Issues with communication was one of the most common themes shared by Distance Family Members. Due to the distance, information almost entirely flowed through other family members who were local, including the caregiver and siblings. Distance Family Members expressed frustration with the delay of information, as well as disappointment that information was often edited, not correct or not frequent enough. Many Distance Family Members mentioned that they frequently “felt out of the loop” and, in cases where information was shared, it did not express any change in status, even though they suspected there were changes.
“[The hardest thing] was probably not being told things all the time. Being left out of the loop. Mom wouldn’t always feel it was necessary to tell us that dad had a fall. We’d find out about it 3 weeks later. I would rather know the day it happened.” — Distance Family Member
Distance Family Members expressed that asking questions of healthcare practitioners was generally not possible, which reinforced their dependence on the caregiver and other local family. It was not uncommon for siblings at a distance to support each other in formulating an understanding of the current health status, especially in situations where a pattern of delay or “status quo” updates had occurred.
“My sister would sometimes supply information to my brother and I. My brother lives away as well. Sometimes mom would tell him different things and then she’d tell me different things and she’d tell my sister differentthings. And then the three of us would converse to see what we were missing.” — Distance Family Member
Use of various technology platforms to facilitate communication within families were adopted, such as email or text. It should be noted, however, that the experience with technology was not consistent. For example, when considering options for improved communication, one Distance Family Member thought weekly email communication would be very beneficial. Conversely, another Distance Family Member considered email to be a less positive form of communication, as it fostered misunderstandings. Due to the variation in how Distance Family Members communicated, or desired to communicate, it appears that family preferences and existing family-communication patterns would dictate what technology would serve them best.
Although Distance Family Members often accepted that their local family was protecting them, or did not want them to worry, the lack of accurate information received in a timely way resulted in many emotional consequences.
“I discovered that my family was keeping a lot of my mom’s deteriorating health from me. I had just gotten married and moved away and they didn’t want me to worry. It was intended out of concern for me but it left me feeling very disconnected from my family.”
— Distance Family Member
Healthcare Practitioners Experience of Communication
Healthcare practitioners recognized the challenges associated with family communication and revealed that they often find themselves in the middle of family conflict as a result. Healthcare practitioners observed that, from their perspective, family dynamics and challenges with information sharing contributed to conflict over goals of care and often required intervention to help a family that was not communicating well. However, the Distance Family Member can be at a disadvantage, as they are not as visible as the caregiver and other local family, especially when the patient is receiving support in the home.
“…everybody thinks they know what’s in mom’s best interest. As a nurse you are listening to mom. And yet the children haven’t listened to mom because they are thinking what they think mom should know. Even though mom has already shared with us what she wants…I think that is complicated by distance…because when the family members are in the home the nurses form relationships with the family members as well.” — Nurse
One healthcare practitioner expressed frustration with the level of disruption a Distance Family Member could cause the patient and, their own ability to fulfill the patients goals of care.
“Because some family members can be quite detrimental…can be really awful, especially when they start making plans or making suggestions that are totally inappropriate. Like trying to feed a patient that can not eat anymore.” — Social Worker
As the primary concern for healthcare practitioners is to care for the patient, a Distance Family Member who arrives for a visit, lagging behind their loved one’s journey of decline, may not be at a point of acceptance and consequently interfere with the goals of care. This was most noticeable at key indicators of decline, particularly close to end-of-life, when feeding is no longer appropriate. Understanding the perspective shared by the Distance Family Member that communication was often challenging, it is possible that they did not receive enough information to construct an accurate portrait of decline. Without this understanding, the Distance Family Member may do inappropriate things when they visit in person, as they have not been kept aware of the small declines along the way. Without the pattern of small declines, the larger changes—such as loss of mobility and no longer taking in food—is a significant shock.
Another issue identified by healthcare practitioners was the speed of which information was desired by Distance Family Members, suggesting that “issues arise when you’re not giving enough information timely.” This sentiment was consistent with communication concerns that emerged from Distance Family Member interviews.
Finally, healthcare practitioners expressed two barriers to providing consistent updates to Distance Family Members. First, current workflow practices do not provide the time or structure to communicate with Distance Family Members. As well, all healthcare practitioners identified that it was the family’s responsibility to inform healthcare practitioners of Distance Family Members. This exchange might take place in the hospital, at entry to a hospice or upon first visit to the home. Second, one doctor expressed the concern that many patients are not understanding the nature of their treatments and, therefore, it is an unrealistic expectation that they would be able to explain their prognosis to others.
“There are patients themselves that may be reluctant to involve distant family at an early time because ‘well, we don’t want to bother them…it’s not that serious yet’ and there is a lot of literature in the cancer fields, looking at how much patients actually understand about the nature of their treatment…where in fact 80% of the cancer patients were not actually sure of the nature of their treatment, meaning was it a curative treatment? Was it a palliative treatment? This is significant. If our patients are not understanding the significance or nature of their disease…then how can those patients be communicating and sharing appropriate information to loved ones if they don’t get it themselves?” — Doctor
Distance Family Members identify communication challenges, inadequate information distribution and lack of consistency as primary reasons for feelings of disconnection.
The Distance Family Member seeks accurate information in a consistent and timely manner,
so they may appropriately weigh their responsibilities at home against the decline of their loved one. Lack of information leaves them feeling disconnected, guilty and out of sync. Any design intervention to support the Distance Family Member’s need for information should address accuracy and consistency and not be filtered by a third party.
Design interventions for communication should also consider the impact of family dynamics on the distribution of information when another family member is the conduit. Interventions should also educate families on the need for establishing positive communication patterns in advance of a crisis. Use of technology, although promising, should recognize that families will have a variety of communication preferences and will have adopted new platforms in varying degrees.
Healthcare practitioners should be encouraged to have a role in ensuring that information is distributed evenly to all family members that have been identified.