Degenholtz Howard B
Health Policy and Management, Center for Bioethics and Health Law, Graduate School of Public Health, University of Pittsburgh , Pittsburgh, USA.
J Gerontol Soc Work. 2021 Jan-Feb;64(1):8-20. doi: 10.1080/01634372.2020.1864799. Epub 2021 Jan 3.
Rosalie Kane made major contributions to research on ascertaining personal preferences. Her work influenced others and was part of a growing movement to place high priority on the voice and subjective experience of people who live with Long-Term Services and Supports (LTSS). This essay summarizes some highlights of Rosalie's research, and traces the idea of incorporating participant preferences through different programs, policies and measurement tools over the past three decades. The current policy environment takes as paramount the notion that participants in LTSS programs should have an active role in planning their own care. While language supporting preferences is not new, the technology to effectively and efficiently elicit preferences is relatively recent. Key milestones in the development of these policies are reviewed. Rosalie's influence on generations of researchers and policy makers cannot be understated. She challenged colleagues, state program agencies and program directors to consider "the art of the possible," pushing them to explore how LTSS could fully support the dignity, independence and autonomy of every participant. A remaining challenge for researchers, policy makers and program managers is to move beyond incorporating preferences and choices as outcomes, and develop methods to accountably and reliably measure and incorporate individual goals of care into LTSS care plans. As LTSS continues to shift more and more into home and community-based settings, the quality of care and the quality of life for people who rely on those services will demand more subtle and individualized measures of processes and outcomes.
罗莎莉·凯恩在确定个人偏好的研究方面做出了重大贡献。她的工作影响了其他人，并且是日益壮大的运动的一部分，该运动高度重视长期服务与支持（LTSS）接受者的声音和主观体验。本文总结了罗莎莉研究的一些亮点，并追溯了在过去三十年中通过不同的项目、政策和测量工具纳入参与者偏好的理念。当前的政策环境将LTSS项目参与者应在规划自身护理中发挥积极作用这一观念置于首要位置。虽然支持偏好的表述并不新鲜，但有效且高效地引出偏好的技术相对较新。本文回顾了这些政策发展中的关键里程碑。罗莎莉对几代研究人员和政策制定者的影响不可低估。她向同事、州项目机构和项目主任提出挑战，要他们考虑“可能性的艺术”，促使他们探索LTSS如何能够充分支持每一位参与者的尊严、独立性和自主性。研究人员、政策制定者和项目管理者面临的一个尚存挑战是，要超越将偏好和选择作为结果纳入考量的范畴，开发出有责任且可靠地衡量并将个体护理目标纳入LTSS护理计划的方法。随着LTSS越来越多地转向居家和社区环境，依赖这些服务的人们所接受护理的质量以及生活质量将需要对过程和结果进行更细致且个性化的衡量。
