In our first article in this series, we touched on several issues that relate to care toward the end of life. In this installment, we will take a closer look at an important component of end-of-life discussions: hospice, which is widely misunderstood and underused. What follows are some myths about hospice, dispelled:
MYTH #1: Hospice is for helping people die
While it is true that hospice involves caring for someone toward the end of his or her life, the focus of hospice is not on helping people die. The goal of hospice is to help people live their last months or weeks in a way that is comfortable, calm, and meaningful for them.
Hospice care (under Medicare guidelines) is designed for patients who meet several criteria: They must have a life-limiting illness, doctors must consider it likely that the patient will not live more than six months, and the patient cannot be receiving treatment intended to cure the illness (as opposed to treatment intended to relieve symptoms from the illness). The typical patient has an illness for which there is no known cure, like Alzheimer’s, or for which treatment options are speculative, risky, or painful.
Once a patient joins hospice, the focus of care shifts from the disease to the patient. Hospice professionals are experts in addressing pain, anxiety, nausea, and other uncomfortable symptoms. Making this time meaningful and rewarding is also important. The hospice team can help patients fulfill religious practices, spend meaningful time with loved ones, attend an event that is important to them, or find ways to leave messages or projects to be remembered by.
In short, hospice is care that takes place at the end of life. But its goal is to live the end of life as fully as possible.
MYTH #2: Hospice is a specific place
Hospice is a modality of care that takes place wherever the patient wants to be. The vast majority of hospice patients are cared for at home, whether home is a house, a nursing home, an assisted living facility, or any other place. In fact, this is often one of the main benefits of hospice care: It allows patients to stay home, in surroundings that are comfortable and familiar, rather than enduring constant trips to the emergency room or days and weeks in the uncomfortable environment of an intensive care unit.
That said, there are some facilities that are designed specifically for hospice patients. These are usually for people who need a level of care that cannot be managed at home: for example, patients suffering from pain who need constant nursing care and careful monitoring of medications. These can be stand-alone facilities or hospice units within a hospital setting, and patients stay there only until their symptoms are brought under control. But only a fraction of patients will ever spend time there; most will experience their final months in a setting of their choosing.
MYTH #3: Hospice is not appropriate for Jews
For some people, the very notion of entering hospice feels un-Jewish. Often, this is because they do not understand what hospice really is, as discussed before. Sometimes, there is a sense that engaging hospice is tantamount to giving up on life, which is certainly not a Jewish value. But the truth is, hospice is an affirmation of our esteem for life. When curative treatment is no longer a reasonable option, hospice can give us a chance to make life meaningful even while compromised. (Obviously, the question of whether to stop trying to cure an illness requires careful consideration and consultation.) In addition, hospice’s focus on the patient’s well-being embodies the values of bikur cholim (the mitzvah of visiting the sick): remembering that someone who is ill is a person, not a patient, and seeing that we are taking care of what is important to them.
Jews who follow halacha (Jewish law) are often wary of hospice out of concern that it will not be sensitive to their religious needs. Indeed, halacha often does mandate certain approaches that are atypical for hospice, such as artificial hydration or nutrition. However, my experience has been that because hospice is focused on fulfilling the patient’s wishes, it is flexible enough to accommodate these needs as well. Sometimes this takes creativity, such as tailoring nutrition to make sure it is providing the maximum benefit. Involving the patient’s rabbi in communicating with hospice staff is paramount. With the right approach and a clear understanding of what hospice is, its benefits can and should be available to anyone.
By Rabbi Daniel Rose
Rabbi Daniel Rose is the rabbi for Jewish Hospice Services for Seasons Hospice and Palliative Care. He is also the assistant rabbi at Bnai Jacob Shaarei Zion Congregation in Baltimore.