‘I wish I knew more ...’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals

Bajwah, Sabrina; Koffman, Jonathan; Higginson, Irene J; Ross, Joy; Wells, Adrian; Birring, Surinder S.; Riley, Julia

doi:10.1136/bmjspcare-2012-000263

Cited by 71 publications

(81 citation statements)

References 31 publications

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“…As IPF is a fatal disease, end-of-life planning has to be a part of this information [30]. Advance care planning (ACP) is a systematic approach to end-of-life conversations that can be used to provide the necessary information for patients and their caregivers.…”

Section: Discussionmentioning

confidence: 99%

The lived experience with idiopathic pulmonary fibrosis: a qualitative study

et al. 2016

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The disease course in idiopathic pulmonary fibrosis (IPF) is variable, but patients experience a progressive decline in lung function and increased symptom burden leading to death. Little is known about the patients' experience and their needs during the disease course or about the burden on family caregivers. Both patients and family caregivers face an altered life as the disease progresses. The aim of our study was to increase knowledge of life with IPF for patients and family caregivers.This study had a qualitative descriptive design using in-depth dyadic interviews with IPF patients (n=25) and family caregivers (n=24). We used the five-step analysis from the framework method and analysed the data on three levels: the patient, the family caregivers and couple level.The following six themes emerged as the main results: information and disclosure, reactional dyssynchrony, perpetual vigilance, emotional ambivalence, gradual and tacit role shift, and adapted coping strategies.Our findings suggest that IPF patients need information at the time of diagnosis, but some issues should be paced as the disease progresses. A palliation plan was demanded by patients and their caregivers. Further efforts are required to provide palliative care to IPF patients starting at the time of diagnosis. @ERSpublications IPF patients and caregivers need information, but full disclosure should be gradual and palliation initiated early

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Section: Discussionmentioning

confidence: 99%

The lived experience with idiopathic pulmonary fibrosis: a qualitative study

et al. 2016

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“…In fact, patients with COPD may experience more severe dyspnea and poorer functional status during a longer and more protracted course of illness than patients with lung cancer (29). Although patients with chronic lung disease face as much, or in some cases more, symptom burden, longer hospital stays, and lower levels of satisfaction of care than patients with cancer (29-32), few discuss their treatment preferences with their physicians or implement advance care planning (7,33,34). These studies document inadequate palliative care before ICU admission for patients with ILD or COPD, and our study documents that these shortcomings continue in the ICU setting.…”

Section: Original Researchmentioning

confidence: 99%

“…Recently, interest has grown in providing palliative care for patients with chronic lung disease, including chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) (1,5,6). The goals of palliative care for these patients include improving quality of life, symptom management, and advance care planning (5,7).…”

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confidence: 99%

Palliative Care for Patients Dying in the Intensive Care Unit with Chronic Lung Disease Compared with Metastatic Cancer

et al. 2016

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Rationale: Palliative care has been focused largely on patients with cancer, and yet patients with chronic lung diseases also have high morbidity and mortality. The majority of deaths in intensive care units (ICUs) follow decisions to withhold or withdraw life-sustaining treatments, suggesting that palliative care is critically important in this setting.Objectives: We explored differences in receipt of elements of palliative care among patients with interstitial lung disease (ILD) and chronic obstructive pulmonary disease (COPD) who die in ICUs compared with patients with cancer.Methods: We identified patients with COPD, ILD, or metastatic cancer who died in the ICUs of 15 Seattle-area hospitals between 2003 and 2008. We used robust multivariable logistic and linear regression to compare differences in receipt of elements of palliative care and length of stay. Measurements and Main Results:Compared with patients with cancer, patients with COPD were more likely to receive cardiopulmonary resuscitation before death and patients with ILD were less likely to have documentation of pain assessment in the last day of life. Patients with ILD and COPD were less likely to have a do-not-resuscitate order in place at the time of death and less likely to have documentation of discussions about prognosis than patients with cancer. Patients with COPD had longer hospital lengths of stay, and patients with COPD and ILD had longer ICU lengths of stay. Conclusions:Among patients who die in the ICU, patients with ILD and COPD receive fewer elements of palliative care and have longer lengths of stay than patients with cancer. These findings identify areas for improvement in caring for patients with chronic lung diseases.Clinical trial registered with www.clinicaltrials.gov (NCT00685893).

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“…Other qualitative work has generated calls to improve the clinical encounter with IPF patients and their caregivers, to better recognise the value of the caregiver and to respond to their different and changing needs through the trajectories of IPF [11], and to emphasise the value of peer support for IPF patients [12]. Work is underway in a research programme aimed at identifying and addressing the palliative care needs of IPF patients and their caregivers [13], whose needs are described as being similar to the needs of cancer patients' informal caregivers.…”

Section: @Erspublicationsmentioning

confidence: 99%

What's it like to live with idiopathic pulmonary fibrosis? Ask the experts

Russell

Swigris

2016

Eur Respir J

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@ERSpublicationsSharing and informing IPF healthcare decisions through partnerships with patients and their caregivers http://ow.ly/YHp3XOver the last 5-7 years, an enlightened paradigm has emerged for clinical research. In it, patients are not simply "subjects" to be studied or numbers to be analysed; more than "key stakeholders", patients are increasingly (and justly) recognised as the soul and substance of clinical investigation [1]. Patient advocacy organisations have added significant momentum to this movement by promoting patient-centred healthcare and helping to give a global voice to those who suffer from a range of conditions or impairments. Recent discussion on stratified medicine advocates the inclusion of patient perspectives and experience to inform the often complex decision-making processes regarding treatment [2]. Governing bodies and funding organisations have developed policies, programmes and agendas that have largely shaped the paradigm by fostering patient-centred investigations and advocating that studies be designed to ask and answer questions deemed important to patients, and include outcomes that are meaningful to patients [3].How should a clinical investigator formulate questions that are important to patients and select outcomes that are meaningful to patients? The answer is simple: talk to the patients, the true experts of living with their condition. Informal caregivers (spouses, partners, loved ones of patients), sometimes referred to as invisible second patients because they are indirectly affected by the disease, are also experts who can provide rich insight into the patient's condition and adaptive behaviours that patients, themselves, may not see.Qualitative research methods, often operationalised by conducting interviews and/or focus groups, enable researchers to engage the experts of the target population to capture their experiences and perceptions. Sessions are recorded, transcribed verbatim and then analysed. Whilst, historically, qualitative research has been repudiated as inferior science, there is growing recognition of the value of qualitative methods, particularly for addressing questions of understanding. Qualitative and quantitative research methods have many similarities: in each, investigators start with a question, formulate a hypothesis, recruit subjects, collect data, and then analyse and interpret the results. There are also some differences: qualitative studies focus on questions of "how" and "why", so the analytic unit is text (words, phrases and sentences), rather than numeric values generated by the quantitative perspective of "how many" or "how often".In contrast to quantitative studies, in which protocols are necessarily cemented at the outset and remain unchanged throughout the course of the study, some qualitative investigators use a more fluid, malleable approach. For example, one or two interviews or focus groups are conducted, the data are analysed, and the findings are used to inform subsequent interviews or focus groups aimed at filling conspicuous...

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‘I wish I knew more ...’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals

Cited by 71 publications

References 31 publications

The lived experience with idiopathic pulmonary fibrosis: a qualitative study

The lived experience with idiopathic pulmonary fibrosis: a qualitative study

Palliative Care for Patients Dying in the Intensive Care Unit with Chronic Lung Disease Compared with Metastatic Cancer

What's it like to live with idiopathic pulmonary fibrosis? Ask the experts

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