Distress Call

NO TIME TO CARE The need for "more staff, more freedom and more conversation" is what BC's Seniors Advocate heard in a landmark survey of more than 20,000 long-term care residents and their families.

Nurses experience professional and personal hardships that come with caring for seniors in BC

BC's nurses play a vital role in promoting the health and well-being of seniors. And BC Nurses' Union members – especially those who work in the community and long-term care – are all too aware of the need for greater investment in the home and community care sector.

And yet, despite the aging population, BC's seniors and their families have witnessed an almost two-decade long erosion of health support services available to them.

BCNU has been calling for improved investments in home and community care for years, and members working in long-term care facilities have also been raising the alarm about deteriorating care conditions, rising acuity and understaffing.

For many nurses, the toll is compounded when they are affected professionally and personally, both as caregivers for seniors while on the job and as unpaid caregivers for aging family members at home. Unfortunately, there is little relief in sight for these nurses and other British Columbians caring for seniors today, as any improvements to the system of care would be measured in years given the level of neglect the home and community care sector has experienced.

This reality was made clear in the Canadian Centre for Policy Alternatives latest report, Privatization & Declining Access to BC Seniors' Care, which shows that seniors in this province have less access to home support, home health care, assisted living and residential care now than they did in 2001.

The CCPA research found a 30 percent decline in access to publicly funded home support combined with a 20 percent drop in access to residential care and assisted living spaces over the last 15 years. The lack of access to home and community care for seniors also has the effect of increasing hospital overcrowding and surgical wait times, which affect all British Columbians.

It's a dire picture that was framed again recently with the release of two publications from BC's Seniors Advocate Isobel Mackenzie. The office released an updated report on Aug. 30 confirming that family caregiver distress is rising in BC while supports and services are not keeping pace with growing need. The update found that significant numbers of home support clients had an unpaid caregiver – almost always a family member – experiencing symptoms of distress such as anger, depression or feelings of not being able to continue with their caregiving duties.

Then, on Sept. 15, the office released, Every Voice Counts, a landmark survey of people living in BC's publicly subsidized residential care facilities today – the most extensive survey of its kind ever conducted in Canada, targeting over 22,000 individuals in 292 residential care facilities. Residents painted a bleak picture of overall neglect – although they believe they are being cared for by qualified people.

"For the first time in this province, we have heard the collective voices of some of our most frail and vulnerable seniors across all of our care homes," said Mackenzie. "What they are telling us is that while some are satisfied in some areas, overall, we need to be doing better, and in some cases, much better in ensuring the needs of residents are met," she added.

The survey, conducted between June 2016 and May 2017, asked a range of questions on residents' experiences of day to day activities and care from questions about food quality and staff responsiveness to observations of physician care and social connectedness. Residents' most frequent visitors, usually a family member, were also mailed surveys.

"We are very good at using clinical measurements to gauge how we're doing in this area such as numbers of falls etc.," said Mackenzie. "What we haven't been good at is actually asking the residents themselves what they think of the care they receive and this survey gave us the opportunity to hear feedback that is so critical in making care improvements.

"We have heard from 20,000 British Columbians – 10,000 residents and 10,000 family members – and together their voices send three strong messages: more staff, more freedom and more conversation," said Mackenzie, noting that residents need more help in some areas reflecting the fact there are not enough staff. She also stressed that many residents are lonely and want to be talked to and engaged and they want more freedom to control all aspects of their day to day lives from when they get up in the morning to what time of day they eat their meals.

The advocate makes eight recommendations in the report for system improvements, the most important being that employers should maintain a commitment made in March 2017 by the Ministry of Health to ensure a minimum of 3.36 funded care hours per resident per day (this would result in almost three million additional care hours per year). It also recommends that staffing levels be enforced and monitored by heath authorities, increasing flexibility of how and when care is delivered, increasing training focused on the emotional needs of residents, expanding the role of nurse practitioners in residential care facilities and increasing the range of activities provided in residential care facilities, particularly in the evenings and weekends.

"We have to remember that for people who are living in residential care, this is their home, and very likely their last home," said Mackenzie. "We need to do all that we can to ensure those who live there, have the very best experience possible."

The survey's findings are no surprise for BCNU members like Shaun Wyman. "There's no time to care," he says. Wyman was employed for six years as a special care nurse in a long-term care facility in Prince George where he says the nurses' workloads were often unmanageable. He describes "regular floors with one LPN and two care aides assigned to care for 20 residents," and says that patients there only got about 2.64 care hours per day.

"There's no time to care – patients' families don't always understand the pressure we're under."."

- Shaun Wyman

Wyman also notes that health and safety violations are common when understaffing combines with patients entering care who have increasingly complex needs.

He says the strain is having a clear effect on nurses. "You worry about residents when you go home. You feel horrible that you're barely able to provide basic care," he explains. "My co-workers would cry before and after their shifts. Patients' families don't always understand the pressure we're under."

BCNU member Jessica Celeste has worked in the geriatric specialty unit at Victoria's Community Health Services for the past 17 years. She can attest to the problems highlighted in Mackenzie's survey.

"What's happening in long-term care is not working for seniors out there," she says. "What is needed are not just more beds but improved staffing, so patient assessments aren't neglected."

She says that more home support in the community is also needed before clients require long-term care. "I've seen home support workloads so unmanageable that clients are falling through the cracks."

While Celeste can bear witness to the conditions she's encountered in long-term care, she's also one of the thousands of regular British Columbians feeling the stress of caring for an aging family, which is the subject of Mackenzie's updated report on caregiver distress.

"Unpaid caregivers are a vital, often unrecognized yet critical piece in ensuring the stability of our health care system," said Mackenzie on the report's release, adding there are approximately one million unpaid caregivers in the province whose paid value is estimated to be $3.5 billion. "The importance of maximizing supports can't be underestimated when we consider costly alternatives such as residential care or hospital stays."

Mackenzie's office looked at data two years ago showing that BC has one of the highest rates of caregiver distress in Canada. "We were hoping when we looked at the data in this area this year that we would see improvements, but unfortunately, this is not the case."

The report, Caregivers in Distress: A Growing Problem, is an update to a 2015 report that indicated 29 percent of unpaid caregivers are experiencing symptoms of distress such as anger, depression or feelings of not being able to continue with their caregiving duties. Data highlighted in the current report indicate rates of distress have increased by 7 percent to 31 percent.

"This is a disturbing trend on its own when we think of the daily reality for all the sons, daughters, spouses, neighbours and friends who are dedicating hundreds of hours caring for loved ones," said Mackenzie.

"However there is even more cause for concern when we look at additional data in this report that indicate the frailty and complexity of those we are caring for at home is actually increasing, and the supports and services that can make an immense difference to the lives of caregivers are not keeping pace."

The report focuses on the caregivers of individuals receiving publicly subsidized home support in the province, as this is the only sub-set of the caregiving community where measurable data using detailed health care assessments are available.

This report also relies on data that tracks key support services such as Adult Day Programs, which provide regular programming and relief to caregivers, respite in residential care facilities, and additional home support services, that also help provide a reprieve from caregiving duties.

"Having a break for even a few hours can make a huge difference in the lives of caregivers who are feeling exhausted and overwhelmed," said Mackenzie. "For some caregivers, time alone to refocus and recharge is something very precious and we need to recognize that it can make the difference between feeling strong enough to carry on with caring commitments, or giving up entirely."

For Celeste, Mackenzie's report hits close to home. Both of her parents have recently moved into care facilities. First her mother needed to be settled into a long-term care facility and then her father moved into an assisted living facility. She managed it all in addition to her usual job and union workloads (Celeste served as co-chair of BCNU's South Islands region). Celeste already went through a similar experience with both her mother-in-law and father-in-law just a few years earlier.

"I fought hard to care for both my parents at home until the very last moment when we were no longer able to manage on our own," she says. "I had to train new caregivers over and over, and even with home support, things don't always work out."

"I'm who they rely on – I have to take the lead, direct caregivers, remedy problems."."

- Jessica Celeste

Now that her mother is in a long-term care facility, Celeste says she knows it is a time of change for her family, and she and her siblings are working together to ease the transition. They have arranged a schedule so a family member can feed their mother at mealtimes given the lack of time that staff have to spend with her.

Not long ago, Celeste's father also began to show signs of dementia and eventually accepted that he was no longer able to manage living on his own. "He was struggling with everyday tasks and cognitive impairment – I think he knew he needed care."

Celeste says there is a unique burden that comes with being the nurse in the family. "I'm who they rely on in terms of knowledge. I have to take the lead, direct caregivers, remedy problems. At times you end up doing extra work because you are the only one who knows how."

For self-care Celeste makes time for yoga and gym workouts, and has been using massage to help handle the added stress. "You need to find activities that fit your schedule and you have to commit to it, that's how I balance my life." She also credits her spouse, children and siblings for their teamwork and support.

"Work with your family's doctors, community nursing, home care, and telehealth nursing for information and referrals to resources," is Celeste's advice to nurses facing similar challenges.

Celeste also wrote herself a checklist and created an action plan with a timeline to organize her thoughts. "When I stay focused I can accomplish great things. Challenges come to us, it's up to you to find out how to cope and be resilient."

Judy McGrath has also experienced the challenges of caring for a senior family member. The BCNU Central Vancouver regional co-chair has been a nurse since 1974 and has worked in neuropsychiatry at UBC Hospital since 1994. Her father was a fit and healthy 67-year old who enjoyed woodworking and social activities when he came from South Africa to live with her in 1997.

But in 2011 his health began to decline and he was diagnosed with Parkinson's Disease. Over time he became frailer, yet still managed to cope with daily living at home.

In 2016, he was hospitalized repeatedly and his Parkinson's was getting worse. McGrath found herself "doing more and more to care for him."

When he was admitted to Burnaby Hospital in June 2017 with an infection, hospital doctors wanted to send him home once he began to improve, but McGrath says she insisted that he wait for a care assessment. "Sure enough, the doctors agreed that my father needed to be placed in a constant care environment," she reports. In July, her father moved into long-term care.

The changes mean that McGrath "is finding a new normal." Now, when she works late, "I don't have to worry about him. It means that I can really do my job without that extra stress." She now dedicates every Sunday to spending time with her father, in addition to making extra visits during the week when she has the opportunity.

"I took things one day at a time," says McGrath on coping with the stress of being her father's caregiver. Today, supportive friends and long walks with her dog help keep her fit, and she is resuming activities that she stopped enjoying because she didn't want to leave him alone.

She also finds her work more satisfying and now has time for activities that recharge her. "I have so many things I'm looking forward to doing in the future. Knowing he's being taken care of is peace of mind I didn't have before."

Celeste and McGrath are all too aware of the need to ensure that the informal and formal caregivers of our senior population are receiving the care and financial, physical, emotional, and educational support they require to continue to perform this invaluable, though often invisible, work.

For many years BCNU has advocated for solutions which include an end to the privatization of home and community care and more access to publicly funded care provided by health authorities and non-profit organizations. To that end, the development of a home and community care framework is necessary, with an action plan to improve access and service integration, and the inclusion of legislated staffing levels consistent with research evidence.

BCNU believes that all seniors have a right to health care and diverse social supports that promote their quality of life. And nurses in BC will continue to speak up about the critical lack of safe, affordable housing, accessible public health care and community support services.

The Office of the BC Seniors Advocate was created in 2014 to deal with systemic difficulties that seniors face in BC. Isobel Mackenzie was appointed by the Ministry of Health. The appointment doesn't have a time limit and is similar in nature to the hiring of deputy ministers. Legislation mandating the job allows Mackenzie to form an advisory council to determine strategies and priorities. •

UPDATE (Dec 2017)