The following is a news article from The Times of Israel, that provides an overview of the Lilach Society.
Few Israelis plan for end-of-life care. A purple bracelet seeks to change that
Lilach hopes its brightly colored DNR bracelets will bring attention to the Dying Patient Act, helping spread awareness of choices adult Israelis can make when faced with death
By Renee Ghert-Zand, 5 May 2023
If you see an Israeli wearing a purple silicone bracelet, don’t assume it is merely a fashion statement. The colorful band stamped with “DNR” (Do Not Resuscitate) is actually a way of communicating to medical staff that the wearer has filled out an advance health care directive and wants their end-of-life treatment choices to be respected.
The bracelets are an initiative of LILACH – The Israeli Society to Live and Die With Dignity, a non-profit that lobbied for the passage in 2005 of Israel’s Dying Patient Act.
The law prohibits active euthanasia but allows patients to instruct medical staff not to provide treatment at the end of their lives. The law also requires the health system to offer palliative care to dying patients. LILACH educates the public about the law and encourages Israelis to fill out the forms necessary for making their wishes legally binding and known to the healthcare system.
Although the Dying Patient Act has been on the books for 18 years, only 40,950 individuals aged 17 and up (less than half a percent of the adult population) have completed any of the relevant documents. These include an Advance Directive for a Dying Patient (Living Will), the appointment of a Healthcare Proxy, and an Ongoing Power of Attorney.
“It is a civil and human right of every person to be able to make these choices,” said Efrat Klipper Dugma, a lawyer who volunteers for LILACH.
Dugma donates her time explaining the law and the legal aspects of the related forms at various forums and to individuals who call for advice. She can witness the signing of documents and guides people through filling out some of them.
She is one of the relatively few specially trained Israeli attorneys who are authorized to prepare and execute an Ongoing Power of Attorney, which is more comprehensive than the other forms and takes effect before a person becomes a “dying patient.”
Dugma sees all the forms as “insurance policies” and wants Israelis to consider them as important as the ones they get to cover their homes, cars, and lives.
A lack of awareness about the law
The enactment of the Basic Law: Human Dignity and Liberty in 1992 paved the way for the eventual passage of the Dying Patient Act, which LILACH chair Anat Maor proposed in 1995 when she was a member of Knesset. It took much debate and a full decade before it was passed into law.
“All three of the major religions [in Israel] support the prevention of suffering. It’s a matter of preserving human dignity,” she said.
LILACH, which mainly works from the legal angle, has a liberal rabbi among its volunteer leaders. It also collaborates with the religious Zionist Jewish organization Tzohar, which battles the misconception that Jewish law dictates that a person’s life must be extended as long as possible at any cost.
It could be that Israelis don’t want to think about their deaths. However, Maor told The Times of Israel she doesn’t think it is that nor any outright opposition to the law that has prevented people from filling out the forms, but rather a lack of awareness that they exist. (By comparison, one-third of Americans have completed advance directives.)
“The lack of publicity is a real problem,” she lamented. “Even medical staff are not knowledgeable about the law and the forms.”
“We handle many cases where families of terminally ill patients turn to us for help in intervening. We operate according to the law and we do what we can to help,” she said.
At the annual LILACH conference in Tel Aviv in March, Yael German said that when she was appointed health minister in 2013, she was aware of problems with the law.
“I knew the law on the books was complicated and unknown, so we appointed the Afek Committee to work on updating it. We brought in medical, ethics, and religion experts but then the government fell apart in 2014. Then [Yaakov] Litzman [of the United Torah Judaism party] came in as health minister and squashed it. Since then it’s been stuck,” German said.
Amendments to the Dying Patient Act were passed in 2017, and additional ones aimed at overcoming barriers to the law’s implementation were submitted to the Knesset Health Committee on March 20.
? 'Who is a 'dying patient
“A dying patient” falls into two categories. The first is a terminally ill person who — even if they continue to receive treatment — is not expected to live more than six months. The second is a person who has suffered the collapse of several bodily systems and is not expected to live more than two weeks. Both fall under the law if they do not want their lives prolonged through medical intervention.
As long as such a person is aged 17 or older and mentally competent, that person can tell their doctor what they want to be done and can revoke any prior legally signed directives.
If the person is not mentally competent, medical staff must first check to see if the person completed any advance directives or assigned a healthcare proxy. If not, medical staff must consult with family members or friends, look for any other documents that might indicate what the patient would want, and possibly consult with an institutional committee. The level of suffering experienced by the patient must also be taken into account.
A person aged 17 or older can fill out advance directives at any point — including when they are deemed “a dying patient” — as long as they are mentally competent. All forms must be witnessed by two people who are not related to the person completing and signing the form.
An Advance Directive must be completed with the help of a physician or nurse. The same is true for a Healthcare Proxy form. This is because both forms are long and contain a lot of medical terminology. In the case of “a dying patient,” a physician who specializes in treating the patient’s illness must be the one to assist.
“We have tens of nurses volunteering to help people fill out these forms,” LILACH’s Maor said.
However, it’s a different story when it comes to getting assistance from physicians.
“One of the obstacles is that doctors, unfortunately, don’t have time to help fill out the forms. Also, prognosis is not exact and it is hard for doctors to talk to patients about end of life,” said Dr. David Hausner, head of palliative care services at Sheba Medical Center.
Palliative care has emerged in Israel only in the last decade, with only 50 doctors and 150 nurses (mostly part-time) working in the field. According to Hausner, it is important to educate physicians that advance directives allow doctors to have discussions with patients and families not only about “do not resuscitate” decisions, but also about treatment options and quality of life considerations.
Hausner said that as a first step, Sheba has started a program in which doctors engage in these kinds of conversations with actors playing patients. He also mentioned that Ichilov Hospital has opened a center to help people fill out the forms.
A shorter Healthcare Proxy form is available and does not require the assistance of a medical professional to complete. As with the longer Healthcare Proxy, you name someone to make medical decisions for you if you are medically incapacitated or unconscious. The only choices you can indicate on this shorter form are whether or not you want any kind of resuscitation, the start of any type of artificial respiration, or artificial feeding.
There is no legal requirement to file the forms with the Health Ministry, but it is highly recommended to do so. The Health Ministry keeps these forms in a database and makes the information available to hospitals by flagging patients’ electronic medical files. This system and access to the relevant database exist in almost all public, general, psychiatric, and geriatric hospitals.
“We are working at adding Clalit Health Services and its hospitals, and the Meuhedet and Leumit HMOs. Maccabi Health Services is already connected,” Health Ministry representative Ayala Gerber said at the LILACH conference.
The Health Ministry carefully reviews each form submitted and alerts people if there are any problems with it. It also sends people reminders to renew their forms before they expire at the end of five years.
According to Gerber, the Health Ministry is working towards an option for the forms to be completed online.
?Why the purple bracelets
Anyone who becomes a member of LILACH is entitled to receive a purple DNR bracelet. (Lilach is Hebrew for lilac; hence the color.)
The organization hopes that family members, friends, and even strangers will spot people wearing the bracelets and ask about them. Perhaps they will join LILACH too, or will at least talk about end-of-life decisions with their loved ones.
“It’s important for people to know what you want because it is legal to not connect someone to a breathing machine, but it is illegal to take someone off one,” former health minister Yael German said.
Health Ministry statistics show that the number of people filling out the forms has risen very slowly over the years. Not surprisingly, there was a spike during the COVID pandemic, with 30,769 forms submitted from 2020-2022.
Although LILACH, the Health Ministry, and palliative care practitioners encourage younger people — as well as the elderly — to complete the forms, the reality is that 89 percent of the forms are filled out by individuals 65 and older. Women complete the forms at significantly higher rates than men.
“I signed up with LILACH two years ago,” Ronit, 74, said as she showed The Times of Israel her purple bracelet.
Her 73-year-old husband Zvi had come with her from their home in Tel Aviv for the conference and said he was going to sign up and get a bracelet.
“We are doing this to make it easier on our family. We want to prevent unnecessary suffering for us and those around us when the time comes. Everything has a beginning and an end,” Ronit said.
“You can’t blame paramedics and emergency room doctors and nurses for wanting to save your life. They just don’t think to ask whether you have an Advanced Healthcare Directive or Healthcare Proxy,” Dugma said.
The goal is to get hospital staff to automatically think to check if a patient has filled out the forms. If a purple bracelet will get their attention and serve as a reminder, then all the better.
“I have been a LILACH member for 7 years,” said 68-year-old Shlomit from Tel Aviv.
“I like to have control over how I live, and I want to have control over how I die,” she said.