It’s the beginning of a new year and the script is that we talk about hope. It was a challenging 2017 but things will be OK. New opportunities, fresh blessings, more love and more joy.
So why am I wanting to talk about death? Well, it’s personal and also professional.
A doctor watches over a deceased hospital patient.
[I]t’s personal because I have just booked flights back to Switzerland to go to the funeral of my much loved uncle Albin. He died two days before Christmas, aged 82, gently and peacefully with his family around him. About six years ago his younger brother Otto also died peacefully with his family around him. The difference was that Albin died of old age and dementia, Otto died of a nasty aggressive brain tumour. Albin died ‘naturally’. Otto, being Swiss, was able to request and receive the help he needed to die in a dignified and pain-free peaceful way. This merciful intervention in no way changed the fact of his death, and even now the sorrow is hard to bear, but it did cut short the last bitter agonies of the manner of his dying.
It is professional because in the parish where I work there are a lot of funerals. Mostly the bereaved tell me of the immense kindness of all around; family and friends, doctors and nurses. They tell of the shock of sudden unexpected death and also the oblique conversations about the use of morphine. They also sometimes tell me of bad deaths. Deaths where there is no way of giving the dying person their final wish: ‘Please, dear God, please help me to die.’
Don’t tell me that the time of someone’s death is purely God’s business. That at the moment when all a human soul wants is for it to end, God stands at the end of the bed and says: ‘No my child, it is my will that you suffer just a few more days.’
That is pure fatalism and superstition. Even people who would use language such as ‘God has a plan for your life’ don’t actually mean that everything that happens to them from birth to death is controlled. Of course not. We rejoice in our free will, even in the knowledge that we risk misusing it. That’s part of the deal. Our conception is a risk. We may be born to loving parents, or our mother might have been kidnapped and raped. The will of God? Throughout our lives we make choices and many of them are life and death choices. To smoke or drink or over-eat. To enjoy extreme sports, to ride a motorbike. For all those things we choose and we also take responsibility.
When our lives are nearing the end there are now many societies where that degree of both choice and responsibility remains. That is not the case in the UK.
Just when you might think we need our freedom the most, the medical profession, by law, takes it away from us. Just when you might think that God would most honour the freedom he has given us, the Christian community takes it away from us.
I’m with Hans Küng. If the time comes, and it is necessary for me, I would find it a fulfilment of my life of faith to be able to say to God: ‘Loving Father, I thank you for the most wonderful gift of life. The burden of it is now too much for me to bear and so with every ounce of love and gratitude I can muster I give it back to you.’
“Why, you may ask, take on this unpleasant, frightening subject? Why stare into the sun?”
— Irvin D. Yalom, Staring at the Sun: Overcoming the Terror of Death
THE SACRED ART OF DYING: Third Messenger co-founders Said Osio, left, and Greg Lathrop promote community events such as the popular Death Cafe, a community forum that invites participants to engage in conversation about death and dying.
“Are you willing to pretend something for a minute?” asks Greg Lathrop, a local end-of-life activist. “So, let’s pretend this. March 27 will be your last day here. In this game, we know that you’re going to die March 27th. Now, how’s your life? See, it’s a simple perspective shift. Perspective is just a choice. You shift the perspective just that much, and it opens a door. We’re getting somewhere. Now it’s like, ‘I hate my job,’ or ‘I’m in debt up to my eyeballs.’ What would it look like, in these last three months, to live the best three months of your life? It gives us an opportunity. It’s more than a bucket list. What’s your life’s purpose — why are you even here?”
Lathrop, a registered nurse, holds a certification as a Sacred Passage doula — caring for people who are in the process of dying — and is co-founder of Asheville’s Third Messenger, a community of Asheville death-issues activists who have created a forum for conversations about death at the so-called Death Cafe. Lathrop is also part of a growing national community that works in “the death trade” — people dedicated, he notes, to broaching the conversation of death and dying within a culture that prefers to speak about virtually any other subject.
Lathrop first began that conversation on the heels of his own significant loss. Synchronistically, the death of Lathrop’s wife and the passing of Third Messenger co-founder Said Osio’s daughter propelled the two men to join forces in end-of-life activism. To Asheville locals and tourists alike, Third Messenger’s work may be most visible in what has become a landmark Biltmore Avenue structure.
Ministered to for years by Earl Lee “Happy” Gray (before his passing in October 2016), the “Before I Die” wall poses passers-by one simple question: What have you left undone? Not surprisingly, responses range from the mundane to the profound, reflecting our culture’s divisive relationship with the end of life. Yet the wall serves as a catalyst, the beginning of what Third Messenger views as a critical and much-needed conversation. “We cultivate the sacred art of being with dying — we use art to engage the conversation,” says Lathrop.
It is precisely this lack offamiliarity with death that engenders the paralyzing fear of the unknown and creates what author and end-of-life activist Stephen Jenkinson, who spoke at Asheville’s Masonic Temple Nov. 6, refers to as a “death-phobic culture.”
Dr. Aditi Seth-Brown, hospice and palliative care physician at CarePartners, agrees: “Many years ago, there were so many intergenerational families and communities, so death was something that young children were around and saw — life happened around death.” As a result of an unfortunate marriage of families living farther apart and a highly individualistic culture, Sethi-Brown now frequently encounters many individuals who have virtually no experience with the process she views as an inextricable part of life.
“People come to us, and oftentimes this is their very first experience with death, and there’s so much fear of the unknown,” says Sethi-Brown,who is also is a local musician, whose work includes playing for people transitioning and at Third Messenger events. “Sometimes, family members come to us and say, ‘We don’t want our loved one to know that they’re dying.’ We don’t practice it. There are some traditions around the world that actually have practices around death, meditations around death — just like if you’re birthing, you go to birth classes, read birth books, but [there’s] nothing to prepare you for death.”
CALLING FORTH THE BEYOND: Hospice and palliative care physician and musician Dr. Aditi Sethi-Brown often provides musical accompaniment for those transitioning.
Shining light upon the shadows
“I was 9. That’s the start of it, in my memory.” says Asheville resident Julie Loveless. Beginning in early childhood, Loveless found herself plagued by an inexplicable and inescapable fear of death. One night in particular, Loveless says, “We were at my grandmother’s house. My parents were there, my grandmother, my aunt, and it was time for me to go to bed. I was terrified, because I knew I wasn’t going to wake up the next morning. So I was coming up with all of these tactics to stay up. I had a fever, I had diarrhea, my stomach hurt, I was throwing up, I fell down the stairs — anything I could do to stay up and be the center of attention.” It was as though she needed to be seen in her terror, Loveless says, validated in her very existence. “I needed somebody to know I was alive.”
Loveless’ childhood fear of death is far from uncommon. Recent studies show that children as young as 5 express substantial “death anxiety.” The results of one such study indicated that a mature relationship to dying (understanding death as an inevitable biological event) correlated with a decreased fear of death.
Is it any surprise, when many children are now inoculated from the natural rhythms of life, that they fear, rather than revere, that great unknown? The reality is that “we don’t even have a language for dying,” says Lathrop.
Trish Rux, hospice and palliative care nurse and Sacred Passage doula, agrees. In contrast to her upbringing, she says, the majority of individuals she meets have rarely contemplated death. “I was raised without a death phobia,” Rux says. “I remember my father bringing me to a friend’s funeral when I was pretty young and my not really understanding about the casket, and his explaining it to me. He was just a very practical person. Just knowing that death is a part of life — it was an accepted thing.”
In stark contrast, Rux now regularly witnesses individuals who, in their final days, have scarcely given a thought to the inevitability of their own mortality. “Curiously, I’ve had people that in are in their late 80s, and they’ve not thought about their death. It’s incredible to me — they haven’t thought about what they want, who they want to see. It’s sad for me, and it’s pretty common.”
MINDFUL LIVING: “All of our time is running out,” says Julie Loveless. “It does make things less scary when you’re faced with what’s considered the scariest thing a human can be faced with.”
Dancing with death
Loveless was 30 when she first received a diagnosis of breast cancer and 37 when it returned with a vengeance. After having been in remission from thecancer for seven years, a persistent lymphedema sent her back to the oncologist for a standard biopsy. “I’ve never seen it happen that fast,” Loveless says. “He walked in, did the core needle biopsy and left. I got my clothes back on and am sitting down, and he immediately walked back in and said, ‘It looks like disease.’ The way he was talking about it, he made it clear it had metastasized. I don’t think he said the word, ever — it was just understood.”
Yet Loveless is no longer afraid to fall asleep. Now faced with the stark reality of her worst childhood fears, she finds herself liberated rather than imprisoned. “When I go back to the last time I remember having that really potent fear of death that was crippling, like pulling over to the side of the road and having to breathe into a paper bag, to now — it’s night and day. Before, when something would go wrong and I’d look into the mirror and see a new mark on my skin, I’d think ‘Oh, that might be skin cancer.’ Or, ‘I have a headache — I might have an aneurysm.’ To have those thoughts in my head all the time, to think that way and then to be like ‘Oh my God, I might have cancer — oh wait, I do have cancer.’ I have the worst thing you can have. Nothing else is scary.”
Freed from the fear of dying, Loveless now finds herself preoccupied with living. “[I] wake up in the morning and [think], ‘This may be my last day — how am I going to spend it?’ [Or], this might be my last minute — do I want to spend it brushing my teeth and sitting on the toilet and looking at Facebook? Or, do I want to go make a really yummy smoothie, or do I want to go outside and look at the leaves? So, if you’re thinking that way all the time, you have no idea that it’s even happening until the end of the day and you realize — ‘I didn’t waste my day today.’”
Lathrop questions whether we cheat ourselves of the chance for a more meaningful life if we spend our days running from the inevitability of death. His answer: “Death is my guru. It becomes a real teacher for how to live.” And Sethi-Brown agrees: “The reality is you don’t know when your time is. Don’t be afraid of having the conversation. The fear of the conversation, the discomfort around it — go there, explore that — and you’ll see, it will change your life.”
[I]n November, Victoria became the first Australian state to legalise voluntary assisted dying. From mid-2019, competent, terminally ill adults who are stricken with an incurable and progressive physical or mental disease and unable to gain relief from their suffering will be able to access a substance that will let them end their lives.
The law reflects the contemporary secular approach to biomedical law and ethics, in which individual autonomy trumps the principle of the value of human life.
In line with this approach, competent terminally ill adults who find themselves trapped by disease from which they feel that their only deliverance is death may choose to end their lives in accordance with the law.
By contrast, Jewish law (halakhah) is obligation-based, and the preservation of human life is a cardinal commandment. Both suicide and self-endangerment are forbidden (Genesis 9:5; Deuteronomy 4:15). Maimonides explains that our bodies are Divine property and any deliberate attempt to destroy them is prohibited.
A similar view is attributed to Socrates in the Phaedo. He states that, in general, suicide is forbidden since it infringes on the property rights of the gods.
‘Soft autonomy’ and assisted dying
Jewish law recognises patient choice as decisive in some situations. This is not so much a value as a solution to a particularly difficult case involving a clash between two competing values.
Famed Jewish law scholar and rabbi Moshe Feinstein used this type of “soft autonomy” in a case in which a patient wanted to risk an assured but low-quality short-term lifespan for the possibility of gaining long-term life expectancy.
In permitting the patient to choose the highly risky operation, Rabbi Feinstein held that if rational people in general would be prepared to choose the operation, it would constitute a legitimate option – and ownership of the body would be transferred to the patient.
In another decision, he ruled that a competent, terminally ill adult ought not to be pressured into accepting artificial nutrition, even though failure to do so would precipitate his death. Here, Rabbi Feinstein took the terminal patient’s wishes into account. He laid down the principle of non-traumatisation of the terminally ill.
‘Soft autonomy’ and suicide
This soft autonomy model is also applicable to suicide.
In general, suicide is forbidden under Jewish law. Sanctions include non-observance of mourning rites and separate burial. However, there are situations in which a person may choose to take their own life because of a conflict between legitimate halakhic values.
The biblical account of King Saul’s suicide is interpreted to mean that one may take their own life to prevent the desecration of the Divine name by having a king of Israel fall into enemy hands.
Another view is that suicide may be committed to avoid physical or mental suffering. With regard to the permissibility of suicide during the Holocaust, Rabbi Ephraim Oschry permitted suicide to avoid the agony of witnessing the destruction of one’s family and community – but added that the decision should not be publicised.
The lesson to be learned from this is that any relaxation of the prohibition on suicide in cases of extreme suffering should be accompanied by a public education program. This program would be designed to both strengthen the value of life and deepen society’s understanding of its fundamentally sacred nature.
Think back to the day you received your diagnosis of cancer. How soon did thoughts about death or dying come to your mind? For me, thoughts about death occurred within seconds after I received the news I had prostate cancer.
What’s surprising to me is how often I think about death seven years later, even though my last PSA test came back undetectable.
I’m five years out and I think about it almost daily.
I don’t think about it any more often than before I was diagnosed with prostate cancer.
Most days.
Every day.
I think of death too often.
The first thing I noticed was the variety of answers I received. I expected everyone to say they thought about it multiple times every day.
The answers I received suggest there’s a wide variation in how often cancer survivors think about death and dying.
The frequency of thoughts about death and dying is less important than the conversation we engage in with ourselves each time we think about dying.
My initial thoughts about death were terrifying. I imagined spending months in agonizing pain that no amount of medication would successfully manage.
I imagined my life savings would be wiped out by high deductibles and out-of-pocket expenses. I was convinced I wouldn’t live long enough to walk my daughter down the aisle, become a grandparent, retire in good health or travel with my wife.
I have a long list of friends, family and acquaintances who died within the year of receiving their diagnosis. Therefore, the possibility of surviving cancer never entered my mind.
I expected to go down hill rapidly and die within the first year after I received my diagnosis.
Every time I engaged in self-talk about dying, it ended the same way. I’d feel distressed, fearful, pessimistic about the future and overwhelmed with grief and sadness.
I wanted to protect my wife, so I kept these conversations to myself. I believe she wanted to protect me from her fears, so we coped with our individual fears together, but alone. In doing so, we deprived ourselves of the comfort and support we had to offer each other.
There are healthy, life-affirming ways to think about your own death, but where can you find them?
The Bible helped me overcome my fear and pessimism. These three verses were life changing:
Teach us to number our days, that we may gain a heart of wisdom. (Psalm 90:12).
A diagnosis of prostate cancer taught me to number my days. Since then, every part of my life changed.
Before my cancer diagnosis, if you said to me, “You’re going to write two award-winning books, write articles and cut your work schedule down to three days a week.” I wouldn’t have believed you. Yet, that’s exactly what happened.
O death, where is thy sting? O grave, where is thy victory? (1 Corinthians 15:55)
This verse is a powerful reminder to me that death isn’t the last chapter of my life.
We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord (2 Corinthians 5:8)
This verse reminds me of where and with whom I’m going to spend eternity.
I’m no longer distressed when I think about death and dying. I’m reminded to use my remaining time wisely. My relationships, my priorities, my values and how I use my time, skills and talents were all transformed.
Your thoughts, feelings, past experiences, attitudes, religious beliefs and your personal history coping with loss will all impact the way you speak, comfort or cause distress as you think about your mortality.
Buddhist teacher Frank Ostaseski has been one of the leading voices in contemplative end-of-life care since the 1980s.
By Lion’s Roar Staff
[I]n this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.
[A]s a nurse, Lisa Sartin has been interested in end-of-life care.
Sartin began her nursing career 25 years ago and has worked in oncology, critical care and as a nursing supervisor.
But in the last year, working as a hospice nurse for OSF Home Health in Ottawa, she found her niche.
“When I was working with oncology patients, I was just out of nursing school and loved it, but it was a little stressful,” Sartin said. “I was 22 years old and thought I could fix everything. Hospice was something I was just always interested in. This opportunity was available and I tried it and loved it.”
Sartin and the rest of the hospice care team, which includes skilled nursing, a social worker, certified nursing assistants and the chaplain/bereavement coordinator, work closely with one another to provide mental, physical and spiritual support for dying people and their families.
“From the minute they are admitted, each patient is always treated individually,” Sartin said. “Each patient has individual needs, each family has individual needs. We assess where they’re at in the grieving process, acceptance process and develop a plan of care from there.”
Sartin said the frequency with which the team visits the patient and family depends on the illness. A key responsibility of the nursing staff is education, especially on pain management and medicine administration.
“We see them a couple times a week,” she said. “If they are more critical, we see them more often. We go out and we’re there for the whole family. We’re caring not just for patients but for the whole family. You develop very close friendships and relationships with them.”
At a time when emotions can be all over the map for everyone involved, Sartin takes special care to be honest with the patient and their family about what they can expect.
“I tell them I will always be honest with them and that I can’t promise them any time, but what time there is I will make comfortable for them,” she said. “Everyone is different. Not everyone can handle the same conversations at the same time. By the time of the transition, families and patients are very educated and ready. Some patients want to be educated right up front and others want to be educated as they’re going through the process. All are educated the same, just at different rates.”
When death is imminent, Sartin says most people are prepared, but she’s not sure anyone is ever ready.
“Every family is different,” she said. “They’re prepared to see the family member not suffer anymore. I’ve been present for many passings. As a nurse our job is to be a support system. There are many times when we get in the car and we cry, but our priority is to be a support and be with them at the time of death.”
Although hospice care isn’t for everyone, those who do work with dying people and their families find a great personal reward from the task. Sartin says hospice workers have to be caring and compassionate, not only for people, but also for the line of work they are doing.
“Hospice is very rewarding. In nursing you want to fix everybody,” she said. “Sometimes helping means not fixing. It is rewarding knowing you have helped a patient and family through what is the most difficult time in their life. You’ve given comfort and know you’ve made the passing as peaceful as it can be. I’m rewarded every day by the friendships I make with the families and the patients.”
Each member of the hospice team brings a great deal of professional work ethic. Still, the nature of the job is they are losing someone with whom they have formed a relationship.
“You become very close to them,” Sartin said. “With each patient you lose, you are losing a friend. That part is difficult. But the benefits and rewards you get in the job very much outweigh that part of it.”
Throughout the process, Bill Clark, bereavement coordinator, is present for the dying patient and the family to help with the grieving process.
“I visit the patient or family as often as they request me,” Clark said. “Providing active listening is primary. By listening, I am able to discern their needs and concerns about dying. The bereavement coordinator’s presence, spiritual support and prayers are what they most request.”
After the patient’s death, the bereavement coordinator continues care for the family for 12 to 13 months in various ways. Once a year, a memorial event takes place for families who have lost a loved one in the previous year.
Clark, also an ordained minister, provides a calm, pastoral presence “by representing the love of God and the hope of heaven and eternal life He has promised through His Son Jesus.” He also offers prayers, which he says hardly anyone declines.
“One of my important assignments is to ascertain their religious background and even offer to contact their own pastor, priest, rabbi or any other religious clergy,” Clark said. “I never attempt to replace someone’s church or clergy, but simply come alongside for additional spiritual support.”
During his years as a hospice chaplain, Clark, says he is surprised at how most people are able to work through a lot of their own issues within themselves.
“Their own faith background helps them,” he said. “They often need a sounding board for their thoughts and feelings, which the chaplain can provide. I have discovered that people with faith have more peace in the midst of the dying process than those who do not … Many questions are resolved in a surrendered life and future to God through prayer.”
Plastics manufacturer Nissei Eco introduced Pepper last month, a robe-donning robot trained to recite prayers and scripture while tapping a little drum.
[I]n Japan, where funerals often require elaborate preparation and involve religious rites, honoring the deceased comes at a very steep price. It costs about 550,000 yen (~$5,030) just to hire the services of a Buddhist monk, whose duties include chanting sutras. But now families have a more economical option to stand in place of these religious men: a robe-donning robot named Pepper who’s been trained to recite prayers and scripture while tapping a little drum. It can even livestream ceremonies to loved ones unable to attend a funeral in person.
Plastics manufacturer Nissei Eco introduced Pepper last month at Tokyo’s annual Life Ending Industry Expo — Japan’s largest trade show for everything funeral-related — and intends to offer its services at a cost of 50,000 yen (~$460), according to Japan Times. It’s an incredibly niche and unusual position for the four-foot-tall bot, which was originally designed by SoftBank Robotics as the first humanoid robot to live with humans, and the first capable of perceiving and responding to our emotions. Other Peppers have found homes in hospitals, where they work as receptionists, and in banks, where they greet and assist patrons. As Hyperallergic’s Allison Meier experienced first-hand, this little android is quite capable of displaying empathy.
Nissei Eco started tinkering with Pepper a year ago. A company spokesperson told Japan Times that its repurposed bot is part of a larger effort to innovate the funeral industry, as customers increasingly seek alternatives to traditional rituals. The robo-monk may also serve as a substitute to human priests when they aren’t available. As Nissei’s executive advisor Michio Inamura explains in the video below, priests are increasingly seeking part-time work outside their temple duties as donations from families affiliated with temples are in decline.
“So we thought that Pepper could fill that role of worship,” he concludes. Buddhist monk Tetsugi Matsuo, however, questions whether the smiling machine can offer guidance that is spiritual at heart, rather than simply replicate the physical demands of these age-old duties. Pepper the Buddhist monk’s computerized voice, for instance, may not carry the emotion that some people may seek. And some will perhaps see the machine as an undignified presence at a service steeped in tradition. Pepper, however, has yet to administer its first official funeral, so we’ll have to wait and see if it manages to fill such esteemed roles while maintaining a room’s expected decorum.
