dying

Living well with dying

Lap of Honour: A No Fear Guide to Living Well with Dying by Jewish community member Gaby Eirew and Dr. Pippa Hawley is not a new book – it was self-published in 2019 – but its subject matter is timeless. And, after almost two years of the pandemic, many of us have perhaps contemplated the fragility of our existence more than we otherwise would have. While the book talks about what we can do to live well with dying once we are diagnosed with a terminal illness, it’s probably better to read it before that happens, if we have the opportunity, as we’ll have other things to contend with at that point.

Being prepared for something generally reduces our anxiety about that something, no matter what it is – even death.

“When you have been diagnosed with an illness (or someone close to you has) you enter a rather unusual time,” write Eirew and Hawley. “Life’s finishing line might be drawing nearer, but you are still very much alive. This is a time of huge opportunity for warmth, connection and honesty. There are unknowns and inevitably there will be fears, yet once you have a sense of what to expect, fears can be much more manageable, and the personal growth often described by people in this situation can be maximized. There may be difficult conversations ahead, but if these are tackled with honesty and kindness, they can be uplifting.”

Eirew is a counselor and educator, and she created the Recordmenow app, which they recommend in the book as a way to leave messages for your loved ones – you record answers to questions that were derived from interviews of 100 people under the age of 16 who had lost a parent; questions the kids wished their parent had answered for them.

Hawley, a clinical professor and division head at the University of British Columbia, is a pioneer in palliative care, having founded several programs and models of care. She was the founder, for example, of the Bucket List Festival, which was a workshop for people facing end-of-life issues to meet others who were going through similar experiences and has been adapted to other scenarios.

The title of the book comes from the “finishing line” metaphor: “Some runners stop at the finish line. Others take their time, grab a flag, cheer with the crowd and feel the love back. They do a lap of honour, recognizing everything that brought them to this moment, all the events in their life and all the people who are key to them.”

The book has 16 chapters, some written by Hawley, some by Eirew. They touch upon numerous subjects, starting with the process of being diagnosed and receiving a prognosis, or a “best guess as to what will happen to an average person with your condition.” Despite its inherent uncertainty, you might want this prediction because it gives you an idea of what you might want to prioritize.

There are chapters on facing the unknown; on how to tell other people, including children, that you’re ill; on deciding on home, hospital or hospice care; on caring for the person caring for you; on health insurance and the costs that you might face; on celebrating your life; on accessing support services and groups; and more. In the chapter on what you should take into account if you decide to take that trip of a lifetime, to travel with an illness, Hawley highlights “a recurring theme in this book: let people help you.”

While the bulk of the work will still be up to you to do, Lap of Honour discusses almost everything, it seems, that you – and those who love you – will be feeling if you find yourself in this position. And it offers ways for you to “live your life to the very end … in the way that feels right for you.”

For more information, visit lapofhonourbook.com.

Making death a friend

I used to wake up each morning wondering if I had Alzheimer’s yet. I dreaded the thought. Who wouldn’t? I used to imagine the torment of dealing with cancer; the diagnosis, the surgery, the chemotherapy, the radiation, losing my hair! I no longer think that way. I am no longer holding my breath waiting for the diagnosis that will lead me to my imminent death. What happened? I am now a cancer survivor; that is, after two years, my gynaecologist told me that I can now come in for a checkup once a year, rather than every six months.

Let me backtrack. I was diagnosed with endometrial cancer in October 2017. After denying the symptoms for three months, I finally went to my family doctor, then to the gynaecologist, then for an ultrasound examination, then a biopsy. The diagnosis: endometrial cancer, stage 2. I asked the medical students who board with me while doing their electives at Vancouver General Hospital about the cancer, the treatment and the prognosis. The most encouraging of their comments was, “Well, if you have to have cancer, that is the best kind to have.” Really?

My son came from Ontario to be with me for the surgery, a hysterectomy. My gynaecologist was excellent. I experienced one bad night in the hospital. I wanted to get out of the hospital so badly that my blood pressure went sky high (white-coat syndrome). I had to sign several waivers in order to march out of the hospital – against their advice. I never looked back.

That was on a Wednesday. On Thursday morning, a friend picked me up and we attended the advanced Hebrew class at the Jewish Community Centre of Greater Vancouver, as usual. On Saturday, I drove to the supermarket. On the way to the cashier, I bumped into my gynaecologist, Nancy Mitenko. She had a surprised look on her face, so I said, “Hi, it’s Dolores, your patient.” “Oh,” she said, “I know who you are, what are you doing here?” We both laughed. I felt great.

My physical trainers and my family knew of my situation but I did not tell my friends and associates about the diagnosis, the surgery or the radiation until it was almost over. I discovered that the reactions of most people to the situation is fear, for themselves, as they empathize with me. I read the look on their faces as panic and dread. It made me want to comfort them. At that point, I did not have the patience to tend to their anxiety. I knew exactly what they were feeling because I used to experience that dread when I thought about cancer.

Several months later, February 2018, I began radiation therapy at the cancer centre at VGH – 25 sessions, convenient parking in the building, pleasant technicians who, generally, were on time with their appointments; the hardest part was drinking the four glasses of water before the procedure. The treatments were painless, but, they did cause some side-effects, which were manageable. This month, at my two-year checkup, Dr. Mitenko told me that I am clear. “See you next year,” she said.

I have been on an intense learning curve, researching cancer treatments, analyzing my feelings about what had happened, dissecting my behaviours and my capacity to proceed under duress and, especially, I have given much thought to dying and death. The idea of dying does not frighten me anymore. We all will die, it is just a matter of when and how we will approach the process. I now assume that cancer may eventually reappear in my body, why not? The denial I experienced has been banished. I accept my death as inevitable – but I have taken control of the process.

I have given instructions to my sons to donate my body to the University of British Columbia Medical School’s body donation program, having completed all the forms necessary for that to happen. I have joined the organization Death With Dignity, which has a chapter here in Vancouver. I attended a meeting of DWD and was informed of the MAiD program, Medical Assistance in Dying. I have read about the requirements of the MAiD program and now know of several doctors who participate in it. I made an appointment with my lawyer in order to update my will and the various documents related to my requests for treatment and care if I should become incapacitated. My four sons have been advised of all these procedures and have the most up-to-date documents.

I am not in the least bit sad, or anxious or depressed. Rather, I am proceeding to do exactly what I wish to do with my life. I have a plan. I feel that I now have some control of my life and my dying and my ultimate death. This is empowering.

I recently celebrated my 80th birthday with a large, extended-weekend celebration including dinners, a party and a brunch. Three of my four sons were there, as well as my daughters-in-law, and five of my nine grandchildren. The most important element of that weekend for me was to watch the relationships between them deepen and become more meaningful. I am grateful to have lived this long. Anything more will be a bonus. I have accepted my mortality, I do not feel greedy, I do not ask for more. I am happy to welcome each day, to contribute to my family, to volunteer for the causes that I feel are important, to make a difference wherever and whenever I can. Death is my friend, and accepting the inevitable has freed me to be the most that I can be.

Dolores Luber, a retired psychotherapist and psychology teacher, is editor of Jewish Seniors Alliance’s Senior Line magazine and website (jsalliance.org). She blogs for yossilinks.com and writes movie reviews for the Isaac Waldman Jewish Public Library website.

The knowledge that we die

Shabbat, Oct. 26
B’reishit, Genesis 1:1-6:8
Haftarah, Isaiah 42:5-43:10

One Yom Kippur, a rabbi was warning his congregation about the fragility of life.

“One day, everyone in this congregation is going to die,” he thundered from the bimah.

Seated in the front row was an elderly woman who laughed out loud when she heard this.

Irritated, the rabbi said, “What’s so funny?”

“Well!” she said, “I’m not a member of this congregation.”

Membership and affiliation aside, the most important lesson we learn in life is that one day it will end: one day we are going to die.

This is the great lesson and gift of the parashah B’reishit, with its iconic tale of Adam and Eve in the Garden of Eden.

Amid all the lush greenery, flowing rivers and natural beauty of the garden, at its centre stood two trees. All of the trees and their fruits were permitted to human beings as food, except for the Tree of All Knowledge and the Tree of Life. We read: “God Eternal then commanded the man, saying, ‘You may eat all you like of every tree in the garden – but of the Tree of All Knowledge you may not eat, for the moment you eat of it you shall be doomed to die.’” (Genesis 2:16-17)

When they eat from the Tree of All Knowledge, the knowledge they get is that, one day, they are going to die. Before the forbidden fruit, they didn’t even know death was part of the equation. Now they know and it scares them – to death. They like the garden: life there is beautiful, they don’t want it to end and, standing right next to the Tree of All Knowledge, is the answer to their anxiety – the Tree of Life. One bite from that fruit and they will live forever. This terrifies God. We read: “God Eternal then said, ‘Look, the humans are like us, knowing all things. Now they may even reach out to take fruit from the Tree of Life and eat, and live forever!’ So the Eternal God drove them out of the Garden of Eden to work the soil from which they had been taken.” (Genesis 3:22-23)

God kicks them out of the garden – not as punishment, but as a blessing. If they think they will never die, then how will they truly live? If you have eternity, then there is no urgency for anything; with unlimited tomorrows, everything can wait.

The German existentialist Martin Heidegger, in his masterwork Being and Time, taught this: he said that, in order to truly live authentically, we have to confront death head-on. In other words, knowing that I am going to die is what allows me to truly live. Heidegger wrote: “If I take death into my life, acknowledge it and face it squarely, I will free myself from the anxiety of death and the pettiness of life – and only then will I be free to become myself.”

But, as Ernest Becker wrote in his Pulitzer Prize-winning masterwork The Denial of Death, even though we objectively know that we are all going to die, we don’t actually believe what we know to be true.

Becker’s work is important because of his astute observation that our obsession with not dying actually gets in the way of our fully living.

We are so focused on outwitting, outlasting and outplaying death, staying in our own Garden of Eden, that we make amazingly selfish choices in life. We set up what Becker calls “immortality systems” – non-rational belief structures that give way to the belief that we are immortal.

For example, we try to buy immortality by accumulating possessions and wealth, as if our things will somehow protect us when death comes knocking. We take on heroic roles in our business or our household: we think that, if we make ourselves indispensable, death can’t touch us. “I can’t die this week; I have a sales meeting on Thursday.”

Judaism suggests a different approach to death and to life. Rather than deny death, Jewish tradition instructs us to embrace it. Judaism teaches that we should live each day as if it is our last because we don’t know, it very well may be (Babylonian Talmud, Shabbat 153a).

Imagine, as God does in this parashah, if human beings directed all the energy they focus on not dying toward the more sacred goal of truly living. How would you fill each moment of every day if you truly knew and understood that you will never get that moment back once it has passed; that it is gone forever?

The psalmist declares: “The span of our life is 70 years or, given the strength, 80 years … and they pass by speedily and we are in darkness; teach us to count our days rightly, that we may attain a wise heart.” (Psalm 90:10, 12)

The wise person, our rabbis teach, counts each day and makes each day count. Knowing that our days are numbered helps us clarify our priorities and our purpose. Our most precious possession is not money or things: you can always get more of those. No, our most precious and finite possession is time.

Henry David Thoreau wrote: “I went to the woods because I wished to live deliberately…. I wanted to live deep and suck out all the marrow of life, to put to rout all that was not life, and not, when I had come to die, discover that I had not lived.” (Walden, reissue edition, Princeton University Press, 2016)

When Adam and Eve are kicked out of the garden, the Torah records the very first thing they do. “And Adam knew his wife Eve and she bore him a son.” (Genesis 4:1) They have a child: the very realization of “I’m not going to live forever” is answered with our best attempt at immortality – progeny.

And so, a final question remains. Where is the true paradise? Is it in the Garden of Eden where no one ever dies and time is limitless? Or is it East of Eden, outside the garden, where every moment is precious, every decision is life-changing and the fruit, sometimes bitter, compels us to appreciate the sweet?

Rabbi Dan Moskovitz is senior rabbi at Temple Sholom and author of The Men’s Seder (MRJ Publishing). He is also chair of the Reform Rabbis of Canada. His writing and perspective on Judaism appear in major print and digital media internationally. This article originally appeared on reformjudaism.org.

Teaching about death

Dr. Jessica Zitter has both written a book and a movie about death and dying. (photo by Rikki Ward Photography)

Dr. Jessica Zitter, who works as an attending physician at a public hospital in Oakland, Calif., struggled with her job’s protocols for years. Until the day a nurse opened her eyes to the possibility that there was a better way, one that involved more compassion in the treatment of patients.

Zitter comes from a long line of doctors.

“They were into the art of medicine,” she said of the mentors she had when she first began her studies. “By that, I mean the art of surgery and intervening, and of doing things in a very precise way. There was something about that that I found heroic, and I wanted to be part of that world.

“So, I went to medical school – pulmonary and critical medicine – which I thought of as the most heroic of the specialties. I went on to start to focus on the machines, technologies, protocols and things that were part of the trade of being a pulmonary critical care physician. I tried to really perfect them … [thinking that,] if I use these perfectly, I’ll be able to help a lot of people.”

But, as she went along, she started to think differently. At first, she suppressed the feeling. “It was truly uncomfortable,” she said. “It caused me a lot of suffering.”

Zitter was using techniques and protocols on people who were not going to benefit from them, knowing full well that they would not benefit from them. Not only was she following her training, but she also wanted to please her patients – give them mainly good news and information about various procedures, instead of telling them the whole truth about their condition.

“I didn’t want to tell them, ‘Hey, I don’t think you’ll survive,’” said Zitter. “I didn’t want to say that because it’s too sad. I would communicate about things that were more practical like, if this happens, we will try this.”

A pivotal moment

Zitter’s approach changed after an encounter in the intensive care unit with a nurse from the family support team, called Power to Care.

“One day, I was about to put in a line [catheter] into someone who was really, really sick and likely dying, and the woman who headed that family support team was standing in the doorway watching…. I was about to put the needle in and she put her hand up to her face and she said, ‘Call the police,’ on a pretend telephone…. She said, ‘Call the police. They’re torturing a patient in the ICU,’” said Zitter. “And that was my epiphany moment. All these moments, I had this doubt. This was like a relief – you’re right, I am torturing the patient. What the heck? There was a clarity there that was really powerful.

“But, the sad truth is that I still put that needle in. I still put that catheter in that woman. The force of what I call the end-of-life conveyor belt is so powerful … not only the conveyor belt itself, but the drive to ‘protocolize,’ heaping on treatments … the culture in the hospital. It’s hard to break out. It’s hard to stop and take a pause, and say, ‘Wait a minute. What the heck?’”

The intervening nurse, Pat Murphy, in some ways became Zitter’s mentor on what it meant to be a doctor.

“I came to it late and from a place of profound dissatisfaction and moral distress, and I was just extremely lucky that I happened to be in one of four hospitals where this movement was starting to take hold,” Zitter told the Independent.

“And, I happened to have been open to it,” she added. She was able to get over her “human defence of not wanting to look stupid or like I didn’t understand … and to be able to say, ‘OK. Teach me.’

“I feel lucky that those two things were in check at that time,” said Zitter. “Not to say that I wasn’t filled with shame and embarrassment about what I’d been doing all that time, but the psychology…. Once you admit there’s a problem, then find a way to fix it.”

After years of immersing herself in this new paradigm, Zitter felt ready to share what she had learned. She published a book about it, called Extreme Measures: Finding a Better Path to the End of Life, in 2017.

As she was writing it, Zitter realized that, if a picture can impart a thousand words, maybe a movie would be able to convey even more. So, she put together a 24-minute documentary, Extremis.

Of the award-winning film, Zitter said, “It really shows the issues that come up in an ICU…. There is also a discussion guide that goes with it, so people can watch it and then come away from it with some lessons learned.

“This movie reaches a wide audience about really advanced care planning,” she said. “A lot of synagogues are using it, medical schools and nursing schools.”

Death education

Zitter was asked to teach sex education at both of her daughters’ schools.

“I want them to be able to make the best decisions they can make about their bodies and their health, and to be empowered to live the best they can,” she said.

But what about death education?

Extremis came out in late 2016. “It was nominated for the Oscars and a lot of my kids’ friends were watching it. And all these kids were really blown away by the movie and they were having a positive response to it,” said Zitter. “It made me think, ‘Why the heck aren’t we teaching kids about death? Why aren’t we having a conversation in high school, just like with sex ed?’ So, a friend of mine designed ‘death ed.’ We did it in her kids’ and my kids’ schools. It was really impactful.”

Zitter would love to see such a class in every school in the United States and Canada, along with other heath education classes, so everyone can have the opportunity to learn about a range of issues and discuss them.

Both the teachers and the students appreciated the lesson on death education, said Zitter. “There were no negative responses. Although some kids cried, and it was terrifying at first, they would then say, ‘That was sad, but I’m OK.’

“I was like, ‘It is sad that we are all going to die.’ But, you know what? It’s really good for these kids too, [because] it’s part of life. If we pretend no one’s going to die and don’t let our kids go to funerals, etc., we aren’t doing anyone a service.”

So far, Extremis has been translated into 90 languages and has been shown in 160 countries.

“We’ve got to tell people what’s actually happening and try to understand,” said Zitter. “I use myself as a prime example…. Why was I putting that catheter into a woman I knew was dying? What are these factors that are propelling me to do things that don’t make sense to me? The idea is to be more conscious of it, aware of it, and change it.”

For more information about the movie and the book, visit jessicazitter.com. The film trailer can be found on YouTube.

Rebeca Kuropatwa is a Winnipeg freelance writer.

On death and dying

Rabbi Laura Duhan Kaplan, director of inter-religious studies at Vancouver School of Theology. (photo from Laura Duhan Kaplan)

“Most of the world’s religions speak of dying to self,” said Dr. Eloecea, a Christian psychotherapist speaking at the Inter-Religious Conference on Spiritual Perspectives on Death and Dying at the Vancouver School of Theology May 22-24. “If we can do this before the time death approaches, suffering is greatly diminished for ourselves and for those around us.”

“Dying to self” refers to giving up egotism and self-centred attachments. Eloecea’s words echoed a theme that appeared in many of the sessions I attended, which was that of a holistic spiritual path of surrender and humility that unites life and death.

Rabbi Dr. Laura Duhan Kaplan, formerly of Or Shalom Synagogue and now director of inter-religious studies at VST, discussed how she had been spurred by reading Plato to take a closer examination of Jewish views of death and the afterlife. “Plato said living well is preparing for death. But what is death?” she asked.

Duhan Kaplan explained how the texts of kabbalah offer accounts of a soul’s journey after death. The soul travels through stages of physical, emotional, intellectual and spiritual purification, she said. According to Duhan Kaplan, this account of the afterlife is based both in kabbalistic theories of the soul’s development and glimpses of higher consciousness by current spiritual seekers. As Duhan Kaplan presented them, these texts are a guide to a lifetime of self-reflection, humility and non-attachment.

The stages of the soul’s ascent after death are tied to the rituals and rhythms of the traditional Jewish year of mourning that follows the death of a loved one, she said. “When I decided I would research Jewish views of the afterlife I had no idea I would discover what I did.”

Duhan Kaplan spoke of the dreams and spiritual experiences she had after the deaths of her father, mother and mother-in-law. She said the stages of her parents’ journeys offered particular gifts that related to their stages of spiritual ascent in the next worlds. The movement from the shivah period through the year of saying Kaddish to the yahrzeit and Yizkor corresponds to the soul’s difficulty in letting go, the emotional purification, the visit to the lower Gan Eden, the “paradise of understanding and good deeds,” and then the return to the storehouse of souls to merge with the divine. This description captures just one thread in the rich tapestry of connections Duhan Kaplan wove.

Other teachers at the conference presented different lenses through which spirituality relates to death. Acharya S.P. Dwivedi, poet and interfaith activist, presented the traditional Hindu view of karma, reincarnation and freedom from rebirth through non-attachment and identification with the transcendent self (atman). Dwivedi described how in the Hindu view the jiva (individual soul) moves from birth to death, experiencing happiness or suffering in accordance with the good and bad actions it commits, until finally it finds its true identity with the atman – the innermost self that is one with all of existence – and lets go, returning to its source and not again being reborn.

Syed Nasir Zaidi, Muslim chaplain at the University of British Columbia, discussed the importance in Islam of confronting and making peace with death. “Death should be our strength, not our weakness,” Zaidi said, emphasizing how thoroughly internalizing the reality of our own death and ceasing to fear it can enrich our spiritual path. Zaidi pointed out that, according Rumi, it is death that gives value to life, making it precious. Zaidi also explained that, in Islam, peace with death is accomplished through confident submission to God’s will in a life of virtue and acceptance of life’s unfolding as an expression of God. “Abraham told his children they should not die before becoming Muslims,” Zaidi said. “Obviously, this doesn’t refer to being members of the religion of Islam, but rather to having submitted to God, which is what being a muslim [submitted one] means.”

Some presenters offered specific practices. Eloecea shared a series of meditations aimed at producing positive thoughts to change the state of the brain, to shift from the egotistical self and its entrapping habits. Lynn Mills, a PhD student at Trinity College in Dublin, Ireland, Skyped in to present a liturgy for people in the early stages of Alzheimer’s, which consisted of psalms and prayers to be recited in their presence. This had two parts: the first was a morning liturgy for every day, the second a way to celebrate the person’s life before memory loss prevents them from knowing friends and family and remembering the stories they share.

A variety of other topics were covered. Mark Stein, a Jewish chaplain, tackled the issue of what to do when non-Christians (or anabaptists, who only baptize believing adults) are called upon to give baptisms for sick or stillborn children. Can a Jew baptize a child? Should they? Stein spoke of the need for chaplains to support people in these extreme situations. He spoke of the transformation this could cause in a chaplain, leading them not only to embrace a pragmatic flexibility but to an openness – seeing God’s work as something also happening beyond one’s own religion.

One recurrent issue was medical assistance in dying, about which there was a panel discussion moderated by Duhan Kaplan on the opening night of the conference. Rabbi Adam Rubin of Congregation Beth Tikvah spoke as a member of the panel. He noted the lack of a consensus about medically assisted dying across Jewish traditions, but affirmed a few core teachings. “First, because of the infinite preciousness of every life, we’re commanded to do everything we can to preserve life,” Rubin told the Independent. “Second, we must do everything we can to attenuate suffering. Some traditional rabbinic authorities hold that this imperative means that one can give a level of pain-killing medicine (morphine, for example) that might even endanger the life of a patient, in order to reduce the patient’s suffering. In addition, some authorities allow the removal of life-sustaining machines or apparatuses if they extend suffering, in order to allow the normal course of physical decline to take place. This is a tricky and controversial subject within Jewish tradition,” he said, “but the general idea is that there’s a place for ‘allowing nature to take its course’ if it is likely to reduce suffering. All of that said, there is a (rare for Judaism!) consensus in traditional Jewish law that it is absolutely forbidden to take one’s own life or to assist in taking someone else’s life.”

Rubin warned of the dangers of simplistic notions of consent or decision-making that don’t take into account the full range of pressures and emotional factors that might influence a person’s decision. “People are not robots, making ‘clean,’ rational decisions in a vacuum,” he said. “So, my approach, and my take on Jewish tradition, is that we must fight the things that might lead to someone wishing to end their life.”

In addition to the talks and panels, there was an afternoon session for musical and meditative reflections on the first day of the conference. Jewish music ensemble Sulam (which contains both Duhan Kaplan and her husband Charles Kaplan) performed, as did the Threshold Singers; the music was followed by Zen priest Myoshin Kate McCandless giving a presentation on meditation and chant in support of end-of-life care.

The keynote event of the conference, which was open to the public, was called We Die Alone and Yet We Don’t. It was a conversation with Dr. David Kuhl, facilitated by Duhan Kaplan. Kuhl is a professor in the department of family practice in the faculty of medicine at UBC. He helped design and develop the palliative care program at St. Paul’s Hospital, and is known for his 2011 book What Dying People Want: Lessons for Living from People Who Are Dying.

Matthew Gindin is a freelance journalist, writer and lecturer. He is Pacific correspondent for the CJN, writes regularly for the Forward, Tricycle and the Wisdom Daily, and has been published in Sojourners, Religion Dispatches and elsewhere. He can be found on Medium and Twitter.