Palliative care in patients with chronic obstructive pulmonary disease

This article considers the place of palliative and end of life care in the management of people with end-stage chronic obstructive pulmonary disease (COPD). This respiratory disease has considerable morbidity and mortality, which affect patients, their families and carers, and healthcare provision. Many nurses working with older people will encounter patients with advancing COPD which may be their main problem or part of multiple comorbidities. This article aims to help nurses recognise declining respiratory status and understand the challenges faced by this particular group of patients, their families and carers. It follows recommendations that end of life care should be considered and dealt with in this group of patients (Department of Health 2008, National Clinical Guideline Centre 2010). It explores palliation and end of life and then considers more practical applications to support nursing care at the end stage of the disease.     

Palliative and end-of-life care in Newfoundland's deaf community

The deaf community is a distinct cultural and linguistic community (the uppercase D is a cultural identification). Compared to the general population, the deaf community, as a social group, experiences poorer health status. Deaf people seek care less frequently than the general population and have fewer interactions with the health system. Their encounters with the health system are often characterized by communication difficulties, fear, mistrust, and frustration. Qualitative research was used to explore the experiences of family caregivers who provided end-of-life care for a deaf person. Key findings indicate that the deaf community has limited understanding of their options for palliative and end-of-life care. Communication and health literacy are key barriers to accessing appropriate end-of-life care. Pain and symptom management, consideration of physical environments, and limited access to bereavement care are common issues faced by deaf people when caring for loved ones at the end of life.     

Palliative care in Irish nursing homes: the work of community clinical nurse specialists

AIM: to assess the current level of input from community-based clinical nurse specialists in palliative care into nursing homes in the Republic of Ireland. METHOD: a national survey was undertaken with questionnaires distributed via the National Council for the Professional Development of Nursing and Midwifery database. The total population was 114 community-based clinical nurse specialists in palliative care. FINDINGS: 63 completed questionnaires were returned achieving a 55% response rate. All respondents had undertaken work with nursing homes. The main focus of interactions with nursing homes was on pain and symptom management and this was often provided by telephone. The majority of nurses were involved exclusively in care of patients with cancer, although 40% of respondents cared for patients with non-malignant diseases. CONCLUSIONS: As populations age and more people end their lives in residential care settings, this area of care has increasing relevance. The dissemination of palliative care best practice would ensure that all patients, regardless of their diagnosis, receive the benefits of palliative care at the end of life. Clinical nurse specialists are ideally placed to provide education and support to nursing homes and other residential care settings for older people.     

Older adults' attitudes to death, palliative treatment and hospice care

BACKGROUND: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. OBJECTIVE: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. DESIGN: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55-74 with those aged 75 years and over. SETTING: General practices in London. SUBJECTS: 129 people aged 55-74 and 127 people aged 75 years or over on the lists of general practitioners. METHODS: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. RESULTS: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. CONCLUSIONS: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care.     

Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study

BACKGROUND: Old people's life situation when receiving municipal help and care in their last period of life is sparsely investigated from their own perspective. OBJECTIVE: The aim of this study was to investigate the experiences of aspects that bring about a good life in the last phase of life among people (75+ years) receiving municipal care. PARTICIPANTS: Older people living in a municipality in Southern Sweden being 75 years or older, receiving help and/or care from the municipality, and having a life-threatening disease and/or receiving palliative care were asked to participate. In all 17 people, 10 women and 7 men, aged 78-100 years were included. METHODS: Qualitative interviews, with the emphasis on their present life situation especially what brought about a good life, were performed. The interviews were analysed using qualitative content analysis. RESULTS: The experience was interpreted to be Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life: Maintaining dignity, Enjoying small things, Feelings of "being at home", Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death. CONCLUSION: This study confirm theories suggesting that the last phase of life in old age meant focusing inwards, reflecting on the entire life as a way of completing it as well as enjoying small things and also viewing oneself in the perspective of contributing to the future. It also indicated that this phase of life meant being trapped by health complaints and functional limitations. The struggle to maintaining dignity as opposed to being in the hands of others implies that the concept of palliative care may be useful as a framework for providing nursing care to very old people, especially at the end of life.     

Paramedics' perceptions of their role in palliative care: analysis of focus group transcripts

Paramedics play an important role in out-of-hospital health care. They provide unscheduled care, assisting both patients with minor injuries and those experiencing life-threatening emergencies. Increasingly, paramedics are called on to manage chronic and complex health needs, including symptom relief for patients at the end of life. However, paramedics may not be well prepared to offer palliative care, as practice guidelines and education tend to focus on the management of acute medical emergencies and major trauma. Emergency medical services that employ paramedics rarely have practice guidelines or protocols that deal specifically with palliative care.     

The role of palliative care in trauma

Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome.     

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.     

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.     

Review article: End‐of‐life care for older people in the emergency department: A scoping review

Older people are increasingly utilising emergency services, often at the end of their life. This scoping review aimed to provide a comprehensive understanding of available research regarding end‐of‐life (EOL) care for older people in the ED. The Joanna Briggs Institute scoping review methodology guided this review. Databases of CINAHL, Ovid MEDLINE, Embase, SocINDEX and Google Scholar were searched using a combination of terms, including older/aged/geriatrics/elderly, palliative/terminal/end‐of‐life and emergency/emergency service. The search was limited to articles published in English from 2007 to 2018. The level of evidence of included articles was assessed using the National Health and Medical Research Council (NHMRC) criteria. Fourteen articles were included. Definitions pertaining to EOL care in the ED vary. Older people presenting to ED at EOL were mostly female, triaged in urgent or semi‐urgent category, presented with diagnoses of advanced cancer, cardiac and pulmonary disease, and dementia with symptoms including pain and breathlessness. Multiple tools pertaining to EOL exist and range from predicting mortality, and assessing functional status, co‐morbidities, symptom distress, palliative care needs, quality of life and caregiver's stress. Outcomes for older people enrolled in specific EOL intervention programmes included lower admission rates, shorter ED length of stay, increased palliative care referral and consultations, and decreased Medicare costs. The NHMRC evidence level of included articles ranged from II to IV. Limited evidence exists regarding the definition, clinical profile, care delivery and outcomes for older people requiring EOL care in the ED. Future research and clinical practice that uses current evidenced‐based policies and guidelines is required.     

Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals

Primary care plays an important role in delivering care to people who are dying. However, providing palliative care to people dying with conditions other than cancer may be more problematic, because it may be more difficult to establish an exact prognosis or to identify their needs. This article draws on qualitative research, which explored the views of health professionals, patients and their carers about care provided at the end of life. Differences between the care of people with cancer and those with end-stage cardiorespiratory disease were found in four main areas: management and progression of disease, communication and information, health care in the community and awareness of dying. The research shows that even in PHCTs (primary health care teams) committed to the delivery of palliative care, people dying with end-stage cardiorespiratory disease are less likely than those with cancer to receive full, and easily understood, information, to be aware that they are dying or to receive district nursing care. There is an increasing call for palliative care to be extended to all, but further work is needed to develop appropriate packages of care for those dying with conditions other than cancer.     

How are older people’s care preferences documented towards the end of life?

BackgroundMeeting individuals’ preferences is essential to achieve quality care at the end of life. Documenting these preferences in the healthcare system is an essential step to achieve them.AimTo investigate the documentation of older people’s care preferences including end of life care preferences in health records.MethodsRetrospective audit of health records for the last six months of life of people aged over 74 years who died in hospitals, residential aged care facilities, or community palliative care.FindingsFifty records were audited, including 28 hospital, 12 residential aged care facilities, and 10 community palliative care records with overall 297 documented care preferences. 30% of preferences were recorded on institution-specific forms at admission which focussed on patients’ medical/healthcare needs and less on personal/lifestyle preferences. Documentation mainly included clinical care preferences (35%), resuscitation plans (28%), and place of care (20%). Preferred place of death was not documented in 70% of cases. Increased documentation occurred closer to death with 63% of preferences recorded in the last week of life.DiscussionThe low rates of recorded preferences, especially non-medical choices like preferred place of death, may indicate low rates of preference discussions and/or poor documentation of these conversations. The increase in documentation closer to death may be explained by increased care needs and higher rates of care place transitions towards the end of life.ConclusionDiscussion and documentation of older people’s care preferences needs to be further encouraged within the healthcare system. It is essential not to wait for a crisis at the end of life to begin these processes.     

Perceptions of the role of the hospital palliative care team

AIM: The aim of this study was to understand staff perceptions of the role of the hospital palliative care team and to identify knowledge and confidence levels of general staff caring for patients with palliative care needs. METHOD: A survey questionnaire tool was used with a response rate of 51 per cent. Participants included nurses, health care assistants and doctors. RESULTS: The study highlighted several misconceptions about the role of the palliative care team, but demonstrated that the clinical staff surveyed were confident in their palliative care skills, with the exception of discharge planning, despite the fact that only 26 per cent of nurses reported having undergone training in palliative care. It identified that HCAs felt confident in caring for dying patients yet had little confidence in dealing with distressed relatives or speaking to patients and families about death. It was also interesting to note that trained nurses felt confident in their symptom control skills, and they rated training in this area as one of the top priorities. CONCLUSION: The findings have considerable implications for palliative care services. Professional education should continue to focus primarily on symptom control and communication skills training, but stress management training should be considered. Staff need to be clear about how to obtain advice and what support is available for cancer patients. Further research is required to understand the needs of HCAs and potential models for education and support.     

District nurse involvement in providing palliative care to older people in residential care homes

Although less than 15% of older people in care homes die of a terminal disease such as cancer, many more die following a period of slow deterioration. In the UK, residents of care homes receive their nursing care from primary healthcare providers. This article reports on a study that describes how district nurses and care home managers define their responsibilities when caring for residents who are dying. The findings presented are from a detailed survey of 89 district nurse team leaders and 96 care home managers. District nurses were the most frequent health professionals visiting care homes, but less than half reported involvement in palliative care. The differing priorities and perceptions of participants regarding what constituted nursing and personal care influenced older people's access to palliative care services. Furthermore, the organization of care and the stability of the care home workforce affected participants' ability to establish ongoing supportive working relationships. It is argued that unless there is an organizational review of current practice, older people will continue to have unequal access to generalist and specialist palliative care.     

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.     

Pediatric palliative care: beyond the end of life

Palliative care is an emerging nursing specialty and is developing a dedicated spot in the field of pediatrics. As a specialty, palliative care focuses on quality of life and symptom management for patients who are living with chronic and life-threatening diseases. In pediatrics, advances in health care mean that many children are living longer with these conditions and could benefit from services that focus on quality of life and superior symptom management. Palliative care can be provided concurrently with curative therapies and is philosophically similar yet distinct from hospice services.     

Issues in aging. The role of the nurse in the care of older people with intellectual and developmental disabilities

Many people with I/DD are growing older and in increasing numbers. Generally people with I/DD experience the same physical process of aging as do individuals without lifelong disabilities with the exception of those individuals who have Down syndrome who may show physical signs of aging as much as 20 years earlier. Individuals with I/DD may experience some unique concerns associated with aging with similar or even higher rates of age-related conditions than do older persons without lifelong disabilities [20]. Geriatric care principles will guide nurses caring for older people with I/DD, beginning with the assessment of functional status to determine interventions for developmental, aging, and health concerns and health promotion. Nursing interventions must be individualized both according to the person's preferences and health status. A primary goal is to prevent acute exacerbation of any underlying pathological process, prevent unnecessary deterioration of the older individual's physical condition, and maintain optimum physical and mental function. Nurses can provide individuals who are aging and their families or caregivers the needed anticipatory guidance about life transitions during the aging years, including palliative end-of-life care. This is an exciting and challenging time for nurses who care for aging people with I/DD. John F. Kennedy once said, "It is not enough for a great nation to have added new years to life. Our objective must be to add new life to those years." As a profession, nurses have historically added years to life. The challenge of nursing is now to add quality life to those years for all older persons with I/DD.     

Palliative care for the older adult

The majority of deaths in the United States occur in the geriatric population. These older adults often develop multiple chronic medical problems and endure complicated medical courses with a variety of disease trajectories. Palliative care physicians need to be skilled in addressing the needs of these frail elders with life-limiting illness as they approach the end of life. Although geriatrics and palliative medicine share much in common, including an emphasis on optimizing quality of life and function, geriatric palliative care is distinct in its focus on the geriatric syndromes and on the provision of care in a variety of long-term care settings. Expertise in the diagnosis and management of the geriatric syndromes and in the complexities of long-term care settings is essential to providing high-quality palliative care to the elderly patient. This paper is a practical review of common geriatric syndromes, including dementia, delirium, urinary incontinence, and falls, with an emphasis on how they may be encountered in the palliative care setting. It also highlights important issues regarding the provision of palliative care in different long-term care settings.