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Also a nursing teacher, Cleveland has brought her compassion and care to clients in hospitals, hospices and private homes. "Home is always best for palliative care, but these days, that's not always possible," said Cleveland. "The two vital pieces of this picture are accessibility and how well the care is being provided. Ontario has large areas where palliative care is not accessible." Statistics from the Canadian Hospice Palliative Care Association (CHPCA) estimate less than 30 per cent of Canadians receive any palliative or end-of-life care - and even that depends on where you live.

"There's definitely not enough money, not enough staff and there's not enough time," said Cleveland. "The staff has to fly in and fly out of homes, instead of having the time to sit and talk. "Often, the care that a person needs is just somebody listening to them." Ontario's nursing leaders know accessibility is the big tipping point for palliative care. But they also believe the Supreme Court of Canada's decision to lift the ban on physician-assisted suicide will focus more attention on all end-of-life services.

We hope the public dialogue over the Supreme Court decision will push up funding for palliative care, if we want top notch, universally accessible palliative care in every corner of this province and country. And that's not the case at present," said Dr. Doris Grinspun, executive director of the Registered Nurses' Association of Ontario. Certainly, the demand for end-of-life care in Ontario is growing fast. Within 20 years, people over 65 will double to four million, making up almost a quarter of this province's population. Many can expect to live longer, even with advanced illnesses. "There is a risk in the focus of palliative care that we will forget that the elderly, dying of natural causes, still need all of the comfort and attention of palliative care as anyone dying of life-altering illness such as cancer," cautions Dianne Martin, executive director of the Registered Practical Nurses' Association of Ontario (RPNAO).

Today, Ontario provides palliative care through a maze of sources: hospitals; 14 Local Health Integration Networks (LHINs); community care access centres; 32 hospices; and 60 other agencies providing companionship visits. Among the fortunate ones served by palliative care is 74-year-old retired firefighter Stuart Ross, who is trying to cope with the death of his wife of 46 years. Ross is a patient of the Trent Hills Family Health Team in Campbellford, southeast of Peterborough, Ont., and is able to draw on the services of Cleveland.

Cleveland provided palliative care to his wife, Barbara Ross, in the final weeks of her life at home. Now she gives followup care and support to the widower over a cup of tea at the kitchen table. "I talk to Gwen about the loneliness," says Ross. "She explains to me it can be a normal part of the recovery period. "Sometimes I just need her words of encouragement over something I'm having difficult in handling."

thanks to predictable and escalating funding over the first seven years of the plan

however, there are, unfortunately, pockets of inattention and/or mediocrity as well

Six areas, in fact, were identified by CHA

funding matters; health human resources; pharmacare; wellness, identified as health promotion and illness and disease prevention; continuing care; and leadership at the political, governance and executive levels

The focus of this 10-year plan has been on access. CHA would posit that it is at this juncture, the focus must be on quality and accountability.

safety, effectiveness, efficiency, appropriateness

Canada does an excellent job in providing world-class acute care services, and we should; hospitals and physicians have been the core of our systems for decades. Now is the time to ensure sufficient resources are allocated to other elements of the continuum, including wellness and continuing care.

Home care is one readily available yet underused avenue for delivering health promotion and illness prevention initiatives and programs.

four critically important themes: dignity and respect, support for caregivers, funding and health human resources, and quality of care

Nadine Henningsen, Executive Director, Canadian Home Care Association

Today, an estimated 1.8 million Canadians receive publicly funded home care services annually, at an estimated cost of $5.8 billion. This actually only equates to about 4.3 per cent of our total public health care funding.

There are a number of initiatives within the home care sector that need to be addressed. Establishing a set of harmonized principles across Canada, accelerating the adoption of technology, optimizing health human resources, and integrated service delivery models all merit comment.

great good has come from the 10-year plan

Unfortunately, there were two unintended negative consequences

One was a reduction in chronic care services for the elderly and

a shift in the burden of costs for drugs and medical supplies to individual and families. This was due to early discharge and the fact that often a number of provinces do not cover the drugs and supplies under their publicly funded program.

Stakeholders across Canada generally agreed that the end-of-life expectations within the plan were largely met

How do we go from having a terrific acute care system to having maybe a slightly smaller acute care system but obviously look toward a chronic care system?

Across Canada, an estimated 30 to 50 per cent of ALC patients could and should benefit from home care services and be discharged from the hospital.

Second, adopt a Canadian caregiver strategy.

Third, support accountability and evidence-informed decision making.

The return on investment for every dollar for home care is exponentially enhanced by the in-kind contribution of family caregivers.

Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association

June 2004

a status report on hospice, palliative and end-of-life care in Canada

Dying for Care

inconsistent access to hospice palliative care services generally and also to respite care services; access to non-prescribed therapies, as well as prescription drug coverage

terminated by the federal government in March of 2008

the Canadian Strategy on Palliative and End-of-Life Care

Canadian Hospice Palliative Care Association and the Canadian Home Care Association embarked on what we called the Gold Standards Project

In 2008, the Quality End-of-Life Care Coalition released a progress report

progress was made in 2008, from the 2004 accord

palliative pharmaceutical plan

Canadians should have the right to choose the settings of their choice. We need to look for a more seamless transition between settings.

In 2010, the Quality End-of-Life Care Coalition of Canada released its 10-year plan.

Seventy per cent of Canadians at this point in time do not have access to hospice palliative care

For short-term, acute home care services, there was a marked increase in the volume of services and the individuals served. There was also another benefit, namely, improved integration between home care and the acute care sector.

last summer, The Economist released a document that looked at palliative services across 40 countries

The second area in the blueprint for action is the support for family caregivers.

The increasing need for home-based care requires us to step up and strive for a comprehensive, coordinated and integrated approach to hospice palliative care and health care.

Canadian Caregiver Coalition

in Manitoba they have made great strides

In New Brunswick they have done some great things in support of family caregivers. Ontario is looking at it now.

we keep on treating, keep on treating, and we need to balance our systems between a curative system and a system that will actually give comfort to someone moving toward the end of their life

Both the Canadian Institute for Health Information and the Canadian Health Services Research Foundation have produced reports this year saying it is chronic disease management that needs our attention

When we look at the renewal of health care, we have to accept that the days of institutional care being the focus of our health care system have passed, and that there is now a third leg of the stool. That is community and home care.

Over 70 per cent of caregivers in Canada are women. They willingly take on this burden because they are good people; it is what they want to do. The patient wants to be in that setting, and it is better for them.

The Romanow report in 2002 suggested that $89.3 million be committed annually to palliative home care.

that never happened

What happened was a federal strategy on palliative and end-of-life care was announced in 2004, ran for five years and was terminated. At best it was never funded for more than $1.7 million.

Because our publicly funded focus has been on hospitals and one provider — physicians, for the most part — we have not considered how to bring the other pieces into the equation.

Just as one example, in the recent recession where there was special infrastructure funding available to stimulate the economy, the health system was not allowed to avail itself of that.

As part of the 10-year plan, first ministers agreed to provide first dollar coverage for certain home-care services, based on assessed need, by 2006. The specific services included short-term acute home care, short-term community mental health care and end-of-life care. It appears that health ministers were to report to first ministers on the implementation of that by 2006, but they never did.

One of the challenges we find with the integration of mental health services is

A lot of eligibility rules are built on physical assessment.

Very often a mental health diagnosis is overlooked, or when it is identified the home care providers do not have the skills and expertise to be able to manage it, hence it moves then over to the community mental health program.

in Saskatchewan it is a little more integrated

Senator Martin

I think ideally we would love to have the national strategies and programs, but just like with anything in Canada we are limited by the sheer geography, the rural-urban vast differences in need, and the specialized areas which have, in and of themselves, such intricate systems as well. The national picture is the ideal vision, but not always the most practical.

In the last federal budget we got a small amount of money that we have not started working with yet, it is just going to Treasury Board, it is $3 million. It is to actually look at how we integrate hospice palliative care into the health care system across all these domains.

The next 10-year plan is about integration, integration, integration.

the Canadian Patient Safety Institute, the Health Council of Canada, the Canadian Health Leadership Network, the health sciences centres, the Association of Canadian Academic Healthcare Organizations, the Canadian College of Health Leaders, the Canadian Medical Association, the Canadian Nurses Association, the Canadian Public Health Association, the Canadian Agency for Drugs and Technologies in Health and Accreditation Canada

We are all meeting on a regular basis to try to come up with our take on what the system needs to do next.

most people want to be cared for at home

Family Caregiver Tax Credit

compassionate care benefit that goes with Employment Insurance

Have you done any costing or savings? Obviously, more home care means more savings to the system. Have you done anything on that?

In the last federal election, every political party had something for caregivers.

tax credits

the people we are talking about do not have the ability to take advantage of tax credits

We have a pan-Canadian health/human resource strategy in this country, and there is a federal-provincial-territorial committee that oversees this. However, it is insufficient

Until we can better collaborate on a pan-Canadian level on our human resources to efficiently look at the right mix and scope and make sure that we contain costs plus give the best possible provider services and health outcomes right across the country, we will have problems.

We have not as a country invested in hospital infrastructure, since we are talking about acute care settings, since the late 1960s. Admittedly, we are moving away from acute care centres into community and home care, but we still need our hospitals.

One of the challenges is with the early discharge of patients from the hospital. They are more complex. The care is more complex. We need to train our home support workers and our nurses to a higher level. There are many initiatives happening now to try to get some national training standards, particularly in the area of home support workers.

We have one hospital association left in this country in Ontario, OHA. Their CEO will constantly talk about how the best thing hospitals can do for themselves is keep people out of hospitals through prevention promotion or getting them appropriately to the next place they should be. Jack Kitts, who runs the Ottawa Hospital, and any of the CEOs who run hospitals understand one hundred per cent that the best thing they can do for Canadians and for their institutions is keep people out of them. That is a lot of the language.

We have an in-depth brief that details a lot of what is happening in Australia

I would suggest that it is a potentially slippery slope to compare to international models, because often the context is very different.

The story actually begins even earlier than that, with Dr. Cargill and his fellow palliative care specialists trying to solve a thorny problem: How can the healthcare system help more people to die comfortably at home? Dr. Cargill worked with the Ontario Medical Association, which represents the province's 28,000 doctors, and the Ministry of Health and Long-Term Care, to develop a solution that was essentially an extension of the traditional hospital on-call program.

Hospital physicians are paid a basic fee to be on-call; if they are summoned to the hospital, they bill the Ontario Health Insurance Plan for whatever services they provide. Dr. Cargill's idea was to assemble teams of palliative care experts to provide that same level of 24/7 support to patients who want to die at home, something he and his colleagues were already doing for patients in the border city of Windsor. The province and the OMA together agreed in the spring of 2013 to set aside $5-million per year from the pot of money Queen's Park pays to doctors to cover the on-call fees for as many as 30 palliative care teams in what came to be known as the Community Palliative Care OnCall Program.

But then red tape choked the plan. None of the new on-call money was distributed as the ministry and the OMA worked together to hammer out details, such as which teams would qualify for the funding. In the meantime, Dr. Cargill and other community palliative care teams elsewhere in Ontario carried on, doing their on-call duty free. If they made house calls during an on-call shift, they could bill OHIP, but if not, they were not compensated for providing overthe-phone support such as taking calls for medical advice and refilling prescriptions by phone in the middle of the night.

Dr. Cargill's community palliative care team fielded more than 38,000 phone calls in 2014. "A large number of those occur outside of business hours ... If our program didn't exist, what would have happened with those phone calls and more important, what would have happened to those patients?" OMA president Ved Tandan said his organization shares some of the blame for the delay in setting up a complicated new program, but he fully expected the money to begin flowing after a formal deal was inked last fall, just a few months before contract negotiations between doctors and the province collapsed.

"There was no action until there was media interest in this," Dr. Tandan said. A spokesman for Health Minister Eric Hoskins confirmed that the ministry informed 26 community palliative care teams on Friday that they had been formally accepted to the program and that funding would begin to flow. "Our government is dedicated to ensuring Ontarians can access quality care throughout their lives, and that includes palliative and end-of-life care," Dr. Hoskins said in an e-mailed statement.

"Last year, physician groups were invited to apply for funding to the [Community Palliative Care On-Call Coverage] program. Since that time, the ministry has been working jointly with the OMA to review applications, construct accountability mechanisms and finalize program details."

The authors of a 2013 commentary in Canadian Family Physician take issue with the “widely cited” claim that only 16%–30% of those who need palliative care receive it. “The fallacy in this claim is the implication that all Canadians approaching the end of life should be cared for by specialist palliative care teams,” state the authors.

Shadd says all health care providers should possess basic palliative care knowledge pertinent to their discipline. “It’s not just physicians… . The nurses, personal support workers, social workers and all of the people supporting that person need to have that education.”

In November 2014, the Canadian Medical Association partnered with the College of Family Physicians of Canada, the Royal College of Physicians and Surgeons of Canada, and the Technology Evaluation in the Elderly Network to obtain a snapshot of the palliative medicine workforce today. They emailed a survey to members of the two colleges and to members of the Canadian Society of Palliative Care Physicians who didn’t belong to either college. The results will be available in May 2015.

for example, compared to 66% in New Brunswick and 69% in Manitoba.

Differences among provinces also reflect different types of hospital care, says Kathleen Morris, the institute’s director of system analysis and emerging issues. Palliative units exist in most Manitoba hospitals, for example, and the study’s data did not specify what units patients were admitted to when they died.

Cancer is the leading cause of death for Canadians. About one-third of all deaths, or an estimated 75 700, were attributed to cancer in 2012.

The report does contain some good news about patient care, says Morris. Unlike past practice, acute care hospitals are not subjecting patients to overly aggressive treatment in their last weeks of life.

“We’re seeing some really encouraging news about what happens to patients when they’re in hospital,” Morris says. “Many worry it’s a very high-tech, inhuman end of life. We looked for clues of that, and saw that only about one in 10 cancer patients were in the [intensive care unit] during last few weeks.”

Additionally, only 3% of patients with cancer received chemotherapy in the last two weeks of life.

Morris hopes the report will help open more palliative care options so people have more control over where and how they spend their final days. She also hopes it will prompt more “good, frank discussions” about what patients want at the end of life.

“This is my passion,” said Cleveland, 38 years in nursing, 25 of them in palliative care. “I ask the client, ‘What is it you want? How can I help you?’ And I add, ‘As long as it’s legal and ethical, I will support you.’ ” But Cleveland and other nurses know palliative care in Ontario is about to experience a shift of seismic proportions; the recent historic ruling by the Supreme Court of Canada legalizing physician-assisted suicides for the terminally ill has redefined what’s legal and ethical in palliative care.

According to the report, Odontuya Davaasuren happened. Davaasuren is a passionate doctor who led the charge on everything from doctor training and increasing drug access to building a national program for palliative care. "She's a brilliant teacher, leader and visionary," Stephen Connor, senior fellow at the Worldwide Hospice Palliative Care Alliance, said in the report. Trouble spot - China

Canada was edged out of the Top 10 this year, ranking 11th. (The first "Quality of Death" report, published in 2010, had Canada tied for ninth with the United States, but because it used a different methodology it can't be directly compared with this latest one). While Canada remains a top global performer, the rankings suggest that one's dying days are better spent in New Zealand or Taiwan. Two weaknesses pushed Canada down the list, according to Sharon Baxter, executive director with the Canadian Hospice Palliative Care Association.

One is that Canada still lacks a strong national strategy. The other, surprisingly, is in the category of affordability, where Canada ranked 22nd. "Even though Canada professes to be a publicly funded system, a lot of the care in the last year or two of life is provided while you're still at home," Baxter said.

"Our health-care system, besides hospital care, doesn't really cover a lot of that. So what you (see) coming out of the pockets of Canadians is actually increasing."

Calls for a Canadian national seniors’ strategy intensified in 2015 – everyone from the CMA to the IRPP held consultations across the country, identifying key issues and laying impressive groundwork for a future strategy. Lack of political will, however, holds us back – discussion of a national seniors’ strategy during the federal election was very limited, and it is still a political black box. An effective seniors’ strategy would provide a framework for all of the issues I have described – access, affordability and advance planning.

A national senior’s strategy will be essential to improving seniors’ quality of life, supporting families and caregivers, and planning for Canada’s rapidly aging population. Canada currently has one geriatrician for every 15,000 Canadians, and there are significant gaps across the country in the quality, cost and access to care.

The long-term-care sector will be a critical partner for implementing, supporting and evaluating assisted-dying requests when the proposed legislation becomes law. Home-care workers and health-care providers in long-term-care facilities, alongside family members, are often the last to care for dying patients outside hospital settings. For many Canadians, long waiting lists to access limited long-term-care spaces are a significant barrier. Regional disparities in access, quality and affordability also exist, and multiple advocacy organizations have emphasized the need for national leadership on issues of elder abuse and neglect in long-term-care facilities.

May 24, 2016 

ith Canada’s assisted-dying dying legislation currently before Parliament, it becomes increasingly urgent for the Liberal government to make substantive commitments to policies and programs that will support this sea change in the health-care system.

Currently, palliative care is only available for up to one-third of Canadians, the report found, and sometimes care isn't provided evenly in the same city.

Conservative Harold Albrecht, who co-chaired the committee along with Joe Comartin of the NDP

The report, titled Not to be Forgotten, provides a list of 14 recommendations that also address ways to prevent suicide and elder abuse.

also recommending the federal government create a national secretariat for suicide prevention and an office of elder abuse under the watchful eye of the minister for seniors

The recommendations include sections for First Nations, Inuit, Metis and rural communities

The committee's suicide prevention ideas mirrored guidelines recommended by a the Canadian Association for Suicide Prevention. Its blueprint for suicide prevention was first released in 2004 and updated in 2009

The report is the culmination of about a year of work from the ad hoc committee, which was formed by MPs with a personal interest in the issues and funded out of their office budgets.

But relief from pain is a human right. The Declaration of Montreal, adopted on Sept. 3, 2010 at the 13th World Congress on Pain, affirms, among other things, the “right of all people with pain to have access to appropriate assessment and treatment of the pain by adequately trained professionals.”

The result is that only 30 per cent of Canadians who will die this year will have access to palliative care, and only 16 per cent of Canadians will have access to such end-of-life care in a hospice. Further, the uneven distribution of palliative care across the country means that access to it is in reality a function of one’s postal code.

As a society and as a medical profession we are apparently failing most people who die. Another report again calls for UK governments to prioritise and improve end of life care, particularly for those with non-cancer related illnesses.1 This latest detailed BMA report rates specialist palliative care for people with cancer as “excellent,” while stating that palliative care for other conditions can be “poor” and “could frequently do much better.” High quality care is not being delivered consistently.

"It's another day where we are hearing about hospital budgets being balanced on the backs of nurses. This is several thousand hours of RN care that is being removed from this community."

Of the 53 positions to be eliminated, 28 will be registered nurses.

"We are working to decrease length of stay in that service, since it is significantly out of step with provincial benchmarks," PRHC spokesman Arnel Schiratti stated in an email Wednesday night. "By doing so we can treat the same number of patients with fewer beds. By moving to benchmarks four beds will no longer be needed as we treat the same number of patients."

"At the end of the day, there will be three potential layoffs. As this migrates over time, we see that (number) coming down," he said.

While registered nursing positions take the brunt of the cuts, Tremblay said overall the number of nurses employed at the hospital is actually going up.

There will be a bump in registered practical nurses from 204 in 2012-13 to 222 in 2013-14 and registered nursing positions will go from 711 to 755, the hospital said.

The cutbacks represent a 2.5% staffing decrease. PRHC currently employs about 2,070 people. The 2013-14 operating budget will be balanced, without surplus or deficit.

PRHC full-time employees average 10 sick days per year, costing $3.2 million. The leading Ontario hospitals in that category average only six days per year.

Sick days tend to lead to more overtime costs. In 2012/2013, PRHC paid out more than $1.9 million in overtime and the hospital is aiming for a 30% reduction.

Polls show Canadians overwhelmingly support these conditions. Medicare's key limitation, however, is that it applies only to services offered by doctors and hospitals. It does not apply to home care. Increasingly, provincial governments are trying to save money by encouraging acute-care hospitals to discharge patients as quickly as possible. In most provinces, these patients find themselves reliant on badly underfunded home-care services. Unlike hospital care, such services are usually neither comprehensive nor universal. As an Alberta oil worker with incurable cancer found when he tried unsuccessfully to come home to Ontario to die near his family, they are not even portable. Ontario pays $3 billion on home care each year. But Queen's Park saves more than that in foregone hospital and nursing home costs. In that sense, home care is a revenue tool. It allows provincial governments to evade the spirit, if not the letter, of the Canada Health Act. In Ontario, as my Star colleague Bob Hepburn has pointed out, the results are sometimes absurd. When the provincial Liberal government boosted wages for badly paid home-care workers earlier this year, some cost-conscious agencies responded by cutting services. In the weird world of Canadian health care, it was the logical thing to do. But there is a way to fix the home-care anomaly. Roy Romanow's royal commission on health care pointed to it 14 years ago.

Romanow argued it made no sense to exclude home care from medicare. He recommended home care services for the mentally ill, for patients just released from acute care hospitals and for those needing palliative care be written into the Canada Health Act immediately. By 2020, he said, all home care services should be covered by medicare. Interestingly, federal Health Minister Jane Philpott is also focusing on home care, mental health and palliative care. How would she get the provinces onside? Many assume a final deal over medicare spending can be hammered out only by the first ministers meeting in a marathon bargaining session - as happened in 2004. In that session, the premiers ran roughshod over then Prime Minister Paul Martin. Quebec demanded and received the principle of asymmetric federalism - that it could do whatever it wished with the massive health transfers Martin was offering. Alberta then demanded and received the principle of provincial equality - which meant any province could mimic Quebec. As a result, no real conditions applied to any of the money Ottawa agreed to hand over.

This is one way of doing things. The other is for Ottawa to ignore provincial objections. That's what Lester Pearson's Liberal government did in 1966 when, in concert with the New Democrats and over the strident objections of Ontario, Quebec, Alberta and the federal Conservatives, it passed Canada's first national medicare act. The Canada Health Act is the successor to that 1966 law. It is a federal statute that can be amended unilaterally by Parliament. In 2016, it makes sense that it be amended to include home care as a core medicare service. Some provinces may disagree. If so, they won't have to take any extra money that Ottawa puts on offer. Thomas Walkom's column appears Monday, Wednesday and Friday.