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How should we measure quality in home care?


Trevor Cranney gets 60 hours of home care a month. Though he’s happy with the quality of care he’s getting, he doesn’t think it’s enough. “I suffer from ALS, and I’m unable to feed myself, brush my hair or do anything,” says the 42-year-old, who was recently given six to nine months to live. He would like two additional hours of housekeeping help a week to take some of the burden off his family -“my wife is currently working full time, being a mother and my caregiver every other minute,” he says. But he says he’s been told the CCAC doesn’t provide homemaking services, and that he’s at the maximum number of hours. Cranney says he asked to file a complaint but hasn’t been provided with the necessary paperwork, and he’s requested to speak to a manager, but hasn’t gotten a call.

So his family takes care of what the CCAC won’t. “My wife does a lot, and my 16-year-old son does a lot of the heavy lifting – physically lifting me,” he says, adding that it doesn’t seem fair that his son has to take care of his father. “There seems to be more of a drive for cutting back on hours than there is for providing care,” he says.

Gilles Lanteigne, the CEO of the Champlain CCAC where Cranney is receiving care, says his experience is unusual. “We have a very structured process to ensure that any patient or family can make a complaint [or escalate it] … the process works very well for most people,” he says, adding that they track and publicly report on complaints. He says a 60-hour-a-month cap isn’t unusual for a regular case – someone that isn’t receiving palliative care, for example. PSWs may provide homemaking services if there is time, and the CCAC can link clients with homemaking providers, but there is a co-payment for those.


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A study by Statistics Canada released this month revealed many more people like Cranney who felt their needs were being only partially met by home care. It found 15% of the 2.2 million Canadians receiving home care in 2012 said they didn’t get all the care they needed from professionals, friends and family. Those who were under 64 were more likely to report that their needs were only partially met, as well as those with a disability and those getting less than 10 hours of care a week. Another 461,000 Canadians reported they needed care at home but weren’t getting any, with low-income people, immigrants and caregivers more likely to say they were not receiving care, but felt they needed it.

Complicating matters is the fact that patient and caregiver satisfaction surveys are only one way of tracking quality of care. So how do those involved in home care, from the government to providers, track the quality of what they’re offering? And how should client satisfaction get taken into account?

These question are becoming more important as the need for home care services across the country rises. Costs have risen 55% since 2008 to $5.8 billion a year – and the number of people served is also growing, up 51% over the last decade to 2.2 million in 2012. Over 70% of those who use home care have recently been sent home  from hospitals, and the majority are seniors. They’re helped by 8 million caregivers: relatives and friends who are also deeply involved in their care, may have their own health problems, and often face burnout if resources are inadequate.

Ontario’s Community Care Access Centres

In Ontario, 14 Community Care Access Centres coordinated care to more than 530,000 people in 2011/12. They assess patients and decide how much care they need, and then outsource most of the work to private or not-for-profit companies. The process is initiated and monitored by care coordinators – “the quarterback,” says Anne Wojtak, senior director of performance management and accountability at the Toronto Central CCAC. With limited funding, CCACs sometimes have to limit the number of hours patients get, or put them on wait lists. Some CCACs get more money per capita than others due to historical funding inequities, an issue the Ministry of Health and Long-Term Care says it is addressing.

They are also seeing many more people with multiple medical conditions, who have significantly more complex needs. From 2009/10 to 2012/13, the percentage of people with complex needs grew from 37% to 58% of CCAC patients. “We’re in a growth area, so every CCAC has pressure to see more clients, and we are having far higher complexity of clients than we have ever had before,” says Wojtak.

Patient satisfaction & effectiveness assessments

One key way CCACs study their success is through patient and caregiver surveys. Their survey, run by NRC Picker – the same service many hospitals use – has been in place for the past five years. The latest surveyed more than 27,000 patients and caregivers, asking them to rate the CCAC’s services on a five-point scale. More than 93% of respondents said they had a positive experience with CCAC, compared with 91% in 2011. Starting in October, patient and caregiver satisfaction rates will be factored in to which contracts are given to private service providers.

But patient satisfaction surveys only provide part of the picture. Patients may not be knowledgeable enough to judge the quality of their care, or they may be overly positive out of a sense of politeness or fear of potential repercussions. Also, people who are the sickest or have cognitive problems may not answer the surveys. “There are lots of critiques of patient satisfaction surveys,” says Pat Armstrong, a professor of sociology at York University. “They’re not the most reliable way of assessing the extent to which [the system] works for the people who need care.”

Since 2013, Health Quality Ontario has reported on home care, looking at 11 different metrics. It tracks effectiveness measures like incontinence and communication problems, both of which worsened slightly between 2010/11 and 2011/12. For safety, they report on the number of falls (which increased slightly in 2011/12) and pressure ulcers, which also increased slightly. The results are searchable by CCAC and city; soon, they will also be reported on by individual provider.

This April, CCACs began using Quality Improvement Plans that focus on targeted improvements. “CCACs are encouraged to focus on key priority areas in their QIPs, including hospital readmissions, emergency department visits, client experience, wait times and falls, as well as locally identified priorities,” says David Jensen, spokesperson for the Ministry of Health and Long-Term Care, which believes Ontario is “the lead jurisdiction in Canada for public reporting on home care.”

John Hirdes, a professor at the University of Waterloo and chair of the interRAI Network of Canada, a global network that promotes standardized measures of care, agrees. “In many ways Ontario and Canada has been the lead innovator when it comes to information on quality [on home care],” he says. “We’re the first province to publicly report on quality indicators on home care, we’re one of the first provinces to adopt a standardized assessment methodology for home care.”

All CCACs are also required to have a complaints process, though it’s not standardized. Generally patients begin with their care coordinator at the CCAC, and then escalate to a manager. If the complaint isn’t resolved, patients have the right to go to the Ontario Health Services Appeal and Review Board, an independent review panel. Another option is the Long-Term Care Action Line, which helps customers deal with complaints and can send cases to independent complaint facilitators that mediate in disputes. In 2012/13, the review panel received 11 complaints; the action line received 224 complaints in 2013, 212 of which were referred to independent review panels.

Efforts to track quality across Canada

Alberta runs a similar system, where Alberta Health Services contracts out home care to other providers. Its system came under fire last year when Alberta reduced the number of providers, leading to a number of client complaints, including many about home-care aids missing appointments. That inspired a review from The Health Quality Council of Alberta, an organization that operates at arm’s length from the government. Released in April, it covered Alberta’s continuing health care services, which include home care. The report highlighted the need for more quality control. A variety of methods are used to collect patient safety information, which “greatly impedes effective quality and safety management,” it reads. And it went beyond the province, noting that they didn’t find an example in Canada of a comprehensive quality and safety management program.

“A key finding from our review was that there are tools and mechanisms in place for managing quality and safety in continuing care across Alberta’s healthcare system, however they can be strengthened and applied more consistently,” says Charlene McBrien-Morrison, executive director of the Health Quality Council of Alberta.

At a country-wide level, a 2013 study by the Canadian Patient Safety Institute looked at home care’s quality across the country. It focused on outcomes by addressing adverse events caused by health care, and found that 10% to 13% of people with home care suffered from adverse events every year. The two top types were falls and medication-related issues.

They also found that 56% of those were preventable. Contributing factors included inconsistencies in home care planning and delivery; lack of integration of home care teams; processes, equipment and medication that aren’t standardized; and clients and caregivers making poor decisions. The study recommended the use of standardized policies to develop reportable adverse events nationally.

In the meantime, Cranny has essentially given up. A call he made to his MPP went nowhere, and the program that he thinks could help him, self-directed care, has a waiting list longer than the time he has left. “It’s very frustrating,” he says.

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9 comments

  1. Heather Marsh

    This is deplorable! Why, why in Canada is someone suffering??? Why can some CCAC’s authorize 21 hours a week and some have this “60” a month maximum. Should care required not dictate care received? After all, this unfortunate situation is going to result in one of our citizens passing away believing not only did he not get the care he required but also, in CANADA felt he had not mechanism for being heard? HOW HOW does this continue to happen in this Country – There needs to be a complete overhaul of CCAC’s systems and some if not all of the big wage earners at CCAC need to be accountable! This is Canada! not a third world country. We all pay taxes and pay to ensure if we need it, services will be there for us. Where is this MPP and why isn’t he or she being held responsible for not getting back to this gentleman! SHAME ON ONTARIANS for putting up with this. SHAME!

    • Virginia B.

      I encourage you to take that anger to your MPP, the only people that can hold elected representatives responsible is us. Public and Home Health Care workers operate within budgetary constraints, just like all healh services – if you want more money into Home Health, or more oversight, you need to push for it.

      Write letters, send emails, make your voice heard.

  2. Doreen Ouellet

    CCAC is rule bound, not rule guided. Regardless of how many times an organization states they are patient centered if a person with ALS, where there is no treatment available, and the mean survival is 12-18 months can not receive the help they need, one is left to wonder, who can?

    While there is much talk about the CCAC providing palliative care services in the last year of life, in reality one can only access palliative care services in the last three months of life and that is complicated. Either the patient has to admit they are dying and nothing more can be done or the CCAC caseworker has to suggest to the doctor that it’s time for the person to “become palliative”. As one can well imagine, it’s not easy for a person to admit that they are going to die and deeply ingrained within the psyche of healthcare professional is this notion that one must never take away a person’s hope. As the late Larry Librach so eloquently observed, what you hope for can change depending on your circumstances. You can hope to survive; you can hope to get better, you can hope for a pain free death or not be a burden to your family. It seems to me that Mr. Cranny is hoping that he can live the remainder of his life with some dignity, not begging for help.

    My dear friend Selwyn died a year ago of ALS. I experienced first hand what he and his wife went through. It’s only because I know the system, and because of a caring palliative care doctor that he was able to get a bed in palliative care on a Sunday of a long weekend. But first he had to suffer sitting in a chair for 48 hrs because he lost the power in his legs suddenly and his wife couldn’t move him. His wife was told she could only get a hospital bed delivered through CCAC in 72 hours. That would mean that Sel, who was awake and with it would have to stay in the chair for 5 days. Why didn’t she call 911 and go to the hospital you may ask. Well the last 3 times Sel went to the ER, his wife couldn’t find anyone to help her get him on a bedpan.

    So she got on the phone and found a place that rented beds and had it delivered. Sel was plopped in the middle of the bed in the middle of the living room. CCAC was called again to ask if someone could come and help her pull him up in the bed, he had slid down and lay crumpled at the bottom. There was no one available to come. His regular caseworker was off. Never mind how they dealt with his need to use the toilet. Could Sel have stayed home longer? Probably, but not with todays current system where PSW’s provide all the care and caseworkers see their patients every 6 months. Sel was capable to the end and could direct his own care. He also created an Advance Care Plan, based on his values and beliefs. His family knew what his future care wishes were; he had sought out a palliative care doctor before he was totally bedridden who had agreed to provide his end of life care.

    Has anyone approached Mr. Cranny about his future healthcare wishes?
    I’m sorry Mr. Cranny for all your troubles. This is not a road you should have to travel alone.

    I must comment on the issue of quality and measurement. Of course it’s important to measure the number of bedsores that occur in a given timeframe. However, I’d like to suggest that it might be more useful to measure the length of time that a person has to wait for a bedpan, or to have a dirty diaper changed, or how often a bed-ridden patient is put in a chair and how long they are forced to stay in the chair. Often called standards of care but not always adhered to.

    We ask through the patient satisfaction surveys how long a person had to wait for a bedpan, and whether or not their physical needs were met, and they tell us. We just don’t believe that it matters enough. We might be better to take a more preventative approach and focus on care delivery benchmarks at a micro level, measuring care delivery that prevents the bedsores from occurring in the first place. Still measure bedsores as a outcome, but enforce standards of care that lead to the prevention of bedsores as well.

  3. Heather Marsh

    Simple question – what value-added service does CCAC provide to the people of Ontario?

  4. Heather Marsh

    An excerpt from CCAC’s own legislative mandate says it all:
    NOTE: Eligible home and community clients are entitled to receive home and
    community services in accordance with their needs and preferences.

    So why are we not holding these “tax paid employees” to the standards set for them?

    • Ava Ramons

      We are trying – the problem is many people think we co-ordinate care: We do nothing of the sort. We try to manage a care plan. 90% of us are RNs and have the clinical knowledge to say – it’s not going to work! They need more support – wether it be someone to help bath/week or QID services for ADL support. And let’s talk about family – we are being told family should “step up to the plate”. Yes, sure. I think family should be helping in the care plans that we are foreseeing, but they must also remain family members. They need supports as well. The standards set for “tax paid employees”: I try, I advocate, I assess many pt.’s in a hospital setting every day. My hands are now tied because we have no more funding, no more resources. We are trying our best to advocate for our frail, elderly, sick, weak, mentally frail, etc. but even our pleads fall on deaf ears. My assessment, and clinical judgment mean nothing – because I have to use the governments “rating” system to see how “important” you are to service. So now, they are talking job cuts on our end! Sure – cut our jobs and have less people advocating for our population. Maybe it’s the first step ….. {{ Very frustrated care co-ordinator}}

  5. Bob Parke

    In Ontario how would you measure the quality of home care as there is such variance of services from area to area. Even in urban areas service can be quite different from one side of the street to another.

    Given that the majority of health care is in the community we need to challenge politicians and policy makers to create a more just and fair system of care which is not contingent on a person’s postal code but need. Federally the Canada Health Act needs to address home care and provincial standards of home care needs to create more uniformity of what can be provided. I often think of the challenges staff in hospitals face in doing transitions in care planning when they are working with patients and their families/caregivers. It is not uncommon for two fairly similar patients not receive different levels of service dependent on where they live. This inequitity of service is often heard in the conversations of patients and families when one will say we getting a comprehensive plan of services with no waiting list and another complaining that they are on a wait list and have fewer services.

    Comprehensive, equitable home care services can do a lot to keep people out of hospitals and institutional care for as long as possible. In a time of cost containment, concerns about infectious diseases equitable home care can be a valuable partner in the care of people. Comprehensive home care can also help informal caregivers usually spouses, daughters and daughter-in-laws, with the burden of care they experience.

  6. Kathy Badali

    Are unfulfilled Home Care orders (e.g., personal caregiving hours that have been approved by the CCAC to a client who is always available in the setting in which care is to be provided, but the hours are consistently not provided by the worker assigned by the contracted vendor) considered reportable incidents by CCAC’s as part of vendor performance evaluation? Does the CCAC pay Home Care vendors for unfulfilled service? How does this affect ongoing procurement decisions?

    How does a CCAC evaluate the quality of cluster care (typical model used for clients in assisted living settings) at the level of the individual client? This model may be useful for assisted living settings (i.e., provides additional staffing support for morning and evening care) and cost effective to the CCAC/government (i.e., more clients can be seen within a given time period and likely at a lower payment scale as compared to 1:1 care). From personal experience, the cluster care model does not always work well for individual recipients of care because the competencies of workers assigned by the Home Care vendor are not matched to the client’s needs and requirements; workers across shifts are not appropriately and adequately informed about the individual client’s care plan leading to the lack of continuity and inconsistency in care; and, there does not seem to be a strong accountability, oversight/management and quality evaluation mechanism in place with the Home Care vendor to ensure that the service recipient is receiving all care due (hours approved) as outlined by the standards and vendor protocols set by the CCAC.

  7. Nick

    I HAVE TO KEEP LEAVING WORK TO HELP MY DISABLED WIFE OR SOMETIMES TAKE FULL DAYS OFF NOW THE MAX CCAC CAN GIVE IS TEN HOURS A WEEK
    …………….MY QUESTION IS THERE IS NOT LAW IN THE LABOUR CODES TO PROTECT WORKER IN THIS SITUATION SO WHAT DOSE ONE DO IVE LOST TWO GOOD JOBS BECUSE OF THIS AND THE THIRD ONE ISNT TO FAR BEHIND………SO ……SO WHATS THE SOLUTION CONCERNING THIS……JUST KEEP GOING THOUGH JOBS……LET MY WIFE SIT ALL DAY…….OR CCAC GIVE HER MORE HOURS …..MY BOSS IS READY TO FIRER ME FOR LEAVING TO HELP HER

    NICK MCANDRY
    4164550474

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