end-of-life

It’s all about love and family

Last Flight Home follows Air Florida founder Eli Timoner’s last weeks of life. (still from film)

The Vancouver International Film Festival opens Sept. 29, and this year’s festival will be impressive, if the releases reviewed by the Independent are any indication.

Last Flight Home, a very personal and moving documentary written and directed by Ondi Timoner, will have viewers in tears. It will also have viewers contemplating mortality, family and what makes life full and worth living.

The film follows the last weeks of Timoner’s father Eli’s life. No stranger to hardship – he had been paralyzed on his left side since a stroke almost 40 years earlier – a bedridden 92-year-old Eli tells his family he wants to die. Immediately. Living in California, he could make that choice, and does make that choice. Once he passes the state assessment, the required 50-day waiting period begins.

During this time, Eli says his goodbyes to his wife, kids, grandkids and other relatives, to friends and to former employees. He offers advice and, with the help of those whose lives have been made better by his existence, he comes to love himself, finally shedding, after decades, the shame he felt at not being what he considered a good provider for his family. Before his stroke, he had been a wealthy businessman – founder and head of Air Florida – but, afterward, he and his wife had to declare bankruptcy and money was tight from then on.

Thankfully, Eli had those 50 days. While it was sad that he didn’t know how successful he really was in life until he chose to die, at least he did die knowing that he had loved and that he was loved.

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photo - In Karaoke, married couple Meir and Tova rediscover their love for each other — In Karaoke, married couple Meir and Tova rediscover their love for each other. *(still from film)*

The Israeli film Karaoke, written and directed by Moshe Rosenthal, also deals with mortality and late-in-life realizations. Long-married couple Meir and Tova have long lost their passion for each other and, really, for living. It takes the arrival of a new neighbour, Itsik, to bring out both the best and worst in them and in their relationship.

Itsik is rich and confident, a player in every sense of the word. While his loud karaoke parties annoy most everyone in the building, the residents who gain the privilege of an invitation feel not only special, but a little superior, more worldly, as they open themselves up to the possibilities that Itsik embodies.

Billed as a comedy, Karaoke is more cringey than funny, and the musical score even makes it seem creepy at times, as does the pacing and lighting. That said, the acting is excellent and it does have some funny moments. As well, the messages are refreshing: love can be reignited and you can have adventures at any age.

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photo - To make Killing Ourselves, Maya Yadlin got her parents and sister to come out to the desert to film — To make Killing Ourselves, Maya Yadlin got her parents and sister to come out to the desert to film. *(still from film)*

To make the 15-minute short Killing Ourselves, Israeli filmmaker Maya Yadlin took her parents and sister to the desert. According to her bio, this is something Yadlin often does – make movies about and starring her family. The result in this case is a delightful, amusing peek into their relationships. Most viewers will appreciate the interactions, with her parents both begrudgingly and proudly helping “film student” Yadlin with her homework and her sister, an actress, coming along for the ride – and the work.

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VIFF runs until Oct. 9: viff.org.

We must plan for our death

While our ultimate death is a certainty, when and how we will die is unknowable. And though death is inevitable, it remains a taboo subject for most. None of us knows what the future will bring. It is better to be prepared, so that if you become unable to make medical care decisions, your designated family members and healthcare providers, if you have talked to them, will have the knowledge and confidence to make those decisions for you.

As long as you are capable of understanding and communicating effectively with your doctor, nurse or other healthcare provider, you will be asked to make your own healthcare treatment decisions. But a serious accident or illness can result in you being incapable of making your own healthcare decisions at the time care is needed. This is why thinking about your preferences and talking to your future decision-makers now is so important. Making an advance care plan is a choice that will help alleviate some of the stress your family and friends could face if they are required to make important decisions for you, including who, exactly, you want your doctor to approach to learn about your wishes.

Advance care planning begins by thinking about your beliefs, values and wishes regarding future healthcare treatment and talking about them with selected family members or friends, as well as your doctor. When people you trust know what is important to you, it will be easier for them to make treatment decisions on your behalf.

Healthcare providers will always offer medically appropriate healthcare based on clinical assessment. They will want to ensure that any symptoms like pain, dizziness, nausea, bleeding or infection are understood and addressed. As long as you can understand and communicate, your healthcare provider will explain the medically appropriate care best for you, including any risks, benefits or alternatives. They will also ask if you have any questions and if you wish to accept or refuse the proposed healthcare treatment.

Some of the hardest decisions deal with the use of life support and life-prolonging medical interventions. These can include a ventilator to help with breathing, tube feeding, kidney dialysis, or CPR to restart the heart and lungs. If you were to have a life-threatening illness or injury, would you want to accept or refuse CPR? All, some, or no life support or life-prolonging medical interventions? A trial period of life support and life-prolonging medical interventions, allowing a natural death to occur if your condition is not improving?

Your advance care plan should at a minimum include these three things:

Having conversations with selected family members, friends, your family doctor and, if applicable, your spiritual leader, about your beliefs, your values and your wishes.
Writing down your beliefs, values and wishes for future healthcare treatment.
Writing down the contact information for the people who qualify to be on your temporary substitute decision-maker list (see below), or, if you prefer, the contact information for the representative you have chosen and named in an enhanced representation agreement, which is the one that allows you to name a person to make personal-care decisions and some healthcare decisions, including decisions to accept or refuse life support or life-prolonging medical interventions for you. (If you choose to have a representative agreement, I recommend you seek legal advice).

Bear in mind that your health and personal circumstances will change over time. As long as you are capable, you may change or cancel your advance care plan at any time and for any reason. Be sure to notify your doctor and your family members/friends of all changes you make.

Palliative care

When thinking about what to cover in your advance care plan, you might want to expressly include your wish to receive palliative care if you are suffering from a serious illness or condition. Palliative care is specialized medical care that focuses on providing patients with relief from the symptoms, pain and stress of a serious illness, whatever the diagnosis. The goal of palliative care is not to prolong life, nor to shorten it. The goal is to improve quality of life for both the patient and the family, and can be provided in a variety of locations, including the patient’s home, in a hospice, in a residential care facility or in a hospital.

Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support. While often associated with end-of-life situations, palliative care is appropriate at any age and at any stage in a serious illness and can be provided alongside other appropriate treatments.

Many people choose to stay at home right to the end of their lives while receiving in-home palliative care from specialized healthcare providers. But if you are in the last few months of your life and feel that you are no longer able to manage at home, a hospice may be a good option for you. Hospices are meant to feel more like a home than a hospital. They are designed and furnished to provide a peaceful, homelike environment for you and your family while you receive end-of-life palliative care.

For more information on the delivery of palliative care in each of these settings, search the B.C. Health Ministry website or contact your local health authority.

Medical assistance in dying

Medical assistance in dying (MAiD) was made legal in Canada in 2016. It provides eligible patients who are experiencing intolerable suffering due to a grievous and incurable medical condition the option to end their life with the assistance of a doctor or nurse practitioner.

If your beliefs and values allow you to consider MAiD in the face of intolerable suffering, you should start by speaking with your doctor or your local health authority. For a variety of reasons, not all doctors will provide MAiD, and no one is required by law to do so. For some, MAiD may conflict with their personal beliefs or professional ethics. However, a patient can expect to be provided with information on how to access this service. Healthcare providers must not discriminate against patients with beliefs or values different from their own, and must provide an effective transfer of care to another healthcare professional who does offer MAiD.

To be eligible for MAiD, a patient must meet all of the following criteria:

be registered under B.C. Medical Services Plan
be at least 18 years old and capable of making healthcare decisions
have made a voluntary request for medical assistance in dying that was not made under any external pressure. This request must be in writing and signed and dated in front of two independent witnesses
have given informed consent after having been informed of the other means that are available to relieve their suffering, including palliative care, and
on assessment by two independent doctors or nurse practitioners, are determined to have a grievous and incurable medical condition, which means they have a serious and incurable illness, disease or disability; they are in an advanced state of decline that cannot be reversed; the illness, disease, disability or state of decline causes enduring physical or psychological suffering that is intolerable and cannot be relieved under conditions that the patient considers acceptable; their natural death becomes reasonably foreseeable. (On Feb. 24, 2020, the Liberal government of Canada introduced a bill to further amend the Criminal Code to, among other things related to MAiD, allow eligible persons to pursue a medically assisted death whether their natural death is reasonably foreseeable or not.)

A patient who has requested MAiD must be given the opportunity to withdraw their request throughout the process, including immediately before the medical assistance is administered, and this withdrawal need not be in writing or in any other particular form. Just an indication of a change of mind will do. And be aware that only patients who are themselves capable of giving consent can request MAiD. A request by a substitute decision-maker or by way of an advance directive is not valid.

Start the discussion

There is much more information available on end-of-life options than touched on in this article, and many matters not covered herein, but there is enough here to allow you to begin a conversation with those in your life who you want to make decisions for you when you cannot.

This is a lot to cover in one conversation. You can have as many conversations as you need – just get started before unwelcome circumstances make it too late. You will be doing yourself and your loved ones a big favour.

Tony DuMoulin is a founder of the law firm of DuMoulin Boskovich, where he practised commercial and real estate law for 40 years. He has a long history of involvement in Jewish organizations and municipal projects. DuMoulin is on the executive board of Jewish Seniors Alliance, in whose magazine, Senior Line, this article originally appeared in July 2020, Vol. 27(2).

We must plan for end-of-life

The Oct. 29 Jewish Seniors Alliance Fall Symposium on Preparing for End-of-life Transitions drew 160 participants to the Peretz Centre for Secular Jewish Culture. (photo by Alan Katowitz)

The Oct. 29 Jewish Seniors Alliance Fall Symposium on Preparing for End-of-life Transitions drew 160 participants to the Peretz Centre for Secular Jewish Culture. Several aspects of the topic were discussed, with Dr. Sue Hughson speaking on the importance of advance care planning, and Rabbi Philip Bregman presenting some of the Jewish perspectives to be considered.

JSA president Ken Levitt opened the afternoon, welcoming attendees and encouraging them all to become supporters or members of JSA, if they weren’t already. He then introduced Gyda Chud, JSA vice-president, who moderated the symposium, and introduced each speaker.

Hughson has been practising veterinary medicine since 1990. She has been involved in social activism in various forms over the years and currently serves as past president of the British Columbia Humanist Association. Along with her duties on the national board of Dying with Dignity Canada, she is co-chair of the DWDC Vancouver chapter. One of DWDC’s stated purposes is to “educate Canadians about all of their legal end-of-life options, including the constitutional right to medical assistance in dying … and the importance of advance care planning.”

Hughson began by pointing out that talking about dying won’t kill you and that supporting end-of-life choices is pro-choice not pro-death. She outlined the various documents that should be completed in order to plan, in advance, for orderly outcomes. Some of the documents that need to be completed are an advance directive; a representation agreement; and an enduring power of attorney. These documents should be easily accessible – keep them in the freezer, for example. If they are in a safety deposit box, they will not be easily accessed. She also suggested bringing them to the hospital so that the staff is aware of your wishes. These issues should be discussed well in advance with family and close friends so that everyone involved is cognizant of the planning.

In British Columbia, said Hughson, we have the right to a second opinion, the right to refuse treatment, the right to end our own life and the right to assisted death (if a person qualifies).

There are a number of organizations that can help expedite the planning. One is Nidus, another is Dying with Dignity. They have a lot of information on their websites and are also accessible by telephone. Other helpful aids are estate lawyers and financial planners.

One point about the representation agreement, she pointed out, is that there are two forms: No. 9 is the form for capable adults and No. 7 is for those unable to complete it on their own. In this type of agreement, you are outlining your choices, so that, should you become incapable, those acting on your behalf can carry out your wishes. You can register your documents with Nidus. It is interesting to note that eight out of 10 doctors have done advance care planning because they see the importance of doing so.

Bregman was senior rabbi at Temple Sholom from 1980 to 2013. He has been Jewish chaplain at the University of British Columbia since 2013 and serves as executive director of Hillel BC. He explained the importance in Judaism of having an ethical will, where you record the beliefs and ideas that you want to pass on to future generations. This has been a practice in Judaism for thousands of years, he said.

An ethical will can be written on paper or take the form of a video. Bregman emphasized how important it is to have the discussion about end-of-life with your family: what you want to happen regarding funeral arrangements, burial, etc. If the dying person avoids the issues because they think their family is afraid to discuss them, the dying person may feel isolated.

Bregman explained that the Vidui is said at the deathbed if the dying person is unable to say it themselves. It is a prayer asking God for forgiveness. He stated that people usually die at night or early morning, and he thinks it may be because they wish to be alone. But he has experienced what he called the awesome feeling of being present at the moment of death and being aware of the soul leaving the body. The tradition of naming children after a departed relative stems from the idea of the continuation of the neshamah (soul) in a new being, he explained.

The rabbi emphasized the importance of organ donation as helping with life. It is not against Jewish tradition, he said, and is accepted even by the Orthodox. He said people should talk with the Chevra Kadisha (Burial Society) to learn more about the traditions surrounding the preparation of the body for burial. For example, in order to be kosher, the coffin must be biodegradable. There must also be holes in the coffin for a quicker return to nature. We are, after all, only burying the vessel, the neshamah has already departed.

To a question about cremation, Bregman replied that, in Judaism, nothing should be done that is disrespectful to the body and burning is considered disrespectful by most rabbinical authorities. Regarding leaving your body to science or a postmortem, he said it is important to specify that the body be returned for Jewish burial, otherwise it will be cremated. Finally, he stated how important it is to make funeral arrangements in advance, how helpful that is for the family and, again, he encouraged everyone to become an organ donor and help save a life.

Chud then thanked the speakers and invited everyone to partake of the refreshments. A video of the entire event, as well as the PowerPoint by Jack Micner, an estate lawyer who was unable to speak at the symposium due to unforeseen circumstances, will be available on the Jewish Seniors Alliance website.

Shanie Levin, MSW, worked for many years in the field of child welfare. During that time, she was active in the union. As well, she participated in amateur dramatics. She has served on the board of the Jewish Federation of Greater Vancouver and is presently on the executive of Jewish Seniors Alliance and a member of the editorial committee.

Talk of death is healthy

Mike Goldberg, community outreach and education coordinator at Palliative Manitoba. (photo from Mike Goldberg)

Despite the fact that the vast majority of us have lost a loved one, fear and misunderstanding often complicate the grieving process, according to Mike Goldberg, community outreach and education coordinator at Palliative Manitoba.

“Death is not a part of our culture,” said Goldberg. “We tend to revere youth and vitality over age and wisdom, as opposed to Eastern cultures.”

Goldberg, who grew up through the Jewish school system in Winnipeg – attending Ramah Hebrew School and Gray Academy of Jewish Education – earned his master’s degree in gerontology from the University of Regina. He gives many presentations and talks to people in different communities about palliative care and what he describes as “our death-denying society” – and how we can positively change that culture. He also facilitates educational programs at Palliative Manitoba for healthcare aides and support workers; assists people with intellectual disabilities; works with members of First Nations communities; and facilitates grief support groups for kids ages 9 to 12 (called Kids Grieve Too) and 13 to 17 (called Teens Grieve Too).

There was a time when people “just aged in place and the family took care of them at home … and there was nothing else to say about it,” said Goldberg. “That was just the way things were done. But, now it’s more commonplace to see somebody who is getting older being supported in a healthcare facility, a seniors care home.

“It certainly has to do with technology and the economy. You don’t see a lot of people with families that have one primary breadwinner, while the others are able to support family members who are elderly or sick in the family. Everybody seems to have to work, right?”

He said that more Eastern cultures, and sometimes South American ones, can be “more communal and more of a collective society.” He said, “I think we’d like to think we’re communal and collective in Canada, but we’re very much individualistic and self-reliant here. And, we’re very similar to the U.S. in that way.

“We don’t really have a lot of space to care for our elderly family members when it comes to the aging process, so we’ve established these support systems outside the home. And then, it sort of perpetuates itself – this cycle of having the aging experience happen outside the home … and the dying experience happens outside the house. And that has contributed to a fear or denial of death. It just doesn’t happen in our purview.

“If a person is approaching end-of-life, if they have a terminal illness or if they simply have a life-limiting illness … if they need extra supports at their place of residence, we can connect a worker to them to meet with them at home and to provide a supportive presence, to be a companion with them,” he said about Palliative Manitoba.

“For those looking for grief support,” he continued, “we have volunteers that can call you and have a conversation over the phone with you about once a week. Again, they’re not there to provide advice, they’re just there to listen and provide a supportive presence. We find the most appropriate way to support somebody through grief is to listen to them.”

Goldberg is a proponent of inviting open conversations about death and dying, and of exposing kids to death, grief and loss at a young age, not sheltering them. He suggested being as direct as possible with kids and with anyone you meet in terms of language, while also being hyper-aware of word usage – not using euphemisms and metaphors concerning death.

“It’s difficult to talk about death, because it’s something that is going to happen to all of us and represents this unknown,” he said. “But, it’s universal and, to better support each other, we need to talk about it.

“We also need to educate professionals working in this field, who are supporting those approaching end-of-life. These are the people on the ground, experiencing life and death every day. They need to have a high quality of understanding of how to communicate, what the right and wrong things are to say, and being better listeners.

“That’s really crucial,” he stressed. “It doesn’t matter what role you have in society – a nurse or whoever – if we just became better at listening to each other, then that would go a long way in having more direct conversations about death and dying, and changing the culture around it.

“The thing that I’ve come to understand working in this field is that it’s not homogenous emotions we experience. It’s a wide variety of emotions and sometimes a rollercoaster of emotions. The grieving process is not the five-step staircase we tend to think it is. It’s a fluid process that you could go back and forth between the stages.

“There’s certainly a lot of hope in grief and in death,” he said, “and I see that when people tell me that they couldn’t imagine doing what I do, because of the sadness that comes along with grief. I just tell them that I’m able to be with people in one of the most important and sacred times of their life, at the end of life. And, to be able to work with somebody and hear their stories and be with them is a privilege.

“The reality is, everybody grieves differently. There’s no right or wrong way. It’s just however you’re able to make sense of what’s going on.”

Rebeca Kuropatwa is a Winnipeg freelance writer.