A broken system
How the system works, what is missing, and why you need deep pockets
Today the Province begins a special seven-part series examining what you need to know to navigate the complex system set up to serve B.C.’s growing population of seniors.
When Marian Bucci’s mother Brenda was diagnosed with terminal lung cancer 18 months ago, the family decided to keep her in the private Langley retirement home where she’d been living with dementia for several years.
The expensive plan required the help of private, round-the-clock care aides, but it honoured Brenda’s wish to spend her final days at home, not in a hospital palliative care unit.
“This home was her comfort zone … It’s like a cruise ship on land,” said Bucci. “But if the (residents) have come to a point where they can’t take care of themselves — they need help with their daily hygiene or getting medication — that is where (care aides) come into play."
The combined cost for the non-government-subsidized retirement home and the aides totalled $25,000 a month, which was paid for out of Brenda’s savings. “It’s extraordinary,” Bucci said of the bills, which would be out of reach for many British Columbians.
Brenda died early Thursday at the age of 89. Her care plan had worked well until Monday, when her pain suddenly intensified, her grieving daughter said.
Nurses from a palliative community team had been visiting Brenda regularly, but when Bucci phoned them to ask that her mother’s pain medication be increased, she was told they checked with a doctor and could not help because her mother was not technically a palliative patient. They suggested her mother be taken to hospital in an ambulance, but she was in too much pain to be moved.
It was upsetting and confusing for the distraught family.
“No one should ever, at that stage — I just didn’t need that. I was emotional,” said Bucci, a retired registered nurse. "We took for granted that we’d have access to someone to manage her pain.”
With the help of a pharmacist, the family got Brenda through Monday night and eventually got the help they needed from the palliative-care system on Tuesday.
Bucci and her sisters have faced many decisions and dilemmas regarding their mother’s care — as have thousands of other families — as they tried to navigate B.C.'s complicated, expensive and underfunded seniors care system.
It’s a system that will become even more over-burdened and difficult to access as the province’s population aged 65 and older is projected to skyrocket from 916,500 this year to more than 1.6 million by 2040, when one out of every four people in B.C. will be a senior.
Right now, 93 per cent of seniors live at home, and only a fraction receive government-funded home care services, according to B.C.'s seniors advocate. If the other independent-living seniors require assistance, they have to pay.
Four per cent of seniors live in residential care, which provides daily assistance for those with complex medical needs. The vast majority of them receive a government subsidy.
The final three per cent are in assisted-living facilities, which vary widely in cost and services. About 20 per cent are subsidized by the government and offer minimum help such as dressing and administering medication, and about two-thirds are private residences where seniors arrange for their own nursing care, such as the retirement home where Brenda lived.
Demand for government-subsidized facilities far exceeds supply: As of August 2017, nearly 1,500 people were on waiting lists for residential care — more than one quarter of those taking up valuable hospital beds while waiting. Another 750 people were waiting for assisted-living places, according to the seniors advocate.
People on waiting lists for these types of facilities increasingly rely on the growing number of private care aides, who run errands, prepare meals, help with bathing and more.
“The system that our elders are currently trying to navigate is quite broken," said Leigh-Anne Mitchell, nursing supervisor with Cornerstone Care, a private home care company in Langley.
"We do find that a lot of the adult children of our elders really struggle to access resources for their parents.”
If you have an aging relative who might need care, where should you start given the limitations of the current system? Start early, says Peter Silin, a Vancouver social worker and therapist.
“For a lot of people, we don’t look at something until we need it or until we are in a crisis. So the advice I would give people is always plan ahead,” said Silin, who, since 1996, has been helping families navigate the seniors’ care system through his company Diamond Geriatrics.
There will be both emotional and practical hurdles.
“I talk to people about the emotional aspects of aging, and how you have to do a little bit of a dance as seniors go through getting used to what they may need or may not need, and sometimes with family members it might be talking about their own grief,” he said.
“And it is getting harder and harder to get home care, it’s harder and harder to get into a care facility. The government upped the threshold for those kinds of services and there’s more people needing it."
Among the first things families need to know is whether the B.C. government plans to expand subsidized services and support, so there are more comprehensive and affordable options available.
The year-old NDP government has promised change, announcing $548 million in new money for seniors care over the next three years, in addition to a $500-million boost promised by the previous Liberal government. About 20 per cent of that money will be allocated in the 2018-19 fiscal year, and spending will progressively ramp up by 2021.
Included in this new funding is $280 million from the federal government, earmarked to be spent on helping seniors stay in their homes. The provincial NDP has also made this a top goal, vowing to increase health workers who make house calls and home-support workers.
“Home and community care are going to have to get better,” Health Minister Adrian Dix said in an interview. “We have to provide what most people want, which is the ability to live in their community.”
For those who are already in residential care, about $240 million of the new money will be spent over the next three years to improve their quality of life by increasing to 3.36 the average number of direct care hours they receive each day. This will be a large challenge, as workers at 85 per cent of B.C.'s 293 residential care facilities spend far less time each day — an average of 3.14 hours of direct care — with their residents, the seniors advocate found.
As the wave of aging baby boomers gets larger, capacity at these residential homes will have to grow beyond the current 28,000 beds, Dix said. But he did not provide a target number, saying building more facilities is less of a priority than broadening services to support seniors at home.
STAYING AT HOME — WITH HELP
For Dix’s plan to work, his ministry must start reversing a couple of disturbing trends — in particular the decline in the number of government-funded support hours available to seniors in their homes.
These subsidized hours are offered only after a needs assessment by the local health authority. The cost to the senior is based on a complicated formula using the after-tax income of the senior and any spouse, with adjustments for family size and other factors. For example, a senior with “remaining annual income” of $50,000 would pay about $70 a day for a care aide.
This service, though, can be free for seniors already receiving certain government aid.
The need for more of this government-approved support, which generally includes bathing, dressing and toileting, was identified by Isobel Mackenzie, the B.C. seniors advocate, who found care hours per client have dropped steadily in the past five years.
“The number of care hours people get per day has been declining as the complexity of cases has increased. That’s the opposite of what you expect to see,” she said.
The home support offered might range from a few minutes a week to four or more hours a day, said Karen Baillie, CEO of Menno Place in Abbotsford and president of the board of B.C. Care Providers.
“Their service times can be as little as 15 minutes a visit and that is one of our biggest concerns, you can imagine the rush,” she said. “Setting a minimum of 30 minutes for home visits has been one of our asks from the government. You just can’t rush seniors that way.”
Seniors who want more hours than the limited subsidized system can provide, along with many other people who don’t qualify for government care, have sparked the growth of the private careaide sector.
“A lot of people these days are paying for private home care, even though it is really expensive. There are now probably 50, 60, 70 private home care companies in Vancouver, it’s crazy," said Silin, author of the book Nursing Homes and Assisted Living, The Family’s Guide to Making Decisions and Getting Good Care.
Cornerstone Care offers private care aides in Langley, Abbotsford, Delta, Surrey and White Rock. Their services run the gamut : bathing, shopping, preparing meals, laundry, walking dogs, taking clients to appointments. The average fee is $31 an hour.
A minimum of one hour is required, but Cornerstone also offers a cost-sharing “clustercare” option for four people who live near each other to break the hour into 15-minute visits. Some private companies require a longer minimum commitment, such as two or three hours.
The non-profit society’s client load has steadily risen over the past five years, as seniors are living longer and therefore have increasingly more complex health challenges.
“Sometimes we get families that are just starting to need a little bit of help, so maybe a mother needs a once-a-week shower, and eventually those needs increase,” said Colleen Torwalt, a supervisor and longtime care aide. “We have clients we see four to five times a day, for all their meals and their meds.”
Bucci relied on Cornerstone’s staff to help her mother daily at her retirement home, Renaissance, where she has lived since 2011. Initially she could live independently, but the care aides were hired when her dementia worsened. After the tumour was found on her lung, doctors suggested she move into palliative care.
With Torwalt’s help, the family decided instead to keep Brenda at Renaissance and surround her 24/7 with care aides. There were a few problems to solve: care aides are not permitted to give clients “take-as-required” painkillers, such as hydromorphone, so a system was worked out with Brenda’s doctor and a local pharmacist.
If Brenda had gone to palliative care, her bills would have been far less than $25,000 a month. But, Bucci said, her mother had the money and her quality of life was better at the retirement home.
“She was much more comfortable there, she didn’t get as confused, she recognized it as her home," Bucci said.
It would be easier, she argued, to keep seniors like her mother in homelike settings if the health authority’s community-based palliative-care teams had more resources to visit patients outside the hospital.
“They are so short-staffed. They are not getting the funds that I think they need if you want to keep people out of palliative care areas," she said. "They are the experts that are helping you walk through this crisis.”
Dix, the health minister, agreed that home visits by palliative teams, nurses and other health workers must increase. In addition, he promised to expand day programs, respite care, and a concept called temporary care — a residential setting where seniors can recover from an injury or other health problem before returning home again.
These measures not only keep seniors in their homes, but are cheaper for government than building more residential facilities.
And yet, a historical lack of at-home support has had a ripple-down effect in B.C. People who could live at home or in assisted living facilities are instead taking up desperately needed beds in residential facilities, where the waiting lists to get in are long.
RESIDENTIAL CARE AND ASSISTED LIVING
The average wait to enter residential care varies dramatically depending on where you live — it’s less than three weeks in the Vancouver Coastal region and more than two months in the North, which is generally under-serviced, and on Vancouver Island, where demand is high in popular retirement communities.
“Some people wait an extraordinarily long time for a bed, though generally that is because they have very specific needs,” said Mackenzie, the seniors’ advocate.
Typically, you get sent to the first home with space in your region and must stay there until there is an opening at a place you prefer.
The pressure on existing residential facilities will only get worse. The number of residential care beds — which offer 24-hour medical supervision — went up 1.5 per cent last year, while the population of British Columbians 75 and older rose 3.5 per cent.
All of B.C.'s 28,000 residential care beds are paid for by the government, but about two thirds are run by private companies and faith-based non-profits, the balance are operated by health authorities.
There are differences between these privately and publicly run facilities, MacKenzie said in her recent report. Homes operated by the health authorities provide, on average, more care hours, have higher rates of therapy, have more complex and physically dependent residents, and have fewer problems and fewer substantiated complaints than contracted facilities.
Only four per cent of private operators meet the goal of 3.36 direct care hours, while one third of the health authority-run facilities meet the target. Although both receive their funding from health authorities, private operators receive less money.
Daniel Fontaine, CEO of the B.C. Care Providers Association, has lobbied for increased funding to the private contractors he represents and said they have started to see new money to hire more staff in the last few months.
The number of care hours people get per day has been declining as the complexity of cases has increased. That’s the opposite of what you expect to see. Isobel Mackenzie
Dix said he intends to reach the goal of providing an average of 3.36 care hours a day per resident by 2021, and in order to achieve that funding is now being increased for the private homes.
The biggest challenge to reach this goal will be to find enough new workers to hire. Dix estimates 1,500 new jobs will need to be filled, including 900 care aides and 335 nurses.
Added up, an additional 2.7-million hours of care per year will be needed to ensure that people already living in subsidized residential care facilities are properly looked after, Mackenzie said. This alone would cost about $90 million, and seniors have told her that they want more time from care aides for feeding, toileting and conversations.
CAN YOU AFFORD IT?
Rent at private, independent homes can be thousands of dollars a month. In fact, a recent survey by two financial organizations found 30 per cent of B.C. seniors fear they will run out of money before they die, and 35 per cent worry they won’t be able to pay for long-term care.
The cost of government-subsidized residential care is capped at 80 per cent of the senior’s net income, subject to minimum ($1,130) and maximum ($3,278) monthly rates.
“Absolutely everything is covered, from meals to medications,” Mackenzie said. “For many seniors, the economics are very compelling to enter residential care, even if they could flourish in assisted living.”
The price paid by seniors for government-subsidized assisted living, which provides fewer services, is capped at 70 per cent of their income.
“We should be increasing the number of subsidized units,” said Mackenzie. “There are people in residential care prematurely, who could be in assisted living, but financially they can’t afford three, four or five thousand dollars a month.”
Under the current rules, the number of services in assisted-living — such as bathing or medications — is limited to two from a list of six. Anyone who needs more help must move to residential care, which is a hospital-like setting.
Bill 16 — passed two years ago, but not yet implemented — will give people access to additional services in assisted living, which should help people age in place longer and keep couples together longer, said Baillie, president of the board of B.C. Care Providers.
Allowing people with greater needs and mobility issues to remain in assisted care does come with a cost — for renovations, wheelchair accessibility and equipment for lifting — but offering multiple levels of care in one place is a necessary change, Baillie said.
She runs Abbotsford’s Menno Place, which offers its 700 seniors several different levels of assisted living and residential care, both subsidized and private pay. “We often see couples come in together, but not always for the same level of service,” said Baillie.
At the end of the day, all families can do is some research and then make the best decision given the resources available.
“And remember that things aren’t ideal,” said Silin, the geriatrics expert. “It is not going to be like the way you want to care for mom and dad yourself, or your husband or wife. Unless you have a lot of money to pay for it, you are not going to get exactly what you want.”