The people bringing comfort to the dying

Hospice chaplain Kerry Egan gathered the stories she heard from the dying into a book.

Hospice chaplain Kerry Egan gathered the stories she heard from the dying into a book.

Here's one thing that often happens in a hospice. A terminally ill patient will see their dead mother appear at the end of the bed. "She'll come get you from this world and usher you to the next. Anyone who has worked in hospice for more than a month will tell you it happens all the time," says hospice chaplain Kerry Egan on the phone from South Carolina.

Egan is a graduate of Harvard Divinity School and her new book, On Living, was published late last year. It's a collection of stories from her experiences with the dying and a reflection on the meaning of life and death. She tells me the job of a chaplain is quite straightforward. "We're not there to preach our own beliefs, rather help people discover what's in their own spiritual toolbox."

Apart from sitting at bedsides, sometimes singing, or holding a hand, the most basic and most difficult task of a chaplain is simply to be present. "So you just sit there?" asked a friend of Egan's, "You consider this work?"

Triple amputee Dr BJ Miller wants to "de-pathologise death".
TODD HIDO

Triple amputee Dr BJ Miller wants to "de-pathologise death".

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Egan, who is bubbly and friendly, is not afraid to poke fun at herself. And what may seem like an utterly depressing job is, in fact, she says, full of joy, laughter and at times enlightenment. "Don't get me wrong, I don't want to sugar-coat or romanticise death. Hospice work is a very hard thing, but the trick is to say to yourself, I will not be afraid. And you have to get more out of it than you put into it."

"There seems to be a process of tying up loose ends in hospice. People have a chance to consider and reflect on their lives," she says.  

While most chaplains keep the secrets of the dying to themselves, it struck Egan, many of the tales she was hearing were remarkable and often "liberating and breathtakingly creative". Some patients weren't comfortable sharing their stories for the book ("That's why it's so short," she laughs), but others were more than willing.

LIFE LESSONS FROM THE DYING

Gloria was one such woman. She made Egan promise to tell her stories, saying "Maybe someone else can get wise from them." 

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When Gloria was 19 she became pregnant out of wedlock and was whisked away by her strict parents to have the baby, then give him up for adoption. After the birth she found she couldn't let her son go. Her parents rejected her and her new baby, so her grandmother took her in. 

Eventually Gloria married, but she didn't tell her son he had another father. The bond between her son and husband was never strong. Just before Gloria passed away, she asked Egan to call her son to let him know his father wasn't really his birth father. She wanted her son to know it wasn't his fault they were never close.Egan writes, "People keep secrets in a desperate, often futile attempt to protect themselves or the people they love."

Another patient had revelations about appreciating your body. Egan could relate – she had recently reacted badly to the anaesthesia used during a Caesarean section, which led to months of psychosis and significant weight gain from the drugs used to treat the reaction. 

The dying woman had cancer and was in horrific pain. She looked at her hands in the light as if she'd never seen them before and said, "I'd never admit this to my husband and kids, but it's my own body I'll miss most of all. This body that danced and ate and swam and had sex and made babies. It's amazing to think about it. This body actually made my children… and I'm going to have to leave it. I don't have a choice." 

With this in mind, Egan encourages people to appreciate how healthy their body is, rather than focusing on how it looks. It worked for her. "The veil lifted. I had been very self-conscious about gaining 50 pounds (22kg) from the drugs and I thought, I could be her. To worry about my pudginess was ridiculous. I was lucky to have that medication, despite how it affected me – six years ago there would have been nothing to treat the disorder I had."

Egan's advice to women worried about their bodies: "Go put a bikini on. You're never going to look better than you do today."

LIVING AND DYING IN NEW ZEALAND

In New Zealand Dr Richard Egan [no relation] has focused his career on how we can improve our approach to end of life care in a spiritual context.

Dr Egan lectures in health promotion at the University of Otago and holds a PhD in spirituality and end-of-life care. His thesis looked at 20 hospices across the country and followed 52 people who were dying, their family members, their chaplains and their cultural group. Many were Maori. The study culminated in a spiritual care handbook that's used in hospitals and hospices throughout New Zealand.

He discovered that, while of course the dying have physical pain, most also have spiritual pain or some sort of existential crisis, which is why he believes spiritual care is so important, even in an absence of religious belief. "Only 12-20 per cent of New Zealanders go to church," says Dr Egan, "but the other 80 per cent still have spiritual needs." 

Then there's the fact that people are living with complex medical problems for longer periods. He calls it the "long dying... More than 60 per cent of us will die of heart disease or cancer, and most will find out 12 months before death. That's a long time to think about what's coming."

So how do we offer spiritual care? Dr Egan says that asking the person in need, "What is meaningful to you right now?" opens a space for a conversation.

Even though we all want a good death, Dr Egan says, many would rather not think or talk about it. We plan dinners, holidays or how we'd spend our loot if we won Lotto, but not for the event destined to occur. 

There are many potential reasons. It could be materialism – a new car or frock might steal our attention for a few minutes at least, or it could be a youth-centric culture. A more telling sign says Dr Egan is that most don't plan for death. An absence of a will or funeral arrangements indicate perhaps you haven't come to grips with your own mortality.  

THE NEED TO MAKE AMENDS

Acceptance of death often leads to more altruistic behaviour, as well as a desire for forgiveness. Dr Egan recalls how one of his subjects, a "Barry Crump type" who initially told him to bugger off, eventually agreed to talk after Dr Egan shared a duck-shooting story. 

"He'd found out he was dying from lung cancer, he was angry at himself for smoking and thought about taking his life. He didn't go through with it and not long after his estranged son randomly answered a Trade Me advertisement for some tools he had for sale. He hadn't seen his son for years and felt he hadn't treated him well. He wanted to apologise. He was also trying to forgive himself. "This is the work of dying." 

For Maori, cultural obligations mean they have different priorities in the final stages of life. Kaumatua often have a responsibility to pass on ancestral knowledge and ancestral taonga or treasures, and sometimes speaking rites have to be handed down, says Dr Tess Moeke-Maxwell, who has studied Maori experiences of dying. She says the psychosocial or spiritual aspect to end-of-life care is critical for Maori. "Often the spiritual aspect is seen as fluffy and trivial, but for many of us it gives meaning in life and death."

She talks about the importance of aroha, family and of manaakitanga or hosting whanau and friends who come to visit the dying. Dr Moeke-Maxwell explains there'll often be a 24-hour vigil, so the ill person is always comforted.

Her study identified a cultural gap between Maori and Pakeha when it comes to end-of-life care delivery. "Maori often feel alienated in a system where healthcare providers often value the biomedical model and do not view healthcare holistically."

FINDING BEAUTY IN THE DIFFICULTY OF LIFE

There's nothing quite like being at death's door yourself to help you appreciate what terminally ill patients are facing. Enter Dr BJ Miller, a California-based doctor and triple amputee who has been at the forefront of a spiritually-led palliative care model in San Francisco.

In November, 1990 Dr Miller was a second-year student at Princeton. After a night drinking, he and a group of friends spied a commuter train and, for a laugh, Miller climbed atop. What happened next he can't recall, but he was told an 11,000-volt current ran through his wrist watch, through his arm and down his legs, sending smoke through his feet. 

He remembers nothing about the accident. By email he tells me, "For a few years I'd occasionally have what felt like a flashback just before falling asleep. The sight and sound of an explosion. Otherwise my earliest memories were about a week into the hospital stay, but those are spotty and like waking from a dream even though I was apparently conscious throughout."

The accident led to the amputation of both legs below the knee, and his left arm below the elbow. The loss of his arm caused more grief than losing his legs.

"Hands do stuff," he told the New York Times. "Your foot is just a stinky, clunky little platform."

Dr Miller went on to complete his studies and become a charismatic palliative care doctor. In 2000, he became executive director of a small, six-bed hospice in Hayes Valley, San Francisco. The Zen Hospice Project formed in 1987 in response to the Aids crisis, and took in young men who were dying and often stigmatised by the mainstream medical establishment. 

Dr Miller talks about Zen Hospice representing an effort to "de-pathologise death". A place where medicine is not the primary focus, where family and friends are free to come and go as they please. A place that operates around a kitchen, where the smell of baking cookies can provide comfort to the dying – sensory aspects, what Dr Miller describes as "dignity by way of the senses". 

In his 2015 TED talk, he points out that hospitals are for acute trauma, while a hospice is a place where we can usher in grief with warmth. 

Accepting that death is part of life isn't easy, he tells me. "To be human is really hard because we can always imagine a reality for ourselves that we don't or can't have. Even beauty can be hard because it ends. And the more we love, the more we have to lose. Death is one thing, but knowing we will die at some undisclosed time means we are inherently insecure."

On the flip side, he says suffering makes you realise you can always find some beauty or meaning in what life you have left.

His own views on death are quite matter of fact. "As I sit here, alive and well, I don't feel any fear of death and I didn't when I was closer to it. Rather, I'm more aware of anxiety I feel about not really living my life while I have to live it. We can't solve death – proof of death is all around us, just as life is. 

"The two rely on each other, it's a package deal. We don't get one without the other and I also like to point out how that's precisely what makes life precious. If we all die, and every living thing does, that's normal. It doesn't mean we aren't sad or afraid or experience other hard feelings. Also part of the deal."

A ZEN APPROACH TO DYING

Many of the Zen hospice volunteers are Buddhist. It's a religion that places much importance on a dignified death. Here in New Zealand, we have our own Buddhist Hospice in the Auckland suburb of Avondale.

Amitabha Hospice provides home care to more than 65 patients in an outpatient capacity, and offers weekly meetings on site where patients and family members can come for coffee groups and take part in reiki sessions, yoga and meditation.

The founder of Amitabha Hospice, is Baltimore-born Ecie Hursthouse, who has a background in nursing and worked at North Shore Hospice before opening New Zealand's first Tibetan Buddhist Centre – The Dorji Chang Institute – in 1974. Amitabha Hospice was opened in 1996 they share a white rickety fence and acres of lush lawn.

Hursthouse and her husband William became Buddhists after a meditation course in Nepal in 1973. "It made sense to me to stop being hedonistic hippies and become altruistic Buddhists. We Buddhists believe selfishness brings unhappiness, so the flip side is helping others brings joy."

She leads me into one of their meeting rooms in the brick two-level house where the hospice holds meetings and training sessions for volunteers. Faded pictures of the Dalai Lama grace the walls.

I ask her what it's like to comfort a person who is dying. "When faced with death, there are two sides to the coin – on one side people will ask, 'Have I done enough, what are my regrets and is unfinished business OK?' On the other side, 'What's going to happen now, where will I go?'"

Hursthouse tests me with a question, she and her volunteers are often posed with. "So what how would you respond if a dying patient asked you, 'Why is God punishing me?' "

"Err, probably, 'No, he's not?'"

Wrong answer. "Why do you feel like that?" is the correct response. And that will typically lead to, "Well, I shouldn't have done this, or that."

You get the feeling Hursthouse excels at her job. 

She talks in quiet tones, smiles a lot and reaches for your arm when she's telling a story. Her own suffering, from a head-on collision with a water truck nine years ago, left her with an everlasting limp and an inability to stand up if she falls. It has been life changing. "Suffering connects you with people."

She also has many first-hand stories that illustrate the desire for forgiveness at the end of life. She recalls one woman who had been a nurse in World War II and belonged to a religion that seemed to foster guilt. Consequently, she was frightened of dying and she asked Hursthouse to come to her deathbed. 

"She couldn't pass on, she was stuck on this promise she had made to a soldier. She told him she'd come back and see him after the war. But she never made it back."

Hursthouse offered her the possibility she was worthy of forgiveness, and encouraged her to hold St Francis' hand. "I saw a light travel from her heart to her head and she was gone. She'd forgiven herself and could go."

She reflects on her work like this: "We're all dying really, and with patients the less difference you see [between yourself and them], the more you can help."

Hursthouse's longest-serving volunteer, Joop Van Herk, is an affable Dutch native with a social work background, who also works as the hospice's volunteer co-ordinator. 

"It's important to not have pity," says Van Herk who is barefoot in her office, which is strewn with Buddhist trinkets.

Part of Van Herk's role is to identify who will make a good volunteer. There are currently more than 80 but they are constantly on the look-out for more. 

"If you see death as a natural part of life, you'll be a good volunteer. If you are grounded, others pick up on that confidence, but the key is not to be overbearing. It's the being, rather than doing."

Volunteers are free of most menial duties, rather they sit, chat, maybe take patients shopping or go out for coffee – all without the weight that might be felt by a close family member. 

"You have to be a bucket. You listen, validate, you learn how to decipher the message behind their words."

The terminally ill are often isolated and depressed and the weekly two-hour visit from a volunteer may be the only contact they have. "One guy I visit is in his 80s. I plays cards with him, we just joke around. I've been seeing him for 12 years; we've become family." 

Another woman who attended Van Herk's social groups, learned she was clear of cancer and was worried she'd no longer be able to come to the coffee meetings. "I always say, just because it's hospice, doesn't mean you have to die!"

Humour gets Van Herk through the days. And she's learned to accept death as a part of life. 

"I'm not afraid of dying, we are all a recycle project anyway," she says.

Kerry Egan sums it up like this: "If there is any great difference between the people who know they are dying and the rest of us, it's this: They know they are running out of time. They have more motivation to do the things they want to do and become the person they want to become… 

"But you don't have to wait until you're dying to do that… Don't put off doing the work of becoming who you want to be."   

 - Stuff

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