deeply and help patients and families sort through their spiritual and emotional distress and questions. At times, chaplains may provide a spiritual perspective, prayer or blessing if the patient or family so desires. At other times the chaplain participates in lifecycle events, holiday observances, healing rituals and celebrations. Chaplains who share a patient’s religion can often offer more specific rituals and interventions, but even chaplains of another faith tradition can often provide general support.

Code Status

Code status refers to the level of medical interventions a patient wants to have started if their heart or breathing stops. A code is called when a patient goes into cardiac or respiratory arrest. If a person chooses “DNR” (see below), that is also known as “no code.” There are also numerous other codes which vary based on the situation and healthcare setting often with a name, and sometimes a corresponding color code.

Curative Care

As opposed to hospice, which focuses on symptom and pain management, “curative care” is any medical intervention seeking to treat patients with the intent of curing them, not just reducing their pain or stress. An example of curative care would be chemotherapy, which is often used to cure cancer patients.

DNR

A DNR (Do Not Resuscitate), or sometimes referred to as “DNAR” (Do Not Attempt Resuscitation), is a medical order indicating that if the patient’s heart stops beating (cardiac arrest), the medical staff should not initiate CPR (cardiopulmonary resuscitation) through chest compressions or electronic defibrillation, but should instead allow death to occur naturally. Similarly, a DNR order usually indicates that if the patient stops breathing (respiratory arrest), the medical staff will not initiate artificial (mechanical) respiration by inserting a tube into the lungs (intubation) and then connecting that tube to a mechanical ventilator. Natural death is then allowed to occur.

Healthcare Agent

(also sometimes referred to as “surrogate decision maker”)
A healthcare agent is someone close to the patient who the patient trusts to communicate his or her healthcare wishes and make sure that the patient always has a say in their treatment plan. Different states have varying rules regarding who is the automatic decision maker on behalf of a patient if nobody has been selected ahead of time. If you are unable to (or choose not to) participate in decision making about your healthcare, your healthcare agent plays a very important role. Some of the things a healthcare agent may be asked to do include meeting with medical providers to talk about your health, medications and interventions, and then deciding when/ where you will get care. A healthcare agent will also be the one to ensure that your wishes are followed (or speak on your behalf, if you have not expressed your wishes) about medical interventions, organ donation, autopsy and funeral arrangements etc. The healthcare agent should be identified in a patient’s Advance Directive.

Hospice Care

This service is specifically designed for patients who are expected to live six months or less. Hospice focuses on managing the pain and symptoms associated with dying, and patients being cared for by hospice must generally forgo all major curative treatments. However, hospice patients can in most cases still receive routine medical care, such as nutrition and hydration, as well as antibiotics and other medical interventions, if they choose to. Hospice commonly takes place in a patient’s home, but a hospice patient can also be in a setting such as a nursing home, residential hospice facility or inpatient hospice unit in a hospital.

Life Support

This refers to various forms of medical technology/interventions utilized when one’s vital organs, such as brain, lungs, heart or kidneys are not functioning properly. The goal of life support is to serve as a bridge to help a critically ill patient survive an acute experience until they can recover. Unfortunately, not everyone on life support improves and can survive the withdrawal of life support. This often leads to an ethical dilemma regarding what should be done. When the family of the patient decides to withdraw life support, that act is sometimes referred to as “pulling the plug.”

Palliative Care

This is interdisciplinary care that focuses on decreasing pain (both physical and emotional) and improving quality of life in order to provide additional support to patients. In contrast to hospice care, palliative care can be initiated at any point during the course of illness, including at the time of diagnosis, and for patients of any age who are living with any serious illness. In addition, palliative care may be provided along with all life-prolonging and disease-directed interventions. Thus, palliative care should not be viewed as pertaining only to end-of-life care, nor should it be assumed that palliative care implies that there is no hope for recovery or improvement in a patient’s condition. Palliative care is most frequently utilized in hospitals, but it can also be part of care in other settings, such as clinics, cancer centers, nursing homes and, increasingly, as part of home care.

Terminal/life-limiting illness

There is no standard clinical definition of “terminal,” although in contemporary medicine the word is often loosely used to refer to the prognosis of any patient with an incurable fatal disease. In hospice care, it is often defined as an illness expected to leave the afflicted with six months or less to live. Many clinicians suggest that “terminal illness” should be applied only to the condition of those patients who experienced clinicians expect will die from a lethal, progressive disease despite appropriate treatment and in a relatively short period of time, measured in days, weeks, or at most several months.

Jewish Terms

Bikkur Cholim (“bee-KOHR khoh-LEEM”)

This refers to visiting the sick. In addition to being a nice thing to do, it is a mitzvah [meritorious religious act], assuming the patient is indeed up for visitors. Bikkur Cholim can be fulfilled in a variety of ways — in person, by phone, via Skype/Facetime or by sending a gift or a card. The goal should be providing support, assistance and companionship in the way that is most meaningful and beneficial to the patient. Many synagogues and Jewish communities have “bikkur cholim societies,” whose members visit the sick on behalf of the community.

Birkat Hagomel (“beer-KAHT ha-goh-MELL”)

The “thanksgiving blessing,” traditionally recited by a person who has survived a life-threatening situation. It is often said in synagogue during the Torah service within a few days of one’s recovery. Find the text of the Birkat Hagomel here.

Chevra Kadisha (“KHEV-ra ka-DEESH-uh”)

This literally means “holy society.” It refers to the Jewish sacred burial society responsible for all matters related to ritual preparation of a body for burial.

Gosses (“GO-ses”)

A dying person in their final moments or days of life, as their body begins to shut down. Jewish tradition mandates the utmost respect of a dying individual, particularly once they have been given the status of “gosses.”

Mi Sheberakh (“MEE-sheh-BAY-rakh”)

Literally translated as “may the God who blessed…” referring to the first words of the prayer, a Mi Sheberakh is the traditional Jewish prayer for healing. Although commonly recited in a synagogue, it can be said anywhere, and typically includes a space to insert the name(s) of the person being prayed for. There is a classic Mi Sheberakh text, as well as many contemporary ones, in addition to numerous beautiful tunes that have been composed to its words. Find the words and listen to different versions here.

Neshama (“neh-shah-MAH” or neh-SHAH-mah)

One of the Hebrew words for “soul.” Other words include “nefesh” and “ruach.” Judaism traditionally teaches that humans are made up of both body and soul, and that the immortal soul is our true self. The word neshama, in particular, refers to a human being’s animating life force, innermost essence and intellectual capacity, believed to have come directly from God having breathed life into our bodies. The Torah says in the account of creation:”God formed human out of the dust of the ground, and breathed into his nostrils a soul-breath of life (Nishmat Chaim). Human [thus] became a living creature (Nefesh Chaya).” (Genesis 2:7)

Nigun (“NEE-goon or nee-GOON”)

A traditional Jewish melody, usually with no words, just the hum of various sounds. It is traditionally believed that because a nigun doesn’t have words, it isn’t constrained by the limitations of language and can thus be the holiest type of singing.

Olam Haba (“oh-LAHM hah-BAH”)

These words mean “world to come” and refer to the afterlife, or heaven. While individual Jews and different denominations take varying positions on the existence of an afterlife, traditional Jewish belief affirms the notion of a spiritual world to come. What exactly that existence will be like, who gets to go there and who doesn’t, and various other questions are hotly debated. Judaism encourages us to maintain focus on this world and this life, which may be why the Torah doesn’t directly reference an afterlife. Nevertheless, the fact that historically Judaism does believe in an afterlife provides comfort for many people.

Shemirah (“sheh-MEE-rah or SHMEE-ruh”)

Shemirah means to “guard” or “watch.” It refers to the traditional Jewish practice of ensuring that the deceased is not left alone prior to burial, by arranging for a shomer (guard) to watch over the body and recite psalms and prayers.

Siddur (“see-DOHR or SIDD-ur”)

A Jewish prayer book. There are many types and formats and they contain various sorts of prayers. The word “siddur” comes from the root “seder,” meaning order, thus referring to the fact that it is a book containing the entire order of the prayers, including prayers for various occasions.

Tahara (“tah-HAR-ah”)

This is the ritual washing of the body which is done by members of the chevra kadisha to prepare the body for burial. The word “tahara” literally means “purification” and includes cleansing, ritually washing and dressing the deceased’s body in burial shrouds (tachrichim). As tahara is being performed, it is customary to recite special prayers, asking God to bring the person’s soul to eternal rest in heaven.

Tehillim (“teh-HILL-im”)

This literally means “praises” and refers to the biblical Book of Psalms. It is an ancient Jewish custom to recite various psalms during times of need or fear. Some believe that reciting psalms is so holy that even if one doesn’t understand what they are saying, simply reciting the words has power. Others have found comfort in relating their sorrow to the anxiety expressed by King David, who is traditionally credited with having written many of the psalms during challenging moments of his life.

Tzavah (“TZAH-vah”)

Also known as an “ethical will,” this is an ancient Jewish practice in which a dying person documents the wisdom and lessons they have learned in their life, as well as their hopes and dreams for their family. An ethical will is often seen as both an opportunity to summarize one’s values and as a gift to one’s family to enable them to continue to learn from their loved one and be aware of what that person would want from them, even after he or she has left this world.

Viddui (vee-DOO-ee (oo as in boot)”)

This literally means “confession,” and it generally refers to the prayer traditionally said at the end of life, in order for the dying person to leave this world in a state of purity, and to proclaim faith in God and God’s justice. Viddui is viewed as a way to repent, make amends and get one’s affairs in order before dying. The traditional Viddui text includes the hope that the patient will recover, such that Viddui may be recited again at a later point when necessary, and even many times throughout one’s life. Saying the Viddui can be seen as an opportunity to relieve some of the emotional burdens of unresolved conflicts or unrealized hopes so that one can experience a lightness of spirit and removal of regret. Viddui can be said as a beautiful and intimate prayer of affirming one’s beliefs, hopes, and values as one reaches a potential crossroads and focusing on making peace above and below.

At MJHS, we value both personal and professional caregivers and recognize the critical work you do. That is why we have created these online caregiving resources to help you through this crucial time in your life.

If you need additional help and support caring for your loved one, please feel free to contact MJHS. We can recommend other care options available to you through one of our programs.