Sources of Palliative Care Knowledge Among Patients With Advanced or Metastatic Gynecologic Cancer

ContextA minority of patients with advanced or metastatic gynecologic cancer utilize palliative care and lack of knowledge may be a barrier to receiving palliative care services.ObjectivesTo identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.MethodsPatients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.ResultsOf the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about palliative care (P = 0.35) and palliative care utilization (P = 0.81) did not differ by awareness of palliative care.ConclusionMost women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.     

Paediatric palliative care in Malaysia: Survey of knowledge base and barriers to referral

Abstract

Background

Paediatric palliative care in Malaysia is underdeveloped, but there is recent increasing awareness and interest in this speciality. In September 2012, the Health Minister of Malaysia launched an initiative to support a nationwide provision of this service.

Aim

This study aims to explore the knowledge and practice of healthcare providers and their barriers to referral for palliative care prior to development of a nationwide service.

Design

Self-administered questionnaire survey.

Participants

Hospital-based paediatricians and paediatric nurses.

Results

There were 292 participants (69 paediatricians). The majority (92.7%) were females and the median age for the paediatricians and nurses was 37 years (range 27–60) and 31 years (range 21–58), respectively. General paediatrics was the predominant speciality of the respondents (61.3%) and 59.3% had more than 5 years paediatric experience. Of the 28.8% of the responders who thought they have basic palliative care knowledge, 40.5% believed morphine used in palliative care is addictive, 34.9% thought palliative care hastens death, and 44.3% were neutral or agreed that palliative care is associated with euthanasia. Over a quarter of all respondents (28.2%) professed to be confident in providing palliative care and 30.1% were confident in providing bereavement support. Of the 29% paediatricians confident in providing palliative care, less than half were confident of controlling pain or dyspnoea at end-of-life. The most common perceived barrier to referral by paediatricians (79.4%) was the lack of accessible palliative care services.

Conclusion

There is a lack of knowledge and understanding of palliative care among healthcare providers. Focused training and supportive policies are necessary to develop this service in Malaysia.     

Registered nurses’ knowledge,attitudes and beliefs about end-of-life care in non-specialist palliative care settings: A mixed studies review

AimThe aim of this study was to describe, evaluate and synthesise the literature on registered nurses’ knowledge, attitudes and beliefs towards end-of-life care in adult non-specialist palliative care settings.BackgroundLittle is known about the knowledge, attitudes and beliefs of Registered Nurses working in non-specialist palliative care settings about end-of-life care.DesignA mixed-methods systematic review and narrative synthesis was conducted (PROSPERO Registration No: CRD4202148114). Five databases (Medline, CINAHL, PubMed, PsycINFO and Web of Science) were searched from inception to August 2020. Study quality was assessed using the Mixed Methods Appraisal Tool.ResultsNineteen studies met the inclusion criteria. Registered nurses in non-specialist palliative care settings demonstrated good knowledge of pain symptoms and management and positive attitudes towards caring for dying patients and their families. Knowledge deficits were identified in the psychosocial and spiritual aspects of end-of-life care and registered nurses reported negative attitudes towards communication about death. Only five of the included studies explored registered nurses’ beliefs towards end-of-life care.ConclusionsThere is a need to enhance palliative care education in clinical practice settings and in undergraduate programs to improve registered nurses’ knowledge, attitudes and beliefs about end-of-life care. Future studies that use reliable and validated methods to measure registered nurses’ beliefs about end-of-life care should be conducted.Tweetable abstractRNs in non-specialist palliative care settings want more education on pain management & greater knowledge on communicating about death/dying.     

What indicators are measured by tools designed to address palliative care competence among ‘generalist’ palliative care providers? A critical literature review

Abstract

Background

There is growing evidence that generalists may lack skills and knowledge in palliative care provision. This has led to consideration of what the core competencies for palliative care provision among generalists should be.

Aim

The objective of this review was to present the best available evidence related to indicators of competence in palliative care provision.

Method

A systematic review of both qualitative and quantitative literature was undertaken. Medline, Medline in Progress, PubMed and CINAHL databases with additional hand searches of Journal of Palliative Care, Palliative Medicine, and the International Journal of Palliative Nursing were undertaken for the period 1990–2010. Hawker et al.'s checklist was utilized to select and assess data.

Results

Nineteen of the 1361 articles met the inclusion criteria. The reviewed articles suggest a number of indicators of palliative care competence including: medical knowledge/skills, perceptions of knowledge/skills, confidence in palliative care skills, attitudes/opinions towards palliative care, and experience in palliative care delivery. None of the reviewed research provided definitive evidence as to which indicators best reflect competency to practice.

Conclusion

Multiple approaches, combined in a strategy of triangulation, must be incorporated in any appraisal in order to successfully measure palliative care competence.     

Do patients know their diagnosis of cancer?

Abstract

Aims: Patients' lack of knowledge about their diagnosis still exists. We aimed to examine whether, in our population, the patients' age, marital status, level of education, occupation, gender and diagnosis influence their knowledge of their diagnosis. Additionally we aimed to see if knowing their diagnosis affected their QoL.

Patients and Methods: We used a sociodemographic questionnaire and the EORTC (European Organization for Research and Treatment of Cancer, Study Group on Quality of Life) QLQ-C30 (Quality of Life Questionnaire of cancer) to obtain information about the total QoL Score.

Results: We found that in a total of 238 cancer patients, 163 patients knew that they had cancer or a tumour, and 75 did not. We observed statistically significant differences between the ages, the education level, the occupation (employed/unemployed), and the diagnosis of those patients that knew their diagnosis from those that did not. For the variables total of QoL Score, marital status and gender we did not observe statistically significant differences between the patients that knew their diagnosis and those that did not. The association between knowledge of diagnosis and occupation was very small as was the association between knowledge of diagnosis and diagnosis. The association between knowledge and age was moderate and between knowledge and education was small.

Conclusions: In our sample, knowledge was influenced by age (older, less knowledge), education level (less years, less knowledge), diagnosis (prostate cancer had more patients that did not know their diagnosis) and occupation. Knowing their diagnosis did not diminish patients' QoL.     

Disgusting Patients

Abstract

This paper reviews discussions and draws conclusions from a seminar run by the Children's Hospice Association Scotland which focused on the challenges facing young adults with life-limiting conditions. It reflects on the significant developments in the care of life-limited children, the result of which is some living much longer that expected. Despite developments in policy and guidance available to health- and social-care professionals, many young adults and their families continue to report a lack of appropriate services when they move into the world of adult care. Some services such as physiotherapy stop and care become fragmented across many adult specialties. Traditional hospice care approaches to the care of this group were challenged by the view that young people with a disability should be treated in the same way as their peers. The risk of focusing on the life-limiting aspect of their condition reduces young adults’ ability to make independent choices about their lives and to plan for the future, resulting in a poorer quality of life. Conclusions from the day were that despite much discussion over many years about transition, there is still much to be done to address the needs of this particular group. Young adults with life-limiting conditions and their families must be supported to plan ahead and to develop skills to enable them to become more independent. Organizations must work together to deliver a choice of care options and seamless transition from paediatric to adult services for young people with a life-limiting condition.     

Palliative care for frail older people: A cross-sectional survey of patients at two hospitals in England

Abstract

Background

The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals.

Objective

To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group.

Methods

A cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need.

Subjects

Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years.

Results

Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%).

Conclusions

While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework.     

The HPV vaccine: knowledge and attitudes among public health nurses and general practitioners in Northern Norway after introduction of the vaccine in the school-based vaccination programme

Objective: To investigate knowledge of and attitudes to human papillomavirus (HPV) infection, HPV vaccination, cervical cancer, related sources of information and factors associated with willingness to vaccinate one’s own daughter among primary health care (PHC) personnel.

Design: Cross-sectional study.

Setting: PHC.

Subjects: All public health nurses (PHNs) and general practitioners (GPs) in Northern Norway were invited to answer a structured electronic questionnaire; 31% participated (N?=?220).

Main outcome measures: Self-reported and actual knowledge, information sources, attitudes and willingness to vaccinate their (tentative) daughter.

Results: 47% of respondents knew that HPV infection is a necessary cause of cervical cancer. PHNs had higher self-reported and actual knowledge about HPV vaccination and cervical cancer than GPs. PHNs used the Norwegian Institute of Public Health’s numerous information sources on HPV, while GPs had a low user rate. 88% of PHNs and 50% of GPs acquired information from the pharmaceutical industry. 93% PHNs and 68% of GPs would vaccinate their 12-year-old daughter. In a multivariate logistic regression analysis, willingness to vaccinate one’s daughter was positively associated with younger age, being PHN (OR?=?5.26, 95%CI 1.74–15.94), little concern about vaccine side effects (OR?=?3.61, 95%CI 1.10–11.81) and disagreement among experts (OR?=?7.31, 95%CI 2.73–19.60).

Conclusions: Increased knowledge about HPV infection and vaccination is needed, particularly among GPs. Those least concerned about side effects and disagreements among experts were most likely to vaccinate their daughter. These findings are of interest for public health authorities responsible for the Norwegian vaccination and cervix cancer screening programmes, and providers of training of PHC personnel.

• Key points

• One year after introduction of HPV vaccination among 12-year-old schoolgirls in Norway, a cross-sectional study in Northern Norway among general practitioners (GPs) and public health nurses (PHNs) showed that

• ??barely half of PHC professionals knew the causal relationship between HPV infection and cervical cancer

• ??PHNs and GPs had higher self-reported than actual knowledge about HPV vaccination and cervical cancer

• nearly all PHNs and two thirds of GPs wanted to vaccinate their 12-year-old daughter. Those most concerned about side effects and disagreement among experts were less likely to vaccinate.

     

Improving the organization of palliative care by implementing quality indicators and national and setting-specific interventions: Study protocol of the IMPACT project

Abstract

Background

There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe.

Methods and design

The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study.

Discussion

It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe.     

A service evaluation of a specialist community palliative care occupational therapy service

Abstract

Background

Occupational therapy aims to maximize patients' independence and is thus particularly relevant in palliative care where a loss of function is both common and distressing for patients. However, there is evidence that health professionals have a limited understanding of its role and remit, with the consequence that timely referrals are not made.

Method

A service evaluation was undertaken to establish colleagues' understanding of the palliative care occupational therapy service and its perceived benefit to patients in one local primary care area. A mixed methods approach was used, combining an online survey and focus groups. One hundred people were invited to complete the questionnaire, with a 58% response rate. Twenty-five people subsequently participated in two focus groups.

Results

Participants believed that the service achieved its aims. The main reasons for referral to the occupational therapy service were for the provision of equipment, or advice about equipment to support independent community living. Facilitating patients' preferred place of care was ranked next in importance. Participants did not feel that they were sufficiently aware of the full range of occupational therapy services available, and suggested that the provision of education and information would be effective in raising awareness of the remit of the specialist occupational therapy service.

Conclusion

From the professional service users' perspective, the specialist community palliative care occupational therapy service makes a valuable contribution to maintaining patients' independence, comfort, and quality of life, and is associated with supporting patients' preferred place of care. Areas highlighted for development include clear communication pathways, and education and information strategies regarding the role of the palliative care occupational therapist.     

Hospice care in Calgary: Survey of family physicians on their knowledge,experience, and attitudes

ObjectiveTo explore Calgary family physicians’ knowledge about hospices, their attitudes toward the referral process, and their understanding of barriers to referral for hospice care.DesignSurveys were mailed to 400 randomly selected participants. The survey contained 18 questions related to hospice care, physician experience, attitudes, and perceived barriers to making a hospice referral.SettingCalgary, Alta.ParticipantsFamily physicians.ResultsIn total, 104 surveys were mailed back. Family physicians agreed that palliative care in a hospice setting can greatly improve quality of life for patients, but only 2 of 6 knowledge questions about hospice care were answered correctly by most. Family physicians with special areas of interest or subspecialties were more likely to feel well-informed about hospice referrals (P = .017), indicated a higher comfort level discussing hospice and palliative care (P = .030), and were less likely to defer discussing it with patients (P = .023). Physicians with a special interest in palliative medicine were more likely to correctly answer the knowledge questions (P < .034) and to be familiar with the referral process (P < .001), patient eligibility (P < .001), and the palliative home care program (P = .003). Qualitative analysis revealed support for palliative home care and consultation services but concerns about caregiver coping and family issues. Concerns about disengagement of family physicians and uncertainty about the referral process are obstacles to referral.ConclusionWhile Calgary family physicians are appreciative of hospice care, there are knowledge gaps. It is important to engage family physicians in the referral process.     

Assessment of palliative care needs for people living with HIV/AIDS in Rwanda

Abstract

The rising number of people living with HIV/AIDS (PLWHA) world-wide has made healthcare professionals and policy makers search for accessible healthcare that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, healthcare professionals and co-ordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was associated with the health status of PLWHA (P < 0.001). The most common perceived palliative care needs of PLWHA were: (i) medical needs, psychosocial needs and the need for financial assistance (77%); (ii) home-based care (47%); (iii) nutritional support (44%); and (iv) pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular, the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of healthcare professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of healthcare providers is essential for the provision of adequate palliative care services in Rwanda.     

Hospital versus home death: results from the Mexican Health and Aging Study

ContextCharacterizing where people die is needed to inform palliative care programs in Mexico.ObjectivesTo determine whether access to health care influences the place of death of older Mexicans and examine the modifying effects of demographic and clinical characteristics.MethodsWe analyzed 2001 baseline and 2003 follow-up data from the Mexican Health and Aging Study. Cases included adults who completed the baseline interview and died before the follow-up interview and for whom a proxy interview was obtained in 2003. The main outcome variable was the place of death (hospital vs. home). The predictors of the place of death were identified using logistic regression analysis.ResultsThe study group included 473 deceased patients; 52.9% died at home. Factors associated with hospital death were having spent at least one night in a hospital during the last year of life (odds ratio [OR]: 6.73; 95% confidence interval [CI]: 3.29, 13.78) and dying in a city other than the city of usual residence (OR: 4.68, 95% CI: 2.56, 8.57). Factors associated with home death were not having health care coverage (OR: 2.78, 95% CI: 1.34, 5.88), living in a city of less than 100,000 residents (OR: 2.44, 95% CI: 1.43, 4.17), and older age (OR: 1.03, 95% CI: 1.01, 1.05).ConclusionOlder Mexicans with access to health care services were more likely to die in the hospital even after controlling for important clinical and demographic characteristics. Findings from the study may be used to plan the provision of accessible end-of-life hospital and home-based services.     

Rural nurses’ self-rated knowledge and skills in pain,medication, symptom and emergency management in community-based palliative care: A cross-sectional survey

BackgroundThe assessment and management of pain and symptoms in community-based palliative care patients is a measure of quality in palliative care to indicate the quality of palliative care. Studies have identified rural community-based nurses are not always confident in this area of practice.AimTo identify rural community-based nurses’ strengths and gaps in palliative care knowledge and skills regarding pain, symptom and emergency management and to determine correlates of deficient knowledge.MethodsA cross-sectional study design was used. An electronic questionnaire was emailed to 165 community-based nurses in Gippsland, Australia. Participants rated their palliative care knowledge/skills on a five-point Likert scale ranging from ‘No knowledge’ (1) to ‘Can teach others’ (5) on the following topics: pain (2 items), medication (14 items), symptoms (26 items), palliative care emergencies (12 items) and assessment tools (2 items). For each item classified as a gap or consolidation, associations between nurse characteristics and no/basic knowledge were assessed using univariable and multivariable binary logistic regression.FindingsOverall, 122 nurses (response rate = 74%) completed the questionnaire. Seventy-one percent of items were identified as practice strengths. Strengths included pain (2/2), medication management (11/14), and symptom management (22/25). Twenty-nine percent of items were identified as gaps and consolidations. Gaps and consolidations related to management of opioid medications, symptom management of delirium, and the recognition and management of rare emergency situations within palliative care.DiscussionThis study found that lack of experience and formal training in palliative care were associated with gaps in knowledge.ConclusionThis study found that lack of experience and formal training in palliative care were associated with gaps in knowledge. Targeted interventions such as training and peer mentoring have the potential to address identified gaps in rural community-based nurses... palliative care knowledge/skills and, ultimately, improve the care of palliative patients.     

A retrospective audit of spirituality assessment in palliative care patients in Singapore

Abstract

Introduction

Spirituality is essential and forms a critical factor in the way palliative care patients cope with their illnesses. It has been recognized as a major and important component of palliative care. There is little data in Singapore on the current state of spiritual care at the end of life.

Materials and methods

A retrospective case-notes audit of the current state of spirituality assessment was conducted in the home care as well as hospital in-patient setting. The case-notes audit was selected from patients who were seen by the palliative medicine teams between June and July 2013.

Results

A total of 108 home care patient case notes and 182 hospital in-patient case notes were analyzed during the period of this study. Only 24.1% of home care patients and 30.2% of hospital in-patients had spirituality assessments conducted, of which most patients (77.8%) had these assessments completed during the first initial clinical review. The common spiritual themes identified were fairly equally distributed among the 81 palliative care patients in whom a spirituality assessment was performed.

Conclusion

Our audit shows that less than one-third of patients have had a spiritual assessment conducted, similar to the results of other studies elsewhere. It is hoped that this spirituality assessment rate can be improved by putting in place a structured spiritual programme in future.     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

The Role of Nurses in Pain and Palliative Care

ABSTRACT

Questions from patients about pain conditions and analgesic pharmacotherapy and responses from authors are presented to help educate patients and make them more effective self-advocates. Nurses play a critical role in the care of people living with pain throughout the life span—from birth to death. They provide important services that strongly influence the quality and effectiveness of a pain care plan. The role of the professional nurse and his/her responsibilities in pain and palliative care are discussed throughout these questions and answers.