Lung Disease Symptoms Biography
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Objectives
To understand the perspectives of people with severe chronic
obstructive pulmonary disease (COPD) as their illness progresses, and of
their informal and professional carers, to inform provision of care
for people living and dying with COPD. Design Up to four serial
qualitative interviews were conducted with each patient and nominated
carer over 18 months. Interviews were transcribed and analysed both
thematically and as narratives. Participants 21 patients, and 13
informal carers (a family member, friend, or neighbour) and 18
professional carers (a key health or social care professional) nominated
by the patients. Setting Primary and secondary care in Lothian,
Tayside, and Forth Valley, Scotland, during 2007-9. Results Eleven
patients died during the study period. Our final dataset comprised 92
interviews (23 conducted with patient and informal carer together).
Severe symptoms that caused major disruption to normal life were
described, often in terms implying acceptance of the situation as a “way
of life” rather than an “illness.” Patients and their informal carers
adapted to and accepted the debilitating symptoms of a lifelong
condition. Professional carers’ familiarity with the patients’
condition, typically over many years, and prognostic uncertainty
contributed to the difficulty of recognising and actively managing end
stage disease. Overall, patients told a “chaos narrative” of their
illness that was indistinguishable from their life story, with no clear
beginning and an unanticipated end described in terms comparable with
attitudes to death in a normal elderly population.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation. Globally, long term conditions such as chronic obstructive pulmonary disease (COPD) are responsible for an increasing proportion of deaths. Cancer based palliative care services, predicated on an ability to predict a terminal phase of disease, are being extended to encompass people dying with non-malignant disease. Prognostic indicators have been developed to aid identification of people “at risk of dying,” whose physical, psychological, social, and spiritual needs can be assessed and their care planned. There is concern, however, that the slow physical decline of patients with COPD, which is punctuated by potentially serious but unpredictable disease exacerbations, may lead to prevarication rather than provision of anticipatory care. About half of patients discharged after a hospital admission for COPD will die within two years. Markers such as severity of disease, poor nutritional status, comorbid heart disease, depression, impaired quality of life, and older age have all been shown to be associated with an overall poor prognosis. Accurate predictions of life expectancy for individual patients with COPD, however, remain extremely difficult. This difficulty with prognosis is compounded by a tendency for doctors who are familiar with patients to overestimate survival. The only condition where prognosis is less accurate is dementia. People with very severe COPD have a well recognised burden of disabling physical symptoms (especially breathlessness), compounded by comorbidity, psychological distress, and social isolation. Despite these issues, the needs of these patients are typically poorly addressed, and many patients have limited access to specialist palliative care services. The consultation on a strategy for services for COPD in England and the standards of care for COPD in Scotland which advocate adopting a lifelong approach to preventing, diagnosing, and providing care for people with COPD—acknowledge this deficiency and prioritise access to improved end of life care for those “sick enough to die.” To inform current deliberations on how best to provide care for people living and dying with COPD, we undertook an in-depth inquiry seeking to understand the end of life needs of affected patients and their informal and professional carers. Our study took place over 18 months during 2007-9. Ethical approval was obtained from the Multicentre Research Ethics Committee for Scotland (B), and governance approval was obtained from NHS Lothian, NHS Tayside, and NHS Forth Valley.
Longitudinal qualitative research using multi-perspective, serial interviews offers advantages over the more usual single “snapshot” qualitative techniques in understanding patients’ and family carers’ evolving and dynamic experience of illness (box 1). In this study, we invited patients and their nominated informal and professional carers to take part in up to four interviews at 6-9 month intervals. Multidisciplinary perspectives from the research team, an end of study workshop, and views of a lay advisory group were used to ensure breadth of interpretation of the data.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation. Globally, long term conditions such as chronic obstructive pulmonary disease (COPD) are responsible for an increasing proportion of deaths. Cancer based palliative care services, predicated on an ability to predict a terminal phase of disease, are being extended to encompass people dying with non-malignant disease. Prognostic indicators have been developed to aid identification of people “at risk of dying,” whose physical, psychological, social, and spiritual needs can be assessed and their care planned. There is concern, however, that the slow physical decline of patients with COPD, which is punctuated by potentially serious but unpredictable disease exacerbations, may lead to prevarication rather than provision of anticipatory care. About half of patients discharged after a hospital admission for COPD will die within two years. Markers such as severity of disease, poor nutritional status, comorbid heart disease, depression, impaired quality of life, and older age have all been shown to be associated with an overall poor prognosis. Accurate predictions of life expectancy for individual patients with COPD, however, remain extremely difficult. This difficulty with prognosis is compounded by a tendency for doctors who are familiar with patients to overestimate survival. The only condition where prognosis is less accurate is dementia. People with very severe COPD have a well recognised burden of disabling physical symptoms (especially breathlessness), compounded by comorbidity, psychological distress, and social isolation. Despite these issues, the needs of these patients are typically poorly addressed, and many patients have limited access to specialist palliative care services. The consultation on a strategy for services for COPD in England and the standards of care for COPD in Scotland which advocate adopting a lifelong approach to preventing, diagnosing, and providing care for people with COPD—acknowledge this deficiency and prioritise access to improved end of life care for those “sick enough to die.” To inform current deliberations on how best to provide care for people living and dying with COPD, we undertook an in-depth inquiry seeking to understand the end of life needs of affected patients and their informal and professional carers. Our study took place over 18 months during 2007-9. Ethical approval was obtained from the Multicentre Research Ethics Committee for Scotland (B), and governance approval was obtained from NHS Lothian, NHS Tayside, and NHS Forth Valley.
Longitudinal qualitative research using multi-perspective, serial interviews offers advantages over the more usual single “snapshot” qualitative techniques in understanding patients’ and family carers’ evolving and dynamic experience of illness (box 1). In this study, we invited patients and their nominated informal and professional carers to take part in up to four interviews at 6-9 month intervals. Multidisciplinary perspectives from the research team, an end of study workshop, and views of a lay advisory group were used to ensure breadth of interpretation of the data.
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
Lung Disease Symptoms Lungs Diagram of a Smoker after Smoking Cancer Anatomy And Heart Drawing Images AFter Smoking Wee of a Weed Smoker
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