Wave, Summer 2013
Dr. Michelle Lobchuk has seen the scenario play out many times.
A man smokes a pack of cigarettes a day for 30 years and is eventually diagnosed with lung cancer. His wife, who repeatedly begged him to quit smoking, now becomes his primary caregiver. She wants to provide the best care possible, but she is also frustrated by the idea that he might not be in this position had he listened to her in the first place.
Under these circumstances, it is easy to see how the family caregiver-patient relationship can become complicated, says Lobchuk.
"It's been captured in numerous studies that people do harbour negative feelings," she says. "It's human nature to look for a cause - why did this happen? There's a definite link between smoking and lung cancer, so it's pretty easy for the rest of the world to blame the patient for bringing this on himself."
And that, of course, is where problems in the caregiver-patient relationship can emerge. "When you blame somebody, there is more anger," she says. "It tends to reduce the kind, sensitive responses to the patient."
Understanding the nature of the relationship between family caregiver and patient - and how it can be enhanced through a technique known as empathic care - is at the centre of a relatively new area of study in Canada, and Lobchuk is a pioneer in the field.
A registered nurse and associate professor at the University of Manitoba's Faculty of Nursing, Lobchuk first became interested in family caregiver-patient relationships after caring for her parents when they became ill 16 years ago. She witnessed the challenges her mother, also a nurse, experienced in caring for her father, who was dealing with heart failure, as negative emotions of fear and anger thwarted open communication and optimal care in the home.
Since then, she has studied the relationships between family caregivers and people suffering from lung cancer, urinary incontinence, heart failure, stroke, and terminal illness. She is also developing a series of training videos on empathic care for family caregivers as well as health professionals.
Historically, empathic communication has been viewed as a minor aspect of care compared to technical skills. But that is starting to change.
Lobchuk's work, for example, is being supported by the Manitoba Health Research Council (MHRC). It recently provided her with a Manitoba Research Chair Award for Caregiver Communication to help further her research. In addition to providing her with more time for research, the five-year award has also allowed her to hire one undergrad and one postdoctoral student (Dr. Zulfiya Tursunova) to assist her in her work. In addition, the Canadian Foundation for Innovation has announced it will contribute $188,000 to the creation of a new centre for research into empathy-related communication between informal (family) caregivers and formal health-care providers and their patients at the Grace Hospital.
The relationship between family caregiver and patient can be tricky one. Often times a family caregiver will make decisions about care based on their personal history with the patient, or their sense of how much responsibility the patient bears for their illness.
Lobchuk first came across this dynamic while conducting research into the relationships between family caregivers and lung cancer patients. A large-scale study led by her and published last year notes that family members often hold lung cancer patients responsible for their condition, thereby undercutting the level of care provided to the patient.
This is where the concept of empathic care comes into play.
"Empathic care is the ability to step for a moment into someone else's shoes," explains Lobchuk. "It's being able to understand and reflect back another's viewpoint. These skills are essential for people who are caring for family members."
The key to becoming a more empathic caregiver, says Lobchuk, is communication. "Blame comes from not taking the time to hear from the patient why they do what they do," says Lobchuk. "Maybe they're sick from drinking but their drinking is from depression. Smoking is an addiction. It will take seven or whatever number of tries to quit. It's easy to blame without understanding the cause."
By learning the techniques of empathic care, family caregivers can overcome some of these issues and provide better care to the patient. "We need to understand our viewpoint may be different than the patient's," she says.
While the techniques of empathic care can help family caregivers deal with anger issues directed toward a patient, they can also be used to break down more subtle barriers that affect the caregiver-patient relationship.
For example, Lobchuk says many patients will try to protect their families by not being honest about their symptoms or how much pain they're in.
"If symptoms aren't identified quickly, people get sicker than they need to be and problems arise that could have been averted," she says.
"When it comes to dealing with family, you're often dealing with long-term patterns, but the old ways of being with each other may not work anymore. There are issues of control - patients feel they will decide when they have to see the doctor."
Jill Atnikov's experience caring for her parents helps illustrate the point. The Winnipeg woman cared for her ill mother, who suffered from Alzheimer's disease, and her father, who had terminal brain cancer.
While her two older brothers were supportive, as the only daughter, Atnikov found herself thrown into the caregiver role. "It was brutal. I always wondered 'why me?' I was trying to juggle a career as a pharmaceutical rep with a newborn baby," she recalls. "Almost instantly I became a mother and a caregiver. I lost my status as a daughter. I felt like a duck - you look like you're gliding on the surface, but your legs are going like mad underneath just to keep you afloat."
Atnikov's father passed away in 2007, and her mother passed in 2010. While she eventually had to hire full-time care for her father and place her mother in a nursing home, Atnikov was with them until the end. She was also the caregiver for her paternal grandmother, who passed away three months before Atnikov's mother, at the age of 97.
"It was 12 years of some pretty sad times, but it was the best learning experience I could have had," she says. "I had the most amazing parents ever. It was truly a privilege to do it. I would do it again in two seconds to have both of them back."
Still, she remembers that both parents strongly resisted the hiring of outside help. Her father in particular fought to maintain his independence.
"We were certainly struggling with Dad saying he could do things for himself. As my Mom started diminishing, my father realized he needed more support," she says. "Both parents were very protective as long as they could be. They wouldn't let me go to their medical appointments. It was a big struggle."
It can be extremely difficult to get men to discuss their symptoms and pain levels, as they've been taught to maintain a "stiff upper lip," adds Lobchuk.
"Males don't talk very well. They're taught to not complain."
Lobchuk says the techniques of empathic care can help teach people how to think, how to communicate so problems can be averted.
"Empathic care will enhance a caregiver's understanding and make them push a little harder to find out what the symptoms are like from the patient's viewpoint," she says. "Coming from an empathy-related stance can signal to the patient that the caregiver truly wants to understand and act from the patient's understanding of his or her situation. Sometimes that means listening closely for the root of a patient's stubbornness that is really unexpressed fear and a desire for control over uncertain outcomes."
Of course, family caregivers themselves also need empathic support. With the multiple demands placed on them and accompanying sky-high levels of stress, it's no surprise that many family caregivers often become sick themselves.
As a bedside nurse at Seven Oaks Hospital, Lobchuk saw first-hand many families floundering without support.
"The families were always there whenever you turned around. Deeply concerned, fearful, worried," she says.
Lobchuk believes nurses and doctors can play an important role in helping families.
As she explains, clinicians can help high-risk family caregivers enhance their empathic understanding of the patients' experiences. This could help avert a critical shortfall of support services that would be all the more difficult and costly for a burdened health-care system.
"Family members and friends find themselves in complex caregiving situations with limited support but great expectations to be good caregivers," says Lobchuk. "We need to teach them how to take care of themselves. They are a reflection of the level of training and support they received from health and social service care providers."
Holli Moncrieff is a Winnipeg writer.