Division of Rheumatology, Department of Medicine, Yong Loo Lin School of Medicine, National University of Singapore, NUHS, Level 10, NUHS Tower Block, 1E Kent Ridge Road, 119228 Singapore; Department of Medicine, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
Department of Supportive and Palliative Care, National Cancer Centre Singapore; Division of Palliative Care, Department of Haematology-Oncology, National University Cancer Institute, National University Health System, Singapore.
Semin Arthritis Rheum. 2019 Aug;49(1):156-161. doi: 10.1016/j.semarthrit.2018.10.020. Epub 2018 Nov 2.
To determine the extent of end-of-life suffering and predictors of high symptom prevalence in the last one year of life in patients with systemic rheumatic diseases (SRDs) and the extent of supportive care received.
We identified adult patients with SRDs who died between 1 April 2006 and 1 April 2016. We collected data within 1 year before their death, on the following: (i) cumulative symptom prevalence, (ii) rates of Advance Care Planning (ACP), Do-Not-Resuscitate (DNR) orders and referral to a palliative physician. We analyzed the predictors of total symptom prevalence and palliative physician referral.
Of the 161 patients studied, 34.2% had rheumatoid arthritis and 21.6% had systemic lupus erythematosus. Pain (81.4%), anorexia (80.1%) and dyspnea (77%) afflicted the majority of patients. On multivariate analysis, patients of the following profile had higher total symptom prevalence: (i) older age (β = 0.027, SE = 0.013, p = 0.044); (ii) more comorbidities measured by the Charlson Comorbidity Index (β = 0.192, SE = 0.159, p = 0.044); (iii) more admissions (β = 0.263, SE = 0.090, p = 0.004) and (iv) recurrent infections (β = 0.923, SE = 0.423, p = 0.031). Five patients (3.1%) received ACP and 25 (15.5%) were referred to a palliative physician. The median time between referral to palliative medicine and death was 8 days (IQR0-19). Of the 106 (67.5%) who had DNR orders, the median time between DNR and death was 3 days (IQR 0-10).
Palliative and supportive care is relevant to patients with SRDs at the end-of-life. These patients experienced high physical suffering, particularly those who were elderly, with more comorbidities, hospital admissions and recurrent infections. Rheumatologists and physicians caring for patients with SRDs must be empowered to provide supportive care to these patients at the last phase of life, particularly by facilitating early ACP.
确定在患有系统性风湿病（SRD）的患者生命的最后一年中临终痛苦的程度和高症状发生率的预测因素，以及接受支持性护理的程度。
我们确定了 2006 年 4 月 1 日至 2016 年 4 月 1 日期间死亡的成年 SRD 患者。我们在死亡前 1 年内收集了以下数据：（i）累积症状发生率，（ii）预先医疗指示（ACP）的制定率、不复苏（DNR）医嘱和转介给姑息治疗医生的比例。我们分析了总症状发生率和姑息治疗医生转介的预测因素。
在所研究的 161 名患者中，34.2%患有类风湿关节炎，21.6%患有系统性红斑狼疮。81.4%的患者有疼痛，80.1%的患者有厌食症，77%的患者有呼吸困难。多变量分析显示，具有以下特征的患者总症状发生率较高：（i）年龄较大（β=0.027，SE=0.013，p=0.044）；（ii）Charlson 合并症指数（β=0.192，SE=0.159，p=0.044）测量的合并症较多；（iii）更多的住院治疗（β=0.263，SE=0.090，p=0.004）和（iv）反复感染（β=0.923，SE=0.423，p=0.031）。5 名患者（3.1%）接受了 ACP，25 名患者（15.5%）被转介到姑息治疗医生处。从转介到姑息医学到死亡的中位数时间为 8 天（IQR0-19）。在 106 名（67.5%）有 DNR 医嘱的患者中，DNR 和死亡之间的中位数时间为 3 天（IQR 0-10）。
姑息治疗和支持性护理对 SRD 患者的临终关怀至关重要。这些患者经历了严重的身体痛苦，尤其是那些年龄较大、合并症较多、住院治疗和反复感染的患者。照顾 SRD 患者的风湿病医生和医生必须有能力为这些患者在生命的最后阶段提供支持性护理，特别是通过促进早期 ACP。
