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.     

The canary in the mine

Many Americans are concerned about their access to health care in the future, especially their ability to pay for needed services. However, a person with a disabling condition requiring ongoing clinical vigilance, supportive care, and other assistive services or technologies faces special difficulties: that person is the "canary in the mine," warning others about fundamental problems within our health care system. Persons with disabilities who have health insurance are often unable to get items and services not covered by their plans. They experience more problems than others with follow-up care, availability of specialists, getting to doctors, and obtaining help during off hours. These problems suggest that people with disabilities fall into the "quality chasm," the metaphor used by the Institute of Medicine to describe the gap between ideal care and current reality. The Crossing the Quality Chasm report suggests 6 aims for fundamental reform, exhorting the health care system to become safe, effective, patient-centered, timely, efficient, and equitable. Each of these aims holds special resonance for persons with disabilities. Despite the compelling need to overhaul the health care system, the American public as yet seems little inclined to fundamental change. Perhaps the impetus must come from subgroups within the population who are particularly at risk from the current system, such as persons with disabilities. As solutions are crafted, people with disabilities, their families, and communities should help design and direct fundamental changes to the health care system.     

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.     

Primary care options to prevent mental illness

The common mental disorders, mainly anxiety and depression, constitute a major public health problem, incurring considerable costs in terms of use of health services and time lost from work. Risk factors include low socioeconomic status, poverty and poor housing, as well as stressful life events and difficulties such as demanding child care, separation or divorce, bereavement, loss of employment and caring for a dependant relative. Population approaches are probably necessary to reduce significantly the burden of such mental health problems, but health care measures are far from negligible. Primary care professionals have regular opportunities to identify people at risk of mental health problems and refer them to welfare and social support services (primary prevention). A number of interventions among high-risk groups have been shown to be effective, including problem-solving training and cognitive-behavioural approaches. The most important tasks in primary care are to identify people with depression, alcohol and drug misuse and eating disorders as early as possible in the course of their illness and to institute effective treatment (secondary prevention). Primary care teams should also join in shared care arrangements for patients with chronic disabling mental illnesses, in order to prevent recurrences and relapses (tertiary prevention).     

Primary care options to prevent mental illness

The common mental disorders, mainly anxiety and depression, constitute a major public health problem, incurring considerable costs in terms of use of health services and time lost from work. Risk factors include low socioeconomic status, poverty and poor housing, as well as stressful life events and difficulties such as demanding child care, separation or divorce, bereavement, loss of employment and caring for a dependant relative. Population approaches are probably necessary to reduce significantly the burden of such mental health problems, but health care measures are far from negligible. Primary care professionals have regular opportunities to identify people at risk of mental health problems and refer them to welfare and social support services (primary prevention). A number of interventions among high-risk groups have been shown to be effective, including problem-solving training and cognitive-behavioural approaches. The most important tasks in primary care are to identify people with depression, alcohol and drug misuse and eating disorders as early as possible in the course of their illness and to institute effective treatment (secondary prevention). Primary care teams should also join in shared care arrangements for patients with chronic disabling mental illnesses, in order to prevent recurrences and relapses (tertiary prevention).     

Out-of-area placements in Scotland and people with learning disabilities: a preliminary population study

People with learning disabilities have a different pattern of disease from the general population and high health needs that are frequently unidentified and unmet. Many require responses from general and specialist health services. A picture is emerging of some people with learning disabilities, often with complex care needs, moving from their home area on what is being termed, out-of-area placements, to receive specialist care. However, within the learning disability population, limited research has been undertaken and the impact on health services is unknown. Data were collected from health and social care providers to identify people with learning disabilities moving in and out of services across Scotland. Further data about the consequences and impact of out-of-area placements were gathered in one geographical area using focus group methodology. The results suggest that people with learning disabilities are moving in, out and across Scotland, often as a result of breakdown of local care arrangements or because of lack of specialist resources. Planning, service development and effective communication need to be in place to address the needs of this increasing and ageing population.     

Participative mental health consumer research for improving physical health care: An integrative review

People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co‐investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

The Physical Health of Individuals Receiving Antipsychotic Medication: A Qualitative Inquiry on Experiences and Needs

Individuals with a mental illness are reported to have a reduced life expectancy and a greater risk of being affected by preventable physical illnesses such as cardiovascular disease and Type 2 diabetes. This inquiry sought to identify the physical health beliefs, experiences and needs of individuals with mental health problems in receipt of antipsychotic medication who live in the community. A qualitative inquiry was undertaken using three focus groups in a community mental health service in Ireland with 21 participants with mental health problems who were treated with antipsychotic medication. The participants were clear about the importance of good physical health as well as good mental health. They disliked the adverse effects of antipsychotic medication and experienced many barriers in accessing general practitioners/primary care services. They also preferred to receive health advice and self-management advice from the mental health services. The participants in this study were aware of the need to engage in health protective behaviours but were often overwhelmed by their comorbid health issues and the organizational and communication barriers in accessing their general practitioners.     

Access to secondary care for people with learning disabilities

A person-centred approach is needed to improve access to secondary health care for people who have learning disabilities. The Department of Health (1995a) drew attention to this issue when it reported that people with learning disabilities sometimes have problems maintaining their health because hospitals fail to work in an interdisciplinary manner with the specialist learning disability services. This article focuses on a case study where the difficulties in operating on a patient with learning disabilities and mental health problems were overcome through a multidisciplinary and patient-centred approach. The case study provides evidence of mainstream health staff and learning disability professionals working together and breaking down barriers to provide a seamless service.     

Self-help groups as a component of ambulatory community-based rehabilitation after acquired brain damage

Self-help groups are communities of people with chronic illness or disabilities and their families who join in an effort to cope with their condition and/or psychosocial live problems through mutual help. Their areas of work range from therapeutically focussed support to legal and social counselling and support to the personal help an individual member may need. Self-help groups for the various health conditions or disabilities are considered an important component of ambulatory rehabilitation at community level. Along with social, cultural and leisure activities, health education plays an important role in terms of prevention. For survivors of stroke or brain injury, however, the availability of self-help offers continues to be highly inadequate despite a huge need for assistance, counselling and follow-along services after discharge from rehabilitation in this very patient group.     

Utilization of mental health and substance abuse services among homeless adults in Los Angeles

OBJECTIVES: Even though psychiatric disorders are disproportionately present among the homeless, little is known about the extent to which homeless people receive treatment for those problems or the factors that are associated with receiving treatment. This article examines utilization and predictors of mental health and substance abuse treatment among a community-based probability sample of homeless adults. METHODS: The data analyzed here were collected through face-to-face interviews with 1,563 homeless individuals. Bivariate analyses examined differences between homeless men and women in (1) the prevalence of major mental illnesses and substance dependence and (2) utilization of inpatient and outpatient treatment services for those with specific diagnoses. Logistic regression analyses identified predictors of mental health treatment among those with chronic mental illness and substance abuse treatment among those with recent substance dependence. RESULTS: Two-thirds of these homeless adults met criteria for chronic substance dependence, whereas 22% met criteria for chronic mental illness, with substantial overlap between those two disorders: 77% of those with chronic mental illness were also chronic substance abusers. Only one-fifth of each of those two groups reported receiving treatment for those disorders within the last 60 days. Mental health service utilization was predicted largely by factors related to need (eg, diagnosis, acknowledgment of a mental health problem), whereas substance abuse service utilization was predicted by myriad additional factors, reflecting, in part, critical differences in the organization and financing of these systems of care. CONCLUSIONS: More attention must be directed at how to better deliver appropriate mental health and substance abuse services to homeless adults.     

Health assessment in child care centers: parent and staff perceptions

PURPOSE: The purpose of this study was to identify preschool children's health needs in child care centers, as perceived by parents and staff. METHOD: A Health Care Services Assessment was completed by 55 parents and 13 staff in four urban child care centers to identify the health services needed and children's common health problems. FINDINGS: The majority (69%) of the parents and staff reported that onsite health services were needed at least once a week. Helpful health services were identified as screening exams for respiratory illnesses (88%), other illnesses (87%), developmental problems (51%), and children with special needs (50%). The most commonly identified child health problems were colds (93%) and ear infections (75%). CONCLUSION: These findings indicate that efforts to protect the health of preschool children in child care centers might best begin with health services focused on prevention, such as screening children for illnesses and providing information on infection control.     

Adaptation to chronic illness. Analysis of nursing research

The review of reported nursing research on chronic illness has many implications for nursing practice. Results of these studies may be implemented in many of the interventions provided for chronically ill patients. There needs to be collaboration between the researcher and practitioner to share knowledge of interventions that promote adaptation to chronic illness, and to investigate new and innovative therapies. Another contribution to nursing practice is the psychosocial variables that affect adaptation of chronically ill patients. Depending on the health problem and practice setting, nurses need to identify which variable may increase the effectiveness of their interventions and how they can best promote adaptation. Particularly noticeable was the absence of studies on the prevention of chronic illness. Although there is documented evidence of the relationship between stress and illness, and predictions that future environments will be even more stressful, a needed area for nursing research is prevention of chronic health problems. Areas such as stress management, health promotion, relaxation training, and behavior modification are timely subjects for nurses to research for prevention of these problems. There are merits to studying a particular chronic health problem in depth and in studying the commonalities among several chronic illnesses. With knowledge of both the physical and psychosocial, nurses are in an ideal position to contribute to the knowledge base of human responses to chronic illnesses.     

Primary care attributes, health care system hassles, and chronic illness

BACKGROUND: Patients with a chronic illness are likely to report difficulties in their encounters with the health care system. Although most patients with a chronic illness are managed by primary care clinicians, little is known about how the attributes of primary care might be related to health care system hassles. OBJECTIVE: We sought to examine the relationship between attributes of primary care and health care system hassles among veterans with one or more chronic illnesses. RESEARCH DESIGN: This was a cross-sectional mailed survey. SUBJECTS: We included veterans with one or more chronic illnesses who were cared for in the South Texas Veteran's health care system. MEASURES: The Components of Primary Care Instrument was used to measure 4 attributes of primary care: accumulated knowledge of the patient by the clinician, coordination of care, communication, and preference for first contact with their primary care clinician. A 16-item health care systems hassles scale was constructed and demonstrated good face validity and reliability with a Cronbach's alpha of 0.94. RESULTS: Of the 720 surveys administered by mail, 422 (59%) were returned. Patients with multiple chronic illnesses reported a higher level of hassles than patients with a single chronic illness. After controlling for patient characteristics, primary care communication and coordination of care were inversely associated with patient hassles score: as communication and coordination improved, the reported level of hassles decreased. CONCLUSIONS: Effective delivery of primary care to patients with one or more chronic illnesses may be important in decreasing the level of hassles they experience as they interact with the health care delivery system.     

Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study

Compared to the general population, people with pre‐existing serious and persistent mental illness (SPMI) have higher rates of physical illness and die at an earlier age, raising questions about their palliative and end‐of‐life care needs when they are diagnosed with an incurable physical illness. In the present study, we explored access to specialist palliative care services within one New Zealand health district. Routinely‐collected, de‐identified patient information on a cohort of people diagnosed with SPMI, and receiving specialist palliative care services from the Capital and Coast District Health Board (CCDHB), was compared to the general population from the same health district. People with SPMI are 3.5 times less likely to receive specialist palliative services compared to the general population from the Capital and Coast District Health Board. The proportion of people identifying as Māori is 1.2 times higher in the SPMI cohort than the general CCDHB population. The SPMI cohort experiences a higher level of deprivation compared to the general population in the CCDHB. The present study confirms that those diagnosed with an SPMI are less likely to use specialist palliative care services at the end of life. Research using a national dataset is needed to determine whether the study findings are applicable to the national population.     

Rates of access to assistive equipment and medical rehabilitation services among people with disabilities

Purpose: To determine rates of access to assistive equipment and medical rehabilitation services among people with disabilities in the US, and to determine whether health plan type is associated with rates of access to these health services.

Methods: Results were derived from a nationwide US survey sample of people with cerebral palsy, multiple sclerosis or spinal cord injury. Analyses were restricted to working-age adults ( n =500). Need for, and receipt of (1) assistive equipment in the last 12 months, and (2) rehabilitative services in the last 3 months, was determined.

Results: Over half of the sample indicated a need for assistive equipment in the last 12 months. Nearly a third of those who indicated a need did not receive assistive equipment every time it was needed. Forty per cent of the sample indicated a need for rehabilitative services in the last 3 months, and over half of those indicating a need did not receive rehabilitative services every time they were needed. Access rates did not differ appreciably between respondents covered by managed care and fee-for-service health plans.

Conclusion: Emphasis in healthcare for people with disabilities should shift from traditional acute healthcare models that focus on functional restoration, to preventive services, and maintenance of function, health and independence.     

Treatment and recovery for sexual addicts

Over the last 10 years, primary health care practitioners have seen an increase in their case loads of persons with chronic addictive illnesses (e.g., alcohol- and drug-related illnesses, eating disorders, spending addictions). The management of chronic illnesses usually is aimed at restoring a level of health and reinforcing a positive lifestyle so that a person can manage the illness rather than having it cured and its effects eradicated. Practitioners can apply the treatment modalities already being used in the management of chronic and addictive illnesses to treat the most newly emerging addictive illness--sexual addiction. Following the premise that a person needs to be involved with other people who have the illness, treatment and recovery are based on a 12-step recovery-group process. Additionally, sexually addicted clients need medical and emotional therapy. This article focuses on understanding the decision-making process involved in the care of patients with sexual addiction, and presents tools and resources to help in managing this illness.     

Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland

Over the last 30 years there has been a considerable increase in the life expectancy of people with learning disabilities. This has resulted in changing patterns of morbidity and mortality and an increasing recognition of the health needs of people with learning disabilities. Major strides forward have been made in the reduction of preventable illnesses among the general population. However, among people with learning disabilities such illnesses have received only limited health promotion attention until recently. In the last decade major gaps have been identified in the ability of current primary health services to respond to the needs of people with learning disabilities. The need to respond effectively to this situation has been identified as a priority by the current United Kingdom Government. Following an overview of the literature in relation to the changing health profile of people with learning disabilities and the need for health screening, consideration is given to some of the key difficulties which may be encountered when attempting to utilize current primary health services. The analysis of data derived from the health screening of 373 people with learning disabilities by a community nursing service in Down and Lisburn Health and Social Services Trust reveals the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health.