Well before “Y” began showing noticeable signs of dementia, he had already had “the talk” with his three sons about what he wanted in the eventuality that he might need treatment or care but was unable to communicate coherently.
Among his wishes were that no matter what, he should not be force-fed.
So when he was diagnosed and started losing his cognitive abilities, what was once viewed as a potential yet unlikely scenario began to become very real.
However, even though they clearly understood what their father had said, it wasn’t such a simple request for the family to abide by in practice, and it became a real source of indecision and friction.
The aide who was hired to help care for their father insisted on Y eating to make sure he stayed healthy.
But how much is too much? They asked themselves, is that what their father meant by no forced feeding? Are we respecting his wishes?
Preparing for death with Jewish ethics
Preparing for terminal illness and death is something we naturally often choose to put aside. However, a new initiative by the Tzohar Rabbinical Organization is encouraging people to make preparations. It provides practical tools and support for individuals and families coping with the many ethical and medical dilemmas that can come with illness and end of life.
The case of Y’s family is very much representative of just the type of support the program offers.
Called Tzohar Through 120, based on the Jewish concept that life will optimally continue till the age of 120, the program provides educational seminars, online resources and a hotline that is available to 24 hours a day, six days a week. All services are provided completely free of charge. Staffed by a team of social workers and rabbis trained in these issues, the program’s organizers say they are uniquely positioned to provide a variety of support services at times when families need them most – and that the need for such a service is on the constant rise.
While the service deals with questions about all types of medical disease and for patients of all ages, the majority of issues relate to the elderly, many of whom are suffering from loss of their mental faculties and are unable to make decisions on their own.
“There is a distinct irony that because of advancements in medical science as well as diet and nutrition, people are living longer. But with longevity comes greater incidence of degenerative mental diseases and dementia that present more challenges as people age and reach end-of-life,” explained Rabbi Yuval Cherlow, an internationally respected Jewish ethicist who founded the program and directs its halachic service, so that families can abide by Jewish law.
“While our bodies are healthier leading to longer life, medical science has made less progress in combating mental decline which can present all sorts of dilemmas.”
WHEN Y’S SON called the hotline to ask about how to handle his father’s feeding, he and his brothers, two of whom live overseas, were able to discuss the situation all together and come to a medical and ethical conclusion that made them feel heard, understood and comforted in their decision.
According to Rabbi Cherlow, one of the main messages that Tzohar Through 120 is working to highlight is that many of those issues, which can often cause significant tension within families, can be avoided with proper preparation.
“We strongly recommend that every individual who is approaching older age begin to draft advance medical directives in coordination with a respected halachic and medical authority. This will allow family members and doctors to know what we want if and when the time comes for specific decisions to be made.”
He stresses that while there are universal concepts that should be included in such documents, details can vary greatly in individual situations. Rabbi Cherlow recommends that families don’t go it alone but work together with doctors and halachic authorities to create a document that will meet their needs and won’t be contested if they need to be implemented.
“Normative Jewish Halacha is strictly opposed to the idea that we can ever intervene in ways that are intended to shorten life, whether it’s directly or indirectly ending a patient’s life,” explained Rabbi Uri Ganzel, the program director.
“But at the very same time, Halacha is just as opposed to actively extending a patient’s life if they are experiencing significant pain and suffering, unless we know that the patient has specifically instructed their willingness to endure that suffering. Between these two perspectives are a massive spectrum of questions and dilemmas that require experience, insight and compassion and that’s what we’re working to provide.”
The questions that are presented via the hotline often require immediate responses and on occasion can involve consulting directly with the medical teams treating the patient. The social workers and rabbis who staff the service all have considerable experience working alongside hospital physicians and appreciate the myriad challenges that come with making these decisions.
Among the most pressing questions that are presented relate to patients who are very clearly nearing the end of life and have no prognosis for recovery. In those cases, questions arise from family members about when and whether their loved ones can be removed from assisted respiration and nutrition systems that are essentially the only things keeping these particular patients alive.
“Tzohar Through 120 gives families an opportunity to talk and listen to one another when they can so easily fall apart,” said Debbie Braitbard, director of social work services for Tzohar Through 120.
“When each member of the family is heard and understands the situation and realities, it’s a way to keep families united through the difficult times, which is nearly always the wish of the parents. They have a sense of peace knowing they are doing everything to address the issues in the most ethical and halachic way.”
Rabbi Ganzel explained, “We are routinely presented with questions from desperate family members who know that their loved ones are about to die and don’t want them to continue to suffer. They are looking to understand whether Halacha allows us to intervene in a way that will end that suffering, or at least give the doctors the ability to say they won’t do anything more to further prolong life.
“Each case requires sensitivity and experience to understand the exact details to ensure that we are acting in the patient’s and family’s full interest but also in accordance with best ethical practice and Halacha.”
FAMILIES THAT have benefited from the service describe confronting end of life as being a time of deep emotions and even chaos, when the ability to consult with an informed and objective outsider was invaluable.
“B,” whose father recently died, said the family relied heavily on the Tzohar Through 120 service to address the various dilemmas that they were forced to confront as soon as they realized that there would be no positive medical resolution to the case.
“We called the hotline in the late hours of the night. and all of the various family members were invited to explain their perspectives and their individual relationships with our father. Based on those conversations, the social worker Eden and Rabbi Eran helped us formulate the plan for his immediate treatment. A day later he passed away in peace and with us knowing that his suffering hadn’t been extended,” B said.
“Beyond just the immediate help Tzohar provided, we are thankful that because of this experience, it helped the communication and understanding within our family as it related to issues of the burial and bereavement, and we were able to relate to one another with calm and respect.”
In recent months, the initiative has expanded into public education efforts with an ongoing series of online seminars in English and Hebrew aimed at explaining the issues surrounding preparation for end of life. Programs have featured prominent Israeli physicians and professionals who are invited to address the medical aspects of the issues alongside Rabbi Cherlow, who discusses the ethical and halachic perspectives.
The first two programs in the English series welcomed Prof. Charles Sprung, director emeritus of the General Intensive Care Unit at Hadassah-University Medical Center in Jerusalem’s Ein Kerem, who commented on issues related to drafting advance directives as well as the role of palliative medicine in caring for aging loved ones.
An upcoming session will feature Dr. Shelley Sternberg, director of the Memory Clinic at Shaare Zedek Medical Center in Jerusalem and director of geriatrics at Maccabi Healthcare Services in the Jerusalem and Shfela regions that will be focused on issues relating to dementia.
To contact Tzohar Through 120: ad120@tzohar.org.il or call *9253■