WHEN Chris Klar's mother, Helga, died in the North Shore Hospice last month, a nurse put a small butterfly on her room's doorhandle and then came in and opened the window a little bit, saying, "Just in case her soul wants to go out."
"It was very comforting," says Klar.
Her mother was admitted to Lions Gate Hospital on Christmas Day, and shortly afterwards was diagnosed with terminal cancer. She also had osteoporosis so badly that the 79-year-old woman was breaking bones while in bed. She was moved to the hospice on East 14th Street four days later.
Klar's mother was a Ladner resident who just happened to be visiting for Christmas when she was admitted to hospital. "So this is where her final resting place was, which is kind of cool because we have the mountains here and she was from Germany. I have to say, I feel really lucky it all came apart here (in North Vancouver) and that I could just come and spend days and days with her," says Klar.
"In the hospital, it's noisy and all sorts of things are going on, you have a curtain between you and the other person, and the nurses maybe talk too loud. It really takes the family to be involved to ensure the patient is comfortable, I think.
"We come here and she has this beautiful room. It was private. The nurses were patient and more like visitors. She wasn't hooked up to all of the tubes and stuff, so that was more comfortable, and she was in this special $30,000 air bed. She probably had six or seven broken bones at this point - ribs, spine - and this bed would manoeuvre her so that she stayed comfortable. The lighting is nice, the garden beautiful."
Klar says the effort the hospice staff make to include the whole family is remarkable. "There was no restriction on the number of people we could bring. We must have had 20 people - grandchildren, her brother from the States and his family - and they'd never say 'Could you be quiet?' They'd say, 'There's a private room for you, if you like.'"
Klar says the hospice doesn't just allow family members to sleep over with residents, they go out of their way to make them comfortable. The hospice rooms are designed with pullout couches, there's a separate shower for guests, personal laundry facilities, an adult TV lounge as well as one for kids with electronic games, books and toys.
There is even a "spa" with a hydro-therapy tub where residents and clients of the Monday Palliative Day Program can get their hair and nails done or have a foot massage.
People process grief in different ways and Klar acknowledges that her brother presented as really "angry and demanding: 'What are you doing about this?' and 'Look at her, she's not eating!' and they would very gently explain the process for the 12th time.
"When she was shutting down, they would explain the process without getting medical about how it was going to go. They had a great way of measuring time for you because everybody wants to know 'How long?' What they said was: 'If you see a change in a week, then it's probably weeks. If you see a change every day, then you're probably talking days.'
"That's a neat way of measuring it when you have to talk to people who need to come in."
The hospice offers pastoral care for those who want it. Klar says her mother hadn't practised her Lutheran faith much in the last 20 years of her life but enjoyed the company of the chaplain who visited. "He is just a beautiful man who would bring in light and come as often as she wanted. He was the person who knew how to be in this situation."
"It turned out to be, from a tragic circumstance, more of a journey.
"One of the nurses said she saw her role as being similar to a birthing coach, except that instead of coming, you're going out. And that was really helpful. Once people got their heads around 'She's transitioning, and that's how it is,' it became: How can this be as nice as it can be?
"We discovered they had these amazing computers and the ability to Skype. I have a sister in Ontario, she's got relatives in Europe and everyone was visiting with her. It was amazing.
"Then we went to YouTube and pulled up German folk songs from her childhood, and even when all her organs were shutting down and she wasn't really moving she was tapping her fingers with the music and you could see her mouth trying to sing along. We could tell that meant a lot to her."
"So, when I go, when I transition, I would hope for an experience equal to what my Mom had here."
. . .
Judy Smith was born and raised in Vancouver but has called North Vancouver home for 30 years. Despite the fact that she is a longtime resident, she says she had no idea the hospice was here. She is proud of the fact that she was one of the first people hired by Thrifty's to get its North Vancouver store open in 2010. She was working right up to the time she was diagnosed with cancer in her throat a few weeks ago.
The news was shocking and final. There was no point to an operation, chemotherapy or radiation. Essentially, she went to Vancouver General on Jan. 2 for a consultation and never left hospital. Smith says she told her daughter who lives in New Westminster right away, but took a week to get her own thoughts in order before she shared the news with her siblings, an older brother and sister and a younger brother who all live in the Metro area.
She was transferred to Lions Gate Hospital and from there to the hospice two weeks ago. "It's been sudden and fast-paced. I didn't really have time to think. I think I'm still in a little bit of shock. I haven't cried. I'm not sad. Perhaps you would say I'm numb."
She says the hospice has been invaluable in helping her to plan funeral arrangements and "putting my ducks in place."
"The hospice is the step before heaven. It has nothing to do with Lions Gate Hospital and I would encourage anybody and everybody to volunteer or donate.
"I can't say how wonderful the staff are here They are so kind and have so much empathy and sympathy. There is no better place to be than this hospice before you go, before you move to the next world, wherever that is."
Smith says she's OK with dying, but wishes it came with a date. "I feel like I'm living on the edge, and there is no procrastinating here. I'm quite an organized person, so right now my priority is to try and get every thing in order. There's always a temptation to say, 'I'll do it tomorrow.' But maybe there isn't a tomorrow,
so I'm living every day to the fullest right now." . . .
David Lane's 76-year-old mother, Carol, fought colon cancer successfully four years ago, but a year ago began to feel tired. A checkup revealed breast cancer had spread to her bones and liver. She did quite well for a while living in her central Lonsdale home with a mixture of public heath care and private nursing. She came to terms with the terminal nature of her illness and continued on with palliative care that allowed her to extend her life in a relatively normal way.
Lane says setting up their mother for living at home was sometimes a strain on the extended family. It was a process of learning what they didn't know, accounting for it and then dealing with unplanned crises. "It was a disaster in the beginning."
In the end, her four children ended up taking weekly shifts as the point-person caregiver, creating an online calendar for appointments related to their mother's health care, and establishing a central phone number that medical personnel could call that would be forwarded to whichever family member was on call.
Lane says it was a difficult process for his mother to determine when to stop palliative care and go into the hospice, "when to stop fighting and accept a downhill progression.
"That's an important decision for the patient, because if they wait too long before they come in the hospice, they are barely here and they don't get the benefits. In here, (Mom) can release all the burdens of her everyday life. She doesn't have any financial worries, she doesn't have any health-care worries. She can release herself from worldly stresses and say goodbye to people. If you wait too long, you don't get that chance.
"I can't say enough about the staff here. They've never said 'no' to anything; it's always about what they can do. Mom's got her own paintings hanging in her room and her own chair. That's the big difference between here and hospital care. They've allowed her to move her life in here while taking the burden of caregiving away from her and her family.
"It feels weird to say this, but I think Mom feels it too: she's dying in a way that allows her to say goodbye. There are so many people that don't get that chance.
"I had no idea about palliative care before Mom got sick. We just feel so privileged. I cannot imagine that people in rural areas of B.C. would have access to this type of care and if I could advocate for anything, I hope that everyone would fight for this.
. . .
Dr. Peter Edmunds says a lot of modelling was done to determine the number of beds needed in the hospice to handle optimal stays for patients in the region. The number turned out to be 13. The hospice was built with 15 beds because the money - thanks to fundraising by the Lions Gate Hospital Foundation - was there to build them, but currently only 10 of the beds are funded.
Edmunds is the medical director of palliative care for Vancouver Coastal Health's Coastal region. The 52-year-old doctor runs a family practice in North Vancouver and is also part of a team that delivers palliative care to both referred patients and those without their own family doctor. He works six days a week and acknowledges that his day off is often spent at Lions Gate Hospital or the North Shore Hospice where his two sons, aged seven and 10, are familiar visitors. He describes his medical directorship as his "middle-of-the-night" job.
Born in Cape Town, South Africa, Edmunds says he wanted to be a doctor from an early age: his mother puts it at seven. He attended the University of Stellenbosch, graduating in 1985, but found despite his early calling he wasn't absolutely loving medicine. He also didn't want to serve in the South African army and left South Africa to avoid military call-up, arriving in Canada in 1986 and eventually settling in Elkford, B.C., in 1988. For three years he worked as the town's only doctor.
Following a desire to do surgery, Edmunds became a surgical assistant at B.C. Children's Hospital for a year while he applied for other jobs. But when push came to shove and he was offered a position in surgery in Halifax, N.S., Edmunds declined, liking Vancouver too much to make the move. Eventually he bought his North Vancouver practice in 1993. "I liked the autonomy of it," he says simply.
Now, he says, it's more about the privilege of being allowed into peoples' lives. "Most people need you to hang in there with them, that's the key, I think.
"I started getting interested in palliative care as part of my family practice, and then we had this group (of doctors) who took on patients who had palliative care needs but didn't have doctors. I thought that's what everyone did, but people and doctors have different levels of comfort with it.
"I started picking up more and more patients as the numbers in our group dropped, and more and more family doctors left the hospital (gave up their admitting privileges).
By 2009, Edmunds was already doing some of the scheduling and accounting for the remaining four doctors who were delivering palliative care to "orphan" patients. When the medical lead in the group left, VCH asked Edmunds to become director.
They provide care for about 80 deaths a year - each. In contrast, a regular family doctor might handle care for four deaths a year (although they may have other unexpected deaths).
"That was the first time I started thinking about everyone in that group, instead of just my patients. That was an eye-opening experience.
"It's very easy to do palliative care and think you're doing a good job because when you bring palliative care around a patient or family that needs it, the simple interventions are very beneficial to them. But I realized that we needed to look at not who we looked after, but who we weren't looking after."
Statistics show that terminal North Shore patients in the last year of their lives spend an average of 21 days in hospital or hospice care. That means they spend 344 days of their last year at home or in a residential care facility and that's where palliative care needs to be delivered. "If we are not looking after our patients there, we are letting them slip through the cracks. So it's about attaching to these patients and sticking with them and providing planning for them."
It took Edmunds and his team about a year to build a comprehensive picture of how people spend the last year of their lives on the North Shore, Bowen Island and the Sunshine Coast as far as Powell River. He says it was eye-opening how poor the care provided to the dying can be and how many were "slipping through the cracks" of a well-intentioned massive healthcare system.
"We know that people with congestive heart, airway and early cancer problems need help with their nausea, their vomiting, their constipation, their fatigue, their insomnia, their anxiety. Those are the symptoms that ruin peoples' lives. Even if you are early in your treatment, palliative care can help in getting some of that stuff out of the way. There's some very good studies now that show early-intervention palliative care actually prolongs life, not just improves quality of life.
"We realized we had to start identifying the patients and bringing palliative care to them instead of waiting for them to come to us."
Building on British standards, Edmunds and his team came up with what turned out to be quite a simple list of criteria to determine if patients were in the last year of their lives:
If a patient with any cancer that has spread, any congestive heart disease or any chronic obstructive airway disease is admitted to hospital twice within a year for acute care, the chances of that patient living a year are three in 10.
Among patients with frailty and/or dementia who are spending the majority of their day in bed, needing assistance for most tasks, nine out of 10 are dead within a year.
A handful of other deaths are also easy to predict: deterioration of Parkinsons and ALS, kidney failure or dialysis patients who choose to stop treatment.
"So we said if you refer patients that meet these criteria, we will help you."
In 2009, Edmund's group delivered palliative care to 450 patients on the program. In 2011, that number jumped to 750.
"It's been a huge advantage," he says. Of about 1,300 people on the North Shore who die every year, 1,100 have advanced illness and "we know where they are," says Edmunds.
The real key, he says, is connecting to patients early enough so they can make good choices and doctors can start to open up conversations. If that happens, he says, "then you can get patients making choices that really improve their end-of-life stage - like their hospice experience or their ability to die at home as most patients say they want to.
"If you take away pain and other symptoms, you take away fear and anxiety, family strife, if you help people through that, you allow them space to find quality - whatever that is for them.
"If you don't get palliative care set up early enough, you end up with patients in crisis at the very end of their lives and their families in crisis. You can't really help people as much if you get there late. You can help with controlling symptoms, of course, but if you get there sooner you can help families write some amazing final chapters.
"I tell people: 'You come to the hospice; it's not a sad place. Almost always there are people laughing, pets running around, children - for people who get there with some preparation, it's a wonderful experience."
Since its opening in 2010, the hospice has looked after approximately 360 patients. Edmunds believes hospice care has been a positive experience for every single one of those patients, but wishes that some of them might have got there a little earlier for the "optiMom" experience. "When you see the hospice at its best is when you see a mother having a birthday party with her children.
"My children are very comfortable in the hospice. It's normal for them. They just accept that's where you care for people who are dying. I wish more people could see it the way they do. That's why we have open house days and try and bring the public into the hospice. It helps to break down barriers.
"The day program does that as well, but more than that it offers amazing support to patients embarking on the last part of their lives. I didn't really understand that until I spent some time there: it's OK for the elephant to be in the room. The patients are in a place where we can only empathize with them. The only people who can be in that place with them are other people who are dying."
Edmunds is quick to emphasize that this is a positive experience, not a sad one. He went to visit one of his patients a few hours ago and discovered most of the day-program participants in her room sharing cupcakes in celebration of a patient's birthday.
He tells the story of his children finding a bumblebee unable to fly the summer before last. "It was obviously on its last legs, but they went off and found a box and came back with the bee in the box with a bowl of sugar water and some flower petals. And I thought, 'Oh dear, they don't understand death at all,' and I said, 'Kids, this bee is going to die.'
"And they said, 'We know. He's hospiced.'"
For more information on the North Shore Hospice go to northshorehospice.ca.
