Candrian Carey, Tate Channing, Broadfoot Kirsten, Tsantes Alexandra, Matlock Daniel, Kutner Jean
Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, CO 80045, USA.
The Adult and Child Consortium for Outcomes Research and Delivery Science, Department of Medicine, University of Colorado School of Medicine, Aurora, CO 80045, USA.
Behav Sci (Basel). 2017 Apr 18;7(2):22. doi: 10.3390/bs7020022.
Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual's acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG) entitled "Hospices should improve their election statements and certifications of terminal illness" called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the choice patients make to forego aggressive treatment measures when they enroll in hospice. In a literal sense, to enroll in hospice means to bring in support for end-of-life care. It means to identify the need for expertise around symptom management at end-of-life, and agree to having a care team come and manage someone's physical, psychosocial, and/or spiritual needs. As with all care, hospice can be stopped if it is no longer considered appropriate. To uncover the communication tensions undergirding a hospice admission interaction, we use Street's ecological theory of patient-centered communication to analyze a case exemplar of a hospice admission interaction. This analysis reveals diverse points of struggle within hospice decision-making processes around hospice care and the need for communication techniques that promote trust and acceptance of end-of-life care. Lessons learned from talking about hospice care can inform other quality initiatives around communication and informed decision-making in the context of advance care planning, palliative care, and end-of-life care.
在生命末期，临终关怀可减轻与症状相关的痛苦并减少住院次数，同时改善照护效果。然而，一个人要充分了解临终关怀并决定登记加入需要时间。这一决定受到对临终关怀及其服务的了解、情感与恐惧、文化和宗教信仰以及个人对诊断的接受程度的影响。临终关怀入院互动是影响临终关怀决策的关键因素，尤其发生在疾病发展轨迹的后期，且往往复杂、不可预测且差异很大。这些互动的一个目标是确保患者和家属获得有关临终关怀的准确清晰信息，以便做出明智的决定。各临终关怀机构在征得患者同意方面的做法不一致，以至于监察长办公室（OIG）2016年的一份题为《临终关怀机构应改进其临终声明和绝症认证》的报告呼吁提供完整准确的临终声明，以确保临终关怀患者及其照护者能够做出明智的决定，并了解选择临终关怀的成本和收益。初次入院时提供的信息是否完整准确能改善互动和结果尚不清楚。我们最近对患者、照护者和临终关怀护士之间互动的定性研究发现了不同且往往存在分歧的利益相关者特定期望和看法，如果不加以解决，可能会产生不一致并阻碍决策。本文着重更好地理解临终关怀入院互动中涉及的沟通动态和做法，以便设计更有效的互动，并支持监察长办公室的要求，即向临终关怀患者及其照护者提供准确完整的信息。在讨论临终关怀的非治愈性质以及患者在加入临终关怀时选择放弃积极治疗措施时，这种清晰性尤为重要。从字面意义上讲，加入临终关怀意味着引入临终照护的支持。这意味着确定在生命末期对症状管理专业知识的需求，并同意让一个照护团队来满足某人的身体、心理社会和/或精神需求。与所有照护一样，如果不再认为合适，临终关怀可以停止。为了揭示临终关怀入院互动背后的沟通紧张关系，我们运用斯特里特以患者为中心的沟通生态理论来分析一个临终关怀入院互动的案例样本。这一分析揭示了临终关怀决策过程中围绕临终关怀的不同斗争点，以及对促进对临终照护的信任和接受的沟通技巧的需求。从谈论临终关怀中学到的经验教训可为其他围绕预先护理计划、姑息治疗和临终关怀背景下的沟通及明智决策的质量改进举措提供参考。
