The Partnership report sheds new light on the value of palliative care, and how it can enhance the quality of life for patients and their caregivers. Many studies demonstrate that introducing the palliative approach as part of a comprehensive treatment program has measurable benefits for patients. It is linked with better symptom control, reduced anxiety and pain, and more support for a patient’s social, emotional, and spiritual needs. It can also lead to fewer unplanned trips to the emergency ward, and shorter hospital stays.
Some key recommendations from the Partnership report include:
• Cancer patients who could benefit from palliative care should be identified, assessed and referred earlier in their treatment program.
• All Canadians with cancer should get the best possible palliative care when they need it, and in the place of their choice.
• Community-based supports should be available to allow patients to spend their final days in their preferred setting.
“There are strong studies that show early integration of palliative care improves peoples’ quality of life, and their satisfaction with care,” says Dr. Deborah Dudgeon, a senior scientific leader at the Partnership. “Unfortunately, what is happening now is that it is often only in the last few weeks of life that people’s palliative needs are being identified and addressed. We are selling people short when we see palliative care only as end-of-life care.”
How we view palliative care in Canada has changed substantially from its roots in the 1960s hospice movement. More than half a century ago, Dame Cicely Saunders developed a holistic approach to pain management to ease the suffering of her dying patients in London, England. She introduced the idea that pain was not just physical, but also social, psychological and spiritual.
Today, the definition of palliative care has expanded and evolved. With studies showing the benefits of a palliative approach, it is being introduced earlier in the course of an illness in conjunction with other treatments. Palliative care has changed to become a supportive service for those living with serious illness, as well as those in the last stages of terminal illness.
A nurse for more than 25 years, Dr. Kimberley Widger spent the first 15 years of her career working mostly with children who had cancer in hospitals across Canada and the United States. She has seen how early integration can improve quality of life and ease the suffering of young patients and their families.
“Palliative care is not about death. It is about living well in the face of whatever illness you have,” Dr. Widger says. “It is focused on making sure you live life to the fullest in the midst of receiving treatments that may be aimed at curing the illness or extending life for as long as possible.”
Since completing her doctoral studies, Dr. Widger has conducted research on pediatric palliative care both at Toronto’s Hospital for Sick Children and across the country, and teaches nursing at the University of Toronto. Over the years, she has seen a growth in specialized palliative care teams across the country. There remains, however, a startling gap in access for young patients. Her studies have found that just one in five children who might benefit has access to specialized palliative care. In the case of adults, the figure is closer to one in two.
“Kids are lagging behind,” Dr. Widger observes. “Looking at programs across the country, referrals were very late. Children who live in lower-income and rural areas are also much less likely to get specialized palliative care. We live in a country that values equal health care for all. So if there is a bias in who gets palliative care and who doesn’t, that is a big concern.”
As president of the Canadian Society of Palliative Care Physicians, Dr. David Henderson knows there are gaps in the system that will not be closed overnight. He notes efforts to improve access to palliative care, especially outside main city centres, are underway. New certifications and training programs are being launched to provide health professionals with additional expertise in palliative care. There are also initiatives to encourage a broader understanding of palliative care within the health care system.
“Canada is a huge country and very rural in so many places, and so the reality is you are not going to have that full team everywhere,” Dr. Henderson says. “The key is to have access to the type of care as much as possible, and if you get really rural whoever is there knows how to contact the care team for advice.”
The authors of Palliative and End-of-Life Care note that the data available in Canada focus more on end-of-life care, whereas what is needed are data that also focus on palliative care, what is the level of symptom burden, and do patients receive palliative care when they need it and where they live. They highlight the importance of developing a national strategy for data collection, to ease inequities in the system.
Dr. Henderson adds that palliative care is best delivered by an interdisciplinary team that can expand or reduce in size depending on family and patient needs over time. These teams bring together family doctors, home care nurses and spiritual care providers with palliative care specialists such as doctors and social workers.
Health care providers have seen how palliative care can enhance the quality of life for Canadians living with a serious illness. The plan is that, in the years to come, more family physicians and oncologists on the front lines will come to understand and value its worth for patients and their families.
This story was created by Content Works, Postmedia’s commercial content division, on behalf of The Canadian Partnership Against Cancer.
Ontario relaxes rules on supports for people with disabilities
Effective Friday, the government is loosening some of the stringent rules governing the Ontario Disability Support Program (ODSP) and Ontario Works (OW). The two are the primary social support systems for disabled residents, although Ontario Works assists non-disabled residents as well.
One of the most notable changes significantly relaxes the rules concerning how much money recipients are allowed to have as assets or savings before having their benefits clawed back.
Singles receiving ODSP will see their asset limits jump from $5,000 to $40,000, while limits for couples will climb from $7,500 to $50,000.
Individuals using Ontario Works will see those limits quadruple from $2,500 to $10,000, while couples’ limits triple from $5,000 to $15,000.
The government is also increasing the limits on how much ODSP or OW recipients can receive in a year as cash gifts.
Among other changes going into effect is a two per cent increase in monthly social assistance benefits for both programs.
Program users and advocates hailed the changes as definite progress for a system they say had long lagged behind the needs of those who relied on it. But they said the changes still fall short of what’s needed.
In particular, they cited the small increase to social assistance benefits.
Individuals on ODSP, for instance, receive just $1,151 per month, including a maximum shelter allowance of $489. The total monthly income for couples on ODSP is currently set at $1,688.
Kyle Vose, chair of the ODSP Action Coalition, said the changes that took effect Friday represent a necessary and welcome first step to overhauling the program.
“We are grateful for what we’re getting and for the changes that are being made,” said Vose, who cited the increase to asset limits and cash gifts as among the most exciting of the changes.
Those were long-standing sore points within the community, he said.
Ron Malis, a financial advisor focusing on people with disabilities, agreed.
With the previous limits, if a social assistance recipient were to receive an inheritance that would put them over those low thresholds, they would have to isolate the money in a registered disability savings plan or other exempt asset in order to keep receiving monthly aid, Malis explained.
Going over the limit, he said, could result in short or long-term suspension of benefits.
If people wanted to access some of those funds for reasons not related to their disability, they would then run afoul of another set of rules — those governing cash gifts and voluntary payments.
Under the old system, both ODSP and OW recipients were barred from receiving any cash gifts greater than $6,000 over a 12-month period. Malis said this would include withdrawals from trusts or other exempted savings vehicles.
The new rules are raising the cash gift limit for both groups to $10,000. But Malis said the change is not in line with the more substantial increases to asset limits.
“You increase the size of the water barrel, but you do not allow people to open the tap much more than is currently possible today,” Malis said. “It makes things so complex for people who are struggling.”
Still, Malis praised the measures as significant progress, though he argued the Ontario government could have followed the lead of provinces such as British Columbia. Asset limits there were recently raised to $100,000 without limits on cash gifts.
Graeme Dempster, a spokesman from the Ministry of Community and Social Services, said Ontario is looking to B.C.’s approach to see if it’s an appropriate blueprint for future changes.
“We do not know yet how that affected clients or if that is the appropriate amount to which the limit should be increased,” he said. “This policy change in British Columbia gives us an opportunity to see how results there can inform future changes to ODSP, which we are always looking for ways to improve.”
Dempster said the ministry recognizes the need to “fundamentally change social assistance.” A reform group is slated to release recommendations on the issue this fall.
At least one group is calling for more drastic improvements than those that went into effect Friday.
The Ontario Coalition Against Poverty called the two per cent boost to monthly payments “measly” and said it falls well short of what’s needed, particularly when contrasted with the roughly $1,900 people with disabilities could expect to receive under Ontario’s basic income pilot program.
Other changes taking effect are modest increases for ODSP recipients living in remote communities, relaxed ajudication rules for people re-entering either ODSP or OW, and the addition of batteries and mobility device repairs to the list of items covered under the ODSP health benefits plan.
Three Ontario nursing homes ordered to stop new admissions because of substandard care
The crackdown on three Ontario nursing homes came this week after the Ministry of Health and Long-Term Care ordered each to “cease admissions.”
Jane Meadus, a staff lawyer at Toronto’s Advocacy Centre for the Elderly legal clinic, says new legislation likely won’t become law until early 2018 (EMMA MCINTOSH / TORONTO STAR) | ORDER THIS PHOTO
By MOIRA WELSHInvestigative News reporter
Wed., Oct. 4, 2017
Three troubled Ontario nursing homes — including a Mississauga home — have been ordered to stop accepting new residents due to substandard care.
The crackdown came this week after the Ministry of Health and Long-Term Care ordered each to “cease admissions,” meaning no new residents are allowed to move into the homes.
The order affects two facilities operated by the Sharon Village Care Homes chain, Tyndall Nursing Home in Mississauga and Earls Court Long Term Care in London, along with a home from the Caressant Care chain in Fergus. Both companies sent written statements to the Star, saying they will work with the ministry to resolve the problems.
The cease admissions orders are not common. Of Ontario’s 630 long-term care homes, roughly five a year are stopped from accepting new residents.
In Hoskin’s Oct. 3 letter to Schlegel, he called the results of the recent ministry inspection of Tyndall and Earls Court are “deeply concerning.”
The ministry has “determined that there is sufficient risk of harm to the residents’ health or well-being to warrant a Cease of Admissions,” Hoskins wrote.
He highlighted problems at the London home, Earls Court, saying ministry inspectors found the staffing plan does not meet the residents’ care needs. “As a result, residents did not receive the care required,” Hoskins wrote.
Proper staffing of Ontario long-term care homes in general has long been a complaint among workers, families and the residents who suffer from lack of care.
Tyndall nursing home, located on Eglinton Ave. E. and Dixie Rd., had its annual inspection last January. The public report showed that inspectors spent 13 days in the home and found 51 violations, including problems with toileting, food, the use of restraints and communication with residents.
Earls Court in London had a “cease admissions” order in 2016, which Hoskins cited in his letter to Schlegel. In its most recent inspection, posted online, the ministry found 20 violations. Caressant Care Fergus had 14 violations in its most recent public inspection report.
The minister’s letter to Caressant Care president James Lavelle noted inspectors found “repeated” examples of resident neglect and a lack of cleanliness in the home and its furniture, but did not provide specific details.
Hoskins also said the home had not complied with previous ministry orders related to managing residents with “responsive behaviours” and the prevention of falls.
In both letters to Caressant Care and Sharon Village, Hoskin said, “As the president of a corporation that owns places that residents call home, you are entrusted with an enormous responsibility to provide high quality, dignified care to our cherished elderly family members, and our most valuable friends and neighbours,” he wrote.
In a written statement emailed to the Star, Caressant Care said its management team is “working closely with the ministry to address certain compliance deficiencies. Our first priority is to provide a high level of care to our residents.”
A statement from Schlegel, of Sharon Village Homes, said the ministry has “temporarily ceased” admissions “in order that we can rectify some areas of non-compliance. We support the Ministry of Health and Long-Term Care, in their efforts to ensure the public of high quality care in all Long-Term Care homes in the province.”
These orders were filed a few days after the government introduced legislation that, if passed, would create tougher enforcement against nursing homes. The legislation would include hefty fines for corporations, ranging from $200,000 for first time offence and $500,000 for subsequent offences.
It is currently in first reading and, if passed, likely won’t become law until early 2018, said Jane Meadus, a lawyer with the Advocacy Centre for the Elderly.
Unless the Strengthening Quality and Accountability for Patients Act becomes law, the “cease admissions” is one of the ministry’s best weapons, said Meadus.
“Clearly, these homes are not able to clean up their act,” Meadus said. “The ministry has no choice but to say if you can’t meet the requirements then we can’t let you accept new residents.”
She said cease admissions orders are considered serious action taken after repeated violations of provincial care regulations, because fewer residents can mean ministry funding cuts for the affected homes. It also impacts Ontario’s long waiting list, removing beds for residents who need a place to live.
“I think that with all the problems we are seeing in the media with long term care homes, the ministry if finally getting the message,” Meadus said.
In a statement to the Star about the ministry action, Hoskins said, “. . . it is completely unacceptable that these operators are not meeting the province’s standards. The distressing practice of failing to meet provincial standards will not be accepted in Ontario.”
Dementia study gives motivation to address hearing loss
We should gently but firmly push for others to use aids if they need them. Their cognitive health may depend on it.
By JUDITH TIMSONCurrent affairs
I am fascinated by a new study in the medical journal The Lancet that shows that if you prevent or manage age-related hearing loss, you may decrease your chance of getting dementia.
Dementia, the Lancet study reminds us, is not an “inevitable consequence of aging.” But for many of us, hearing loss sure is.
The Lancet’s commission on dementia came up with nine “potentially modifiable health and lifestyle factors” that might help prevent dementia.
Hearing loss is labelled the second most important factor, after good childhood education.
Why is this important?
Many of us have cared for beloved elders, some of whom have stubbornly resisted the necessity of hearing devices — “I can hear just fine, dear” — and yet these elders can, as a result of perfectly normal age-related hearing loss, unnecessarily slip into social isolation and cognitive distress.
Not all problems can be addressed as readily as hearing loss. We should gently but firmly push harder for them to use hearing aids if they need them. Their cognitive health may depend on it.
Here’s another key reason the hearing loss/dementia connection is important: We baby boomers are just coming up on our own not-so-golden “I’m sorry, what did you say?” years, in which words that were once clear during conversations, especially in crowded rooms, are now muffled.
For some of us, noisy restaurants have become unbearable. You want to see cranky, try four boomers, a bottle of fruity rosé and multiple fruitless requests to a smirking young waiter to please — please — just turn down the damn music. Even the waiter gets cranky.
Paradoxically, the volume on our own radios and other listening devices can sometimes rival the noise level of that scary “Amber Alert ” notification.
I’ve been scolded by my millennial adult children for how loud my car radio sounds, as if I am jazzing myself with Kendrick Lamar instead of sedately listening to CBC afternoon show Here and Now host Gill Deacon cracking a few jokes. (Her jokes are pretty good.)
I may have had an unfortunate head start on the erosion of my once-acute hearing after suffering a concussion two years ago.
All I know is that at a recent crowded and glitzy media event, where the champagne after party was held in a hotel antechamber, the main sound I heard was that of buzzing bees.
“Boy some people were really drunk at that event,” a friend told me later. I wouldn’t know. All I heard was those damn bees.
That’s all the bad news, folks.
The good news is there’s never been a cooler time for aging boomers to wear a hearing device. Think Bluetooth! Think every young person you know prancing down the street with a listening device in their ear. They seem cool, so why can’t we?
One of the most glamorous boomer women in Canada uses an auditory device. Karen Kain, 66, former prima ballerina, and now artistic director of the National Ballet of Canada, has for the past few years, worn a device in one ear to correct a heredity condition. Now, she says, “I don’t have to strain at all to hear conversations.”
A music producer I know in his 60s who doesn’t want his name used (professional discretion) says for a while he was “too freaked out” about his hearing loss to even get tested. When he finally did, “it confirmed my fears.” He decided to give hearing aids a go and “it was like a blanket had been lifted. I sort of wish I had done it sooner.”
With sleek and tech forward (and yes, sometimes expensive) devices, boomers are getting what they want, says Rex Banks, Director of Audiology for the Canadian Hearing Society.
“We are slowly being able to understand what the baby boomers want from hearing and health care. Our clients are searching for convenience, value in pricing, and a high level of expertise. Certainly the new style of hearing aids, and their compatibility with Bluetooth technology, are a match for the diverse and active lifestyle they want to live.”
The Canadian Hearing Society confirms that aging is the No. 1 cause of hearing loss and “the incidence of hearing loss is poised to climb dramatically as our population ages. (The number of adults aged 65 and over in Ontario is projected to be 4.1 million, or 23.4 per cent of the population, by 2036.)
Stats show almost 46 per cent of people aged 45 to 87 will have hearing loss. That’s a lot of irritable restaurant diners asking for the music to be turned down because they can’t distinguish the conversation from the ambient noise.
Aging gracefully always sounds a lot easier than it is. We are still an anti-aging society. My generation has gone to remarkable lengths to look young, feel young and even think young.
But you can’t project vibrancy, connection and glowing good health if your response to someone you meet socially is “What did you say?”
My deepest fear is that someone will confess something sad to me in a crowded noisy room — say losing a job — and just taking a guess, I will respond “Good for you!”
Now that we know that managing any hearing loss may also help stave off dementia, why wouldn’t we be proactive and get help?
I am almost looking forward to wearing a wire.
Judith Timson writes weekly about cultural, social and political issues. You can reach her at firstname.lastname@example.org and follow her on Twitter @judithtimson
U.S. drug maker ordered to slash prices in Canada, pay back millions
The maker of the one of the world’s most expensive drugs has been ordered to slash the price of the medication in Canada and pay back millions of dollars in revenue that the country’s drug-pricing regulator has deemed “excessive.”
In a landmark decision released Wednesday, a panel of the Patented Medicine Prices Review Board (PMPRB) ruled that Connecticut-based Alexion Pharmaceuticals Inc. charged more for a rare-disease treatment called Soliris than Canadian law allows.
The decision followed a rare public hearing earlier this year on allegations of excessive pricing of a drug in Canada.
The hearing also marked the first time that some provincial health ministries and the private health-insurance industry intervened at a PMPRB panel hearing, a sign of growing alarm about the eye-popping prices of rare-disease drugs.
Alexion fought the regulator, saying it had not raised the price of Soliris since the drug debuted in Canada in 2009 at a level the board considered acceptable for a breakthrough drug with no competitors.
The only thing that changed in the ensuing years was the foreign exchange rate, Alexion argued.
The company vowed to seek a judicial review of the ruling.
“The PMPRB Panel wants to penalize Alexion for changes to currency exchange rates, which are beyond our control, and seeks to apply a newly-invented pricing structure that is not supported by applicable law,” Daniel Palmqvist, general manager of Alexion Pharmaceuticals Canada, said by e-mail.
“If upheld, the Panel’s decision will have serious implications for future innovations and investments in the development and availability of therapies for Canadian patients with devastating rare and ultra-rare diseases.”
Soliris is a medication that treats paroxysmal nocturnal hemoglobinuria (PNH) and atypical hemolytic uremic syndrome (aHUS,) a pair of chronic and life-threatening diseases that affect only a few hundred Canadians.
Soliris can cost as much as $500,000 dollars a year, depending on a patient’s condition and weight.
The regulator had alleged that, beginning in 2012, Alexion started selling Soliris at the highest price among the seven countries against which the board benchmarks prices, even the United States, which generally has the highest drug prices in the world.
In its 75-page decision, the hearing panel found that Alexion’s prices broke the rules. The panel ordered Alexion to immediately lower the price of Soliris to no higher than the lowest price among the seven comparator countries.
The panel also ordered Alexion to pay back the excessive revenue in an amount that has yet to be determined.
The money would go to the federal government.
Ontario therapeutic riding centre brings smiles to children and youth with disabilities
Lesley Ridout-Gauer got her first horse when she was 12. She trained in England with the British Horse Society and brought the knowledge of quality horse care back to Canada.
“My horses are everything to me,” said Ridout-Gauer.
Her dream was to help people with physical or developmental disabilities achieve personal growth through riding. That dream became a reality more than 20 years ago when she founded Windrush Stable.
“I have always loved working with people with disabilities. My father was a principal of a vocational school – I think it was just in my blood.”
Riding a horse is quite beneficial for someone with special needs, according to Ridout-Gauer.
“(The horses) can emotionally bring them out of their shell. They can make (the participants) feel important because they don’t judge. It doesn’t matter what you look like, what you can or cannot do – they just love you the way you are,” said Ridout-Gauer.
“Physically there’s a whole lot they can do as far as core strengthening and helping your balance – it’s multifaceted.”
The centre, located in Campbellville, Ont., has strict standards when it comes to safety. The stable offers private lessons with only experienced instructors, focusing exclusively on one rider per lesson.
“They understand both horses and they understand people with special needs … it’s that combination that makes Windrush so special,” said Barry Citren, the father of Daniel Citren, a student at the centre.