[I]t was a surprise to enter the Abbey of Gethsemani’s church and see a body lying on a bier. Br. Harold was dressed in a white cowl and his face bore no signs of being made up by a mortician. He did not look like he was sleeping. He looked like what he was: dead.
He was not alone. The community had kept vigil with Br. Harold all night, each monk taking turns at the bier, praying the psalms with him one last time, prayers he knew so well from decades of saying the Divine Office.
As the funeral Mass began, Br. Harold’s bier was carried directly in front of the altar. There was no casket and his face was not covered. He simply lay there, a monk among his brother monks, albeit a now silent and unmoving participant in the Eucharistic feast.
After the Mass, his bier was carried out the doors of the church to the cemetery, filled with hundreds of identical white crosses. Here are buried monks from more than 160 years of monastic life at the Abbey. Among them is Thomas Merton, known in the community as Fr. Louis, buried beside Dom James Fox, the abbot with whom he so often clashed.
Along with the monks and members of Br. Harold’s family, I processed to a freshly dug grave. Although I’ve come to know quite a few of the monks of the abbey, I didn’t know Br. Harold. He was already in the infirmary with Alzheimer’s when I moved to Kentucky. I learned, though, that I missed out on a beautiful and simple man who breathed God in deeply, particularly when looking at a flower in bloom.
To allow Br. Harold’s brother monks, family members, and friends to be near the graveside, I found a spot on an outlook near the church that stood above his final resting place. Cistercians dig their graves very deep and they bury their dead without caskets. From my perch I could see that a pillow had been placed in the grave, on which had been placed a flower. There was also a ladder leading into the grave.
After graveside prayers, one of the monks descended the ladder while others lifted Br. Harold from the bier. The sheet he was on had six long straps attached by which he was lowered into the ground. As his brothers lowered Br. Harold down, the monk standing in the grave gingerly held Br. Harold’s head.
There was love and gentleness in the way the monk did this. I was reminded of the care with which my wife and I would put each of our newborn sons into the crib, doing all we could to make sure that his sleep wasn’t disturbed. When Br. Harold reached the bottom of the grave, I could see his brother monk almost tuck him in for his rest. He carefully laid Br. Harold’s head on the pillow, placed a white shroud over his face, and then ascended out of the grave, pulling up the ladder behind him.
From my vantage point I could see Br. Harold at the bottom of the grave, and then, shovel by shovel, being covered in dirt. Truth be told, it was disconcerting to see a human body—not a body in a casket, but simply a body—be buried. But never before had the words Christians recite on Ash Wednesday—remember you are dust—been as real to me as they were at that moment.
More importantly, I had never experienced death as something beautiful before this funeral. What I witnessed was the care and love of a community for one of their brothers, a care that extended to the very depths of the grave.
On Ash Wednesday we are reminded once again of our mortality; some of us need this reminder more than others. However, there’s something about my experience at Br. Harold’s funeral that leads me to contemplate my mortality not as something to be feared, but as an invitation to give more completely of myself to those in my community—to my wife, to my sons, to my students and colleagues, to those in my parish, and to those in my neighborhood and city.
Br. Harold lived a life of prayer and devotion in the context of a community, staking his own existence to the existences of others. In his life, he gave himself to his community. In his illness and death, the monks in the community gave themselves to him. At his funeral I learned that to confront our mortality is to come face to face with the reality of how deeply and truly we need one another.
[J]ohn “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.
Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.
Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.
“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”
Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.
For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.
Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.
A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.
The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.
For decades their health was good and the couple relished visits from family and hosting barbecues with friends.
Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.
The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.
Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.
That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.
Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.
Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.
Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.
“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.
New movement to die at home
While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.
The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.
Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.
Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.
Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”
The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.
“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.
“People are awakening to the fact that there is a way to have a good death.”
About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.
Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.
“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”
A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.
“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.
In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.
End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.
Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”
Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.
“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.
Hatala also conducts online training classes for people throughout Wisconsin.
The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.
They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.
The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.
“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.
A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.
Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.
A way to a ‘good death’
For Zito, the care Jeansonne gave his wife made her “almost family.”
Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.
“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.
Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.
“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”
When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.
“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.
Learn more about the end-of-life doula program
To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com
[T]he death of a pet can bring as much grief as the loss of some human friends and family members.
This makes sense when you consider the role our animal companions play in our everyday lives. You cared for your pet’s every need and, because they could not speak, you learned to communicate in other ways. Such caring builds intimacy similar to that found between a parent and their infant; love without conflict, jealousy, or any of the other complications found in most relationships. So when a pet dies, the depth of your grief reflects your loss of a special relationship.
“When we lose a pet, we lose a relationship unlike any other,” says Ken Dolan-Del Vecchio (www.greengateleadership.com), a family therapist and author of The Pet Loss Companion: Healing Advice From Family Therapists Who Lead Pet Loss Groups.
“Many of us love our pets the way we love our children. But in the immediate aftermath of this unique loss, too often family members and friends say things like, ‘Just get another one.’ Instead of devaluing your grief over the loss of this important relationship, as others may advise, embrace your sorrow. Your grief is important, for it will lead you to healing and teach you important things about what matters most in life.”
Dolan-Del Vecchio offers these tips for those grieving the loss of a pet:
Share your grief with empathetic friends. Spend time with people who understand your closeness with your pet. Even some friends may be insensitive, so be careful to avoid “get over it” types of people. “Unfortunately, many people see animals as if they were non-living objects,” Dolan-Del Vecchio says.
Attend a pet loss support group. Pet loss groups provide a concentrated dose of social support. Meeting with others who also grieve and share similar emotions can boost one’s healing greatly.
Keep moving. Exercise is a healer. It boosts feelings of well-being and calm, improves sleep and brightens your mood.
Be creative. Whether you lean toward writing, scrapbooking, ceramics, photography or making collages, creative projects may contribute to healing.
Spend time in nature. Nothing quiets the mind and soul like a stroll through a park, nature preserve, or by the seashore. “The natural world brings special benefits when your heart has been torn by grief,” Dolan-Del Vecchio says. “The sights, sounds, and smells of nature connect us to eternal, circular stories of life and death in ways that go beyond our usual thoughts and feelings, and this experience brings solace to many people.”
“It’s important to care for yourself when you’re grieving your pet,” Dolan-Del Vecchio says. “This requires some planning and acts of will, as grief can diminish energy and motivation. You can lessen your distress through self-care. Above all else, be gentle with yourself.”
But when your feelings towards the person who died weren’t all warm and loving, grief becomes complicated.
Take the death of Mark Salling, who took his life after pleading guilty to the possession of thousands of images of child porn. It’s natural to feel grief at his passing, but this comes tinged with guilt (are you allowed to feel sad when the person who died did a terrible thing?), resentment, confusion and hurt.
Or take the passing of a parent who treated you badly, an ex-partner you cut out of your life, or a relative with whom you had a complicated relationship.
Grieving in these cases is a murky mess that can leave you feeling isolated and mentally tangled. Are you supposed to grieve? Are you allowed to still feel anger at someone who’s died?
Here’s some advice on coping.
Give yourself permission to grieve
Regardless of someone’s actions, as terrible as they may be, they’re still a person who was around and now isn’t. It’s natural to feel shock and deep sadness, even if you hadn’t had contact for years or your opinion of them has long been negative.
Don’t feel guilt for feeling deeply sad that the person has died. They had an impact on your life in some way, and it’s okay to mourn them as a result.
That doesn’t mean you’re forgetting what they did. You can feel more than one thing at the same time. Give yourself permission to feel grief – it’s better to experience and explore it than try to hold it all back.
It’s okay to feel anger
While the person’s death may bring up old feelings of hurt and anger, for someone else it may be a much more straightforward relationship. Cue tributes calling them a wonderful person.
That can make you feel like thinking or feeling anything negative towards the deceased is disrespectful. It’s not.
Someone’s death does not erase the effect they had on other people, and their disappearance doesn’t erase the trauma they may have left behind.
You are not being disrespectful for feeling rage over the person’s actions. You are allowed to feel angry.
Be aware that the person’s death will trigger different feelings in others
Within the death of Mark Salling, a lot of different emotions will be triggered.
‘Everyone’s grieving something,’ Andy Langford, of Cruse Bereavement Care, tells Metro.co.uk. ‘They’re grieving him, or something he’s done.’
People may be mourning Mark’s loss, while others may be triggered by discussions of child abuse being brought into focus, or upset by a high profile suicide.
That’s the case with any death. While you might be angry, someone else will just be incredibly sad. Another will be even angrier. Someone who didn’t know the person might be triggered by the story of their death or what they did.
Seeing each other’s reactions won’t be helpful, and neither will arguing with each other about the ‘right’ response to the person’s death.
hile you may want to tweet about how the person is awful, another might need to express their mourning. It’s not fair to chip in on someone else’s process and criticise how they feel – grief is complex for everyone, and you have to respect that.
It’s hard, but try to keep your feelings about the deceased out of the public eye, or at least let the initial shock and sadness simmer down. You never know how your tribute or anger could bring up feelings in someone else.
‘People need to be careful with what they put on social media,’ advises Andy. ‘It’s permanent, it’s there, and people can use it however they like.
‘When people respond in anger, they can inflict disquiet and pain in others. This doesn’t diminish the pain you’ve experienced.’
Don’t react too quickly
When you’re experiencing a massive cocktail of different emotions, it’s easy to act rashly.
Take a breather, ask for some time off work if you need to, and avoid any situations where you might do something you regret.
It may be tempting to arrive at the funeral and announce all the things the person who died did to hurt you, but this will likely cause hurt to others and leave you feeling empty. Living out those immediate reactions is rarely as satisfying as you imagine.
Accept that resolution may not come in the way you expect
When you’ve had a complicated relationship with someone, you fantasise for years about finally getting that big showdown moment; the time when you’ll confront them with all that they did wrong, they’ll understand and apologise, and you’ll feel released.
Very few people actually get that showdown moment.
That doesn’t mean you can’t get some closure. You may be able to move forward by chatting to a therapist, going through a period of mourning, doing the empty chair exercise (exactly what it sounds like. You address someone as if they were sitting in an empty chair opposite you), finding out more about them, or gaining a greater understanding of why they did what they did.
There are many different forms of resolution, and the person’s death does not have to prevent you from continuing to live your most fulfilled life.
Write a letter
Writing a letter to that person is one way to get a sense of closure, and a way to explore all the different things you’re feeling. It’s a safe space to express emotions that might not be wise to share publicly, whether that’s resentment or a profound sense of loss.
Dedicate some time to getting it all out on some paper for a sense of release.
It’s up to you what you do with the letter afterwards – keep it, burn it, give it to someone so they can understand what you’re going through.
Just know that this letter is for your benefit, no one else’s, and you should feel free to write whatever you like without any shame or guilt.
Ask for help if you need it
There is absolutely no shame in finding someone’s death difficult to deal with, especially when they did something that caused serious emotional or physical pain.
Ask your GP to refer you for bereavement counselling, or find a private therapist with whom you can arrange as many sessions as you need.
Don’t worry that you won’t have anything to say or that you don’t really know what you want to achieve. Therapy is a safe space where you can explore your feelings with no pressure, seeing what comes up and dealing it thoughts as they come.
It sounds scary, but it’s not, and it can make getting through the mourning process much less distressing.
Remember that there’s no ‘right’ way to grieve
Everything you feel is entirely valid – hate, anger, hurt, loss. It’s all okay. You can’t blame yourself for how you feel in reaction to someone’s death.
‘Every case is different and somewhat unpredictable,’ Marcus Gottlieb of Notting Hill Therapy tells us. ‘If someone’s been cut out of your life, or you’re deeply angry about what they did at some point, your feelings on losing them – a “bereavement” which of course you may not even know about until much later – are liable to be intensely complex and hard to articulate.
‘But then grief can ALWAYS entail a different, individual cocktail of emotions – sadness, despair, relief, numbness, anger and so on.
‘There’s no “right” way, and there’s no “right” length of time to go through the experience. Rituals can help, conversation can help, time above all else.’
[W]ith terminal illness comes newfound, and profound, wisdom, researchers report.
They uncovered this silver lining of terminal illness as people in their final months tried to strike a balance between accepting their fate and making the most of the time they had left.
“The end of life presents a unique perspective,” explained senior study author Dr. Dilip Jeste, senior associate dean at the University of California, San Diego’s Center of Healthy Aging.
“This is an extremely challenging time, a confluence of learning to accept what’s happening while still striving to grow and change and live one’s remaining life as best one can,” Jeste said in a university news release. “It’s this paradox that, if embraced, can lead to even greater wisdom while confronting one’s own mortality.”
The study, funded in part by the U.S. National Institutes of Health and the American Cancer Society, involved 21 men and women between the ages of 58 and 97 who were in the final six months of their lives and receiving hospice care. About half of the patients were dying of cancer.
The researchers asked these people opened-ended questions about wisdom, such as “How do you define wisdom?” and “What experiences have influenced your level of wisdom?” The patients were also asked if their illness had altered their understanding of wisdom. Each of the interviews was recorded, enabling the researchers to analyze and interpret the responses.
The participants ranked traits associated with wisdom. The most important quality listed was having prosocial behaviors, followed by demonstrating social decision-making, emotional regulation, openness to new experiences, awareness of uncertainty, spirituality and self-reflection, as well as having a sense of humor and being tolerant.
The patients admitted that facing their own mortality and imminent death dramatically changed how they viewed wisdom. “My perspective, my outlook on life, my outlook on everything has changed,” said one of the patients. “It’s grown tremendously.”
One common experience among the terminally ill was their desire to find peace or acceptance as their health declined and they lost their ability to function normally.
According to study first author Lori Montross-Thomas, “It wasn’t passive ‘giving up,’ but rather an active coping process. They emphasized how much they appreciated life, taking time to reflect. There was a keen sense of fully enjoying the time they had left and, in doing so, finding the beauty in everyday life.”
Montross-Thomas is assistant adjunct professor in UCSD’s department of family medicine and public health.
One study participant said: “For all my life, being a Southerner and having been in beauty contests, I got up in the morning, put my full makeup on and did my hair every day. A lady was never in her nightgown unless she was giving birth! Now all that is very, very difficult for me… I’ve accepted it, and I’ve realized that I have to let it go… I try to take all this with as much graciousness as possible and I’ve realized that my friends really don’t care that I don’t have makeup on or I’m in my nightgown. They are just happy to see me out of bed sitting on a chair.”
The patients also found that living with a fatal disease stimulated growth, leading to more determination, gratitude and optimism. The researchers noted this path to increased wisdom ebbed and flowed as the patients struggled to find balance, peace and happiness at the end of their lives.
Many patients focused on looking for the positive instead of the negative. “I want them to remember me with a smile, laughing and giggling and doing some of the silly things we do,” one person said. “Why do you want to leave on a sad note? I do not want to be remembered being sad.”
[I]n my early years in hospital pharmacy we made Brompton’s Cocktail in accordance with prevailing clinical guidelines, that is, “to order, for terminal patients”. The cocktail consisted of morphine crystals, cocaine powder, alcohol, syrup and chloroform water and it was given sparingly, on the fourth hour, to a patient in extremis.
In her welcome, engaging book, With the End in Mind, Dr Kathryn Mannix, revisits this practice, using it to highlight the days when medical morphine was spooned out cautiously, often in doses too feeble or too potent for the individual, the days, she writes “before we had worked out how to titrate painkillers”.
Informed by her staff that a new hospice admission was refusing morphine on the basis of bad memories of Brompton’s Cocktail, she visited the dissenter personally and discovered a retired psychiatrist who had once tutored her at medical school. In his experience, patients were rendered semi-conscious by the “industrial strength drug mixture”, unable to speak coherently or with dignity, attributes he could not accept for himself or put his family through. Mannix conquered the role reversal implications of ministering to her one-time mentor and employed her softly, softly conversational approach to bring him to a position where “he might allow that medicine had progressed” since the 1980s.
Mannix is a British palliative-care specialist who, in her own words has spent “half a lifetime … keeping company with the dying”. Her book is part memoir, part witnessing and a good part wise counsel in best practice for the dying. Her strong suit is conquering the moment with a quiet conversation, often begun in an atmosphere of heightened emotions, fixed beliefs and the competing interests of family gathered at the deathbed.
She is a natural storyteller with an eye for detail, dialogue and the telling moment. “I am offering the reader my eyes and ears, my seat at the table, my place in the conversations, and my perspective on events.”
As recently as 2016, Australian author, the late Cory Taylor, wrote in Dying: A Memoir: “For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been.”
Mannix wants the lost vocabulary as well as the etiquettes of dying brought back to the death bed. She teaches families what to expect, to give each phase of the body’s shutting down a name. She begins with “the gradual increase in daytime sleeping, the gradual reduction in time spent awake” and ends at Cheyne-Stokes pattern breathing, cycles of fast-to-slow breaths, often with long gaps between, until the “gentle ending of the cycle”. The approach of death, she hopes, will one day be conceived more generally as a process, like birthing, moving stage by stage to an outcome.
The other string to Mannix’s bow is her qualification as a Cognitive Behaviour Therapist, a discipline she used to develop coping strategies for people facing impending death (she wrote Britain’s innovative CBT First Aid Plan for palliative care).
This psychological intervention is reported to dramatic effect in the case study of 22-year-old Mark, who was in the end stage of cystic fibrosis with no transplant available. He was incapacitated by panic attacks, gripped by fear and very angry. Mannix took his fear, put it on paper in a diagram and allowed him to discover how adrenaline was driving the circuit, creating a self-defeating increase in his panic.
The liberating effect of studying the pattern allowed Mark a few months of relative freedom from fear (including a pub outing with mates) before he developed a fatal chest infection. Mannix was called to see him and was greeted by Mark at his most triumphant: “You should be f—ing proud of me … I’m f—ing dying and I’m not f—ing panicking!”
Dr Charlie Corke is an Australian intensive-care specialist and a strong proponent of timely advanced-care planning. His book, Letting Go, walks the same terrain as Mannix but his map is the ICU of a busy hospital where decisions are made on the run, as it were, not in the relative quiet of a hospice setting. His patients arrive in ambulances, desperately ill, close to death, often unable to communicate their wishes, and reliant on a frantic relative’s instructions.
“Doctors and families feel a tremendous responsibility to do something to save (or extend) life,” he writes. “This happens however unpleasant the medical journey is likely to be — and however poor the outcome.”
In crisp, clear prose Corke confronts the reader with the scenario most of us in Western society are likely to face after a period of declining health and function: ambulance, hospital, unconsciousness, no plan in place, family disagreements about treatment, escalation of medical intervention, and finally, our last days spent “connected to machines, cared for by strangers, and separated from family”.
“Medical terminology will dominate our last days and weeks,” he writes.
While not denigrating his own profession, he takes a humanistic approach to its limits. The reader learns of the “covenantal ethic” whereby a surgeon promises to use his or her skills “to battle death on behalf of the patient. In return, the patient puts their trust in the surgeon and accepts whatever is required”. The covenant can have unwanted outcomes, notably when a surgeon has not been given prior permission “to stop if things [go] badly”.
Keeping in mind that “saving is what doctors do”, Corke advocates forward planning well in advance of old age and infirmity, in writing, with the added backup of an appointed decision maker.
He presents brief case histories to show how things can go wrong. Rosalie’s story, for instance, gives pause for thought when appointing a decision maker. She chose May, her only daughter, as her agent. May gave up her job to care for her mother and swore to sensitively respect her mother’s wishes. When Rosalie was taken to hospital after developing a severe infection, May acted upon her mother’s stated wishes: comfort care with no burdensome attempts at cure.
However, May’s five brothers arrived at the hospital and exerted pressure on May to instruct the doctors to do everything possible to “save Mum”. Rosalie was put on life support, had six operations, developed multiple organ failure and finally died. May, writes, Corke, “seemed crushed and guilty”. The message is clear, he summarises, inform everyone concerned beforehand and obtain reassurance that all will respect the bargain.
Making choices is hard. Corke suggests that “prior (well-considered) wishes should carry more weight than a later decision made in a crisis”. And he covers all the bases, from religious to legal ramifications, to distorted portrayals of the success rates of CPR in TV and film, and emotive journalism around withdrawing life support.
The book ends with practical tips and accompanying case histories, tying up Corke’s thesis with the kind of wise, informed advice we crave in the era of Dr Google, advice that may be more useful than we think in light of the recent Productivity Commission Report into palliative care in Australia. Seventy per cent of Australians wish to die at home, without pain and surrounded by family. The “without pain” part is the work of the severely underfunded palliative care sector. Fourteen per cent achieve that goal.
As a manual for how to avoid ending up in ICU, in what one of Corke’s patients called “the bad bit at the end”, Letting Go is a guide book for our age.
After years of living with stage IV cancer, I have some suggestions.
By KATE BOWLER
[E]VERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.
When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.
So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”
It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.
I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.
“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.
“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.
We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.
A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.
Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.
This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”
The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.
What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.
The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.
My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.
Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?
Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.
The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”
The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.
There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.
A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.
After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.
But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”
