End of life care in CF: Patients, families and staff experiences and unmet needs

Braithwaite, M.; Philip, Jennifer; Tranberg, Heidi; Finlayson, F.; Gold, Michelle; Kotsimbos, Tom; Wilson, John F.

doi:10.1016/j.jcf.2011.03.002

Cited by 60 publications

(72 citation statements)

References 16 publications

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“…Family care giving has been identified as a top international research priority in end of life care 37 particularly for those caring for people with non-malignant disease. [38][39] There are implications of these findings for both specialist and non-specialist health professionals, particularly around their contribution to initiatives which promote contact between community groups and schools, and palliative care patients and providers (with relevant and credible experience). Increased communication and knowledge sharing between health care professionals (both general and specialist) may also help to create a common language and definition of palliative care -something which has been historically alusive.…”

Section: Discussionmentioning

confidence: 99%

Exploring public awareness and perceptions of palliative care: A qualitative study

et al. 2013

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Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public’s understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. Aim: To explore public perceptions of palliative care and identify strategies to raise awareness. Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant’s expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

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Section: Discussionmentioning

confidence: 99%

Exploring public awareness and perceptions of palliative care: A qualitative study

et al. 2013

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“…Adult CF centres should ensure they have the adequate skills and facilities to deal with palliative care for people with CF [45,46]. End of life care is ideally delivered in an adult centre where appropriate discussions and arrangements can be facilitated and the autonomy of the individual is respected and protected.…”

Section: End Of Life Carementioning

confidence: 99%

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

et al. 2015

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The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major lifethreatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme. @ERSpublications Respiratory physicians, trained in adult CF management, should lead multidisciplinary teams taking care of patients http://ow.ly/SgRgj

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“…This may keep the focus on active treatment and ‘fighting’ the disease process, resulting in avoidance of death as a possible outcome. As a group, transplant clinicians recognise the common trap of collusion with a patient and family in their positivity, hindering open communication 20. Difficulty with prognostication may also explain avoidance of palliative or end of life discussions.…”

Section: What Do Transplant Clinicians Think About Palliative Care Fomentioning

confidence: 99%

“…The majority of transplant clinicians also acknowledge that they and their trainees both require further training in symptom management, communication and end of life care 20 34…”

Section: What Do Transplant Clinicians Think About Palliative Care Fomentioning

confidence: 99%

Palliative care in cardiopulmonary transplantation

McKenna

Clark

2015

BMJ Support Palliat Care

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Cardiopulmonary transplantation is a life-prolonging therapy available to a select population of patients with cardiac or respiratory failure. Transplantation is associated with significant morbidity, mortality and unmet palliative care need. Despite recommendations that palliative care should be a core component of the heart and lung transplant process, collaboration within clinical practice is extremely rare. A key reason for this is the misperception among patients, their families and transplant clinicians, that palliative care is analogous with end of life care. Other challenges include prognostication, communication, and the balance of hope and reality. We suggest a change in clinical practice within cardiopulmonary transplantation, whereby palliative care takes place alongside active management. Greater partnership working will demonstrate clinical credibility and highlight the impact of palliative care interventions. Education is required to address current misperceptions and further research should explore the effect of initiatives to improve palliative care provision for this patient group.

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End of life care in CF: Patients, families and staff experiences and unmet needs

Abstract: Opportunities exist to improve care.

Cited by 60 publications

References 16 publications

Exploring public awareness and perceptions of palliative care: A qualitative study

Exploring public awareness and perceptions of palliative care: A qualitative study

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

Palliative care in cardiopulmonary transplantation

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