Denise Nauss credits the in-home support that she received from a team of health professionals for prolonging the life of her beloved mother, Joyce Mason, by almost two years.
Mason, who suffered from chronic obstructive pulmonary disease (COPD), died in Halifax this past May at age 73. COPD is a long term, progressive lung disease, caused in most cases (like Mason’s) by smoking, and characterized by shortness of breath and coughing.
Nauss, with her husband and three daughters, moved into her parents’ house to help out three years before the death of her mother.
“But when I moved in, I knew nothing about how to help her. I was taught how to help her relax, which puffer to have her use and, if I was at a loss, I just had to pick up the phone,” says Nauss.
That’s because she participated in two COPD research projects, led by Graeme Rocker, head of the division of respirology and professor of medicine at Dalhousie University.
The first project offered home education and a strong support network, and the second involved carefully tailored prescription opioid use for her mother. (Publication is forthcoming of Rocker’s clinical trial into opioid use with COPD patients.)
COPD is the 4th leading cause of death in Canada, and is expected to shift up to 3rd place by 2020. It is a chronic illness— Nauss described the course of her mother’s illness as “one step forward and two steps back.”
Public awareness of the condition is limited, according to surveys, and Rocker says there’s also a “climate of negativity” around the diagnosis.
Patients often have multiple hospital admissions, there is no fix for the underlying problem and, because COPD is primarily smoking related, some front-line health care workers are guilty of blaming patients for their condition, he explains.
The chronic illness primarily affects older Canadians, especially age 50 and up, and rates among women are rapidly approaching those among men, according to Ontario research, largely because of past increases in the number of women smokers.
Although rates have since dropped, almost one third (32%) of Canadian women over 15 were smokers in 1983, according to Statistics Canada, and there’s a lag time of 25 to 30 years before COPD develops, says Saskatoon respirologist Darcy Marciniuk, lead author of the Canadian Thoracic Society’s guidelines for managing severe COPD.
That lag means that Canada’s seven or eight million former smokers are at risk, and even if the five to seven million current smokers “were to quit today, the reality is that COPD would not go away any time soon,” he adds. Social and economic disadvantage also have a significant negative impact on rates of morbidity and mortality among those with the condition.
Acute exacerbations of COPD—where an infection can cause serious breathlessness—are a leading cause of hospital admission in Canada. “COPD does not have the eminence of diabetes, for example, but if you look at the statistics, it should,” says Marciniuk.
Breathlessness is a symptom that “has long lagged behind pain as worthy of our research, educational and clinical endeavours,” Rocker has written.
In 2005, a nation-wide “report card” on COPD gave most provinces, with the exception of three (Quebec, Ontario and Manitoba), failing grades on how COPD was being managed by the health care system.
The Maritime provinces received particularly low grades, a fact that Dr. Rocker says spurred him on. Seven years later, his outreach program, launched first as a pilot/demonstration project and part of his research study, is now a core funded program within the Halifax District Health Authority and is a potential model for other jurisdictions and for other chronic illnesses.
The Halifax program is called INSPIRED, which stands for Implementing a Novel and Supportive outreach Program of Individualized care for patients and families living with Respiratory Disease. The INSPIRED team is comprised of three respiratory therapists, a spritual care practitioner (with a PhD in COPD care and a masters degree in medical education) an evaluator and Dr. Rocker, for the equivalent of three full-time positions.
A 2012 report on INSPIRED indicates that 50 patients who participated had, compared to the time before they entered the program, 73% cent fewer emergency ward visits (from 110 to 30), 78% fewer per cent hospital admissions (68 to 15) and spent 80% fewer days in hospital (740 to 148). Rocker says the savings represented by these reductions far exceeds the annual cost of the program, which he estimates at about $250,000.
The reductions in health care use among Halifax area patients of INSPIRED are somewhat higher than those for successful projects in other provinces, such as the Saskatoon Health Region’s LiveWell program, which doesn’t place as much emphasis on in-home care, but instead focuses on maintaining mobility through group exercise programs.
The LiveWell program evolved from a COPD specific program that was launched in the region in 2002. “One way we were able to secure resources is by couching COPD care with other chronic diseases,” says Marciniuk, who helped create the program. (In 2005, the program expanded to include chronic illnesses such as diabetes, heart disease and arthritis.)
Marciniuk notes that COPD programs like LiveWell and INSPIRED, as well as similar initiatives in Montreal and Calgary that place an emphasis on outpatient care, are “gaining traction” because of evidence of their effectiveness at reducing unnecessary hospital visits and improving patients’ quality of life. For his part, Rocker would like to see his program replicated in other health authorities in Nova Scotia, noting that his team could help support such start ups.
The first project that Nauss participated in was a qualitative research project that involved extensive interviews with family members and patients with advanced COPD, many of whom were virtually housebound.
Respiratory therapist Joanne Young had worked in palliative care in the community in New Brunswick before joining Rocker’s research team and co-authoring research reports. But she says that in her role as a researcher/interviewer, patients and their caregivers told her much more about their lives than she was told as a clinician working in the community.
“We usually get so caught up in what we have to do, and this was a chance to just sit and listen to people’s experiences, not to bias what people were telling me. It gave me an opportunity to reflect on my own practice and it changed my thinking,” she says.
One thing that struck her forcefully was the gap between access to services and efficient use of services—a gap that can often be accounted for by how much (or little) insight primary care providers have into COPD and how much they are involved in coordinating a patient’s overall care.
COPD is a disease characterized by loss—of breath, of mobility, of power, often of work—that also puts a great strain on relationships, says Rocker. As a result, involving and supporting caregivers is critical to the success of any program, he says.
There’s no substitute for seeing patients in their homes, say Rocker and Young. “When you see people in hospital, you lose so much about who they are, about what impacts their decisions,” says Young. “When you see them at home, there is a shift in power . . . we are guests in their space, they feel more comfortable, they tell us more, and so you can broker a better relationship,”
The changing demographics of COPD create new issues, she notes. With more women being diagnosed, more men are playing the (often unfamiliar) role of caregivers. And as adults are diagnosed at a younger age, they can be more challenged by financial issues and the cost of medications, she notes.
Rocker emphasizes that a key to the success of the INSPIRED program is the work of the team member, Catherine Simpson, who can offer spiritual counselling to patients and their families, as well as helping them with advance care planning discussions.
“That was a little difficult,” Nauss says, of the discussion about what medical interventions her mother would accept near the end of her life. “But I’m so glad we had the discussion early on. It helped immensely. For the last one to two years, any time my mother had a bad attack [of breathlessness], I had the papers, I knew exactly what she wanted, I didn’t have to think.”
Her mother said she did not want to be placed on a breathing machine or undergo resuscitation if her heart stopped, but she would accept a mask and medications if she couldn’t breathe.
Joyce Mason’s obituary suggests donations to the Nova Scotia Food Bank or to Dr. Rocker’s studies on respirology, and continues: “… for if it wasn’t for Dr. Rocker and his team, we wouldn’t have had Joyce our mother, grandmother, sister and friend, for as long as we did.”