Stocker Rachel, Close Helen, Hancock Helen, Hungin A Pali S
School of Medicine, Pharmacy and Health, Durham University, Stockton-on-Tees, UK.
BMJ Support Palliat Care. 2017 Dec;7(4):464-469. doi: 10.1136/bmjspcare-2016-001286. Epub 2017 Jul 21.
Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF.
We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers.
Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians.
This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.
众所周知，临终时心力衰竭（HF）护理的沟通与规划十分复杂。对于姑息性评估和沟通需求的患者体验如何随时间变化，以及这如何为管理提供信息，我们知之甚少。我们的目的是探讨心力衰竭患者给予或接受预后及晚期姑息治疗规划（ACP）的体验。
我们开展了一项纵向扎根理论研究，对14名临床医生（初级和二级护理）进行了深入访谈，并观察了门诊和家访，随后对13名心力衰竭患者和9名护理人员进行了一系列访谈。
总体而言，尽管疾病阶段和需求随时间明显恶化，但大多数参与者拒绝将心力衰竭视为绝症，而倾向于关注日常管理和维持。临床医生对心力衰竭预后的不确定性表示沮丧，这导致规划困难。其他人强调需要提供基于问题的个性化护理，但有时感到受到缺乏多学科ACP的限制。患者报告称未与临床医生进行预后讨论。
这是第一项探索心力衰竭各个阶段预后沟通体验的研究。研究结果对心力衰竭作为绝症这一概念的实际效用提出了质疑，并对未来心力衰竭护理路径的发展产生影响。研究结果支持采用基于问题的管理方法，该方法认识到日常功能对患者和护理人员的重要性以及ACP的机会。
