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Practical Insights for Busy Caregivers

The Caring Experience Project: Maciej Karpinski’s Story

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December 7, 2015, by Hannele Kivinen, Caregiver Exchange

Maciej Karpinski Maciej Karpinski is a two-time caregiver: he has supported both his mother and his brother at different stages in their lives. Although his experience navigating the health care system has been positive overall, there have been a few instances where a little empathy would have gone a long way.
 
When his mother experienced pain in her chest and collapsed at work, Karpinski brought her to the hospital. He found that doctors, specifically specialists, did not listen to him or his mother when they tried to explain her personal and family health history. “Consequently they misdiagnosed her condition, made her undergo unnecessary intrusive tests, and prescribed her inappropriate medication,” says Karpinski. In his view, they seemed far more interested in the numbers that appeared on their papers following the numerous tests they had his mother undertake. They failed to see the person inside the patient.
 
Karpinski’s brother lives on the West Coast. While visiting Karpinski in Ottawa, he developed an unusually strong headache and was diagnosed with a cyst in the middle of his brain. The doctor who delivered the news was extremely blunt, telling Karpinski’s brother that he could not go home because the trip would kill him. When he broke down in tears, the doctor quickly exited, leaving Karpinski to deal with the situation. “No social worker, nothing, no one came in to provide support for our family,” says Karpinski. His brother ended up staying in Ottawa for six months. Karpinski cared for him, with the help of his mother and a close friend.
 
Karpinski recently took part in an “open lines” teleconference town hall meeting, run by The Caring Experience, a joint initiative of The Change Foundation and the Ontario Caregiver Coalition. The Caring Experience is currently seeking feedback from family caregivers on ways to make the health care system better. Karpinski’s suggestion? Deeper, more intensive sensitivity training for all health care professionals to ensure care is person-centric and empathetic.
 
A few kind words and a bit of attention make a big impact. For example, when his mother was being cared for in the hospital, Karpinski found the nursing staff to be remarkably attuned not only to every patient on the floor, but also their caregivers. They took the time to say hello, smiled and laughed, answered questions. “There was humanity there, and that made the experience completely different,” Karpinski says.
 
And then he had an idea: he started to ask doctors how they were doing. Although he says it definitely threw them off guard at first, it ended up making the interaction a bit more human. The experience reinforced how important it is to treat people like people, no matter the circumstance.
 
Are you a family caregiver willing to share your experience with Ontario's health system? From December to February, The Caring Experience is offering three ways for you to provide your input: online mini-surveys, caregiver workshops, or journey mapping. (Depending on your preference, journey mapping may involve a phone interview, a Q&A session via email or text message, or completion of a handwritten journal or worksheet. You also have the option to share photos, video, or audio recordings, if you wish.) For more information, visit The Caring Experience.
 
This is the second post on The Caring Experience Project. Read last week’s post here.