Eileen Cunningham was a health care manager, now retired, who looked after her partner, Michael, while he received treatment for liver cancer and then a liver transplant. She offers this observation about people working in the health care system. “Everybody wants to heal. Everybody wants to make the patient, the client better. But not always do they look at the whole picture and what that would mean for the individual and/or the family.”
Even though Eileen worked in the health care system, she still encountered problems getting the full picture of what was going on with Michael’s care. “I think, because I was so entrenched in the system, I didn’t want to offend anybody. I didn’t want to push too hard, but I think I could have [pushed more]. I don’t think it would have changed the outcome, but I think that the communication – in this case with the transplant team – could have been a lot better if I had pushed.”
Part of the challenge was that Michael’s transplant team was based at an academic health sciences centre. There were many different players within each specialty. “We were only at the hospital twice a week, and generally speaking we didn’t see the same people on consecutive visits,” she says. This was also a challenge while he was hospitalized.
What does Eileen advise family caregivers who find themselves in a similar situation? Find the point person in the system who can give you the information you need, so that you’re fully informed. “Don’t be afraid to ask questions,” she says. “And if you do that, you’ll find the people who’ll talk to you.”
“Often, the best information that I was able to get when Michael was in the latter stages was through the nurses,” she says. “They were very, very involved in his care. And they were, I found to be, the most empathetic and the most communicative when it came to giving information. Some of the doctors were fine. Some were not so fine…”
According to Eileen, Michael didn’t want to be informed about his condition as much as she did. He’d been a successful rhythm-and-blues singer in California for many years. She says that he took his illness really, really hard. “He never saw himself as someone who would get old or sick. He would always be a rock-and-roll star in his fantasies. Anyway, that didn’t happen.” He died in June, 2015.
Eileen understands why family caregivers may hesitate to push for answers. “I think people are generally reluctant to be as assertive as they might be because they’re afraid that they’ll compromise the service that they’ll get.” Nonetheless, she believes it’s important to be assertive so that you can look after your loved one as best you can.
Things to keep in mind when talking with health care providers:
- Communication can be especially challenging when you don’t see the same people from visit to visit
- Don’t be afraid to ask questions, even if you don’t get satisfactory answers at first
- Persevere until you find the point person in the system who can give you the information you need
- Consider seeking advice from friends or co-workers who have a health care background