Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

Gardiner, Clare; Gott, Merryn; Small, Neil; Payne, Sheila; Seamark, David; Barnes, Sarah; Halpin, David; Ruse, Charlotte

doi:10.1177/0269216309107003

Cited by 113 publications

(131 citation statements)

References 17 publications

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“…177 l The failure of clinicians to initiate goal of care discussions with patients in hospital, a key finding from our study, was also evident in recent audits of the LCP, 16 in which two-thirds of people on the LCP had no recorded discussion of end-of-life care planning in their clinical notes. l Some (albeit limited) previous empirical work confirms our finding that not everyone prefers 'open awareness' when living with a life-limiting condition, 74,172,178 despite this being a key tenet of the philosophy informing palliative care provision. However, more research in this area is required, as reported below.…”

Section: Summary Of Findings In Relation To the Wider Literaturesupporting

confidence: 59%

“…Research is required to further explore these issues, particularly in light of evidence which suggests that some patients may be reluctant to receive information relating to a poor prognosis or 'bad news'. 74,75 A phased transition incorporating palliative care in parallel with disease-modifying treatments appears the most appropriate model for optimising transitions. This model is particularly relevant for patients with non-cancer disease, whose condition may be more slowly progressive, or with fluctuating trajectories.…”

Section: Optimising and Improving Transitionsmentioning

confidence: 99%

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Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Summary Of Findings In Relation To the Wider Literaturesupporting

confidence: 59%

Section: Optimising and Improving Transitionsmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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“…Having an opportunity to meet with healthcare staff after day surgery is important to patients (Rhodes et al, 2006, Gilmartin, 2007, Stomberg et al, 2008, Knier et al, 2015. Day surgery leads to emotional stress, such as anxiety and fear, counselling meaning that emotional counselling is also necessary (Hagberth, 2008, Stomberg et al, 2008, Gardiner et al, 2009). Prior to discharge, the content of counselling should include information about nausea, fatigue and possible urinary problems (Susilahti et al, 2004).…”

Section: Introductionmentioning

confidence: 99%

Quality of counselling for knee and shoulder arthroscopy patients during day surgery

Kaakinen

Ervasti

Kääriäinen

2017

International Journal of Orthopaedic and Trauma Nursing

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“…The chronic diseases researched included Chronic pulmonary disease (COPD) [46,47] , asthma [48,49] , hypertension [50,51] , rheumatoid arthritis [42,43,52,53] , diabetes [40,54,[55][56][57][58] , heart failure [59][60][61] and chronic back pain [44,62] . One study encompassed several chronic diseases: diabetes, congestive heart failure and hypertension [41] .…”

Section: General Description Of Studiesmentioning

confidence: 99%

“…Table 3. Narrative synthesis of counseling needs with chronic illness with chronic illness [41,43,45,46,49,51,54,58,59,61,63,64] . Despite having counseling, many adults with chronic illness had difficulty in understanding the information and advice they received [44-46, 55, 59, 60, 61, 70] .…”

Section: The Counseling Needs Of Adults With Chronic Illnessmentioning

confidence: 99%

Counseling chronically ill adults in the healthcare setting: An integrative literature review

Kaakinen¹,

Leena²,

Kääriäinen³

et al. 2012

JNEP

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Background: Chronic diseases among the adult population have increased rapidly worldwide. Chronically ill adults use health services more frequently; they are hospitalized more often and for a longer time than the average. Although counseling is an essential part of the care of chronically ill adults, there is no clear conception of counseling elements in healthcare settings. The aim of this integrative review is to describe the key elements of counseling of adults with chronic diseases. Methods:This integrative literature review describes elements of the counseling of chronically ill adults. The study was conducted by means of a systematic search of CINAHL (1981 to April 2010), Medline (1973 to March 2010 and Medic (1978 to April 2010) databases. Three reviewers selected the studies and two reviewers independently assessed the quality of studies. 31 studies were included in the data extraction and narrative synthesis. Results:The review identifies the following typical elements in the counseling of adults with chronic disease: the counseling needs of chronically ill adults; the implementation of counseling; and the impact of counseling. The counseling needs of chronically ill adults included 1) gaining an understanding of the disease and treatment in relation to everyday life, 2) handling of emotions, 3) social support. The implementation of counseling concerned 1) need-based and goal-oriented counseling, 2) the content of counseling, 3) the nature of interaction and atmosphere of counseling, 4) counseling time, 5) counseling methods and materials, and 6) challenges of implementation. The impact of counseling included increased 1) compliance with medication, 2) ability to cope with feelings, 3) understanding of the disease, and 4) quality of life. Conclusions:This study found that effective counseling should be based on the individual needs of chronically ill adults and it should include more knowledge about social services and provide support in handling emotions. The study also revealed it is important to plan counseling and to set goals in conjunction with chronically ill adults. The results of this review are useful for the development of counseling of chronically ill adults in a variety of healthcare settings.

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Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

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Cited by 113 publications

References 17 publications

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Quality of counselling for knee and shoulder arthroscopy patients during day surgery

Counseling chronically ill adults in the healthcare setting: An integrative literature review

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