Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers

This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.     

Promoting health and wellbeing at the end of life: the contribution of care pathways

Enhancing end-of-life care (EoLC) is a core component of international governments' health policies. Across the globe, nurses make significant contributions to EoLC and, at this delicate time, have the power to positively influence the health and wellbeing of those facing death. Indeed, health promotion is a core component of the nurse's role. Originating in the UK, EoLC pathways have been adopted around the world. Their broad aim is to optimise the quality of the dying process, enabling people to 'die well' across care settings. This paper examines EoLC pathways in terms of promoting health and wellbeing in this discrete stage of the dying trajectory. Concepts of health and health promotion are described briefly and the idea of health-promoting palliative care and its association with a good death examined. The ensuing discussion relates to two EoLC documents. While acknowledging that much has been achieved it is argued that, despite the potential for promoting health and wellbeing, a professionally led, biomedical approach predominates, and in terms of promoting health and wellbeing at the end of life there is a pressing need for proactive advance care planning at an earlier point in the illness trajectory.     

Targeted therapy at the end of life in advanced cancer patients

Abstract Objective: We describe the use of systemic therapy in advanced cancer patients admitted to an acute care hospital, with a focus on targeted therapy. We aim to spotlight the utilization of targeted agents in the last months of life. Methods: Adult patients (N=252) with advanced solid tumors who died as inpatients in the National University Hospital, Singapore, were included in this retrospective study. Patients' demographic and clinical data were extracted from hospital records. Information on systemic therapy was extracted from the time of diagnosis and all other data limited to the last three months before death. Results: 187 adult patients received palliative systemic therapy from the time of diagnosis, of which 125 (66.8%) received it within three months of death. Of patients receiving only nontargeted systemic treatment (n=106), 60 (56.6%) and 26 (24.5%) received it within three months and one month of death respectively. Comparatively, 81 patients received palliative targeted systemic therapy, of which 65 (80.3%) and 40 (49.4%) had treatment within three months and one month of death respectively (p=0.001 and p<0.001). Targeted therapy was first initiated in the last three months of life in 38 patients. Oral agents targeting epidermal growth factor receptor (lung cancer patients) and vascular endothelial growth factor receptor (non-lung cancer patients) pathways were commonly employed. Lung cancer patients were more likely to have targeted therapy as their last line of systemic therapy: 26/54 lung cancer patients compared with 29/133 non-lung cancer patients (48.1% versus 21.8%, p<0.001). Conclusions: Targeted therapy is used in more than half of patients who received systemic therapy within three months of death. The degree to which these agents are being utilized near the end of life suggests the need to reexamine the risk/benefit profile of targeted therapy for this population, and the decision-making process around their use.     

Assessing quality of life of patients with advanced chronic obstructive pulmonary disease in the end of life

Given the limitations of existing health-related quality-of-life (QOL) measures in capturing the end-of-life experience of patients with advanced chronic diseases, an empirically grounded instrument, the quality-of-life concerns in the end of life questionnaire (QOLC-E), was developed. Though it was built on the McGill quality of life questionnaire (MQOL), its sphere is more holistic and culturally specific for the Chinese patients in Hong Kong. One hundred and forty-nine patients with advanced chronic obstructive pulmonary disease (COPD) or metastatic cancer completed the questionnaire. Seven factors (28 items) which emerged from the factor analysis were grouped into four positive (support, value of life, food-related concerns, and healthcare concerns) and four negative (physical discomfort, negative emotions, sense of alienation, and existential distress) subscales. Good internal consistency and concurrent validity were shown. The results also revealed that these two groups of patients had similar QOL concerns. The validity of applying QOLC-E as an outcome measure to evaluate the effectiveness of palliative and psychoexistential interventions has yet to be tested.     

Self care and end of life care in advanced cancer: Literature review

BackgroundSelf care is a key feature of health care policy in the UK. It has been suggested that self care by patients with cancer improves quality of life, symptom management, and patient satisfaction. However, little is known about self care and end of life care.ObjectivesThis review sets out to find out what is known about how people experiencing end of life care manage their illness themselves, in the advanced stages of their disease.MethodsA systematic review was conducted; searching key databases; extracting relevant literature, using RefMan, NVIVO; grading, analysing, and appraising the literature.ResultsEighteen articles were included in the review. Themes identified were; interventions for end of life care; self care behaviours used by patients; factors that prevent patients to self care.ConclusionThe nurses’ role in supporting self care for people with advanced cancer is important. The review identifies various ways nurses can empower patients to self care related to oncology.     

Spiritual care at the end of life

Spiritual care at the end of life focuses on integration and peacemaking for patients and their families. This article will discuss the work of "letting go" for patients, families, and staff as well. Addressing these tasks honors commitments to significant relationships, both personal and professional, and provides healing and closure. Critical care nurses provide spiritual care when they participate in activities as diverse as story telling, advocating for their patients' wishes, addressing suffering and pain. Caring for the dying requires competence in all aspects of end of life care and the ability to build trusting relationships.     

临终反向关怀在晚期癌症患者中应用的研究

目的 探讨临终反向关怀在晚期癌症患者中的应用.方法 选取2018年3月—2020年3月某市宁养院服务的临终患者60例,将不同病区治疗的患者分为对照组及试验组,每组各30例.对照组患者实施常规护理,试验组患者反向关怀干预,即临终患者作为主体对亲友、同事、照护工作者等客体做出的关心慰藉活动,干预时间1个月,比较两组临终患者...     

Family satisfaction with care provided by nurse practitioners to nursing home residents with dementia at the end of life

The purpose of this study was to examine family satisfaction with care provided by nurse practitioners (NP) to nursing home (NH) residents with dementia. A survey was mailed to 239 family members of nursing home residents who died with dementia. One open-ended question was added to provide comment about the care provided by the NP. A total of 131 surveys were returned (response rate 55%). The study revealed that 98% of family members agreed that they were satisfied with the end-of-life care provided by the NP. Survey responses were used to analyze the associations of communication, comfort, and satisfaction with NPs to total satisfaction with end-of-life care. Pearson's correlations demonstrated that overall satisfaction was significantly associated with NP-family communication, resident comfort, and satisfaction with NP care. Findings suggested that NPs using a model of care that emphasizes advance care planning, communication, and comfort results in high satisfaction of family members.     

Advance care planning: preferences for care at the end of life

Predictors of patient wishes and influence of family and clinicians are discussed. Research findings on patient decision-making relating to preferences in end-of-life care are described. Advance directives and durable powers of attorney are defined and differentiated. Most patients have not participated in advance care planning and the need for more effective planning is documented. Appropriate times for discussions of such planning are described. Scenarios discussed include terminal cancer, chronic obstructive pulmonary disease, AIDS, stroke, and dementia. Patient satisfaction is discussed, as is a structured process for discussions about patient preferences. Results of patient responses to hypothetical scenarios are described. Invasiveness of interventions, prognosis and other factors that favor or discourage patient preferences for treatment are discussed. Findings resulting from research funded by the Agency for Healthcare Research and Quality (AHRQ) are discussed. This research can help providers offer end-of-life care based on preferences held by the majority of patients under similar circumstances.     

Palliative care nursing: Ensuring competent care at the end of life

Major advances in enabling function and symptom management have occurred in the past decade. Older adults who would have been bed-bound at the end of life now can be offered interventions to help them live well until they die. People who once would have suffered from pain can expect to be kept comfortable with aggressive symptom management. Palliative care nursing is the art and science of quality end-of-life care. Appropriate interventions for competent palliative care often are not initiated for dying older adults and their families. Nursing professionals are beginning to assume leadership roles to ensure that comprehensive, holistic end-of-life care is available to all patients and families experiencing life-threatening progressive illnesses.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.     

Characteristics and quality of life of patients who choose home care at the end of life

Cancer patients with advanced disease and short-survival expectancy were given hospital-based advanced home care (AHC) or conventional care (CC), according to their preference. The two groups were compared at baseline to investigate whether there were differences between the AHC and the CC patients that may help explain their choice of care. The patients were consecutively recruited over 2½ years. Sociodemographic and medical data, and the health-related quality of life (HRQL) of the two groups were compared. HRQL was assessed using a self-reporting questionnaire, including the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), the Impact of Event Scale (IES), five questions about social support, and two items concerning general well-being. The AHC group showed significantly poorer functioning on all the EORTC QLQ-C30 scales and an overall higher symptom burden than the CC patients. Fewer of the AHC patients were receiving cancer treatment. The AHC patients had lived longer with their cancer diagnosis, had a significantly shorter survival after study enrollment, and a significantly poorer performance status. The major differences between the two groups seemed to be related to being at different stages in their disease. The results indicate that patients are reluctant to accept home care until absolutely necessary due to severity of functioning impairments and symptom burden. These findings should be taken into consideration in planning palliative care services.