Seeking Human Updates
Types of Information
Universally, the types of information sought by Distance Family Members were about well-being and status of living, rather than specific medical details. Distance Family Members spoke of wanting to know if their parent was able to get out of bed, to eat breakfast or if they were unable to eat due to nausea. They wanted to know if they were in pain or were able to sit up in bed comfortably. Were they able to get dressed and go to the washroom?
“…[If] I could look at the end of the day and see ‘oh, he had a shower today and got dressed, took his pills, had his needle, meals-on-wheels came, everything is fine.’ … and you could look everyday and see ‘he’s getting showered twice a week…someone is coming in to dress his foot, someone is coming in to dress his incision — whatever, if you could just see it.” — Distance Family Member
Quite commonly, Distance Family Members were seeking information on the human aspects of living or the visible signs of decline. They wanted to know if it was a good day or a bad day. Did they smile today?
Although one Distance Family Member indicated that she wanted to know medical information, she clarified it was not the medical data that was of interest.
“…I think the tangible stuff—what medication is he on? How’s his blood pressure? How is he fairing? And then there would be the emotional stuff—how are his spirits?… I didn’t have access to that a lot of the time. I would have to drive down to physically see him to know.”
— Distance Family Member
Desire for Frequency and Consistency
When asked, in the interviews, what kind of support they might be looking for, a common request from the Distance Family Member was for regular updates on how their loved one was doing. The suggested format of the updates varied—including phone calls, emails, checklists and websites—but the desire for frequency and consistency was common for most participants.
“…if they could fire out a weekly email about how that person is doing. A really general checklist—didn’t have a fall, had a fall. I’m not sure what they would write but if they could fire off something every week.” — Distance Family Member
However, participants also noted that information provided should reflect the nuances of decline associated with changes at end-of-life, however subtle. Moreover, while the opportunity to ask more questions would be beneficial, there was no indication that the response had to be immediate, suggesting that the asynchronous nature of emails or websites could also fulfill this need.
When requesting updates on the condition of their loved one, Distance Family Members shared that it was common for caregivers and local family to indicate that “everything is the same,” even though Distance Family Members suspected that not to be true. As Distance Family Members struggle with not having access to information—or accurate information—repeating this issue in a new format would only serve to increase current frustrations.
Distance Family Members seek information that reflects the human side of decline, rather than specific medical data. Access to this information helps them form an understanding of the overarching status of their loved one.
Although the current focus in the healthcare environment is on access to personal medical data, the information that the Distance Family Member desires is quite different. The Distance Family Member seeks information about quality of living and status of decline—the day-to-day status of how their loved one is faring with aspects such as mobility, pain level, ability to sleep and dress as well as whether they are able to eat. The Distance Family Member does not seek data or information in the form of medical jargon. They seek real language to describe quality of life.
This is a noted difference from allowing access to medical records, which is the current focus of discussion within Ontario’s healthcare environment. Although patients and/or alternate decision-makers would still need to give consent, information on the human side of decline would not require translation of medical data by healthcare practitioners to be understood by family members.
With consistent and frequent access to this type of information, the hypothesis is that the Distance Family Member will have the ability to formulate a pattern of decline over time and then translate this aggregated knowledge into a better understanding of the status of their loved one. If they are better able to understand the decline in consistently shared information about human status, then perhaps this will mitigate anxiety levels prior to an in-person visit and will better prepare the Distance Family Member for the change that has occurred since their last visit.