Family Practice Vol. 18, No. 4, 440-444
© Oxford University Press 2001
GPs' views of discussions of prognosis in severe COPD
Department of General Practice and Primary Care, Guy's King's and St. Thomas' School of Medicine, Weston Education Centre, Cutcombe Road, London SE5 9RJ, UK.
Elkington H, White P, Higgs R and Pettinari CJ. GPs' views of discussions of prognosis in severe COPD. Family Practice 2001; 18: 440–444.
Received 2 October 2000; Accepted 12 March 2001.
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Abstract |
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Background. Modern palliative care promotes open communication between doctor and patient, which includes access to information about prognosis. GPs play a major role in managing chronic obstructive pulmonary disease (COPD) patients in the final stages of illness. Their views of discussions of prognosis are therefore important if the principles of palliative care are to be extended to COPD.
Objective. Our aim was to investigate the role that discussions of prognosis play in GPs' management of patients with severe COPD and the factors that influence those discussions.
Methods. We conducted a questionnaire survey of all GP principals of one inner London Health Authority (n = 389) in April 1999. Questionnaire development involved a literature review to identify issues of importance to GPs in the discussion of prognosis in COPD, and in-depth interviews with five GPs.
Results. Of the 214 respondents (55% response), 72.5% thought that discussions of prognosis were often necessary or essential in severe COPD. The majority (82%) felt that GPs have an important role in these discussions. However, only a minority (41%) of GPs reported often or always discussing prognosis. Half the GPs were undecided as to whether most patients with COPD wanted to know about their prognosis. Among the GPs who reported rarely or never discussing prognosis (n = 33), a majority felt ill-prepared to discuss the subject (60% reported that there was insufficient information in the primary care notes to be able to discuss prognosis, and 64% found it hard to start discussions with patients).
Conclusion. Although the majority of GPs acknowledged a need to discuss prognosis in severe COPD, this was not reflected in their reported behaviour. It appears that the palliative care approach of open communication, whilst seen to be relevant to severe COPD, is not applied routinely in managing the disease in primary care. Uncertainty among GPs as to how patients view the discussion of prognosis and inadequate preparation may pose potential barriers.
Keywords. Communication, obstructive lung diseases, palliative care, primary health care, prognosis.
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Introduction |
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Opportunities to discuss prognosis in chronic obstructive pulmonary disease (COPD) are likely to arise as the patient's disease progresses and, since 90% of all care in the last year of life is received at home, GPs inevitably have a significant role in the care of many of these patients. The GP, with long-term, personal knowledge of a patient, may be the appropriate person to tackle the potentially sensitive subject of prognosis. How do GPs themselves see their role in discussing prognosis?
COPD accounted for 23 550 deaths in England and Wales in 1994.1 The prognosis can be very poor, with one hospital-based study identifying 50% mortality at 2 years after admission for an acute exacerbation of severe COPD.2 However, for most patients with COPD, the interval from diagnosis to death may be many years, so that choosing the right moment to discuss the prognosis of the disease can be difficult. The management of severe disease is largely palliative and focuses on symptom control and optimizing quality of life.
Palliative care is the active total care of patients and their families by a multiprofessional team when the patient's disease is no longer responsive to curative treatment. Although traditionally linked to cancer, it is increasingly recognized to have a role for patients dying from non-cancer conditions including COPD.3 Among its principles, palliative care promotes open communication between doctor and patient, which includes access to information about diagnosis and prognosis where appropriate. In a 1990 survey, the Regional Study for the Care of the Dying, bereaved carers were interviewed about the last year of life of the deceased. Seventy-five per cent of the deceased cancer patients were reported to have known, or probably known, that they were likely to die.4 Although the regional study has not reported on the experience of people dying from COPD, it has reported for those with heart failure, a condition similar to COPD in being chronic, progressive and incurable. Only half the patients with heart failure were said to have known, or probably have known, that they were likely to die and, of these, >80% were said to have worked this out for themselves rather than having been told by a doctor or nurse.5
Primary care plays a major role in managing COPD. In an average health district, there are 14 200 GP consultations for COPD per year, compared with 11 900 for asthma.6 GPs are therefore likely to participate in any discussions of prognosis with patients with severe disease. Their current practice and views of these discussions are clearly important if the principles of palliative care are to extend to COPD.
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Methods |
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A structured questionnaire was sent to all GP principals in Lambeth, Southwark and Lewisham Health Authority in April 1999. The questionnaire asked GPs about the role that discussions of prognosis played in their management of patients with severe COPD and the factors influencing those discussions. The format of the questionnaire is shown in Box 1
. Respondents were asked to consider a severe COPD patient as someone requiring a home oxygen concentrator. | BOX 1 Questionnaire format The opening questions explored the role of discussions of prognosis in a GP's own clinical practice How necessary do you think discussions about prognosis are in the management of severe COPD?
Not necessary at all
Rarely necessary
Sometimes necessary
Often necessary
Essential How often do you discuss prognosis with your patients with severe COPD?
Never
Rarely
Sometimes
Often
Always The questions that followed explored the factors influencing GPs' discussions of prognosis. These consisted of 19 statements grouped under seven themes: The role of the GP in discussing prognosis The patient's information needs The family's wishes Communication of the subject of prognosis The ability to predict a prognosis Time factors in discussing prognosis Consequences of a discussion of prognosis for the patient GPs were asked to rank how much they agreed with the statements from strongly disagree to strongly agree The full questionnaire will be made available on the Internet on the Family Practice website
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The questionnaire was developed following a review of the literature about the communication of death and dying, and from in-depth interviews with five GPs. The interviews explored the influences behind a GP's decision to discuss or not discuss prognosis. Seven distinct themes were identified from the interviews and became section headings for the questionnaire. Statements relating to each theme were devised with responses on a 5-point numerical scale from 1 (strongly disagree) to 5 (strongly agree). A total of 19 statements were grouped under the seven themes. (The questionnaire is available with the online version of the article at http://fampra.oupjournals.org.)
The questionnaire was piloted with six GPs, and amendments were made before the final version was mailed to all the GPs in Lambeth, Southwark and Lewisham. Non-responders received a reminder letter 2 weeks after the initial mailing, and a final reminder plus questionnaire were sent out 2 weeks after that.
Results were analysed using SPSS. Characteristics of respondents and non-respondents were compared using chi-square and t-tests. Responses of GPs who reported often or always discussing prognosis were compared with those of GPs who reported rarely or never discussing the subject using the Mann–Whitney U-test.
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Results |
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Questionnaires were returned by 214 out of 389 GPs (55% response). Respondents were more likely to be male, younger and from larger practices than non-respondents (Table 1
).
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One hundred and fifty-three (72.5%) of the 214 respondents reported that discussions of prognosis were often necessary or essential in the management of severe COPD. Eighty-seven (41%) reported often or always discussing prognosis, compared with 33 (15%) who reported rarely or never discussing the subject.
The factors influencing GPs' discussions of prognosis are shown in Table 2. Eighty-two per cent of the respondents agreed that GPs have an important role in discussions of prognosis. Half the GPs were undecided whether most patients wanted to know about their prognosis or not and nearly 40% found it hard to know which patients wanted to discuss the subject. Half the GPs agreed that some patients who would like to discuss their prognosis do not get the opportunity. One-third of GPs reported that they found it hard to start discussions of prognosis with severe COPD patients, and 30% left it for patients or their relatives to raise the subject.
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The majority of GPs found it difficult to predict prognosis for individual cases, and less than a third thought there was sufficient information in the GP records to be able to discuss prognosis with patients.
There were significant differences between the responses of GPs who reported that they often or always discussed prognosis and those of GPs who reported that they rarely or never discussed prognosis. Selected statements and the GP responses are shown in Table 3.
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Discussion |
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A majority of GPs in this study acknowledged the need to discuss prognosis in severe COPD, that they have an important role to play in discussions of prognosis and that patients value such discussions. In spite of these views, a minority of GPs report often or always discussing the subject, and nearly 50% admit that some patients who would like to discuss their prognosis do not get the opportunity. It appears that the palliative care approach of open communication, whilst seen to be relevant to severe COPD, is not applied routinely in managing this disease in primary care.
The design of the questionnaire involved in-depth GP interviews to make its content inclusive of a broad range of issues. The structured nature inevitably restricted GPs' responses. There may have been particular issues of importance to GPs which the questionnaire failed to capture. A qualitative approach involving open-ended interviews with GPs until saturation of data was reached would have been an alternative method for gathering a wider variety of views. A second limitation in the study lies in the response rate of 55%. Although this figure is similar to that observed in other questionnaire surveys of GPs,7 the differences in the characteristics of the respondents and non-respondents mean that the views of non-respondents cannot be predicted from the study's findings. The GPs' responses do, however, represent the views of 214 GP principals in Lambeth, Southwark and Lewisham, and are likely, therefore, to find considerable resonance throughout NHS general practice.
Prognosis in COPD, as in other life-threatening conditions, is a challenging area for doctors. Using prognostic indices derived from population studies to make predictions for individuals is difficult. The role of the forced expiratory volume in 1 second (FEV1) in COPD is a good example.8 The majority of GPs in this survey acknowledged such difficulty, but nevertheless appreciated the importance of discussing prognosis for those near the end of life. Although GPs may be unable to give patients with advanced COPD precise estimates of how long they will live, they can be guided by prognostic indices (such as age, FEV1, pO2) as to the severity of a patient's condition and their risk of dying. In discussing prognosis, ways of communicating this risk to patients who want to hear it need to be found. This, in turn, might allow patients to make informed choices about their future care and to prepare for dying. A doctor can use his or her judgement in timing a discussion and pitching it at an appropriate level. The inability to make precise predictions of prognosis should not preclude such a discussion.
This survey suggests that many GPs are uncertain about the information needs of patients with advanced COPD. Half the GPs were undecided as to whether most patients with severe COPD wanted to discuss their prognosis, and nearly 40% had difficulty identifying which patients wanted to discuss the subject. Uncertainty about the patient's agenda may inhibit GPs in their discussions of prognosis. Greater certainty may come from research interviews with patients with advanced COPD or their relatives (as proxies) to determine the patients' information needs.
Doctors have acknowledged difficulties in the communication of risk.9 These include the availability of up-to-date information about risk and the presentation of this information to the patient. GPs have also identified a need for specific training in this area. The results of our survey about prognosis support this view. With the facts available to them in primary care, some GPs felt ill-prepared to discuss prognosis. The majority of GPs found it difficult to predict prognosis for individuals, and only a minority thought there was sufficient information in the primary care notes to discuss the subject.
Conveying a prognosis requires sensitive communication at the patient's own pace. A lack of the necessary communication skills may, in part, explain why some GPs rarely discuss prognosis. A majority of the GPs who reported rarely or never discussing prognosis also reported finding it difficult to initiate a discussion with patients. With specific training in this area, GPs may feel better prepared. This has been beneficial to doctors in cancer care.10
By exploring GPs' views of discussions of prognosis, this survey has given us a greater understanding of their current practice. Its conclusions present the discipline of general practice with a new challenge. The majority of GPs recognize the relevance of the palliative care approach to severe COPD together with the important role they play in discussing prognosis. For such discussions to become standard practice in the primary care management of severe COPD, GPs need a greater knowledge of the wishes of patients for information and may themselves require additional training in communicating a prognosis. There are also implications from this survey for GP workload. GPs may have difficulty prioritizing the discussion of prognosis in a demanding work schedule which is increasingly driven by evidence-based medicine. Evidence about the role of discussions of prognosis in the latter stages of chronic illness such as COPD and the impact they might have on patients is lacking. GPs may therefore need to be convinced that time invested in the discussion of prognosis is time well spent. Discussions of prognosis may be deferred for other seemingly more important issues, such as the management of acute exacerbations. There is a need to investigate both the attitudes of patients with advanced COPD towards the discussion of prognosis, and also the effect of an intervention to include such a discussion on their care.
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Acknowledgments |
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This study was funded by the London Academic Training Scheme.
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References |
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1 Office for National Statistics. Mortality Statistics: Cause, England and Wales 1993 (revised) and 1994. Series DH2 no. 21. London: Government Statistical Service, 1994.
2 Connors AF Jr, Dawson NV, Thomas C et al. Outcomes following acute exacerbation of severe chronic obstructive lung disease. The SUPPORT investigators (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments). Am J Respir Crit Care Med 1996; 154: 959–967.[Abstract]
3 Addington-Hall JM. Reaching Out. Report of the joint NCHSPCS and Scottish partnership agency working party on palliative care for patients with non-malignant disease. London: National Council for Hospice and Specialist Palliative Care Services, 1997.
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Addington-Hall JM, McCarthy M. Dying from cancer: results of a national population-based investigation. Palliat Med 1995; 9: 295–305.
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The COPD Guidelines Group of the Standards of Care Committee of the BTS. BTS guidelines for the management of chronic obstructive pulmonary disease. Thorax 1997; 52 (Suppl 5): S1–28.
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Edwards A, Matthews E, Pill R, Bloor M. Communication about risk: diversity among primary care professionals. Fam Pract 1998; 15: 296–300.
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