McGill University School of Social Work, 3506 University St. #300, Montreal, QC, H3A 2A7, Canada.
Faculty of Health Sciences, School of Nursing, Health Sciences Centre, McMaster University, 1280 Main Street West, Hamilton, ON, 2J20L8S 4K1, Canada.
BMC Palliat Care. 2021 Jul 29;20(1):121. doi: 10.1186/s12904-021-00815-1.
While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication.
Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications.
58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses.
ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.
尽管预先医疗指示（ACP）已被证明可改善临终关怀的沟通和姑息治疗质量，但在长期护理（LTC）机构中很少实施，因为工作人员支持该过程的时间有限。本研究考察了向 LTC 居民分发公开可用的自我指导 ACP 工作簿以鼓励 ACP 反思和沟通的潜力。
招募工作于 2018 年 6 月至 2019 年 7 月在三家 LTC 机构进行。符合条件的居民必须具有医疗稳定性、认知能力和英语读写能力。该研究采用混合方法同时设计，结合对有记录的护理偏好和 ACP 反思和沟通的排名（定量）和开放（定性）工作簿回答进行检查。
最初有 58 名居民同意参与研究，其中 44 名完成了自我指导的 ACP 工作簿。我们的综合定量和定性结果表明，工作簿支持了对与临终关怀计划和决策相关的一系列居民护理偏好的启发。例如，排名数据突出表明，大多数居民希望参与与他们的护理有关的决策（70%），尽管不到一半的居民期望他们的意愿在没有酌情处理的情况下得到应用（48%）。排名数据进一步显示，许多居民重视生活质量而不是生命数量（55%），但少数人担心他们在临终时不会得到足够的护理（20%）。开放评论通过捕捉在排名数据中未探讨的护理偏好，如对精神护理和死后计划的偏好，肯定并扩展了排名数据。对所有开放评论的分析还表明，尽管工作簿引起了许多可以轻易传达给家人/朋友或工作人员的反思，但在记录的工作簿回答中，对话发生的证据则不太明显。
ACP 工作簿可能有助于支持在 LTC 中引出居民的护理偏好和关注。制定后续协议，支持居民将其工作簿回答传达给家人/朋友和工作人员，可能是提高 LTC 中 ACP 参与度的关键下一步。此类协议将需要工作人员培训和赋予各级工作人员与居民进行后续对话权力的组织文化。
