Husband and wife Tony and Cathy White pose for a photo on March 23 at their home in Halifax

Preparing to die in peace

Tony White says when his respiratory illness makes him hungry for air, fear can seize what’s left of his breath.

HALIFAX — Tony White says when his respiratory illness makes him hungry for air, fear can seize what’s left of his breath.

“If you can’t breathe, you become very tense and anxious about things. It’s almost like a person drowning really,” says White, 74, a Halifax resident who has chronic obstructive pulmonary disease, also known as COPD.

White says a home-based pilot program provided by the Queen Elizabeth II hospital is reducing the cycle of anxiety and the problems he has with being breathless that his illness creates.

“It gives a lot of hope,” he says.

The program — dubbed inspired by the Capital District Health Authority — ranges from teaching participants to administer their own medicine to talking over concerns with a chaplain as the incurable disease progresses.

The illness is most often caused by smoking and progressively takes away the ability to comfortably inhale as tiny air sacs in the lungs deteriorate. A 2009-10 study by the Public Health Agency of Canada estimates about 770,000 Canadians have been diagnosed with the illness.

In later stages, many patients need an oxygen supply, infections increase and the inability to exhale stale air leads to increasing discomfort and distress.

The Halifax program is using home visits, regular telephone contact and written plans to help about 70 patients who have moderate to severe versions of the illness, or who had prior hospital visits over the past year due to the illness.

Respiratory therapists have examined White’s rate of oxygen exchange. They have shown him shoulder relaxation methods and ways to move his body that uses less energy. He’s been given instruction on ways to improve the use of medicine that he inhales.

It’s also given him an advance prescription for antibiotics that has allowed him to quickly treat an infection that might have quickly spiralled out of control.

“An appointment with the doctor (for the prescription) might have taken two days and two days could be crucial,” says White’s wife and caregiver, Cathy.

The team care White receives includes chats with Rev. Cathy Simpson, a chaplain who was recently visiting to help White complete a written plan for his treatment and care when he nears the end of his life.

“I want to die in peace,” White says, adding that completing the personal directive is one more way to keep mastery of your own life while you still can.

Dr. Graeme Rocker, head respirologist at the Capital District Health Authority, says the community-based treatment approach improves care while saving money for Nova Scotia’s health system.

After their first year of the project, which he launched last winter, the first 27 patients have seen a significant drop in visits to emergency and time spent in hospital, compared to the year before.

“For the most part, the cohort of patients who have been through our … program are not coming back to emergency. We’ve cut their admission rate by approximately 70 per cent,” says Rocker.

He estimates the $200,000 per year cost of the pilot program has already saved about $500,000 in acute care costs as hospital stays are eliminated.

Joanne Young, a respiratory therapist with the program, says she observed during a decade at a home health care service in New Brunswick that simple techniques can sometimes change a housebound patient’s life.

Shortage of breath — known as dyspnoea — can be worsened by anxiety, and the more tense the patient becomes the more it disrupts the breathing function, she says.

“It’s a hugely mental thing . . . there’s a large part of it that is in your head. . . . All of the anxiety and tension actually disturbs your lung mechanics.”

Meanwhile, Rev. Simpson spends long hours in conversations with patients, and the banter leads to insights to help improve their health and their level of hope.

“I don’t particularly like sitting around,” says White, a former Royal Air Force pilot, during one of the chats.

Soon, the conversation shifts to a discussion of White’s desire to be able to climb a few steps to a relative’s home, rather than waiting in the car while his wife goes inside. Simpson relays that information to Dr. Rocker, who can explore changes to therapy that might make the extra step a possibility.

Dr. Darcy Marciniuk, head of the respirology division at the Royal University Hospital in Saskatoon, says the Halifax efforts to bring more treatment to the community reflect a wider trend in treatment of chronic illnesses. The Saskatoon hospital operates a program called LiveWell for the management of respiratory and some other chronic illnesses.

One element of the program is organizing gatherings outside the hospital for patients to share advice about their chronic illnesses. There are also exercise classes tailored to respiratory diseases at a nearby field house and in satellite sites.

The program’s nurses regularly follow up with patients who are discharged from the hospital, and Marciniuk stays in touch with family physicians of patients he’s tracking.

Like Rocker, he’s reporting major drops in hospital readmissions. “It seems the outcomes are promising and the benefits are quite real,” he says.

Rocker plans to present the findings of the Halifax project this spring at the Canadian Respiratory Conference in Vancouver, and says he’ll advocate for a widening of the program.

“We can prevent emergency room visits, and that is very satisfying.

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