“I believe the hospital did the maximum; half of my father’s passing was down to helplessness and loneliness”

End-of-life decisions have never been easy, but the coronavirus pandemic has changed everything in terms of patients’ rights and ability to decide about their final moments. Isolated from their families and facing rapid deterioration, many are forced to make life-and-death decisions on issues they had never contemplated. A special Shomrim report

End-of-life decisions have never been easy, but the coronavirus pandemic has changed everything in terms of patients’ rights and ability to decide about their final moments. Isolated from their families and facing rapid deterioration, many are forced to make life-and-death decisions on issues they had never contemplated. A special Shomrim report

End-of-life decisions have never been easy, but the coronavirus pandemic has changed everything in terms of patients’ rights and ability to decide about their final moments. Isolated from their families and facing rapid deterioration, many are forced to make life-and-death decisions on issues they had never contemplated. A special Shomrim report

Renen Netzer

Moni Bracha mourns his late father, Herzl. Photo: Shlomi Yosef

December 11, 2020

Summary

H

erzl Bracha, who died at the age of 69 after contracting the coronavirus, was a well-known and well-liked Likud activist in the northern Israeli town of Acre. According to his 40-year-old son, Moni, “he was a man who did a lot to help others.”

Moni recounts painfully how “my mother, my two brothers and I sat in the ambulance and watched the funeral on Zoom. We had to wait for everyone to leave before we got permission to get out of the ambulance for four or five minutes to approach the grave and say goodbye to Dad. But how can you say goodbye like that? We wanted them to let us touch him, kiss him. During the Shiva, too, we were all in our own homes, and we couldn’t receive visitors; people came to see us and stood on the other side of the fence. He fought the coronavirus alone, and he died alone. Within a week, he simply vanished. We couldn’t say goodbye to him. Even Hollywood couldn’t come up with such an insane script.”

It all took place in October, in Acre, at the height of the second wave of the pandemic. “On Saturday night, Dad was feeling weak and had a fever,” Moni relates. “A private doctor who came to see him at home didn’t like the sound of his lungs, and given that Dad suffered from diabetes, the doctor advised us to take him to the ER. When we found out that Dad had contracted the coronavirus, we all went to be tested and almost the entire family was found to be ill. We went into isolation, and Dad was admitted to the COVID ward at the hospital in Nahariya [Galilee Medical Center].

“We’re four siblings, and my sister was the only one who tested negative. But she wasn’t allowed into the ward, and if we want to give him anything, it was done through the staff. We spoke to him on the phone for three days, but by the fourth day, it was already hard for him to talk; his lungs were making it hard for him. The head nurse on the ward kept us updated. I can’t even begin to tell you how terrible it felt; he’s there alone, and we can’t be with him. Completely cut off. It’s an insane rollercoaster ride and it’s hugely stressful. Each call from the ward gives you a glimmer of hope or sends you plummeting down, depending on the update. You can’t be there with him, hug him, do something as basic as feed him.

“My mother, my two brothers and I sat in the ambulance and watched the funeral on Zoom" says Moni Bracha, "we had to wait for everyone to leave before we got permission to get out of the ambulance for four or five minutes to approach the grave and say goodbye to Dad. But how can you say goodbye like that? We wanted them to let us touch him, kiss him."

Moni Bracha: “Had we known what was going to happen, we would have hugged and kissed him. He was snatched from us too soon.” Photo: Shlomi Yosef

“On the Thursday, he was moved to the ICU, where he was sedated and placed on a ventilator. We had no idea if he had any special wishes or feelings about artificial respiration; we’d never discussed it. His lungs and kidneys soon collapsed, and he went into cardiac arrest and died on Saturday morning. Dad walked into the hospital on his own two feet, and we thought he’d be home in two or three days. Suddenly, there was a massive deterioration in his condition.

“I believe the hospital did the maximum, but I think that half of my father’s passing was down to helplessness and loneliness. He was used to being surrounded by people and felt cut off. Maybe if we had been with him, and if my mother, Datya, had slept close to him, it would have given him strength.

“My parents went everywhere together for 48 years. And suddenly she takes him to hospital, doesn’t see him for a week and can’t even say goodbye to him. When he was admitted, we were scared to get close to him in case he had the virus. Had we known what was going to happen, we would have hugged and kissed him. He was snatched from us too soon.”

THE DEATH:

A quick and cruel decline

To date, Herzl Bracha is one of more than 3,000 Israelis who have died after contracting the coronavirus. With a third wave of infection seemingly imminent, his tragic death mirrors the stories of numerous others who have fallen victim to this virus – a quick and cruel decline, hospitalization and a battle with illness, severely shaken and isolated, and finally, death, all alone, without their loved ones by their side, often close by but without an opportunity to say goodbye.

“There’s a lot of ‘unfinished business’ in the mix, and not having a proper goodbye leads to a great deal of pain and grief,” says Dafna Sadeh Tasa, a social worker and psychotherapist who facilitates group sessions on coping with death. “It’s a huge difficulty for the people closest to the person who has passed away, and it can stay with them for years to come. The person dearest to them has suddenly disappeared.”

The complex and charged issue of end-of-life care is not a new one, but COVID-19 has taken it to a new level for everyone – patients, families and medical personnel alike. In many respects, it has left the whole issue in disarray. “This is a very harrowing illness because it brings about a very rapid change in the lives of people who felt fine just a week earlier,” says Mike Schultz, director of spiritual care at Rambam Hospital in Haifa. “I sit and talk with patients and some of them are filled with a genuine sense of fear about what’s to come, what’s going to happen to them; it’s a very distressing uncertainty. In other words, the decline could be quick, and it’s accompanied by awareness.

“The patient says to himself: ‘I could die in two or three weeks.’ Or: ‘It may be tough, but I’ll recover and go back to the life I had.’ There’s usually a time of self-reckoning, too, and at that stage, there are some patients who really want to talk. Some want to talk about the changes they’ll make in their lives after they recover. And it’s precisely then that they’re totally isolated and go through the entire day without really talking to anyone face to face.”

Prof. Daniel Shepshelovich: “These kinds of conversations can be unpleasant and alarming. We conduct the conversation in the patient’s room, wearing space suits, which aren’t exactly conducive for interpersonal communication. Then the individual remains in the room, sometimes for an entire day, during which they hardly see a soul."

Prof. Shepshelovich: “It’s very tough, especially for the young doctors, but not only them.” Photo: Bea Bar Kallos

Prof. Daniel Shepshelovich, deputy head of Internal Medicine at Tel Aviv Sourasky Medical Center, also describes the rapid decline in the condition of patients as “a big shock to the family.” The family, he adds, “don’t always see the person in question after the deterioration; in their minds, they see him the way he was four days earlier, when he was still feeling okay. That difference is tough to take in.

“It’s relatively rare in normal times for someone to come to a hospital in what we view as almost full health – a little overweight or slightly high blood pressure; what the media define as ‘background illnesses’ – and have them decline so quickly and die. It’s a very harsh death, for the families first and foremost, and for the medical staff. Many coronavirus patients die without family by their side, which is seen as unnatural, and we’re seeing an abundance of these kinds of situations during this period.”

The emotional distress caused by this rapid multiple system failure in coronavirus patients is shared by the medical personnel caring for them. “It’s harrowing to be so close to life that ends in a flash. Immediately moving on isn’t always the right thing to do. It’s important to air things so that they don’t remain bottled up inside,” says Schultz, who is involved in a pilot program at Rambam Hospital called Pause, aimed at helping staff cope with exactly this issue.

“The team convenes for a few minutes to say our goodbyes to the patient. We say that a human being was with us, and is no more; that they lived a full life before falling ill; that we did our best and provided all the care and treatment we were able to. We pause for 30 seconds of silence, and whoever wants to can tell us about conversations they had with the individual and if they had a chance to learn anything from them. We know from studies conducted around the world that this eases the pain; it allows the medical team to be fully focused on the next patient, with less of a sense of mourning to bear.”

Shepshelovich agrees. “It’s very tough, especially for the young doctors, but not only them,” he says. “Some of our doctors went through very difficult experiences and needed some time off and support, primarily due to the rapid loss of patients who arrived in almost complete health. It can make you feel that it could easily happen to people close to you. Staff members were very concerned about the possibility that they could infect their family members, and some even refrained from seeing them.”

THE PATIENTS:

Dilemmas of control and loss of control

Both life and death have been rocked by COVID-19, yet absent from Israeli public discourse right now, of all times, is the end-of-life issue itself and the rights of the patient. The coronavirus crisis could have been used to promote awareness of Israeli law, which allows all individuals to determine how they want to be handled in their final moments and make it clear what kind of medical care they wish to receive and what they wish to avoid.

“There is no active advocacy on end-of-life issues in Israel, and there hasn’t been for years,” says Anat Maor, chair of Lilach (The Israel Society to Live and Die with Dignity) and former Knesset member for the Meretz party. “Now’s the time to make the information accessible to the public,” she says. “A non-profit can serve as a catalyst for the issue, but we’re talking about state legislation, and the state should be the one to publish the information so that everyone can be aware of their rights.”

Two laws chart the way in Israel: Under the Patient’s Rights Law (1996), an individual must give explicit consent before undergoing any medical procedure on his/her person; and according to the Dying Patient Law (2005), an individual has the right to choose the end-of-life care he/she is willing to receive, with the law allowing a dying person to decide whether or not to receive treatment designed to prolong life (such as chemotherapy or being put on a ventilator). “A dying patient,” as defined by the law, is someone who, even with optimal care, has a maximum life expectancy of six months.

The coronavirus pandemic has complicated matters still further. What happens, for example, if someone has declared that they don’t want to be ventilated to artificially prolong their life in the event of a terminal illness, but requires mechanical ventilation as a coronavirus patient? Do acutely ill COVID-19 patients fit the definition of a dying patient? After all, the coronavirus is not a terminal illness and surprising miracles have been seen worldwide.

“There are instances in which people change their minds and say: ‘Yes, I signed end-of-life instructions in the past, but now I want you to do whatever’s necessary’,” says Shepshelovich. “There have also been situations in which patients have told us that they refuse to be put on a ventilator, whereas the families have said: Do everything, including ventilation. If a patient is of clear mind, I’ll respect his/her wishes and allow the family to speak to him/her.”

Marwan Mansour, 48: "The oxygen levels in my blood were getting lower and lower, so they hooked me up to a machine that provides maximum oxygen, but that also wasn’t enough. The staff would come to see me and kept talking to me about being put on a ventilator, but I refused to give my consent in the beginning. They said: ‘We won’t do anything you don’t agree to."

Marwan Mansour: “Giving my consent to be sedated and put on a ventilator was the first time in my life that I thought about death.” Photo: Rambam Health Care Campus

“For me,” says Marwan Mansour, 48, from Haifa, “consenting to be sedated and put on a ventilator was the real moment of truth during the hospitalization period – the moment of truth in terms of emotions, fears, indecision, thoughts of death. It was the first time in my life that I thought about death. It’s very tough. It’s not something that concerned me in the past. When a person is sedated, he’s in someone else’s hands, and that’s the last decision he takes himself. It’s a very tough decision to make.”

Mansour, a project manager for the Solel Boneh construction and civil engineering firm, spent a month in Rambam Hospital and was discharged a few weeks ago. After being admitted to the coronavirus ward, he says, his condition deteriorated rapidly. “The oxygen levels in my blood were getting lower and lower, so they hooked me up to a machine that provides maximum oxygen, but that also wasn’t enough. The staff would come to see me and kept talking to me about being put on a ventilator, but I refused to give my consent in the beginning. They said: ‘We won’t do anything you don’t agree to.’ I began consulting with family members, including doctors, over the phone. They said the doctors always want only what’s best for me and they have the experience. When my condition deteriorated, I was transferred to the intensive care unit and was told that they wouldn’t hook me up [to a ventilator] in the meantime, but that I’d be closely monitored. Two oxygen devices there were of no help to me either.”

And you’re cut off from your family?

“That’s right. I infected my entire family, my wife and two daughters, and they were in isolation when I went into hospital. My wife spoke to me and the staff on the phone all the time, even in the small hours of the morning, and she came to see me after her isolation.”

Tell me about your decision to consent to be put on a ventilator.

“In the early hours of the morning, between Friday and Saturday, they told me that my blood oxygen levels were extremely low and they were going to have to sedate me. They said they had no alternative – that it’s the only solution. I was distraught; I was at my very lowest point of despair. Until I finally said: Okay, do whatever you think is right. It was a spur-of-the-moment decision. Those were my last words before I was put under. I didn’t know what was going to happen next. I didn’t know when I’d wake up, and the staff doesn’t say and doesn’t try to delude you. I no longer knew anything about my body, and I’m a completely healthy person, without any background illnesses. I didn’t even have the time to let my wife know, and I didn’t want to frighten anyone either. The staff informed her.”

“There’s a lot of ‘unfinished business’ in the mix, and not having a proper goodbye leads to a great deal of pain and grief,” says Dafna Sadeh Tasa, a social worker and psychotherapist who facilitates support groups on coping with death. “It’s a huge difficulty for the people closest to the person who has passed away, and it can stay with them for years to come.

The staff in the corona ward at Haifa’s Rambam Hospital: “It’s harrowing to be so close to life that ends in a flash,” says Mike Schultz. Photo: Bea Bar Kallos

Very fortunately, Mansour says, “my body responded well and they brought me round after four days. To me, it felt like a minute. It helped a lot and my situation improved. I couldn’t talk for two days, and for several days, I couldn’t stand up or get out of bed; my body gave up on me. I’ve started rehabilitation and physiotherapy, and it’s a long process. The doctors can’t say how long it will take; it could be months. Now, at home, I’m hooked up to an oxygen tank round the clock. My body’s weak and tired; the slightest bit of effort, even walking to the bedroom, leaves me breathless. It’s hard to explain to someone healthy the kind of fatigue experienced by a coronavirus patient. I forget things too. It’s a slow recovery and I’m fearful of the possible long-term damage.

“I took great care to avoid the coronavirus and it caught up with me, a young and perfectly healthy man. The danger is lurking just beyond your front door every day, every hour,” Mansour adds. “You shouldn’t reject what the doctors have to say, and you shouldn’t leave the decision to the last minute, just before the situation becomes even more problematic.”

THE MEDICAL STAFF:

Between a rock and a hard place

The Public Committee for the Prioritization of Severely Ill Patients, which includes representatives from the Israel National Bioethics Council, the Health Ministry and the Israel Medical Association, convened last April and recommend that coronavirus patients be informed of the chances of success of invasive treatment, with the medical teams, including palliative and spiritual care professionals, currently required to raise and discuss end-of-life issues with the patients.

To say that the issue was discussed under less-than-optimal conditions would be an understatement. “Certain hospitals have put together a checklist of questions on the subject for the patient,” says Dr. Maya Peled-Raz, a lawyer, clinical ethicist at Bnei Zion Medical Center, and a lecturer at Haifa University’s School of Public Health. “Some patients are admitted to hospital in a sound state of mind, but aren’t ready for a talk about the end of life and don’t respond well from the outset. It’s very hard for a patient to be brutally confronted with such an issue when they’ve never discussed the matter before at all.”

“These kinds of conversations can be unpleasant and alarming,” says Shepshelovich. “We don’t initiate them with people who arrive with relatively mild symptoms, and certainly not when seeing them for the first time, before they get to know us. We learned relatively early during the pandemic to identify who would be here for a few days and then be discharged, and who was at risk of deteriorating. We talked at a relatively early stage with patients who came with underlying conditions such as obesity, high blood pressure and diabetes, or if we felt their lives were in danger. The coronavirus has made it even harder to deal with the issue because of the limited interaction with the patients.”

Can you set the scene for us?

“We conduct the conversation in the patient’s room, wearing space suits, which aren’t exactly conducive for interpersonal communication. We lay out the options; and when it comes to the coronavirus, the relevant intervention is usually sedation and ventilation. We explain the significance of such a procedure and what could happen further down the line.

“The problem is that the individual then remains in the room, sometimes for an entire day, during which they hardly see a soul, their heads filled with thoughts about the things they were just told by someone they’ve never met before, someone who has no idea of their emotional state and how they and their families view the issue.

Dr. Maya Peled-Raz: “Certain hospitals have put together a checklist of questions on the subject for the patient. Some patients are admitted to hospital in a sound state of mind, but aren’t ready for a talk about the end of life and don’t respond well from the outset. It’s very hard for a patient to be brutally confronted with such an issue when they’ve never discussed the matter before at all.”

The coronavirus ward in the parking garage of Haifa’s Rambam Hospital. Photo: Bea Bar Kallos

“Of course, it would be easier for the medical staff – and this holds true not only for coronavirus patients – if there was more awareness of the issue, and if more people would come to hospital with clear wishes in this regard. Under such circumstances, I could go back to being a doctor and wouldn’t be required to clarify patients’ treatment wishes at such an unstable time, when it’s harder to speak to them and their concerned families.”

How do people respond to these conversations?

“We encounter a range of reactions. The vast majority of young people say, ‘Of course, do everything you can,’ and that’s what gets done from a medical perspective. Some people think the very question itself is out of line and respond with: ‘Are you asking if you should treat me? Yes, treat me.’ Others come with their answer prepared in advance. And some say they need time to think about it.

“On the one hand, the last thing we want is for them to feel we’re pressuring them; on the other hand, time is sometimes very short. And some of the people are focused solely on breathing and aren’t in any fit state to have such conversations. In these instances, we try to ascertain from family members if any of them have made preliminary arrangements or expressed any specific wishes. These situations can be complex; sometimes we’re dealing with several family members, some of whom think the patient has expressed clear wishes, while others believe very differently. Having conversations likes these over the phone, with people you’ve never met, is even harder, from a compassionate perspective too.”

When it comes to severely ill coronavirus patients, mechanical ventilation is the crux of the matter. “Our biggest battle for a COVID-19 patient is waged up until the ventilation stage. Patients we’ve managed to treat effectively before then, with medication and supportive care, and have managed to keep them from requiring ventilation, have a better chance of recovering,” says Peled-Raz. “When we approach the families to talk about ventilation, they often don’t even want to talk about the possibility. We explain that the person dearest to them is in serious condition and that if we put them on a ventilator, there’s a very good chance that they won’t come off the ventilator. But a significant number of them aren’t willing to discuss withholding treatment and say: ‘He’ll pull through,’ or ‘Fight for him to the end.’ They aren’t open to any discussion at all.”

What exactly do you mean when you say ‘withholding treatment’?

“For example: Deciding to fight aggressively, right up to the point that ventilation is required, but then choosing not to ventilate. Mechanical ventilation often involves so many other things too, such as dialysis. It has a huge snowball effect. Other wards face these same dilemmas – the question of when is the right time to withhold treatment, how to raise the issue with the families, what do you do when a patient has pointed you in a certain direction and the family says the exact opposite.”

“There are situations in which a family says ‘Ventilate,’ even though it would be of no medical benefit,” adds Shepshelovich. “I think it’s a little unfair to ask a patient’s children to say: ‘Don’t put Mom on a ventilator.’ It’s a complex situation, and a lot of people can’t make that decision; they can’t go off to bed afterwards and look themselves in the mirror. Often, they’re actually doing it for themselves, and I can well understand them.

“In a certain sense, it’s much easier to sedate and ventilate than it is to sit down with someone and their family and explain why we think it would be to no avail and that it could cause unnecessary suffering, and go through the whole process with them. If someone thought we should [ventilate], then we did so. In other words, we always tended to intervene even if the team wasn’t always sure it would benefit the patient. On the other hand, however, putting us in a position in which we have to make the decision? That’s not our job.”

LEGAL STATE VS. EMOTIONAL STATE:

“Horrific anxiety”

According to Health Ministry data shared with Shomrim, out of a population of around 9.1 million, including approximately 1.093 million senior citizens, only some 26,000 Israelis have officially notified the government of their wishes in keeping with the Dying Patients Law. Around half of them – 13,389 – have done so since the beginning of 2020. This represents a significant increase during the coronavirus period, but the numbers are still minuscule. The vast majority of Israel’s elderly population find themselves in hospital without having considered the issue beforehand.

Mike Schultz: “I sit and talk with patients and some of them are filled with a genuine sense of fear about what’s to come, what’s going to happen to them; it’s a very distressing uncertainty. And it’s precisely then that they’re totally isolated and go through the entire day without really talking to anyone face to face.”

Mike Schultz. Photo: Rambam Health Care Campus

The same is true when it comes to a newer course of action permitted by law since 2017 – the durable power of attorney. In short, this is a legal document that authorizes someone else to handle certain matters, such as finances or health care, on your behalf. Under the law, anyone over the age of 18 is entitled to draw up such a document, which is then deposited with the Administrator General at the Justice Ministry. Powers of attorney like these have also doubled since the outbreak of the coronavirus crisis, with 19,109 such documents received by the ministry between March and October 2020, as opposed to just 9,080 during the corresponding period in 2019.

The durable power of attorney is not merely a procedural matter; the forms and resulting document are only the culmination of a process that includes looking the issue of death in the face and giving it a great deal of thought. “I come from a family in which no one spoke about death,” says Varda Todres Yagil, 83. “As I get older, the subject frightens me less. It has always intrigued me and sparked questions about the meaning of life and death.”

Todres Yagil lives at the Mediterranean Towers retirement residence in Nordia. About a decade ago, she signed an advanced healthcare directive, and two months ago, she also drew up and registered a durable power of attorney. Her family, she says, was her motivation for doing so. “Especially because I have an only child,” she continues. “When we reach these ages, our children aren’t that young either, and this issue can sometimes become a burden on family members, especially if one says ‘yes’ and another says ‘no’.”

Long before the coronavirus crisis, staff at retirement homes and assisted-living facilities held such conversations with their residents on a regular basis. “In our circle, among family and friends, people have signed directives. It’s easier, too, with the help of staff,” Todres Yagil says.

“I’m not that scared of the coronavirus; you can recover from it and there are more serious illnesses. But if you suffer a severe stroke, you aren’t going to be healthy again. And even if you’ve been hooked up to the devices, the chances of being taken off them are slim, and it could become a burden for the family for a long time. We know by now that we aren’t going to come round and take up jogging. We’ve lost the hope of going back to what we once were,” she concludes.

“We present the issue to the patient as a right. It’s important for each patient to have a properly laid-out treatment plan for quality of life and minimum suffering,” says Dr. Natalia Zaygraykin, medical director at the Nesher-based rehabilitation hospital for the Maccabi HMO’s Bayit Balev chain of retirement residences. “The issue of palliative care comes up often with our residents, and it’s something that is being discussed more and more at the various facilities.”

How are these conversations conducted?

“We let the resident decide if they want to be alone or have a family member with them. Some of them choose to make the decisions themselves, so as not to burden their family with tough choices. We try to do things as delicately as possible and move forward in keeping with the resident’s knowledge of the matter.”

The website of the global initiative known as Death Cafe recently declared that, “Never has there been such a need to talk about death and dying, and we are not able to meet each other face-to-face to do this, with, as yet, no specified end.” In the framework of the initiative, born in Europe in 2004, strangers get together at cafés (on Zoom or in open-air locations during these times of pandemic) to talk about the end. According to the website, the venture has already reached 74 countries, with some 11,800 meetings having taken place around the world thus far, and increasingly so on the backdrop of the pandemic.

In Israel, the initiative was spearheaded by Prof. Amia Lieblich, and her book, Death Café 2016, focuses on a group that would meet at her house. Other groups in Israel are also dealing with the issue these days, with two such groups set up at the start of the coronavirus crisis by Sadeh Tasa. “Talking about death is encountering life,” she says. “Discussing death is refreshing, it releases some brakes; it promotes life and can sometimes even be funny, because it’s impossible to speak about such things without a little humor.”

What is the purpose of the groups?

“To make talk of death accessible and to make friends with the issue; to serve as memento mori, but not just to be terribly afraid of death. After all, people’s biggest fear is the fear of death, and there aren’t any schools that teach us how to deal with it. I volunteer at mental health centers and speak to the elderly and younger people too, and COVID-19 has undoubtedly raised the level of anxiety, but I’m not sure if this colossal event has done enough to promote a wider public discourse on the subject of death.

“This period,” Sadeh Tasa adds, “hasn’t provided us with sufficient tools to publicize the issue, and it is one that is certainly worth promoting in Israel. On the other hand, the issue is an intimidating one and comes with a host of difficulties; it’s horrific anxiety. Just like Irvin Yalom says in his book, Staring at the Sun: We struggle to look at our own death in the same way that we struggle to look at the sun.”

Legal changes in the pipeline? Lilach’s campaigns and the Health Ministry’s response

Lilach (The Israel Society to Live and Die with Dignity) was established in 1987, with the goal of safeguarding the rights and improving end-of-life care for terminally ill patients. Recently, it launched publicity drives and advertising campaigns aimed at significantly boosting the number of Israelis who sign advanced healthcare directives. One initiative that Lilach is trying to promote through the Health Ministry involves the inclusion of a question relating to an advanced healthcare directive in a hospital admittance form.

Lilach is also trying to promote amendments to the Dying Patients Law. These amendments are based on recommendations formulated in 2015 by the Afek Committee, a panel that was set up by then health minister Yael German to examine ways to improve the legislation. Its work, however, was interrupted by early elections. “The committee’s recommendations are just as relevant today. There’s no need to do the work all over again,” says Lilach chair Anat Maor. “In the past few weeks, our president, former Supreme Court Justice Eliyahu Matza, drafted a private law proposal based on these recommendations. We’re working to get the bill onto the Knesset agenda as quickly as possible, before it’s dissolved.”

The proposed amendments include the granting of the right to discontinue ongoing medical care for a dying patient – even if the discontinuation may result in his or her death; the addition of the option to refuse to receive “supplementary care;” the expansion of the six-months definition in certain medical conditions; and the simplification of the advanced healthcare directive procedure.

Anat Maor. Photo: Wikipedia

Lilach also recommends budgets for training medical staff to implement the Palliative Care Law at home and in hospitals, and also wants emergency service personnel to be instructed to refrain from coercing treatments. “The absurdity is that an ambulance shows up and the patient is immediately hooked up to machines, without anyone asking them or their family what they want,” says Maor, who, two decades ago, submitted Israel’s first private-member bill on the right to refuse life-prolonging care (together with former lawmaker Avi Yehezkel).

Apropos proposed legislation, in October, the Knesset debated a bill submitted by Yesh Atid lawmaker Ofer Shelah, which would have allowed for euthanasia in keeping with a doctor’s prescription in specific situations, such as exists in certain U.S. states like Oregon. The bill, however, was rejected on its preliminary reading. “For various reasons – the nature of Israeli society, the nature of Israeli politics – the state is shying away from a discussion on the end of life,” Shelach said at the time. “This is an issue that should be moved forward and is being moved forward around the world all the time for reasons that are plain to see.”

Discussions have in fact been held on the national program for palliative care and end-of-life situations that was launched by the Health Ministry in 2016. Nevertheless, a paper put together by senior ministry officials in October 2020 reveals that all four HMOs have been doing insufficient work in the field itself, in terms of preparations in the community for providing palliative care. The average grade among the districts and clinics was just 58 percent.

“The figures presented in the document apply to 2018,” the Health Ministry said in response, noting that work has been done in 2019 and 2020 “to improve palliative care for the designated population, via the implementation of palliative care services in the HMO districts.”

As for steps to make people aware of the law, including the use of durable powers of attorney, the Health Ministry said that it’s currently in the process of filming “four short video clips that will soon be uploaded to the ministry’s website, presenting the issue to doctors in the community and hospitals. The videos are designed to encourage patients to fill out the forms, to help in dealing with the problems when it comes to discussing the issue, and to provide instructions on how to complete the forms. They will also be available to the general public.”

The ministry also stated that “we are at an advanced stage of creating online lectures for the general public that will be uploaded to the Health Ministry website and elsewhere.”