MH: Thank you for sharing your thoughts and experience with us, would you please introduce yourself?
CAA: My name is Carole Ann Alloway. I was a caregiver for my husband, Bill, for 12 years. He recently passed away. We had so many problems with medical professionals not listening and we believed that cost us 7 years of our retirement and caused multiple unneeded operations resulting in heart issues as well. We have four children and seven grandsons.
MH: What is the background of your work at Family Caregivers Voice and what were the existing challenges that you are aiming to address?
CAA: I met another woman who was caring for her husband and was frustrated and angry with her treatment as a caregiver. We shared our stories and realized there must be more family caregivers who are frustrated as well. We started this website and posted our stories as well as the people we spoke to, presentations we made and this resulted in a large following of not just caregivers but patients as well as healthcare professionals (HCPs).
One thing that seems consistent with caregivers is their lack of trust in HCPs and the healthcare system. It is difficult to attain and easy to lose.
MH: What are your experiences with the hospital (doctors, nurses…) updating patients’ loved ones (family, caregivers, friends…) about what is happening during a hospital stay?
CAA: In my experience it is very difficult to get information from HCPs unless the patient is right there with the caregiver. Even then it’s like I am invisible. One doctor had her back to me while she asked my husband questions he was unable to answer because of his condition. There doesn’t seem to be a capacity to protect the privacy rights of the patient as well as share information to those who need to know and who the patient approves of. It is a challenge at every interaction with a HCP. I had access to my husband’s online portal and I would check every entry. Because of Covid, caregivers were not allowed in the hospital and serious errors with regard to my husband’s care happened as a result. An ambulance took my husband to the hospital and he was not in a position to give them information as he was too sick. The clinic notes showed two serious errors, that he was not a falls risk (which he was) and his DNR order was incorrect. If I had been there I could have answered all their questions. I have been trained in infection protection and control, take precautions, wear a mask and we haven’t been anywhere in 2 years. Why are caregivers banned? It is easier for hospitals if we aren’t there, but it was a big step backwards in terms of providing quality care. Why wouldn’t HCPs consider information from caregivers as one more diagnostic tool? We see and know our loved one – experts on them. HCPs are experts in their craft. Together we could get the best health outcome. I’ve known my husband for 40 years and I know when he’s sick before he does, when he’s recovering well or languishing, when something is wrong.
MH: What are the factors that influence the caregivers experience regarding the patients hospitalization?
CAA: Trust is the most important ingredient in any relationship. That means respect for the other person. Trust takes time to build but can be wiped out with a single action. Caregivers don’t trust LTC homes because of their blunt reaction to Covid and the patients’ caregivers.
MH: How would you measure the success of the hospital stay and is the medical outcome the only factor that matters or are there also other factors that make up a successful hospital stay?
CAA: Of course outcome is important, but even if it results in death the experience of the patient and the family caregiver is critical. Being treated with respect, listening to their wishes and preferences, culture, history, edible food, clean environment, privacy, etc.
MH: What is your opinion on the digitalization of communication between hospitals and patients’ loved ones (family, caregivers, friends,.. ), do you see a specific case where it could add value?
CAA: As I mentioned previously, I had access to my husband’s portal so could see what tests he had and the results. There wasn’t a translation of what it meant so it was up to me to Google the results and try to put it together myself. At rounds, caregivers should be invited to the conversation electronically with the patient if they can’t be there in person. It is critical that the caregiver hear everything that is said to the patient because if we don’t know we can’t take care of them properly when they come home and that leads to trips back to the emergency.
When I saw the errors (mentioned previously) in the clinic notes there was no way for me to correct them. Because it was one of the doctors in the ER, I couldn’t reach him (the nurses who answered the phone wouldn’t let me talk to him – he’s too busy) even though this incorrect note was actually a matter of life and death. The nurse said she would tell the other nurses and doctor when she saw them. I felt like I had interrupted them and they didn’t take this seriously. The clinic note was never changed.
MH: For all who are interested to learn more about the discussed issues – would you like to recommend some valuable resources for obtaining further information?
CAA: One of the best resources for caregivers in our province of Ontario is www.ontariocaregiver.ca
Thank you Carole Ann Alloway for talking about your experiences and for raising awareness on the topic of caregiver experience of the healthcare system.