Krawczyk Marian, Gallagher Romayne
Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, 588 - 1081 Burrard Street, Vancouver, BC, V6Z 1Y6, Canada.
Division of Palliative Care, UBC, Department of Family and Community Medicine, Providence Health Care, 1081 Burrard St., Vancouver, BC, V6Z 1Y6, Canada.
BMC Palliat Care. 2016 Jul 12;15:59. doi: 10.1186/s12904-016-0133-4.
This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care.
Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care.
Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die.
While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.
本文报告了“传达预后不确定性”这一概念，该概念源于一项混合方法调查，该调查要求家庭成员对医院临终关怀的七个领域的满意度进行排名。
在一项先前经过验证的关于家庭成员对临终关怀满意度的调查中嵌入了开放式问题。目的是用参与者自己的话来理解他们满意度的数字排名与护理体验之间的联系。
我们的研究发现，近一半的家庭成员希望获得更多关于护理可能结果的信息，包括了解患者“病得很重，可能会死”。预后不确定性往往传达得很差，甚至根本没有传达。不恰当的技巧包括信息被令人困惑的委婉语掩盖、提供不必要的虚假希望，以及信息与所提供的积极护理水平不一致。在极端情况下，这些技巧留下了不确定性和怀疑的遗留问题。家庭成员表达了对传达预后不确定性的挑战和益处的认识。最重要的是，那些承认自己会抗拒（或确实抗拒）知道患者病得很重可能会死的受访者，也表达了一种事后的理解，即他们本希望获得更多关于死亡是患者入院可能或很可能的结果的预后信息，并从中受益。报告讨论过预后不确定性的家庭成员也报告了高水平的有效沟通和对护理的满意度。他们还报告了知道患者病得很重可能会死的长期益处。
虽然病得很重可能会死的患者可能存活至出院，但在潜在的临终情况下与家庭成员预先告知有助于形成一种共同的、期望的预后意识，即患者已接近生命终点。
