Family caregivers (FCGs) are critical to the provision of palliative care in rural areas of Canada. The intensity of caring for a dying family member is magnified in rural settings due to the geography, close-knit community relationships, limited palliative services, and lack of coordination of system services.
The Experiences of Rural FCGs
FCGs express a compelling desire and need to become skilled and competent in providing essential care for their dying family member.2 Rural FCGs are expected to coordinate and provide care twenty-four hours a day, seven days a week and, as a result, caregiver fatigue is substantial and FCGs become worn down and worn out. FCGs strive to become as skilled as nurses, and they perform tasks such as managing gastric tubes and administering complex medication regimes, including subcutaneous opioid lines. Rural FCGs often perform these services without critical support from health care professionals and feel that professionals over-estimate their knowledge. After the death of their loved one, FCGs may experience regret when they learn about something that might have helped during the dying process.1 These types of learning often relate to basic care, feeding, recognizing levels of decline, and knowing what to expect near death. In addition, FCGs may regret the lack of enjoyable time spent simply being with their family member due to the constant responsibilities.2
Becoming a palliative FCG also involves maintaining the aspects of daily life that the ill person cannot perform (shadow work).2 This is especially true in rural communities where managing a property and commuting for care involves considerable effort and planning. Driving to specialty care in urban centers, and scheduling and coordinating paid providers are additional responsibilities faced by FCGs. Dealing with all the everyday tasks that run parallel to the illness experience is an area in which FCGs welcome assistance.
FCGs and Self-Care
Rural FCGs often dismiss self-care as an unreasonable option and the expectations that family and health care professionals put on them to perform self-care may add to their existing stress - especially for caregivers with chronic illnesses.2 They resist the notion that their own needs and priorities are important because they want to maintain their focus on the palliative family member. The most common personal needs FCGs report are related to interrupted sleep and not wanting to leave their ill family member alone. At the same time, few FCGs indicate that they want more attention from the health system for these needs. The rural context may increase the reluctance to consider personal needs or seek assistance.
Negotiating Rural Palliative Services
FCGs have to negotiate a patchwork of services, responsibilities, policies and administrative procedures that have been implemented to address the complex process of dying. They contend with the reality that there are no palliative “dream teams” in rural areas.1 Although there are individual and group champions of palliative care with passion and expertise, FCGs express the concern that they do not have a designated professional to consult or who can get needed orders outside regular working hours. The desire for one reliable, knowledgeable source of support is the major need most FCGs report – someone who will come into their home, anticipate their concerns and offer assistance.3 In reality, rural FCGs experience a striking mismatch of needs and services.2 For example, limitations placed on support personnel may not meet the needs. Ambulance attendants who cannot lift even frail patients, home support workers who cannot cook meals, and volunteers who are prohibited from providing any care increase the burden for FCGs. A home support worker may be needed for several minutes to assist with turning, but is required by policy to stay for a specified length of time and not permitted to perform other needed tasks for the caregiver. A home care nurse with palliative care skills might spend 50% of shift time travelling to reach their patient. As a result of these limited and mismatched services, rural FCGs must become highly skilled in palliative care.
FCGs and Low Expectations of the Health System
Despite study findings that highlight FCGs felt need for more assistance, rural FCGs may not necessarily expect more assistance from the health care system.2 This inconsistency is puzzling, and may be related to the high degrees of self-reliance in rural communities.
The gaps in rural service delivery are often filled by friends, who are also healthcare professionals and are able to help FCGs navigate the system for appropriate resources and inform them about illness progression. Personal and professional boundaries may blur, because FCGs are often the personal friends of nurses assigned to their family. Due to the experience of intense personal accountability, nurses may act well beyond the obligations of their profession to provide support in rural areas without palliative teams.3,4 This responsibility and accountability in underserved areas results in a high degree of volunteerism and has been termed “stealth volunteerism.”5
In rural palliative care the lack of clear cut responsibilities results in nurses and physicians in a state of constant negotiation, contributing to FCGs observation that no one is ultimately accountable for their loved one in the dying process. This fluidity can work well when healthcare providers know and trust one another, however, when negotiations go poorly, FCGs can be left in distressing situations.3
How Health Professionals Can Help Rural FCGs
Rural FCGs express a desire for several things from providers: education and support for their role as caregivers; assistance with pain and symptom management; designated professionals with clear accountability for their loved one’s care; and help with interpersonal conflict.
FCGs often feel they lack clear guidance about how much time their family member has left, so that they can plan accordingly.2 General indicators to help FCGs recognize a “downward” trajectory are helpful. Tensions arise when professionals fail to recognize the significance of time for FCGs in a rural palliative context, where distance and service fragmentation is the norm: a loved one left in pain while medication orders are sought, a waitlist for radiation that exceeds life expectancy, or a home support worker arriving late makes FCGs feel abandoned and vulnerable.
Rural FCGs show incredible resourcefulness in becoming primary caregivers within the context of a fragmented system. Their commitment, unique resourcefulness and self-reliance contribute to high quality rural palliative care.
References:
1. Pesut, B., McLeod, B., Hole, R., Dalhuisen, M. (2012, August 24 e-pub ahead of print). Rural nursing and quality end of life care: palliative care…palliative approach…or somewhere in-between? Advances in Nursing Science, 35(4), 288-304.
2. Robinson, C. A., Pesut, B., & Bottorff, J.L. (2012). Supporting rural family palliative caregivers. Journal of Family Nursing, 18(4), 467-490.
3. Pesut, B., Robinson, C., Bottorff, J. (2013, March 12 e-pub ahead of print). Among neighbours: An ethnographic account of responsibilities in rural palliative care. Palliative and Supportive Care, 1-12.
4.Pesut, B., Bottorff, J.L., Robinson, C. A. (2011). Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care. BMC Medical Ethics, 12 (1), 19
5. Hanlon, N., Halseth, G., Ostry, A. (2011). Stealth volunteerism: an expectation of health professional work in underserviced areas? Health & Place, 17, 42-49.