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Darwyn Deserved a Better Death

He was a high-needs teen facing a short life. When the end came, he was deprived of the comfort of hospice support. A Tyee special report.

Katie Hyslop 1 Mar 2022TheTyee.ca

Katie Hyslop is a reporter for The Tyee. Reach them here.

Darwyn Danesh had simple tastes, but they meant the world to him. Long car rides, listening to Top 40 pop music, chocolate smoothies from Starbucks, and Dwayne “The Rock” Johnson movies, especially from the Fast and the Furious franchise.

“He was obsessed with being driven,” said Roshan Danesh, Darwyn’s father, adding they would listen to music by the likes of Justin Timberlake, Ed Sheeran and Maroon 5 on the car stereo. “It was calming for him.”

In the last years of Darwyn’s short life, his parents took him on long drives daily around Greater Victoria. They drove so much with Darwyn, who was autistic and also had Trisomy 21, or Down syndrome, that they switched to an electric car because they were spending so much on gas.

Darwyn was non-verbal and used a type-to-talk app on his iPad to convey his needs. He was not able to engage in complex conversations, and his parents sometimes had difficulty interpreting what he needed. If he was really upset, he might throw an object across the room.

“He was very, very autistic in that he read the same book at least five times a day for five years, and he would only drink his milk while reading Chicka Chicka 1,2,3, and he wouldn’t drink anything else,” said Cathy Nash, Darwyn’s mom.

“It made him happy. And for the four years before that he read Chicka Chicka Boom Boom. So his capacity for routine and repetition was quite incredible. Anybody who’s ever worked with him has memorized those books.”

When he was a little boy, Darwyn was his parents’ “sweet sunshine boy,” full of joy despite the hardships he faced.

He had heart problems, related to Down syndrome as well as to subaortic stenosis, which blocks blood from reaching the heart. By the time he turned four, Darwyn had undergone three open heart surgeries.

But his stenosis remained, a diagnosis that his family knew would one day be fatal.

They didn’t know, however, how horrific Darwyn’s final days would end up being for him and everyone who loved him. At the end of his life, Darwyn faced impossible barriers to palliative care, enduring needless pain and suffering. He was just 16-years-old.

Canuck Place, a charity, is the only pediatric palliative care service in B.C. But with just 40 per cent of its funding sourced from the province and the rest from fundraising, it doesn’t have the capacity to serve every child requiring in-person palliative or hospice care.

For children like Darwyn with behavioural challenges, the inability to access in-person palliative care is just one in a long list of private and provincial services that are not designed to support or accommodate them.

Canuck Place ‘not equipped’ to take Darwyn

Because of his subaortic stenosis, Darwyn’s family knew his life would be short, and that he’d be unlikely to survive beyond his mid-20s.

At 14, Darwyn’s sweet demeanour began to change, and he was quicker to become frustrated and lash out. He still loved long car rides but resisted visiting most places and became overwhelmed more easily.

His family doesn’t know why but suspect that he was in some kind of pain and didn’t know how to tell anyone.

“I don’t know if he felt pain the way other people feel pain, or if he just accepted it as a part of what his life was,” said Nash. “He once went for three days with a sock stuck in the toe of his shoe and didn’t communicate it to anyone but behaved really badly.”

That year, 2018, Darwyn was referred by his cardiology team to Canuck Place, the only pediatric palliative care respite and hospice service in B.C., because of his declining health.

Between its two Lower Mainland locations, Canuck Place has 13 patient beds and eight family suites for palliative respite and hospice services, in addition to outpatient services and supports like prescriptions, symptom management, music therapy and recreational therapy, plus access to doctors, nurses, personal care aides and counsellors.

Darwyn’s parents had hoped that Canuck Place would accept Darwyn for overnight respite visits. And they assumed their son could go there when the time came for hospice care.

While hospice care offers medical support for a person who’s in the process of dying, palliative care helps people with critical, and often fatal, conditions to live comfortably.

But the family was shocked to learn that because of Darwyn’s autism and his agitation in the presence of noisy children — which would cause him to cry, try to escape and sometimes even vomit — Canuck Place wouldn’t accept him for palliative respite services at either location.

“Our prior experience with children, and especially adolescents with severe [autism spectrum disorder] who are otherwise physically able, is that our nursing team is not well equipped to handle the challenging behaviour,” reads a letter from Canuck Place to a psychiatrist that the organization recommended for Darwyn.

Danesh and Nash also received a copy of the letter and shared it with The Tyee.

Instead, Darwyn and his family received out-patient services from Canuck Place, such as video chats with mental-health professionals, drug prescriptions, instructions for his caregivers in case of some kinds of medical distress, access to a 24-hour nursing line and regular check-ins by email.

In the final six months of his life, Darwyn also had weekly visits from a nurse arranged through the Ministry of Health-funded Nursing Support Services program for home care to provide a break for his parents, though the nurse was never left alone with Darwyn because of his complex behavioural issues.

The family hoped that Darywn’s nurse would be a friendly and comforting presence for their son up until his death, which seemed imminent.

But it wasn’t enough.

When it became obvious that Darwyn was dying in July 2020, his parents ended up left alone to comfort their son, who was throwing up blood, for over 24 hours before medical professionals came to assess him and administer additional pain medication.

He would die at home within four days of going into medical distress, and less than 24 hours after his doctors, Canuck Place and Victoria Hospice met to create a palliative care plan for him, according to his parents.

A year and a half later, Nash and Danesh are still mourning their son, but ready to talk about their fear that nothing has changed in pediatric palliative care — and more broadly in care for kids with complex medical needs — since Darwyn died.

“It’s more than our child,” said Nash. Kids whose disabilities and behavioural challenges have a significant impact on their ability to function get less support from services for disabled children because they’re more difficult to handle, she added. “They just tell you, ‘I’m sorry, we can’t.’”

That’s echoed by Grant Charles, an associate professor of social work at the University of British Columbia whose research interests include palliative care and support for marginalized children in B.C.

“We’re talking about a young man with very specific issues that would be outside the norm. He had very high needs, and that speaks to the whole issue in this province for young people with autism and with other issues who are on the edge of both disorders. They get less services than other kids in many ways,” said Charles, who didn’t know Darwyn personally but spoke to his situation generally.

“The kids that should be getting the most focus, that are hardest to provide services to, often get the least.”

We ‘couldn’t get people to come’

On the morning of July 18, 2020, Darwyn had just returned home from a long drive with his dad when his health suddenly took a turn for the worse. His family would later learn he was bleeding internally.

Darwyn wasn’t able to communicate, but it was clear to his parents that he was in great distress.

Nash sat for hours with Darwyn, who lay on the bathroom floor, while Danesh called Canuck Place to ask if someone would come to their house to assess their son and provide more medication to make him comfortable. They were also in contact with Darwyn’s doctors and his nurse.

Mary Ellen Turpel-Lafond, a family friend, said that she called Canuck Place that day to advocate for in-person care for Darwyn. She is critical of the organization for refusing to provide Darwyn in-person support in the first place.

“I was very upset with the poor service they got from Canuck [Place] and thought it was completely unacceptable,” said Turpel-Lafond, who served as B.C.’s Representative for Children and Youth from 2006 to 2016.

“Darwyn was in crisis. And when he really deteriorated, I got the really tearful phone call from them saying, ‘We have no nursing support. Darwyn is in acute physical distress. And we’re here by ourselves. And what do we do? Like, we take him to an emergency room to wait for 18 hours? We’re supposed to have hospice, end-of-life care.’”

Darwyn’s respite nurse was scheduled to see him on July 18, however, in the past Nash and Danesh had asked the nurse not to come when Darwyn had been very ill, as he was that morning. Neither parent remembers if she came that day. But they’re confident no medical assessment was done until July 19.

The next day Darwyn was even worse, and panic set in for his parents. That morning, Canuck Place said during a phone call that a nurse should assess Darwyn and check whether his medications needed adjusting.

But Canuck Place said it wasn’t sending a nurse. And his parents were not taking Darwyn to a hospital emergency room.

A trip to the ER at Royal Jubilee Hospital in Victoria that January, when Darwyn was coughing up blood, had proved pointless. The hours-long wait in the emergency room further distressed him.

“I remember thinking I don’t ever want to bring him back to emergency, because they are there to save your life, and that’s not what he needed,” said Nash, who said she’d taken Darwyn to the hospital to be certain that he wasn’t in pain and to know how much pain medication she could and should give her son.

Darwyn had had a do-not-resuscitate order since 2009, after it became clear that they could not fix his stenosis.

On the morning of July 19, the family called their respite nurse, who agreed to come over to assess Darwyn. But on her way to visit the family, the nurse texted Darwyn’s parents to say her managers said she couldn’t come because she wasn’t an urgent care nurse.

The nurse worked for a company contracted by Nursing Support Services, which is administered by BC Children’s Hospital.

Danesh said that in a phone call soon after, a manager with the company said Darwyn should be cared for by a hospice nurse. The company eventually allowed the nurse to come over after what Danesh described as an “intense” phone call.

In a statement, BC Children’s Hospital would not comment specifically on Darwyn’s case but confirmed that Nursing Support Services is not equipped to provide urgent or palliative care but respite services only.

“For families that use NSS, the family members are primary-care providers. Family members can and do administer medication. NSS co-ordinators work with the parents/guardians, child and other care providers to develop a plan to provide the appropriate nursing support specific to their needs,” the statement read.

Instead, during medical emergencies for palliative patients, families on Vancouver Island like Darywn’s should contact 911 or Victoria Hospice, the statement said.

“If respite nurses and supervisors assist in urgent or palliative situations outside of their scope, where a higher level of assessment and care is needed, it is out of a desire to help,” the statement read.

The family did have morphine and benzodiazepines for Darwyn as part of his regular medication regime. But although the nurse was eventually allowed to assess Darwyn on the morning of July 19, she wasn’t allowed to provide additional medication beyond what was already prescribed.

Adequate pain medication for Darwyn wouldn’t come until later that afternoon, approximately 28 hours after his medical emergency began, when workers from Victoria Hospice arrived at the house. It was the first time they would meet Darwyn.

In the coming days, Victoria Hospice would return with a cooler of painkillers for Darwyn that could be taken hourly. And on July 21, Darwyn’s doctors convened with Canuck Place and Victoria Hospice to establish a care plan for Darwyn.

But Darwyn passed away in his sleep sometime that night, laying in his bed at home next to Nash.

“He had two injections of the medicine that could go hourly, which was supposed to be the most comforting one for him, and then he died,” Danesh said.

Darwyn’s family was left with the trauma of watching him die in distress for over a day before he received any care from medical professionals.

“He was not getting the injections of the faster-acting morphine, he was in deep distress and obviously was dying,” said Danesh, emotion rising in his voice.

“This was a child who was referred to palliative care two-years earlier, lots of time to have a proper system in place for when this occurs. And when the time came, [we] couldn’t get people to come.”

The injuries did not stop once Darwyn passed away. Less than a month later, the family received a form letter from Canuck Place expressing sympathy for the loss of Darwyn.

But Canuck Place also invited the family to “return” to its Lower Mainland locations to reconnect with Darwyn’s caregivers — despite the fact the family had never visited the palliative respite centres, because they were told they couldn’t accommodate Darwyn.

Darwyn’s caregivers contracted through the Ministry of Children and Family Development, many who had known Darwyn for much of his short life, received their own tone-deaf correspondence from the ministry a month after he passed.

“Our office has received notification that D.D. has passed away. Do you have any outstanding invoices, I will be closing this file shortly?” [sic] the emails from MCFD read. Darwyn’s workers contacted the family in tears.

Last fall, the ministry contacted the family to discuss a new hub system for children and youth with support needs — forgetting that Darwyn had died over a year ago. The family and Darwyn’s support workers have received apologies for all these communications, but it’s just part of a larger pattern for them.

“These are all examples of the lack of attention to the individuality of these children,” said Danesh.

‘It is not a perfect system’

Although it operates the only two pediatric palliative respite and hospice centres in B.C. for children up to 19, Canuck Place isn’t a government service, but a registered charity.

Forty per cent of Canuck Place’s funding comes from the Health Ministry, while the rest is covered through fundraising. Canuck Place estimates it serves about 800 children and families a year, with services for children lasting seven years on average, followed by an additional three years of bereavement care on average for families after their children die.

Because of Canucks Place’s reliance on fundraising, UBC’s Charles says it makes sense that it isn’t able to provide in-person care for every child.

“They have limited resources. And that speaks to two issues. They have to make decisions on who’s going to get services. But it also means that the services tend to be Vancouver-centric,” said Charles, who’s working on a research project with Canuck Place regarding how medical residents respond to the death of kids in their care.

Canuck Place declined The Tyee’s interview request for this article, citing Darwyn’s privacy.

But in an emailed statement, Debbie Butt, Canuck Place’s director of communications, marketing and events, said although not all kids are able to stay in their 13 patient beds or eight family suites, all kids needing palliative care in B.C. can be served by the organization.

“Pediatric palliative care is not a location, but a philosophy and suite of care (pain and symptom management, family support, enhanced communication, care co-ordination) throughout the trajectory of a child’s illness, including at end-of-life,” Butt’s email reads.

“It seeks to reduce suffering, improve quality of life and promote comfort for children and their families.”

While Darwyn was rejected for in-person respite and hospice care at Canuck Place, his family did receive services from the charity.

Darwyn had one video session with a psychiatrist he was referred to by Canuck Place, while Nash spoke to a Canuck Place psychologist on the phone twice and made a few calls to their 24-hour nursing line.

Canuck Place also provided prescriptions for Darwyn and made flow charts for his caregivers and school about what to do in case of health emergencies. It would regularly check in with Darwyn’s parents for updates on his condition, mainly by email.

Butt said Canuck Place has served other children with life-threatening conditions and autism or Down syndrome before. And not every family wants to leave home for their child’s palliative or hospice care.

“Many families prefer to stay in their home community when possible, so we support local health-care teams (including Victoria Hospice, Nursing Support Services) — community nurses, physicians, pediatricians and others with specialized expertise so that they can offer direct care in families’ homes,” Butt’s statement read.

“This support to local health-care teams is provided through video-conferencing, in-person team meetings when necessary, and 24-hour-a-day access to expert nursing and physician consultation. It is not a perfect system for families and Canuck Place is committed to continual improvement so that families receive the care they need.”

To their knowledge, Danesh and Nash say the only time Darwyn’s NSS nurse communicated with Canuck Place was the morning of July 19 before she came over.

Turpel-Lafond, who previously represented Darwyn in a settled BC Human Rights case about discrimination he faced in receiving recreational services for kids with disabilities, estimates there are anywhere from 700 to 1,000 children in B.C. with complex needs like Darwyn’s.

“But a lot of public investment and private donations go to places like Canuck [Place], and the fact that they didn’t serve him and wouldn’t serve him, I thought that was completely abhorrent and should have been reviewed fully,” she said.

The Tyee requested an interview with Health Minister Adrian Dix and Children and Family Development Minister Mitzi Dean, but neither were made available.

We also asked Health Ministry staff for a funding breakdown for pediatric versus adult palliative care in B.C.

In a statement, Health Ministry communications staff said it couldn’t break down how much is spent on either because palliative care is spread across many health-care services that are also used for other treatments.

It did say the government provided Canuck Place with $10.4 million in funding in 2021, up from $5.4 million in 2016.

Minister Dean’s office also sent a statement highlighting palliative care support available beyond Canuck Place, specifically the Nursing Support Services’ respite services; the At Home Program’s funding for medical equipment, supplies and respite; and BC Palliative Care Benefits, which helps cover the costs of medical supplies, equipment and drugs for at-home palliative patients of any age.

In the 2021 funding year, the palliative portion of the At Home Program alone cost $227,000 for equipment, therapy, travel and supplies, according to the Children’s Ministry.

Darwyn was supported by the At Home Program, which subsidized his occupational, speech and physical therapies. But these were not palliative services.

Neither Danesh nor Nash recall anyone ever informing them about BC Palliative Care Benefits.

Gaps in the system go beyond palliative care

Dr. Anamaria Richardson, a Vancouver pediatrician who specializes in working with young people with complex disabilities and medical needs, is a big fan of Canuck Place. However, she says there are large gaps in the wider system of care for youth like Darwyn and much needs to change to fill them.

“And not just in palliative care, in every system when we’re dealing with kids who have behavioural challenges. Because the hospital has a hard time managing them, community has a hard time, schools have a hard time, pediatric clinics in the community have a hard time: we, as a system, are set up to not provide adequate care,” she said.

Part of the issue, Richardson says, is the province treats behavioural challenges like autism spectrum disorder as social, not medical, issues.

“Provision of care is under the Children’s Ministry, instead of the Ministry of Health. And so it sets up a very difficult system to manage as a parent when you have one part of your child’s needs being managed by the Children’s Ministry, and the other part being managed by the Ministry of Health. And they don’t communicate,” she said.

The Children’s Ministry acknowledges there are issues in supporting kids and youth with disabilities but says handing off the responsibility to the Health Ministry isn’t the answer.

In a statement, the Children’s Ministry brought up its planned transition from its current Children and Youth with Support Needs government supports for kids with disabilities like Darwyn, to a new community hub system. Individualized financial supports for children will be eliminated.

The province estimates the new system will serve an additional 8,300 children, on top of the roughly 30,000 kids currently served by Children and Youth with Support Needs.

Since the ministry announced the transition in October, families with kids who already have a special needs diagnosis have criticized the new model.

Darwyn’s parents are also critical of the hub model. In a recent column for the Victoria Times Colonist, Nash wrote, “The Ministry of Children and Family Development’s plan to claw back individual funding for children with autism and build ‘hubs’ across British Columbia has been almost universally panned by families, Indigenous leaders, opposition parties, disability groups and the media.”

Nash isn’t defending the current system. She notes Darwyn had fallen through the cracks before he needed palliative care.

For example, before Darwyn’s health began declining they received respite care through the Children’s Ministry, which provided a one weekend-a-month stay at a group home for him.

That ended soon after Nash discovered that Darwyn had refused to drink or use the toilet for 12 hours at the group home and was left to sit in his soiled clothes. The worker assigned to him hadn’t read his file and therefore did not know the only way to get Darwyn to drink his milk was by reading him Chicka Chicka 1,2,3.

“I don’t want other parents to be told they can’t get help,” said Nash. While the current system of care for kids with autism isn’t perfect, she said, individualized funding allows families the autonomy to choose which service providers they want to work with their children and when.

Providing what Darwyn was denied

When it comes to improving pediatric palliative care in B.C., Representative for Children and Youth Jennifer Charlesworth wants to see palliative respite and hospice beds available outside the Lower Mainland and better support for care at home, if that’s what families want.

“The most important thing... is listening to the parents and really understanding what they know about their child, what works, what doesn’t work, what makes them feel safe, what makes them feel supported, the kinds of ways in which they respond to pain,” she said.

“Lifting up the parents and listening to them, I think, is absolutely critical. Because any kind of end-of-life care should be designed around the needs of the individual.”

Glen Davies, director of the ABLE Development Clinic Inc. for kids and youth with mental health problems and developmental disabilities, says that when Canuck Place comes across a child whose needs it can’t meet, that should spur them to action.

“You can’t close the door at Canuck Place and think some other program’s going to step up. It won’t,” he said. “My feeling is we’re obliged to serve everyone, everyone belongs: they should belong in life, and they certainly should belong in death.”

Davies would like to see Canuck Place contract professionals like behaviour consultants who are responsible for “the lion’s share” of work with kids with autism, to help them provide supports when kids like Darwyn come along.

UBC’s Charles wants Canuck Place and the B.C. government to collect data on how many children are rejected for any of their palliative and hospice services and why.

“And then we start to break it down after that. Where are these young people from? What kind of disorders and illnesses do they have? What kind of conditions? Are we seeing differences in racialized populations or not?” he said, adding the province should be concerned about these gaps.

“If you imagine a young person dying at home, in pain or without proper services, imagine that stress parents would be going under not just because their child is dying, but how they’re dying. Those are things that should not be happening in society as rich as B.C.”

If Darwyn was still alive today, his parents wouldn’t be talking to the media about the issues they faced getting adequate services for him. Caring for Darwyn was a 24-7 responsibility, and they wouldn’t have the time or energy to do so, they said.

“What has to change is a system has to double down on recognizing difference and an individualized response that is at the heart of therapy, at the heart of care, at the heart of loving and respecting the children,” Danesh said.

“It’s exactly what was denied with Darwyn.”  [Tyee]

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