Litzelman Debra K, Cottingham Ann H, Griffin Wilma, Inui Thomas S, Ivy Steven S
Department of Medicine,Indiana University School of Medicine,Indianapolis,Indiana.
Indiana University Health,Methodist Palliative Care,Indianapolis,Indiana.
Palliat Support Care. 2016 Dec;14(6):641-651. doi: 10.1017/S1478951516000353. Epub 2016 Jun 20.
Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life.
Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care.
Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice.
Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for "sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.
尽管患者希望参与有关其临终关怀的讨论和决策,但研究表明,医疗服务提供者常常未能邀请他们探讨高级护理偏好或生活目标。我们示范项目的目的是为印第安纳州的个人、医疗服务提供者和组织提供教育与指导,以促进这些对话,记录并尊重个人在生命最后阶段的生活目标和护理偏好。
教育与培训让社区成员以及医疗服务提供者做到:(1)提高参与者在讨论临终问题时的舒适度和便利性;(2)增进对医疗选择的了解,包括姑息治疗和临终关怀;(3)让所有参与者做好准备,去探索并记录个人价值观、生活目标、优先事项以及护理目标。
在2013年1月至2015年6月期间,该团队对近5000名参与者进行了培训。参与者对教育活动质量和感知有用性的评分在4至5分之间(采用5分制,5分为最有效)。参与者的评论绝大多数是积极的,并表示打算将预先护理计划资源、沟通技巧、姑息治疗和临终关怀知识以及个人更新技巧付诸实践。
通过将这些对话重新定义为确定护理目标和在生命重要阶段好好生活的优先事项,促进了参与者推进预先护理计划、讨论姑息治疗和临终对话的积极性。成功策略包括帮助医疗服务提供者和患者对“维持希望”采用更广泛的含义(不是为了治愈,而是为了参与高度重视的活动),培养医疗服务提供者的沟通技巧并使其在发起潜在困难讨论时感到自在,引入一支新的社区卫生工作队伍,他们将在居家服务中与患者建立信任关系,以及促进姑息治疗提供者的自我意识和自我护理。