Review article
Health care needs in end-stage COPD: A structured literature review

https://doi.org/10.1016/j.pec.2007.05.011Get rights and content

Abstract

Objective

To give an overview of relevant literature regarding health care needs in end-stage COPD and to identify specific areas where knowledge about needs is still lacking.

Methods

We conducted a structured literature review. We used Bradshaw's classification system.

Results

Seventy-seven publications were found. Ten publications were included in the review. The results reported cover a wide range of subjects, all regarded as health care needs. Most reported on ‘felt need’, i.e. needs that are mentioned by patients themselves. Results on ‘normative need’ (based on expert judgement) were lacking.

Conclusion

The literature about the health care needs of patients in the end-stage of COPD is sparse, and there is no commonly accepted definition of health care needs. Looking at the increasing demand for end of life care for COPD patients, there is a clear need for further research on this subject.

Practice implications

We especially need to focus on agreement between experts and professionals so that guidelines can be developed. To attend to the unfulfilled needs of end-stage COPD patients, the delivery of health care should be re-examined carefully.

Introduction

The demand for palliative care for patients with chronic obstructive pulmonary disease (COPD) will increase in the coming decades as a consequence of the increasing attention for palliative care and the increasing prevalence of COPD and because of an overall shift in mortality towards chronic diseases. According to the Global Burden of Disease study (GBS) of the World Health Organisation (WHO), COPD is currently the fourth leading cause of death in the world, and further increases in the prevalence and mortality of the disease can be predicted in the coming decades [1]. In the Netherlands, over 6300 people die from COPD yearly, 58% of whom are male and 42% female [2]. This accounts for almost 5% of total Dutch mortality. Palliative care historically focuses on cancer disease trajectories, and specialised services for patients with a non-malignant disease like COPD are still in a developing stage [3], [4], [5]. Palliative care focuses on maximising the quality of life of patients and their families facing problems associated with a life-threatening illness and includes care on psychological, social and spiritual dimensions.

It is important to gain more insight into the care needs of COPD patients who are going through the last part of their disease trajectory. COPD is a chronic condition that is characterised by a progressive loss of lung function with intermittent serious episodes or exacerbations [6]. Each exacerbation further diminishes lung capacity and this will finally result in death. However, the exact timing of death remains uncertain. The patient usually survives many such episodes. Therefore, the last phase of life for COPD patients can be very long and indistinct which makes it difficult to determine what type of supportive care is most appropriate at what time.

In this study, we show what is known in the literature about the needs of COPD patients in the end-stage of the disease. We conducted a structured literature review in order to gather all published data that address this question and identified specific areas where knowledge about needs is still lacking.

Section snippets

Literature search

We performed a systematic search of the literature using PubMed (1953–March 2007) and Embase (1980–week 12, 2007): (search date 28 March 2007). We searched all terms in PubMed as words in text, title and abstract and as MESH terms. In Embase we searched subject headings and key words. The search strategy consisted of three parts and was set up to search as sensitively as possible. The first part identified COPD patients, the second part focussed on the terminal or palliative phase and in the

Results

Seventy-seven publications were found after excluding doubles between databases. In total, 68 publications were excluded: 20 publications were not a primary investigation, 24 publications did not have COPD as the main subject, 10 did not describe the end-stage of the disease, 9 did not describe health care needs, 5 were not written in English or Dutch. The nine remaining publications were included in this review. One other publication was included in the review. This publication was suggested

Discussion

We found that very few studies have been published about the health care needs of end-stage COPD patients. This is surprising, because of the high prevalence and the high burden of COPD worldwide. We identified specific areas where knowledge about needs is lacking.

The studies that have been published, predominantly report on felt need, i.e. needs that are mentioned by patients themselves. All but one study used (group) interviews as a qualitative method of data collection. This is an

Acknowledgements

This research was funded by the Netherlands Asthma Foundation (CJA 04005). The authors would further like to thank Prof. J.M. Addington-Hall, Dr. A.J. Pols and Dr. E.J.M. Weersink for their invaluable advice.

References (23)

  • L. Cicutto et al.

    Self-care issues from the perspective of individuals with chronic obstructive pulmonary disease

    Patient Educ Couns

    (2004)
  • S.J. Guthrie et al.

    Living with severe COPD. A qualitative exploration of the experience of patients in Leeds

    Resp Med

    (2001)
  • World Health Organization

    Chronic respiratory diseases COPD: Burden

    (2006)
  • Statistics Netherlands. Deaths among the Dutch population by main primary cause of death, sex and age 2005....
  • L. Blackler et al.

    Palliative care in the management of chronic obstructive pulmonary disease

    Brit J Nurs

    (2004)
  • P.A. Coventry et al.

    Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review

    Age Ageing

    (2005)
  • J.K. Skilbeck et al.

    End of life care: a discursive analysis of specialist palliative care nursing

    J Adv Nurs

    (2005)
  • S.A. Murray et al.

    Illness trajectories and palliative care

    BMJ

    (2005)
  • J. Bradshaw

    The concept of social need

    New Society

    (1972)
  • J. Bradshaw

    The conceptualization and measurement of need: a social policy perspective

  • P. Edmonds et al.

    A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer

    Palliative Med

    (2001)
  • Cited by (38)

    • Symptom burden in patients with chronic obstructive pulmonary disease

      2021, Applied Nursing Research
      Citation Excerpt :

      A multidimensional symptom assessment that includes multiple symptoms rather than focusing on the cardinal symptoms of COPD is important and should be performed for all stages of COPD. Previous research of patients' experience of care has reported poor service delivery, little help offered by health care professionals for symptom relief (Elkington, White, Addington-Hall, Higgs, & Pettinari, 2004), poor symptom control (Jones et al., 2004), and poor quality of life for those with advanced-stage COPD (Habraken, Willems, De Kort, & Bindels, 2007). However, researchers such as Habraken, Poles, Bindels, and Williems (2008) and Jones et al. (2004) also report that many patients with COPD would not express their needs as they did not know that there were options to improve their situation.

    • Loss of Dignity in Severe Chronic Obstructive Pulmonary Disease

      2016, Journal of Pain and Symptom Management
      Citation Excerpt :

      Even with rehabilitation, however, COPD is not curable, and the underlying airways disease is generally irreversible. Although there is evidence that those with severe COPD also could benefit from palliative care,7–10 frameworks for its implementation are not well explored. Some investigators have suggested that models developed for patients with cancer represent a reasonable starting point for considerations of palliative care in COPD.11

    • Palliative care and pulmonary rehabilitation

      2014, Clinics in Chest Medicine
      Citation Excerpt :

      Therefore, palliative management programs should assess impairments in basic and instrumental activities of daily living and should try to minimize care dependency and provide support as needed. Studies have shown that there are difficulties with accessing appropriate health and social care services for patients with advanced COPD.8,30,31 Provision of aids and appliances could be improved, for instance, by obtaining support earlier in the course of the disease.31

    View all citing articles on Scopus
    View full text