Quality of life of cancer patients receiving inpatient and home-based palliative care

AIMS: This paper reports a comparative study of the symptom experience, physical and psychological health, perceived control of the effects of cancer and quality of life of terminally ill cancer patients receiving inpatient and home-based palliative care, and the factors that predict quality of life. BACKGROUND: Quality of life is a major goal in the care of patients with terminal cancer. In addition to symptom management, psychological care and provision of support, being cared for at home is considered an important determinant of patient well-being. A more comprehensive understanding of the impact of cancer on patients and their families will inform the delivery of palliative care services. METHODS: Fifty-eight patients with terminal cancer (32 inpatients, 26 home-based) were recruited from major palliative care centres in Australia in 1999. A structured questionnaire designed to obtain sociodemographic information, medical details and standard measures of symptoms, physical and psychological health, personal control and quality of life was administered by personal interview. RESULTS: The two groups were similar on most demographic measures, although more home-care patients were married, of Australian descent and had private health insurance cover. The most prevalent symptoms reported were weakness, fatigue, sleeping during the day and pain. Patients receiving home-based services had statistically significantly less symptom severity and distress, lower depression scores, and better physical health and quality of life than those receiving inpatient care. Home-care patients also reported statistically significantly more control over the effects of their illness, medical care and treatment received, and the course of the disease. Multiple regression analyses showed that better global physical health, greater control over the effects of cancer and lower depression scores were statistically significant predictors of higher quality of life. CONCLUSIONS: The main issues arising from the findings for nurses are the early detection and management of both physical and psychological symptoms, particularly fatigue, pain, anxiety and depression, and the need to use strategies that will empower patients to have a greater sense of control over their illness and treatment. Research is needed to identify other factors that may impact on quality of life, and to establish the extent to which inpatient and home-based care meets the needs of both the patient with terminal cancer and their family.     

Using satisfaction to measure the quality of palliative care: a review of the literature

BACKGROUND: The advent of clinical governance in British health policy has placed increased demands on health care providers and practitioners to ascertain the quality of their services. Traditional indicators of quality of health care, such as death or recovery rates, are not appropriate in palliative care. Thus, it is important to establish alternative approaches to measuring the quality of palliative care services and interventions. AIMS: Satisfaction levels have been used widely in palliative care to assess quality. A literature review was conducted which aimed to explore the strengths and weaknesses of using satisfaction as an indicator of the quality of palliative care services. It also aimed to provide a solid basis upon which further work could be built. METHODS: Five electronic databases were searched using key words and phrases and key authors. Hand searches were conducted of four journals that contributed significantly to the concept of satisfaction, and reference lists of reviewed papers were scrutinized. Relevant papers were reviewed, data were extracted and these data were thematically analysed. FINDINGS: There are a number of important unresolved issues in the literature with regard to using satisfaction as an indicator of the quality of palliative care services. First, few alternatives to satisfaction are available. Secondly, satisfaction is under-theorized and no widely accepted definition exists. Thirdly, there are methodological inconsistencies across studies. It is important to take into account these findings when planning and implementing change following service evaluation using satisfaction as a measure. CONCLUSIONS: Relying on findings of satisfaction surveys to determine clinical and policy amendments in palliative care may not result in improvements in overall quality of care. Using satisfaction as a method of assessing the quality of health care services is particularly problematic and requires further investigation in both practical and conceptual terms.     

Factors associated with lower quality of life among patients receiving palliative care

Title.  Factors associated with lower quality of life among patients receiving palliative care.
Aim.  This paper is a report of a study conducted to (1) assess the quality of life (QoL) and physical functioning status of patients diagnosed with advanced cancer and receiving palliative care; (2) determine if there was a statistically significant relationship between their physical functioning and QoL and (3) identify the demographic and disease-related variables related to their QoL.
Background.  Achieving the best possible QoL is a major goal in palliative care. However, research findings about the relationship between QoL and demographic variables have been inconsistent.
Method.  Three hundred patients with advanced cancer were recruited from four district hospitals in Hong Kong between February 2005 and July 2006. Their QoL and physical functioning status were assessed by face-to-face interview, using the McGill Quality of Life Questionnaire (Hong Kong version) and the Palliative Performance Scale respectively.
Results.  Participants reported reduced ambulation, inability to perform hobbies or housework, and the need for occasional assistance in self-care (mean: 64·6 out of 100, sd : 19·3, range: 20–100). QoL was fair (mean: 6·2 out of 10, sd : 1·5, range: 0·9–10). There was a weak positive association between physical functioning and QoL scores. Multiple regression analysis showed that patients who were older, female, had ever been married, or had higher physical functioning tended to have better QoL.
Conclusion.  More could be done in symptom and psychosocial management to improve patients' QoL, in particular for those who are younger, male or single, or who have lower physical functioning.     

Assessing agreement between terminally ill cancer patients' reports of their quality of life and family caregiver and palliative care physician proxy ratings

Context

Proxy ratings, if valid, may provide an alternative approach to evaluating patient quality of life (QoL) at the end of life.

Objectives

To examine agreement between terminally ill cancer patients’ self-reported QoL and proxy assessment of patient QoL by their family caregiver (FCG) and palliative care physicians (PCPs) at two time points.

Methods

Patients admitted to an acute palliative care unit and their FCGs and PCPs completed the McGill Quality of Life Questionnaire (MQOL) at Days 3 and 6 after admission. Response bias and response precision were examined at the individual and group levels. Furthermore, we examined patient factors affecting agreement and responsiveness of proxy MQOL scores to changes in patients’ QoL between Days 3 and 6.

Results

Statistically and clinically significant mean differences were detected between the patient and both proxy groups’ reports of QoL on Day 3, with the magnitude of the differences decreasing somewhat by Day 6. Proxies underestimated patients’ QoL compared with patients' self-report. Response precision based on intraclass correlation values and proportion of approximate agreement was poor to fair at both time points. Agreement was better for patients with greater physical burden and more cognitive difficulties. Proxies' responsiveness to change from Day 3 to Day 6 was low, and proxies were not able to detect minimally important changes in QoL.

Conclusion

The findings suggest that moderate agreement between patient and proxy ratings of QoL develops over time but that precision at the individual level, which is more clinically relevant, is less reliable. New strategies for improving proxy reliability are needed.     

舒缓疗护模式结合人生回顾干预对癌症晚期患者应对方式、心理状态及生活质量的影响

目的 探讨舒缓疗护模式结合人生回顾干预对癌症晚期患者应对方式、心理状态及生活质量的影响.方法 选取2018年10月至2020年10月收治的70例晚期癌症患者为研究对象,采用抽签法将其随机分为对照组和观察组,各35例.对照组采用常规护理,观察组在常规护理基础上应用舒缓疗护模式结合人生回顾干预,比较两组的干预效果.结果 干...     

Exploring community nurses' perceptions of life review in palliative care

Aims and objectives. This exploratory study aimed to identify community nurses’ understanding of life review as a therapeutic intervention for younger people requiring palliative care. The objectives set out to: (i) Describe the participants’ understanding of reminiscence and life review (ii) Detail their current ideas regarding a structured approach to using life review in the community setting. (iii) Outline their understanding of the possible advantages and limitations of life review in relation to palliative care. (iv) Identify future training requirements. Background. The literature review illustrated how the eighth developmental stage of Erikson's theory, ego‐integrity vs. despair, is a ‘crisis’ often faced by older people entering the final stage of life. Life review is considered a useful therapeutic intervention in the resolution of this crisis. Younger terminally ill people in the palliative stage of an illness may face the same final crises due to their reduced lifespan. Therefore, this study explored the benefits and limitations of life review as an intervention in palliative care. Method. The study used a purposive sample of community nurses responsible for delivering generic and specialist palliative care. A qualitative method of data collection in the form of three focus group interviews was used. Subsequent data were manually analysed, categorized and coded with associations between the themes identified. Results. The findings suggested that community nurses have limited knowledge pertaining to the use of life review and tend to confuse the intervention with reminiscence. Furthermore, they believed that life review could potentially cause harm to practitioners engaged in listening to another person's life story. However, the participants concur that with appropriate training they would find life review a useful intervention to use in palliative care. Conclusions. The results led to the identification of a number of key recommendations: Community nurses require specific education in the technicalities of life review and additional interpersonal skills training. The need for formalized support through clinical supervision is also recognized and discussed. Finally, suggestions are offered regarding the need to generate wider evidence and how, possibly, to integrate life review into existing palliative care services. Relevance to clinical practice. This study has demonstrated that community nurses are keen to extend the support offered to younger terminally ill people who are in the palliative stage of their illness. Despite having limited knowledge of life the main components and underpinning theory pertaining to life review participants could appreciate the potential of life review as a therapeutic intervention in palliative care and were keen to learn more about its use and gain the necessary knowledge and skills.     

姑息治疗提高晚期癌症患者生活质量

目的:探讨应用姑息治疗对提高晚期癌症患者生活质量(qualityoflife,QOL)的影响。方法:对96例晚期癌症患者进行姑息治疗,采用QOL观察指标对本组病例治疗前、后评分,将QOL分为好≥41分;中21～40分;差≤20分共3个等级进行评估。结果:本组病例QOL评分,治疗前≤40分、治疗后≥41分者为71例;治疗前≤20分、治疗后≥21分者为12例;治疗前后无效者13例。QOL提高者占86%,无效为14%。结论:姑息治疗能提高晚期癌症患者的QOL。     

姑息性护理在肺癌病人癌因性疲乏的应用进展

介绍姑息性护理和癌因性疲乏的概念,阐述肺癌病人癌因性疲乏的状况,分析癌因性疲乏对肺癌病人的影响,以及姑息性护理在肺癌病人癌因性疲乏中的应用,为国内学者更好地认识和评价姑息性护理及肺癌病人的癌因性疲乏,为不断提高肺癌病人的生活质量作为参考。     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Morphine is not the only analgesic in palliative care: literature review

BACKGROUND: No comprehensive review has been published to date, which provides information for nurses on pharmaceutical alternatives to morphine in palliative care. As nurses are often the health professional most involved with terminally ill patients, there is a clear need for a review of current practices which is accessible to nurses. AIM: The aim of this review is to examine the pharmaceutical alternatives to morphine use in palliative care that are currently available. METHODS: Searches were made of the CINAHL and MEDLINE databases for articles published between 1990 and 2000, using the keywords 'pain management', 'cancer pain' and 'morphine'. FINDINGS: Most evidence on the use of pharmaceutical alternatives to morphine is anecdotal, demonstrating a need for more research to be conducted in this field. Evidence presented in this review shows encouraging results following the administration of methadone, fentanyl or ketamine to patients with difficult pain problems. CONCLUSION: Nurses need to be aware of treatment options that may benefit patients with difficult pain problems. Although positive experiences have been documented when using alternatives to morphine, more research must be conducted to allow practitioners to add more pharmaceutical alternatives to their pain management armouries.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

Quality of life in newly diagnosed cancer patients

The aim of this study was to examine which domains of quality of life are most strongly affected in patients with newly diagnosed cancer, and to examine if quality of life was related to gender, age, educational level, cohabitation, time since diagnosis, treatment or type of cancer in these patients. Ferrans and Powers Quality of Life Index and the Cancer Rehabilitation Evaluation System, short form, were completed by 131 newly diagnosed Norwegian adult cancer patients. The patients had different cancer diagnoses, with breast cancer being the most common type. None of them were terminally ill, and 80% had been diagnosed within the last 6 months. The patients turned out to be satisfied with their lives, especially with the family and marital domains. They were least satisfied with health, functioning and sex life. Analyses of variance and multiple regression analysis were conducted to examine the impact on quality of life of cohabiting, age, gender, educational level, cancer diagnosis, treatment and time since diagnosis. Those cohabiting had significantly higher quality of life compared with those living alone. In contrast the younger group (19-39 years) living alone had significantly lower quality of life than the older groups living alone. Although age was only significantly associated with quality of life in one sub-scale, the elderly people reported their quality of life to be better in almost all sub-scales. Time since diagnosis was not associated with quality of life, while treatment was associated with quality of life as measured by Ferrans and Powers Quality of Life Index. Gender and educational level were only associated with one or two domains in quality of life, respectively.     

姑息护理对住院癌症患者生活质量的影响

目的:探讨姑息护理对住院癌症患者生活质量的影响。方法:将420例入选癌症患者随机分为研究组和对照组各210例,对照组给予常规治疗护理,研究组由姑息护理小组实施姑息护理。问卷调查和评定两组患者入组前和入组1个月后的生活质量。结果:研究组住院后1个月生活质量明显优于入组前,且优于对照组(P<0.01)。结论:姑息护理有效提高了癌症患者的生活质量。     

尊严疗法在晚期癌症患者中应用的研究进展

随着医学技术的发展,癌症患者的生命终末期可能延长,但并未明显成功提高癌症的治愈率[1]。晚期癌症患者生命的延长,患者身体机能日益衰退,生存质量日益下降,对照顾者的生活依赖程度愈加强烈。同时患者的隐私不受保护,自我价值逐渐丧失,从而使患者的自尊心下降、尊严受损[2]。研究报道[3],我国晚期癌症患者的尊严丧失率53.3%~63.3%,较CHOCHINOV等[4]报道的5.3%~7.5%高。尊严作为安宁疗护的哲学基础,是患者心理健康的重要组成部分[5],但我国安宁疗护重在改善患者的躯体症状和疼痛控制,对心理支持方面相对欠缺[6]。CHOCHINOV等[7]于2005年在尊严模型为理论框架的基础上提出尊严疗法。尊严疗法作为安宁疗护中一种较新颖的心理干预方法,在改善尊严感、心理健康和整体生化质量方面显示出较好的效果[8]。国外对尊严疗法的研究已较成熟,但在我国还处于初级探索阶段,因此本研究对尊严疗法展开综述,以期为临床护理提供参考,现报道如下。