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The Daughter From California

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The “Daughter from California” is a categorization that emerged late in the secondary research, with the surfacing of two articles, “Distance Caregiving a Parent with Cancer” and “Lack of Communication and Control: Experiences of Distance Caregivers of Parents with Advanced Cancer,” led by Polly Mazanec, a PhD and nursing professor in the Frances Payne Bolton School of Nursing at Case Western Reserve University.

Both articles outlined unique characteristics attributed to the “Daughter from California” or the “Daughter from New York” which included many of the characteristics revealed by the Distance Family Members that participated in this research project. Those characteristics include the demands of work and family, feelings of guilt and anxiety, concerns about communication and lack of information, and the need to feel connected to what was happening with their parent.

From the perspectives of some the healthcare providers identified as part of Mazanec’s research, the distance caregiver was like a seagull, flying in, making a mess of things and then flying out again (Mazanec & Giarelli, n.d.).

History in Geriatrics
Origins of the “Daughter from California” categorization can be traced to a 1991 article published in the Journal of American Geriatrics Society. It described the case of a geriatric patient in her 80s being cared for by her daughter who established a care plan based on providing comfort and pain management and included a do-not-resuscitate (DNR) order. However, “when the second daughter arrived from California, it was quickly apparent that she had been unaware of her mother’s recent deterioration. She was appalled by her mother’s condition… [and] demanded that the mother receive whatever treatment was necessary to maintain life.” The case study describes meetings with both daughters, which resulted in a change in the goals of care to satisfy the “Daughter from California,” which were then reversed as soon as she returned home a few days later (Molloy, Clarnette, Braun, Eisemann & Sneiderman, 1991).

Many practitioners interviewed in this research project acknowledged a widespread understanding of the ‘Daughter from California’ concept “…it’s a biased assumption that we have in healthcare—it’s the daughter who lives in California who believes she knows it all, who comes in at the 11th hour and wants to change the plan of care. That’s the assumption.” — Nurse

It is important to note that part way through the practitioner interviews, it became clear that the concept of the “Daughter from California” was deeply connected to the opinion that practitioners formed about the Distance Family Member. Many of the frustrations expressed about the Distance Family Member were similar to the “Daughter from California.” Practitioners shared stories of the daughter coming for visits with her own agenda, with a lot of guilt. She often had money and was usually highly educated, and she brought “the stresses from work, from life, not being there, feeling guilty…and not wanting to recognize that maybe their parent will no longer be there a few months down the road.” — Nurse

In addition to the assumptions mentioned above, a number of practitioners suggested that the type of person who moves away from their parents is different than the type of person who stays. This affects how they want to engage when they do visit in person. They also suggested that it forms the guilt they bring with them.

…the issue with guilt, we do have the families that for whatever reason the Daughter from California moved to California, the theory being you think you’re going to get away from your issues if you move far away and we know that doesn’t happen and there is often guilt around that.” — Social Worker

Regardless of the reasons the Distance Family Member moved away, the characteristics that describe the “Daughter from California” were revealed to impact practitioners significantly. As Distance Family Members have an asynchronous relationship with their loved one’s illness, they are always a few steps behind, rarely able to see the decline for themselves. As this is compounded by a perceived lack of information and feelings of “being out of the loop,” there is always a need to bring the Distance Family Member up to speed when they visit in person.

“…the references to the Daughter from California Syndrome, and that is certainly well-known…it’s often the most challenging for family from away because they haven’t necessarily been present to monitor and see the changes which are happening to their loved one on a day-to-day, week-to-week basis. Their contact is often more fragmented, or intermittent, or they visited last six months ago and they’ve talked on the phone monthly but they haven’t actually been able to see those significant changes which are happening with their loved one and therefore, because they perhaps haven’t also necessarily been part of the discussions around the treatment options…the family member from away really find themselves doing a lot of catching up and trying to figure out what’s happening and trying to catch up with the folks who have been local. And often times, seeing is believing. There’s a lot more disbelief and denial which occurs when we haven’t been privy to the process in person.” — Doctor

As the Distance Family Member travels back and forth, the asynchronous relationship that forms creates a pattern of not knowing that is cyclical. Each time they arrive for a visit, they are not prepared for what they will see, and each time they are shocked and are driven to fix things before returning home. The combination often results in disruptive behaviour, which is frustrating for practitioners and requires significant effort to bring them along to an understanding of the goals of care. Practitioners, especially those who worked in the home, identified that establishing parameters to protect the patient and caregiver from outside stressors was a critical aspect of their role. In these cases, the Distance Family Member was viewed as having the potential for a particularly negative impact.

Compounding the need for practitioners to synchronize Distance Family Members with a loved one’s journey of decline is the demand for information to aid in decision-making around travel. Practitioners expressed frustration with Distance Family Members wanting specificity on the end-of-life decline, so they may plan travel and organize family and work commitments. This suggested that they were “wanting guarantees regarding prognosis which we are unable to give.”

It is the combination of disruptive behaviour, demands for information and intermittent in-person visits that does not foster relationship building between Distance Family Members and practitioners. Subsequently, the “Daughter from California” syndrome is reinforced, whether the particular details are consistent with the origins or not, and regardless of whether any efforts have been made to keep the Distance Family Member up to date between visits.

DESIGN IMPLICATIONS
The Distance Family Member is often painted with the same brush as the characteristics that describe the “Daughter from California.” Greater consideration should be given to the conflicting pressures felt by the Distance Family Member and the benefits of facilitating positive interactions with healthcare practitioners.

There are two sides to the “Daughter from California”— the perspective of the Distance
Family Member who feels pressure to uphold the responsibilities of their home life and the needs of their loved one; and the perspective of the healthcare practitioner, who feels that the Distance Family Member comes with their own agendas, are demanding of time and come with a lot of emotional burdens. Both perspectives are true and both perspectives need to be acknowledged.

Any proposed intervention needs to be aware of the deeply embedded view of the “Daughter from California” within the healthcare community. This bias will not be easy to overcome, as it assumes that the daughter moved away from home to escape, as opposed to following education, career opportunities or relationships. It will be important to support the Distance Family Member’s ability to have a more synchronous relationship with their loved one’s illness, so when they do visit in person they are not as unprepared for the level of decline. Supporting synchronization will reduce the disruption experienced by practitioners when interacting with Distance Family Members. Interventions that support positive interactions between Distance Family Members and practitioners should be prioritized, and education on how to address the specific needs of Distance Family Members should be considered for healthcare practitioners supporting patients and their families at end-of-life.



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