Living with advanced heart failure: a prospective, community based study of patients and their carers

BACKGROUND: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. AIM: To describes how patients and carers view health and social care in the last year of life. METHODS: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. RESULTS: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. CONCLUSIONS: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.     

Actualización de la Guía Española de la EPOC (GesEPOC): comorbilidades,automanejo y cuidados paliativos

The current health care models described in GesEPOC indicate the best way to make a correct diagnosis, the categorization of patients, the appropriate selection of the therapeutic strategy and the management and prevention of exacerbations. In addition, COPD involves several aspects that are crucial in an integrated approach to the health care of these patients. The evaluation of comorbidities in COPD patients represents a healthcare challenge. As part of a comprehensive assessment, the presence of comorbidities related to the clinical presentation, to some diagnostic technique or to some COPD-related treatments should be studied. Likewise, interventions on healthy lifestyle habits, adherence to complex treatments, developing skills to recognize the signs and symptoms of exacerbation, knowing what to do to prevent them and treat them within the framework of a self-management plan are also necessary. Finally, palliative care is one of the pillars in the comprehensive treatment of the COPD patient, seeking to prevent or treat the symptoms of a disease, the side effects of treatment, and the physical, psychological and social problems of patients and their caregivers. Therefore, the main objective of this palliative care is not to prolong life expectancy, but to improve its quality. This chapter of GesEPOC 2021 presents an update on the most important comorbidities, self-management strategies, and palliative care in COPD, and includes a recommendation on the use of opioids for the treatment of refractory dyspnea in COPD.     

[Translated article] Spanish COPD Guideline (GesEPOC) Update: Comorbidities,Self-Management and Palliative Care

The current health care models described in GesEPOC indicate the best way to make a correct diagnosis, the categorization of patients, the appropriate selection of the therapeutic strategy and the management and prevention of exacerbations. In addition, COPD involves several aspects that are crucial in an integrated approach to the health care of these patients. The evaluation of comorbidities in COPD patients represents a healthcare challenge. As part of a comprehensive assessment, the presence of comorbidities related to the clinical presentation, to some diagnostic technique or to some COPD-related treatments should be studied. Likewise, interventions on healthy lifestyle habits, adherence to complex treatments, developing skills to recognize the signs and symptoms of exacerbation, knowing what to do to prevent them and treat them within the framework of a self-management plan are also necessary. Finally, palliative care is one of the pillars in the comprehensive treatment of the COPD patient, seeking to prevent or treat the symptoms of a disease, the side effects of treatment, and the physical, psychological and social problems of patients and their caregivers. Therefore, the main objective of this palliative care is not to prolong life expectancy, but to improve its quality. This chapter of GesEPOC 2021 presents an update on the most important comorbidities, self-management strategies, and palliative care in COPD, and includes a recommendation on the use of opioids for the treatment of refractory dyspnea in COPD.     

Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia,informal carers and healthcare professionals

BackgroundIn order to provide improved care provision, integrated care services are being developed. However, little is known about how people living with dementia, their families and healthcare professionals experience integrated care. Therefore, the purpose of this review of the qualitative literature was to examine the experiences and perceptions of integrated dementia care.MethodsThis qualitative review synthesised findings from included studies identified from a comprehensive literature search. Searches included: five electronic databases, journal handsearching, and reference list searching of relevant literature reviews and the final included studies.FindingsThree overarching themes were identified: 1) Ways of working which facilitate the delivery of integrated dementia care; 2) Informal carers as equal partners in care provision and decision making; and 3) Challenges leading to fragmented and disjointed integrated dementia care. For integrated care to be successful, communication and collaboration between healthcare professionals, and the involvement of informal carers is needed. Multidisciplinary teams and employing case managers to coordinate care provision can improve communication and collaboration. However, distrust between healthcare professionals and a lack of a central database to access and share information often hinders the development of integrated dementia care service provision.ConclusionIntegrated dementia care can be successful and well received by people living with dementia and their families when certain conditions are met. However, given the negative consequences fragmented and disjointed care can have on people living with dementia and their families, action is needed to further support the development of integrated dementia care services.     

Study protocol: A Montessori approach to dementia-related,non-residential respite services in Australia

Given the social burden and significant cost of dementia care in Australia, finding evidence-based approaches that improve outcomes, maintain independence, and reduce the impact on patients and families is essential. Finding effective ways to train and assist the healthcare staff who support these individuals is also critical, as they are considered to be at risk of workplace stress, burnout, and other psychological disturbances which negatively affects standards of care. The current paper describes a protocol for evaluating the effects of a Montessori-based approach to dementia care, in non-residential respite centres. An 18 month prospective observational, cohort controlled design is suggested that will compare participants from a community respite service that has undergone a Montessori-based workplace culture change and those from a service that provides a person-centred ‘care as usual’ approach. To achieve this, the protocol includes the assessment of participants across multiple variables on a monthly basis including the cognitive, behavioural, and emotional functioning of clients with dementia, levels of caregiver burden experienced by informal carers, and burnout, compassion satisfaction and workplace engagement among respite staff. The protocol also employs a qualitative evaluation of program fidelity. This approach will provide further insight into the potential benefits of early intervention with Montessori approaches for persons living with dementia in the community, their caregivers, and the staff and volunteers who assist them.     

End-of-life care for persons with advanced chronic obstructive pulmonary disease: Report of a national interdisciplinary consensus meeting

While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD). For instance, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases, affirming that the prevention, relief, reduction and soothing of symptoms “without affecting a cure” must become an integral component of standard care. A recent Medline search located 1015 articles related to palliative or end-of-life care for people with COPD published between 2001 and 2008, compared with only 336 articles published before 2001. To address the needs of Canadian patients, an interdisciplinary consensus meeting, funded by the Canadian Institutes of Health Research and supported by the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Lung Association was convened in Toronto, Ontario, on November 22, 2008, to begin examining the quality of end-of-life care for individuals with COPD in Canada. The present report summarizes the background to and outcomes of this consensus meeting.     

Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: Insights from a multicentre study

BACKGROUND:

Understanding patients’ needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease.

OBJECTIVES:

To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD).

METHODS:

A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals.

RESULTS:

For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD.

CONCLUSION:

Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.     

Family caregivers in palliative care

This article defines caregiving broadly to include the informal (ie, unpaid) care provided by family members that goes beyond customary and normative social support provided in social relationships. Family caregivers in particular play significant roles in the care of elders with advanced chronic disease and in the context of palliative and end-of-life care. These caregivers typically are involved in critical medical decisions, provide vital assistance with activities of daily living, and carry out most nonpharmacologic and pharmacologic treatment recommendations for community-based elders. This article describes family caregivers and the costs of care and introduces the stress process model to highlight essential caregiving experiences and needs in the context of palliative care. Common interventions used to support caregivers are highlighted, and the bereavement experience among caregivers is discussed.     

Challenges for accessing and maintaining good quality of HIV care among men who have sex with men living with HIV in China: a qualitative study with key stakeholders

ABSTRACT

HIV care in China is shifting toward a community-based model involving a wide range of stakeholders. We aimed to understand key stakeholders’ perceived challenges of providing high-quality care for men who have sex with men (MSM) living with HIV. In-depth interviews were conducted with a diverse sample of stakeholders (N?=?17) in two Chinese cities, including providers, policymakers, and community workers. Interviews focused on stakeholders’ challenges in HIV-related work and perceived barriers for MSM in accessing and maintaining HIV care. Thematic analysis strategies were used. Three cross-cutting themes related to accessibility and quality of care (QoC) emerged. First, MSM- and HIV-related stigma were perceived to increase the risk of MSM dropping out of care. While acknowledging stigma, some providers also expressed discriminatory views such as stereotypes of the MSM community. Second, stakeholders expressed concerns about QoC including healthcare workforce shortages, limited training opportunities, and high work stress while facing increasingly unmet needs from clients. Third, stakeholders shared challenges in mobilizing community resources to expand HIV care including unclear division of responsibility and strict auditing. Supportive policies and resources may be needed to bolster China’s primary care workforce and MSM-competent care and, more broadly, high QoC for sexual and gender minority patients.     

Exploring the healthcare journey of patients with rheumatoid arthritis: a mapping project - implications for practice

Objective: Consumers of healthcare can reveal important insights into the personal challenges they experience when negotiating their health needs. The National Rheumatoid Arthritis Society (NRAS) wanted to explore the experiences of those with rheumatoid arthritis (RA) in order to understand the impact on the individual and on healthcare resources and benchmark care against published standards and guidelines. Methods: A project was designed to explore the experiences of individuals with sero‐positive RA who had been diagnosed for three years or less. Qualitative semi‐structured interviews were used and combined with process mapping to explore the experiences of a purposeful sample of individuals with RA. The information generated was mapped and variances explored. Ethical approval was not required as the data were collected outside the National Health Service. Results: Twenty‐two participants' stories were mapped. Fifty per cent of participants sought a medical opinion within three weeks of symptom onset and the majority received a disease‐modifying anti‐rheumatic drug within six months from first presenting symptoms. Work‐related issues were highlighted by 13 participants, and seven of these experienced job losses directly attributed to their diagnosis. Conclusions: This unique mapping approach used qualitative research and process mapping to compare patient experiences against recognized standards and guidelines. These twenty‐two stories reveal important insights into the challenges experienced in negotiating these healthcare journeys and the impact upon the individual as a result of variances in standards of care received. The participants in this study were chiefly self‐motivated, informed and articulate, and did not reflect the broad ethnic, social or cultural diversity in the UK. Limitations must also be considered in relation to perceptions and recall of participants over a three‐year period, as these may have altered over time and illness experience. Copyright © 2008 John Wiley & Sons, Ltd.     

Integrating palliative care in severe chronic obstructive lung disease

Palliative care services for patients with chronic obstructive pulmonary disease (COPD) have been limited in most health care schemes despite the significant impact its symptoms can have on quality of life (QOL). Palliative care must be integrated to address physical and emotional distress and QOL deterioration more effectively. Multi-factorial barriers in current health care systems impede the provision of palliative care, including the lack of familiarity among health care professionals. There are sparse evidence-based studies and guidelines for clinicians to better recognize the need for palliative care in COPD patients compared to the large experience and resources available to cancer patients and hospice care. The multidisciplinary approach of palliative care should help COPD patients navigate through the continuum of chronic disease management. Highest QOL, not necessarily the highest physiologic goals, with relief of physical and emotional suffering, are most important to patients. Hospice care, the last phase of palliative care, can be offered to COPD patients when their goal of care has changed from life-prolonging therapies to comfort treatment. We suggest a scheme for identifying COPD patients for palliative care and for delivering simultaneous disease-directed care to help patients live life to the fullest. Pulmonary rehabilitation offers the best venue for incorporating palliative care. We review the need for, barriers to, and key activities for integrating palliative care into the current health care management of patients living with COPD.     

Information and communication technologies for informal carers and paid assistants: benefits from micro-, meso-, and macro-levels

The aim of this study was to explore the benefits of information and communication technologies (ICT)-based services for informal carers and paid assistants of older people living in the community. We cross-case analysed the effects of twelve initiatives in the EU, the USA and Canada, based on their individual analysis documented through interviews with promoters and a literature review. We carried out the cross-case analysis following a variables-oriented strategy on seven dimensions of impact at micro-, meso- and macro-levels: the quality of life of informal carers and paid assistants, quality of life of care recipients, quality of care, care efficiency and sustainability, acceptability, and infrastructure and accessibility. ICT-based services for informal carers and paid assistants improve the quality of life of older people and their carers and access to qualified care. They also generate savings which contribute to the sustainability of the care systems. These findings constitute a first look at the benefits of the use of ICT-based services for informal carers and paid assistants. Nevertheless, more research using experimental methods is needed to demonstrate the impact of these ICT-based services at meso- and macro-levels. This would help to support policy-makers to deploy these technologies for long-term care delivery.     

Management of refractory breathlessness with morphine in patients with chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is a progressive, incurable illness, which leads to significant morbidity over long periods of time and mortality. Treatment aims to reduce symptoms, improve exercise capacity and quality of life, reduce exacerbations, slow disease progression and reduce mortality. However, breathlessness is common in patients with advanced COPD and remains undertreated. As all reversible causes of breathlessness are being optimally managed, consideration should be given to specific non‐pharmacological and pharmacological treatment strategies for breathlessness. Low dose morphine has been shown to reduce safely and effectively breathlessness in patients with severe COPD and refractory dyspnoea. However, despite numerous guidelines recommending opioids in this clinical setting, many barriers limit their uptake by clinicians. Integration of palliative care earlier in the disease course can help to improve symptom control for people with severe COPD and refractory breathlessness. A multidisciplinary approach involving both respiratory and palliative care teams offers a new model of care for these patients.     

Review series: Examples of chronic care model: the home-based chronic care model: redesigning home health for high quality care delivery

Individuals with chronic obstructive pulmonary disease (COPD) face significant challenges due to frequent distressing dyspnea and deficits related to activities of daily living. Individuals with COPD are often hospitalized frequently for disease exacerbations, negatively impacting quality of life and healthcare expenditure burden. The home-based chronic care model (HBCCM) was designed to address the needs of patients with chronic diseases. This model facilitates the re-design of chronic care delivery within the home health sector by ensuring patient-centered evidence-based care. This HBCCM foundation is Dr. Edward Wagner s chronic care model and has four additional areas of focus: high touch delivery, theory-based self management, specialist oversight and the use of technology. This article will describe this model in detail and outline how model use for patients with COPD can bring value to stakeholders across the health care continuum.     

Management of COPD in End-of-Life Care by Spanish Pulmonologists

ABSTRACT

Chronic obstructive pulmonary disease is progressive and in its advanced stage is associated with major disability. Previous studies suggest that patients with this disease receive little palliative care, even in very advanced stages. Given this, our objectives were to describe the clinical practice of Spanish pulmonologists in the care of patients with end-stage chronic obstructive pulmonary disease, to identify potential barriers to implementing palliative care in these patients and to correlate these responses with doctor's years of experience. A link to an online survey was sent to pulmonologists on (a) symptom management, (b) structure of their department and collaboration with other services, (c) specialized medical training in palliative care, (d) communication with patients and their families, and (e) limiting barriers identified in the management of these patients. A total of 387 responses were received. The majority used opioids to treat dyspnea (52.9%) or pain (54.2%) and many treated anxiety/depression (41%). Around half of the respondents had no established routines in their departments to offer palliative care to patients with chronic obstructive pulmonary disease. There was little communication with end-of-life patients and their families on disease course, mainly associated with a lack of medical training (83% of cases) and changes in patient wishes regarding care through the disease course (81%). In our setting, communication with end-of-life patients with chronic obstructive pulmonary disease is poor. The key challenges identified are insufficient medical training and changing desires of patients. No substantial differences in attitude were found as a function of experience.     

Improving COPD Care in a Medically Underserved Primary Care Clinic: A Qualitative Study of Patient Perspectives

We conducted a focus group study in an urban hospital-based primary care teaching clinic serving an indigent and Hispanic (predominantly Puerto Rican) population in New England in order to learn how patients with Chronic Obstructive Lung Disease (COPD) perceive their disease, how they experience their medical care, and the barriers they face managing their disease and following medical recommendations. The research team included medical doctors, nurses, a medical anthropologist, a clinical pharmacist, a hospital interpreter, and a systems analyst. Four focus groups were conducted in Spanish and English in April and May 2014. The demographic characteristics of the 25 focus group participants closely reflected the demographics of the total COPD clinic patients. The participants were predominantly female (72%) and Hispanic (72%) and had a median age of 63. The major themes expressed in the focus groups included: problems living with COPD; coping with complexities of comorbid illnesses; challenges of quitting smoking and maintaining cessation; dealing with second-hand smoke; beliefs and myths about quitting smoking; difficulty paying for and obtaining medications; positive experiences obtaining and managing medications; difficulties in using sleep machines at home; expressions of disappointment with the departure of their doctors; and overall satisfaction with the clinic health care providers. The study led to the creation of an action plan that addresses the concerns expressed by the focus study participants. The action plan is spearheaded by a designated bilingual and bicultural nurse and is now in operation.     

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda

There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls’ and boys’ sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children’s psychosocial development and well-being.