Skip to main content
NCBI home page
Journal of Research in Nursing logoLink to Journal of Research in Nursing
. 2019 Apr 29;24(6):420–430. doi: 10.1177/1744987119840066

Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence

Clare Mc Veigh ✉, Joanne Reid 1, Philip Larkin 2, Sam Porter 3, Peter Hudson 4
PMCID: PMC7932269  PMID: 34394556

Abstract

Background

Internationally, non-malignant respiratory disease is on the increase. However, although palliative care is recommended as an appropriate healthcare option for this client group, evidence suggests that these patients and their carers do not receive the same standards of palliative care as patients with a malignant lung condition.

Aim

The aim of this review was to provide a critical overview of the current evidence base in relation to the palliative service provision for people with non-malignant respiratory disease and their carers.

Methods

A review of the literature was conducted in July 2015 and updated in October 2017 and focused on the palliative care service provision for patients with interstitial lung disease, chronic obstructive pulmonary disease and bronchiectasis.

Results

In total, 71 empirical studies were included in the review and grouped into two main themes: patient and carer’s bio-psychosocial symptom needs and management, and palliative care service provision for patients with non-malignant respiratory disease and their carers.

Conclusion

The majority of palliative research focuses on patients with a diagnosis of chronic obstructive pulmonary disease. A deeper insight is required into the palliative service provision experienced by those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease.

Keywords: bronchiectasis, chronic obstructive pulmonary disease, interstitial lung disease, literature review, respiratory disease, palliative care

Introduction

The World Health Organization (WHO, 2002) defines palliative care as a holistic approach to the care of those with a life-limiting illness and their carers, which relieves and prevents suffering through the early identification and assessment of physical, psychological, social and spiritual symptoms. Originally, the only patients who had access to palliative care services were those with a diagnosis of cancer and nearing the end of their life. More recently however, it has been recognised that palliative care is also applicable to patients with a non-malignant disease, not just malignant disease (Mitchell et al., 2012), and is an integral part of a patient’s disease management (O’Neill and Fallon, 1997) from diagnosis.

Non-malignant respiratory disease (NMRD) is an umbrella term that includes conditions such as interstitial lung disease (ILD), bronchiectasis and chronic obstructive pulmonary disease (COPD) (National End of Life Care Intelligence Network, 2011). Worldwide, 210 million people have a diagnosis of COPD and, although the exact amount is not known, it is estimated that millions of others have other forms of chronic respiratory diseases such as ILD and bronchiectasis (WHO, 2008). Non-malignant respiratory disease is a chronic, non-curable, progressive illness that requires appropriate treatment and palliative symptom management. Healthcare professionals (HCPs) provide palliative care in order to help improve the physical, psychosocial and spiritual well-being of patients with a life-limiting illness and their families (Mc Veigh, 2016). The palliative care provided by HCPs who specialise in this area is known as specialist palliative care, and these professionals provide palliative expertise, services and resources (Faull and Blankley, 2015). Generalist palliative care providers are HCPs who provide patients with palliative care but are not defined as specialists due to not having received accredited palliative care training (Gott et al., 2012). Although NMRD is on the increase internationally and nationally, evidence has suggested that patients with NMRD and their carers do not receive the same standards of palliative care as patients with malignant respiratory disease (Goodridge et al., 2008; Partridge et al., 2009). The overall aim of this literature review was to critically discuss the current evidence base in relation to the palliative service provision for people with NMRD and their carers.

Literature review

The search strategy within this literature review is described in Figure 1. Papers were excluded that did not meet the inclusion criteria (Table 1). Empirical research papers were evaluated with guidance from the Critical Appraisal Skills Programme (CASP) critical appraisal tools (CASP UK, 2012), to ensure a systematic and rigorous approach (Aveyard, 2014). The CASP critical appraisal tools provided an evidence-based approach to assess the quality, quantity and consistency of the specific research designs employed by the empirical research included in the review. The literature was also appraised by discussions with the research team. The use of themes was chosen by the researcher to appropriately identify the most commonly occurring issues in the literature (Aveyard, 2014).

Figure 1.

Figure 1.

Open in a new tab

Flow diagram demonstrating the search strategy involving three stages.

Table 1.

Table outlining the inclusion criteria and exclusion.

Inclusion criteria
• Papers that were written in English
• Papers that specifically referred to non-malignant respiratory disease
• Papers published no more than 10 years prior to date of initial database search
• Papers that specifically referred to palliative, hospice, terminal or end-of-life care
Exclusion criteria
• Papers that were not written in English
• Papers that did not specifically refer to non-malignant respiratory disease
• Papers published more than 10 years prior to date of initial database search
• Papers that did not specifically refer to palliative, hospice, terminal or end-of-life care
Open in a new tab

In total, 70 international papers informed the literature review: 34 quantitative and 36 qualitative. Each empirical paper was explored and the two themes that emerged from the literature were patient and carer’s bio-psychosocial symptom needs and management, and palliative care service provision for patients with NMRD and their carers.

Patient and carers’ bio-psychosocial symptom needs and management

There are a number of complex symptoms associated with NMRD which can lead to reduced quality of life for these patients and their carers. Breathlessness is the symptom most commonly experienced by patients with a diagnosis of NMRD and is often the symptom found to be most distressing and severe (Bajwah et al., 2013; Bausewein et al., 2010; Blinderman et al., 2009; Ek and Ternestedt, 2008; Gysels and Higginson, 2008; Habraken et al., 2008; Janssen et al., 2011; White et al., 2011). For patients with advanced COPD, breathlessness can cause increased disability and impact on their quality of life (Blinderman et al., 2009). Gysels and Higginson (2008) argued that breathlessness can prevent patients with COPD from accessing services. Their research involved semi-structured interviews conducted with 18 patients diagnosed with moderate or severe COPD, who were experiencing problems regarding their breathlessness. Gysels and Higginson conveyed that patients had come to just adapt to their breathlessness and its restrictions as it had gradually worsened from the start of their illness. They also concluded that patients tried to hide how bad their breathlessness was as they associated it with smoking and feared that the public, and HCPs, would judge the cause of breathlessness as self-inflicted. Participants additionally expressed that they were given little advice on how to manage their symptoms and were also offered limited treatment options. Gysel and Higginson (2008) and previous research (Ek and Ternestedt 2008; Hasson et al., 2008) have emphasised the importance of a palliative care approach for patients with advanced COPD.

Breathlessness is a symptom not isolated to patients with COPD as it can also be experienced by patients with other forms of NMRD. Bajwah et al. (2013) highlighted that patients with idiopathic pulmonary fibrosis (IPF), a form of ILD, also experienced severe breathlessness due to their condition. They conducted 18 qualitative interviews with patients with advanced IPF, their carers and the HCPs involved in their care from two specialist ILD clinics in the UK. However, previous evidence highlighted that patients with ILD experienced multiple symptoms, alongside breathlessness, that were related to their illness (Bajwah et al., 2012a). Bajwah et al. previously completed a retrospective analysis of the case notes of 45 patients with IPF who had died up to 17 months previously in the UK. This study aimed to assess the palliative care symptom needs of patients with IPF and demonstrated that 93% of participants experienced breathlessness in their last year of life, 60% experienced a cough, 29% experienced chest pain, 29% experienced fatigue and 22% experienced depression or anxiety. However, as this study involved a retrospective chart review, caution must be taken in interpreting these results as some of the symptoms experienced by patients with IPF may not have been fully documented.

Although breathlessness is typically the main symptom associated with NMRD, patients also experience psychosocial symptoms (Janssen et al., 2011; Philip et al., 2012; Stenzel et al., 2015; White et al., 2011). White et al. (2011) carried out a cross-sectional quantitative study in the UK involving 163 patients with severe COPD. Results illuminated that 35% (95% CI) of the participants were at high risk of anxiety and 43% (95% CI) were at high risk of depression. Similarly, Janssen et al. (2011) highlighted that 28% of participants experienced depression, alongside other physiological symptoms. Janssen et al. carried out an observational study in Holland involving 105 outpatients with severe COPD. Results additionally demonstrated that the majority of participants were unaware of the interventions that were available to them to aid both psychological and physiological symptom management, including medication and treatment provided by HCPs.

There have been several studies that have explored the needs and experiences of carers of patients with an NMRD diagnosis (Gysels and Higginson, 2008; Hasson et al., 2009; Hynes et al., 2012; Philip et al., 2014; Simpson et al., 2010; Spence et al., 2008). Caring for a patient with advanced COPD can have a physical and psychological impact on the carer (Philip et al., 2014) and they therefore require support from HCPs (Kanervisto et al., 2007). Philip et al. conducted semi-structured interviews in Australia with active (n = 9) and bereaved (n = 10) carers of patients with severe COPD. Findings demonstrated that many participants expressed that they had not chosen to be a carer. This related to the participants’ perception that the support they provided the patient initially had gradually developed into them having a significant caring role; however, there was no alternative to this role as they were the patient’s sole carer. Results also indicated that the carer-burden participants’ experience increased as the patients’ illness progressed and their needs became more complex. Philip et al. also stated that many carers felt their caring role had a psychosocial impact on their health as they felt isolated and unprepared within their role, and experienced anxiety. HCPs need to recognise the bio-psychosocial needs of carers of patients with severe COPD and be able to manage them appropriately.

Previous research has also highlighted that the palliative care needs, and symptom burden, of patients diagnosed with severe COPD (Bausewein et al., 2010; Habraken et al., 2009; Maric et al., 2016; Weingaertner et al., 2014: Wysham et al., 2015) and ILD (Matsunuma et al., 2016) may be as high as those with advanced lung cancer. Bausewein et al. (2010) conducted a cross-sectional study in Germany involving 49 patients with cancer and 60 with COPD. Participants in the study completed questionnaires to measure their physical and psychological symptoms, as well as their palliative care needs. Bausewein et al. acknowledged that both groups had a similarly high symptom burden and ascertained that the most prevalent symptoms in both groups were breathlessness (42% cancer, 58% COPD), fatigue (41% cancer, 43% COPD) and cough (38% cancer, 37% COPD). Although this study aimed to recruit patients from hospitals, homes and respiratory clinics, the majority of participants were from an in-patient setting. This may have affected the generalisability of the study as the perspectives of patients within the primary care setting were lacking. Additionally, patients within the acute hospital setting may have been admitted with an exacerbation of their condition and therefore may have experienced greater symptom burden. However, Bausewein et al. demonstrated that patients with COPD had considerable symptom burden comparable to patients with advanced cancer.

Evidence also suggested that NMRD can cause disease uncertainty amongst patients, family carers and HCPs (Ek et al., 2015; Gott et al., 2009; Pinnock et al., 2011; Sampson et al., 2015). Pinnock et al. (2011) explored the perceptions of HCPs, patients and informal caregivers regarding advanced COPD. Pinnock et al. (2011: 5) highlighted that patients with COPD conveyed a ‘chaos narrative’ of their disease. The patient’s condition fluctuated from illness to wellness, leaving them unsure of how their illness would progress. Conversely, Bajwah et al. (2012b) suggested that the ILD trajectory aided patients with this form of NMRD, and their carers, to understand the life-limiting nature of their condition due to its rapid progression. Bajwah reported that as the patient’s condition worsened, they became aware of the life-limiting nature of ILD. However, an all-Ireland qualitative study involving 17 bereaved carers of patients with NMRD and 18 HCPs reported that patients with ILD and their carers were often unprepared for the rapid deterioration of their condition (Mc Veigh et al., 2018). Mc Veigh et al. illuminated that this rapid deterioration did not provide any further clarity on the life-limiting nature of the disease.

Palliative care service provision for patients with NMRD and their carers

Optimal and effective health-service provision plays a key role in the delivery of effective palliative care to patients with NMRD and their carers. However, research has shown that patients with NMRD, and their carers, do not always receive the palliative service provision they require (Buxton et al., 2010; Fitzsimons et al., 2007; Goodridge et al., 2008, 2010; Gysels and Higginson, 2008; Habraken et al., 2008; Hasson et al., 2008: Janssen et al., 2011; Mc Veigh et al., 2017, 2018; Partridge et al., 2009; Pinnock et al., 2011; Roberts et al., 2008; Rush et al., 2017). Roberts et al. (2008) conducted a survey involving 100 acute NHS hospitals across the UK investigating the existing care, and quality of this care, available to patients with COPD. This survey highlighted that less than 50% of the hospitals involved had specialist palliative care services available in their area that included patients with COPD, leading to poor access to local specialist palliative care provision for this client group. This study’s main limitation, however, was that it sought the opinions of lead respiratory physicians, who may have only provided what they perceived to be best practice.

In the UK, patients with NMRD often have less access to specialist palliative care than those with a malignant lung disease (Partridge et al., 2009). Partridge et al. carried out a study across England, Wales and Northern Ireland in which 107 respiratory physicians completed a questionnaire regarding specialist palliative care services for patients with NMRD. Findings indicated that patients with severe NMRD had less overall access to specialist palliative care services (21.5%) than those with lung cancer. The study reported that although two-thirds of hospital inpatients, inclusive of those with NMRD, could easily access specialist palliative care advice, there was less accessibility related to palliative medicine out-patient services. Also, only a small number of physicians involved in the study reported easy access to hospice day or inpatient care for patients with NMRD. The study’s reliability may be questioned as the validity of the questionnaire is not discussed. Also, as previously mentioned in relation to other studies, its results were based on the views of respiratory physicians alone and the study may have gained a greater insight into this phenomenon by involving other members of the multidisciplinary team.

The geographical area in which a patient diagnosed with NMRD lives can also influence the level of palliative care service provision they receive (Goodridge et al., 2010). Goodridge et al. (2010) undertook a cohort study retrospectively investigating the healthcare data of 1098 patients who died of a respiratory illness in Canada. This was a novel study as it aimed to examine the rural–urban differences in healthcare utilisation, or location of death for patients who died of COPD or lung cancer. Results conveyed that patients in their last year of life living in rural areas were less likely to receive physician visits and home care services than those in urban areas. However, this study did not investigate the reasons for the differences in the palliative care provided in rural and urban areas. Palliative care provision for NMRD in rural and urban areas needs to be further explored, and future research should take into account not only the patients’ and carers’ perspectives, but also the views of HCPs regarding the delivery of generalist and specialist palliative care to these patients. This would help to provide an insight into the barriers and facilitators associated with providing care to patients with NMRD in rural and urban areas.

Higginson et al. (2014) conducted a randomised controlled trial (RCT) in the UK assessing the effectiveness of integrating specialist palliative care early for patients with advanced disease. Of the participants, 54% had a diagnosis of COPD (n = 57), 20% cancer (n = 21), 18 % ILD (n = 19), 5% heart failure (n = 5) and 3% had another form of advanced disease (n = 3). The involvement of specialist palliative care early in the disease trajectory of patients with ILD can help manage their physiological and psychosocial symptoms (Higginson et al., 2014). This RCT demonstrated that patients with ILD and COPD who received early specialist palliative care involvement experienced alleviated breathlessness and increased short-term survival: 100% (n = 29) versus 79% (n = 22) for COPD, and 100% (n = 7) versus 67% (n = 8) for ILD at 180 days post commencement of the study. Further investigation with this population is required, however, to illuminate the effects of early specialist palliative care on long-term survival, findings that have previously been identified in patients with lung cancer (Temel et al., 2010). Although previous research has recommended the involvement of specialist palliative care for patients with ILD (Bajwah et al., 2012a, 2013; Higginson et al., 2014), referrals to specialist care are often low for this patient group (Bajwah et al., 2013; Lindell et al., 2015; Mc Veigh et al., 2017). Mc Veigh et al. illuminated that this is often attributed to HCPs’ lack of awareness of the role of palliative care for this client group.

Some research has provided evidence of ways in which optimal palliative care service provision can be provided to patients with NMRD (Farquhar et al., 2016; Janssen et al., 2010; Mc Veigh et al., 2017). Janssen et al. provided details of three case studies of patients diagnosed with COPD or ILD who were part of a patient-centred interdisciplinary palliative care programme specifically for patients with end-stage NMRD in the Netherlands. The programme involved the daily management of patients’ symptoms by a team consisting of both specialist and generalist palliative care providers. Janssen et al. argued that the results demonstrated how a palliative care programme may have helped to improve the patients’ quality of life, reduced their need for hospital admissions and supported patients with NMRD in achieving a better quality of death through the appropriate management of symptoms such as breathlessness. However, this research was not inclusive of all forms of NMRD. Mc Veigh et al. (2017) highlighted a potential model of palliative care for patients with NMRD, inclusive of bronchiectasis. The potential model was derived from the findings of qualitative interviews with bereaved carers of patients with NMRDs and focus group with HCPs. This model proposed three levels of holistic care for this client group, highlighting the importance of the involvement of generalist palliative care and specialist respiratory care providers in the care of patients with NMRD from diagnosis. It additionally proposed that the need for specialist palliative care involvement should be assessed throughout the illness trajectory and involved based on symptom complexity. However, Janssen et al. and Mc Veigh et al. argued the need for further interventional research to explore the implementation of these models of palliative care in clinical practice.

Conclusions

Evidence has suggested disparities in the provision of specialist and generalist palliative care to patients with NMRD, in comparison to those with a malignant diagnosis. This review of the literature has highlighted that there are several gaps in the current research involving the palliative care provided to patients with NMRD. Further research is required in order to provide a deeper insight into the palliative care provision experienced by those diagnosed with ILD and bronchiectasis alongside COPD, as the majority of research investigates COPD alone.

Key points for policy, practice and/or research

  • Evidence has suggested that patients with NMRD and their carers do not receive the same standards of palliative care as patients with malignant respiratory disease.

  • Family caregivers also require holistic care.

  • There is a lack of evidence regarding palliative care for ILD and bronchiectasis.

  • Future policy needs to acknowledge the role of palliative care for patients with all forms of NMRD, and their carers, and ensure optimal implementation in clinical practice.

Supplemental Material

Supplemental material for Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence
Click here for additional data file. (209.7KB, pdf)

Supplemental Material for Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence by Clare Mc Veigh, Joanne Reid, Philip Larkin, Sam Porter and Peter Hudson in Journal of Research in Nursing

Biography

Clare Mc Veigh is a lecturer (Education) within the School of Nursing and Midwifery at Queen's University Belfast and her background is as a registered nurse working in oncology and specialist palliative care. Clare's research interests lie in palliative care for non-malignant conditions, and palliative care education at undergraduate and postgraduate level.

Joanne Reid is a Chair of Cancer and Palliative Care in the School of Nursing and Midwifery at Queen's University Belfast and is also Chair of the Palliative Care Research Network Strategic Scientific Committee, All Ireland Institute of Hospice and Palliative Care; the Queen's University Belfast representative in the European Palliative Care Research Centre; and an external examiner for the European Certificate in essential palliative care. Professor Reid's research interests predominately lie in cancer and palliative care. She has an established and international portfolio of research expertise and had led research and publications with multi-disciplinary international teams and her research has informed national and international evidence-based guidelines.

Philip Larkin is a Chair in Palliative Care Nursing at the University of Lausanne, Switzerland. He is also the Academic Director of the University Institute for Health Research and Training. He has over 25 years of experience in the palliative care sector, both clinically and academically. He led the development of the All Ireland Institute for Hospice and Palliative Care and since 2015 he has chaired the European Association of Palliative Care (EAPC).

Sam Porter is the Professor of Nursing Sociology at Bournemouth University and Head of the Department of Social Sciences and Social Work. His substantive interests include palliative care and art-based therapies. Methodologically, he is involved in the development of critical realist approaches to health research.

Peter Hudson is the Director of the Centre for Palliative Care which is a state wide academic unit based at St Vincent's Hospital and a Collaborative Centre of The University of Melbourne, Australia. He is a Professor (Honorary) at The University of Melbourne and Professor (Honorary) at Vrije University Brussels, Belgium. Peter is a registered nurse with more than twenty-five years' experience in palliative care practice, education and research.

Contributor Information

Joanne Reid, School of Nursing and Midwifery, Queen’s University Belfast, UK.

Philip Larkin, School of Nursing, Midwifery and Health Systems, University College Dublin, Ireland.

Sam Porter, Department of Social Sciences and Social Work, Bournemouth University, UK.

Authors’ note

Philip Larkin is now affiliated with Faculty of Biology and Medicine, The University of Lausanne, Switzerland.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Ethical permissions

Ethical permissions were not required as this review did not include primary data collection.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Supplemental material

Supplemental material for this article is available online.

References

  1. Aveyard H (2014) Doing A Literature Review In Health And Social Care: A Practical Guide: A Practical Guide. United Kingdom: McGraw-Hill International.
  2. Bajwah S, Higginson IJ, Ross JR, et al. (2012. a) Specialist palliative care is more than drugs: A retrospective study of ILD Patients. Lung 190(2): 215–220. [DOI] [PubMed] [Google Scholar]
  3. Bajwah S, Higginson IJ, Ross JR, et al. (2013) The palliative care needs for fibrotic interstitial lung disease: A qualitative study of patients, informal carers and health professionals. Palliative Medicine 27(9): 869–876. [DOI] [PubMed] [Google Scholar]
  4. Bajwah S, Koffman J, Higginson IJ, et al. (2012. b) ‘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. BMJ Supportive & Palliative Care 3(1): 84–90. [DOI] [PubMed] [Google Scholar]
  5. Bausewein C, Booth S, Gysels M, et al. (2010) Understanding breathlessness: Cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. Journal of Palliative Medicine 13(9): 1109–1118. [DOI] [PubMed] [Google Scholar]
  6. Blinderman CD, Homel P, Billings JA, et al. (2009) Symptom distress and quality of life in patients with advanced chronic obstructive pulmonary disease. Journal of Pain and Symptom Management 38(1): 115–123. [DOI] [PubMed] [Google Scholar]
  7. Buxton KL, Stone RA, Buckingham RJ, et al. (2010) Current and planned palliative care service provision for chronic obstructive pulmonary disease patients in 239 UK hospital units: Comparison with the gold standards framework. Palliative Medicine 24(5): 480–485. [DOI] [PubMed] [Google Scholar]
  8. Critical Appraisal Skills Programme (CASP) UK (2012) CASP Checklists. Available at: http://www.casp-uk.net/#!casp-tools-checklists/c18f8 (accessed 22 September 2017).
  9. Ek K, Ternestedt BM. (2008) Living with chronic obstructive pulmonary disease at the end of life: A phenomenological study. Journal of Advanced Nursing 64(4): 470–478. [DOI] [PubMed] [Google Scholar]
  10. Ek K, Andershed B, Sahlberg-Blom E, et al. (2015) ‘The unpredictable death’: The last year of life for patients with advanced COPD: Relatives’ stories. Palliative & Supportive Care 13(5): 1213–1222. [DOI] [PubMed] [Google Scholar]
  11. Farquhar MC, Prevost AT, McCrone P, et al. (2016) The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: Mixed findings of a mixed method randomised controlled trial. Trials 17(1): 185. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Faull C, Blankley K. (2015) Palliative Care, 2nd edn. Oxford: Oxford University Press. [Google Scholar]
  13. Fitzsimons D, Mullan D, Wilson JS, et al. (2007) The challenge of patients’ unmet needs in the final stages of chronic illness. Palliative Medicine 21: 313–322. [DOI] [PubMed] [Google Scholar]
  14. Goodridge D, Lawson J, Duggleby W, et al. (2008) Health care utilization of patients with chronic obstructive pulmonary disease and lung cancer in the last 12 months of life. Respiratory Medicine 102(6): 885–891. [DOI] [PubMed] [Google Scholar]
  15. Goodridge D, Lawson J, Rennie D, et al. (2010) Rural/urban differences in health care utilization and place of death for persons with respiratory illness in the last year of life. Rural and Remote Health 10(1349): 1–15. [PubMed] [Google Scholar]
  16. Gott M, Seymour J, Ingleton C, et al. (2012) ‘That’s part of everybody’s job’: The perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliative Medicine 26(3): 232–241. [DOI] [PubMed] [Google Scholar]
  17. Gott MC, Gardiner NS, Payne S, et al. (2009) Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine 23(7): 642–648. [DOI] [PubMed] [Google Scholar]
  18. Gysels M, Higginson IJ. (2008) Access to services for patients with chronic obstructive pulmonary disease: The invisibility of breathlessness. Journal of Pain and Symptom Management 36(5): 451–460. [DOI] [PubMed] [Google Scholar]
  19. Habraken JM, Pols J, Bindels PJE. (2008) The silence of patients with end-stage COPD: A qualitative study. British Journal of General Practice 58: 844–849. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Hasson F, Spence A, Waldron M, et al. (2008) I cannot get a breath: Experiences of living with advanced chronic obstructive pulmonary disease. International Journal of Palliative Nursing 14(11): 526–531. [DOI] [PubMed] [Google Scholar]
  21. Hasson F, Spence A, Waldron M, et al. (2009) Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease. Journal of Palliative Care 25(3): 157–163. [PubMed] [Google Scholar]
  22. Higginson IJ, Bausewein C, Reilly CC, et al. (2014) An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: A randomised controlled trial. The Lancet Respiratory Medicine 2(12): 979–987. [DOI] [PubMed] [Google Scholar]
  23. Hynes G, Stokes A, McCarron M. (2012) Informal care-giving in advanced chronic obstructive pulmonary disease: Lay knowledge and experience. Journal of Clinical Nursing 21(7–8): 1068–1077. [DOI] [PubMed] [Google Scholar]
  24. Janssen DJA, Curtis JR, Au DH, et al. (2011) Patient–clinician communication about end-of-life care for Dutch and US patients. European Respiratory Journal 38(2): 268–276. [DOI] [PubMed] [Google Scholar]
  25. Janssen DJA, Spruit MA, Alsemgeest TPG, et al. (2010) A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases. International Journal of Palliative Nursing 16(4): 189–194. [DOI] [PubMed] [Google Scholar]
  26. Kanervisto M, Kaistila T, Paavilainen E. (2007) Severe chronic obstructive pulmonary disease in a family’s everyday life in Finland: Perceptions of people with chronic obstructive pulmonary disease and their spouses. Nursing and Health Sciences 9: 40–47. [DOI] [PubMed] [Google Scholar]
  27. Lindell KO, Liang Z, Hoffman LA, et al. (2015) Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. Chest 147(2): 423–429. [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Mc Veigh C (2016) Palliative care approaches to chronic obstructive airways disease. In: Ingleton C and Larkin P (eds) Palliative Care Nursing: At a glance. Chichester: Wiley.
  29. Mc Veigh C, Reid J, Larkin P, et al. (2018) The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study. Journal of Advanced Nursing 74(2): 383–394. [DOI] [PubMed]
  30. Mc Veigh C, Reid J, Larkin P, et al. (2017) The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: A qualitative study. BMC Palliative Care 17(1): 6. [DOI] [PMC free article] [PubMed] [Google Scholar]
  31. Mc Veigh C (2016) Palliative care approaches to chronic obstructive airways disease. In: Ingleton C and Larkin P (eds) Palliative Care Nursing: At a glance. Chichester: Wiley.
  32. Matsunuma R, Takato H, Takeda Y, et al. (2016) Patients with end-stage interstitial lung disease may have more problems with dyspnea than end-stage lung cancer patients. Indian Journal of Palliative Care 22(3): 282. [DOI] [PMC free article] [PubMed] [Google Scholar]
  33. Mitchell H, Noble S, Finlay I, et al. (2012) Defining the palliative care patient: Its challenges and implications for service delivery. BMJ Supportive and Palliative Care 3: 46–52. [DOI] [PubMed] [Google Scholar]
  34. National End of Life Care Intelligence Network (2011) Deaths from Respiratory Diseases: Implications for End-of-Life Care in England, Bristol: National End of Life Care Intelligence Network. [Google Scholar]
  35. O’Neill B, Fallon M. (1997) ABC of palliative care: Principles of palliative care and pain control. British Medical Journal 315: 801–804. [DOI] [PMC free article] [PubMed] [Google Scholar]
  36. Partridge MR, Khatri A, Sutton L, et al. (2009) Palliative care services for those with chronic lung disease. Chronic Respiratory Disease 6: 13–17. [DOI] [PubMed] [Google Scholar]
  37. Philip J, Gold M, Brand C, et al. (2012) Negotiating hope with chronic obstructive pulmonary disease patients: A qualitative study of patients and HCPs. Internal Medicine Journal 42(7): 816–822. [DOI] [PubMed] [Google Scholar]
  38. Philip J, Gold M, Brand C, et al. (2014) Facilitating change and adaptation: The experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease. Journal of Palliative Medicine 17(4): 421–427. [DOI] [PubMed] [Google Scholar]
  39. Pinnock H, Kendall M, Murray SA, et al. (2011) Living and dying with severe chronic obstructive pulmonary disease: Multi-perspective longitudinal qualitative study. British Medical Journal 342(d142): 1–10. [DOI] [PMC free article] [PubMed] [Google Scholar]
  40. Roberts CM, Seiger A, Buckingham RJ, et al. (2008) Clinician perceived good practice in end-of-life care for patients with COPD. Palliative Medicine 22: 855–858. [DOI] [PubMed] [Google Scholar]
  41. Rush B, Hertz P, Bond A, et al. (2017) Use of palliative care in patients with end-stage COPD and receiving home oxygen: National trends and barriers to care in the United States. CHEST Journal 151(1): 41–46. [DOI] [PMC free article] [PubMed] [Google Scholar]
  42. Sampson C, Gill BH, Harrison NK, et al. (2015) The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): Results of a qualitative study. BMC Pulmonary Medicine 15(1): 155. [DOI] [PMC free article] [PubMed] [Google Scholar]
  43. Simpson AC, Young J, Donahue M. (2010) A day at a time: Caregiving on the edge in advanced COPD. International Journal of Chronic Obstructive Pulmonary Disease 5: 141–151. [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Spence A, Hasson F, Waldron M, et al. (2008) Active carers: Living with chronic obstructive pulmonary disease in the family. International Journal of Palliative Nursing 14(8): 368–372. [DOI] [PubMed] [Google Scholar]
  45. Stenzel NM, Vaske I, Kühl K, et al. (2015) Prediction of end-of-life fears in COPD: Hoping for the best but preparing for the worst. Psychology & Health 30(9): 1017–1034. [DOI] [PubMed] [Google Scholar]
  46. Temel JS, Greer JA, Muzikansky A, et al. (2010) Early palliative care for patients with metastatic non -small-cell lung cancer. New England Journal of Medicine, 363(8), 733–742. [DOI] [PubMed]
  47. Weingaertner V, Scheve C, Gerdes V, et al. (2014) Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: A cohort study. Journal of Pain and Symptom Management 48(4): 569–581. [DOI] [PubMed] [Google Scholar]
  48. White P, White S, Edmonds P, et al. (2011) Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease: A prospective community survey. The British Journal of General Practice 61(587): 362–370. [DOI] [PMC free article] [PubMed] [Google Scholar]
  49. World Health Organization (WHO) (2002) The WHO Definition of Palliative Care. Available at: http://www.who.int/cancer/palliative/definition/en/ (accessed 20 October 2017).
  50. World Health Organization (WHO) (2008) Action Plan for the Global Alliance Against Chronic Respiratory Diseases, 2008–2013, Geneva: WHO. [Google Scholar]
  51. Wysham NG, Cox CE, Wolf SP, et al. (2015) Symptom burden of chronic lung disease compared with lung cancer at time of referral for palliative care consultation. Annals of the American Thoracic Society 12(9): 1294–1301. [DOI] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplemental material for Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence
Click here for additional data file. (209.7KB, pdf)

Supplemental Material for Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence by Clare Mc Veigh, Joanne Reid, Philip Larkin, Sam Porter and Peter Hudson in Journal of Research in Nursing

Articles from Journal of Research in Nursing: JRN are provided here courtesy of SAGE Publications

RESOURCES