Fagan Norah, Davies Andrew, Foley Geraldine
Academic Department of Palliative Medicine, Our Lady's Hospice and Care Services, Dublin, Ireland.
School of Medicine, Trinity College Dublin, Dublin, Ireland.
Palliat Med Rep. 2024 Sep 30;5(1):417-424. doi: 10.1089/pmr.2024.0047. eCollection 2024.
Caregivers in palliative care are tasked with supporting the patient in decision-making about treatment and care. However, how patients and their caregivers in palliative care support one another in the decision-making process is not fully understood.
To decipher how patients and caregivers in specialist palliative care support one another in decision-making about patient treatment and care.
A qualitative study comprising semi-structured interviews. Data were thematically analyzed.
SETTING/PARTICIPANTS: Eleven patient-caregiver dyads ( = 22) were recruited from a large regional hospice service in Ireland providing specialist palliative care.
Patients and caregivers felt they supported one another in decision-making by providing emotional support and coping as a unit. Open communication coupled with an understanding of each other's preferences helped patient-caregiver dyads navigate decision-making about the patient's treatment and care. Patients who made decisions independent of their caregiver did so to alleviate the burden for the caregiver and because they valued having control in decision-making about their care. Trust between the patient and caregiver made patients feel able to make decisions without counsel from their caregiver. Caregivers who advocated on behalf of the patient tended to make decisions with the patient. Shared decision-making comprised patient and caregiver making decisions together as a team with the opportunity to collectively re-examine and adjust their preferences for treatment and care.
This study identified that patients and caregivers in specialist palliative care can be emotionally supportive of one another in situations where they make decisions together about care and in situations where the patient makes decisions about care independent of their caregiver. These findings are relevant for health care professionals in palliative care who seek to promote emotional support between the patient and caregiver in discussions about treatment and care.
姑息治疗中的护理人员负责支持患者进行治疗和护理决策。然而，姑息治疗中的患者及其护理人员在决策过程中如何相互支持尚未得到充分理解。
解读专科姑息治疗中的患者和护理人员在患者治疗和护理决策中如何相互支持。
一项包括半结构化访谈的定性研究。对数据进行了主题分析。
设置/参与者：从爱尔兰一家提供专科姑息治疗的大型地区临终关怀服务机构招募了11对患者-护理人员（n = 22）。
患者和护理人员认为，他们通过提供情感支持并作为一个整体应对来在决策中相互支持。开放的沟通以及对彼此偏好的理解有助于患者-护理人员二元组在患者的治疗和护理决策中找到方向。独立于护理人员做出决策的患者这样做是为了减轻护理人员的负担，并且因为他们重视在自己护理决策中拥有控制权。患者和护理人员之间的信任使患者感到能够在没有护理人员建议的情况下做出决策。代表患者主张的护理人员倾向于与患者共同做出决策。共同决策包括患者和护理人员作为一个团队一起做出决策，并有机会集体重新审视和调整他们对治疗和护理的偏好。
本研究发现，专科姑息治疗中的患者和护理人员在共同做出护理决策以及患者独立于护理人员做出护理决策的情况下，能够在情感上相互支持。这些发现与姑息治疗中的医疗保健专业人员相关，他们试图在关于治疗和护理讨论中促进患者和护理人员之间的情感支持。
