The Impact of Illness Trajectory Pamphlets

Background

As a part of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) Study, five educational illness trajectory pamphlets were developed. The pamphlets focus on five life-limiting chronic illnesses that are most prevalent and inadequately addressed in LTC; frailty, dementia, heart failure, kidney disease, and lung disease. The pamphlets aim to provide information to residents and families/friends about the expectations of each illness, prompting questions to encourage reflection and discussions between residents, families/friends and staff and further resources on end-of-life planning for each illness. Along with providing illness specific information, the pamphlets aid in activating advanced care planning (ACP); the process of reflecting on, discussing, and if desired documenting values and wishes about future end-of-life resident care. ACP typically has many barriers in LTC, including staff discomfort, lack of initiative and reluctance from family members, and lack of available tools to support such discussions. The pamphlets provide a tool to initiate the discussion of end-of-life care and activate ACP.

Methods

Four LTC homes in Southern Ontario distributed the five different illness trajectory pamphlets using a wall display and targeted distribution to residents. The pamphlets were evaluated using a mixed methods research design. Short paper based evaluations (n = 57, response rate = 16.4% [57/348]) prompted residents and families to comment on both content-based criteria (i.e. clarity and relevance) and action-based criteria (i.e. activation of conversations with care providers). Pamphlets were also evaluated by residents and families via focus groups (4 resident focus groups, n = 36; 3 family focus groups, n=20).

Results

From April to September 2016, 212 pamphlets were used by residents and families; pamphlets addressing frailty (N=51) and dementia (N=58) were most commonly used, with heart failure (N=40), kidney disease (N=32), and lung disease (N=31) used less commonly. Survey and focus group findings suggested that the most helpful elements of the pamphlets included the signs and symptoms of advanced illness, the inclusion of suggestions for prompting questions and the web-based links. Focus group results reveal that residents and families stressed the importance of receiving the information in the illness trajectory pamphlet as early as possible. Residents and families also felt that it was essential that the pamphlets be easily accessible to residents (e.g., pamphlet displays on all floors/units). More than two-thirds of residents and family members were more comfortable with ACP issues after reading the pamphlets and approximately two-thirds of residents and family members initiated the ACP process by speaking to other family members about the content in the pamphlets. However, using pamphlets rarely activated self-reported advance care planning activities.

Conclusions

The results suggest that most residents and family perceived content as useful and would share it with others. Using the pamphlets also improved comfort in discussing values and care preferences about end-of-life care. Many residents and family/friends reported the intention to engage in future conversations about care.

Future Implications

Both French and English versions of the pamphlets are now available online as a PDF which can be printed and distributed in homes. In the future, alternate methods of pamphlet distribution and staff follow-up will be considered.