End of life research in COPD What palliative care needs do COPD patients have as they approach the end of life? Patrick White1, Suzanne White1, John Moxham3, Polly Edmonds2, Marjolein Gysels2 and Cathy Shipman1,2 1Department of General Practice & Primary Care, 2Department of Palliative Care, Policy & Rehabilitation, 3The Department of Asthma, Allergy & Respiratory Science King’s College London School of Medicine Funded by Guy’s & St. Thomas’ Charity This topic may look highly specialised to you, and its broad relevance may not be immediately obvious. But there are two aspects to this paper which highlight its importance in primary care. Firstly COPD, chronic obstructive pulmonary disease, the modern term for chronic bronchitis and emphysema, is very common, affecting between 5 and 10% of the population, the single biggest cause of emergency admissions to hospital in London, and the cause of nearly as many deaths as lung cancer. Secondly, there is widespread interest in the potential palliative care needs of people with advanced COPD, and COPD is fast becoming the flag bearer of the movement to recognise the unmet palliative care needs of advanced non-malignant disease. In this paper our question: “Is hospital admission the only option?” is shorthand for the suspicion that, through hospital admission in acute exacerbations of COPD, patients are being deprived of a palliative care approach to their condition. End of life research in COPD

Advanced COPD – end of life policy–but what evidence ? Powerful drive for providing palliative care for patients with advanced COPD Repeated assertions that COPD patients with <1 yr prognosis can be identified Assumption that because patients die from chronic illness their deaths can be prepared End of life research in COPD

End of life research in COPD Key questions Where does the drive to provide palliative care for COPD come from? Can prognosis be defined in COPD? What are the palliative care needs of people with advanced COPD? End of life research in COPD

End of life research in COPD The burden of COPD 23500+ COPD deaths per year compared to 28,000 deaths caused by lung cancer in England and Wales Biggest cause of emergency admissions in UK Soon to become 4th cause of mortality worldwide End of life research in COPD

Why do we think people with COPD have palliative care needs? Heavy burden of symptoms Symptoms are more severe than lung cancer but services are limited with virtually no end of life care Gore et al Thorax 2000;55(12):1000-6. Edmonds et al 2001 Palliat Med 2001;15(4):287-95. Elkington, White, et al Palliat Med 2005;19 485-91 End of life research in COPD

We cannot make a prognosis in COPD with more accuracy than 2 years Mortality in severe COPD is between 36% and 50% at 2 years Connors et al. Am J Respir Crit Care Med 1996;154(4 Pt 1):959-67 Almagro et al. Chest 2002;121(5):1441-8 Predictors of mortality include Low BMI, Low FEV1, dyspnoea, low 6MWD, Fat free body mass, number of hospital admissions, maintenance oral steroids, quadriceps strength, congestive heart failure, low albumin, cor pulmonale, oxygen saturation End of life research in COPD

Do people with COPD have palliative care needs? Symptom control Information needs Preferred place of care In this paper we are reporting on……. End of life research in COPD

Prospective study of palliative care needs of advanced COPD White P, White S, Edmonds P, Moxham J, Gysels M, Shipman C. Funded by Guy’s and St Thomas Charity No prospective surveys of palliative care needs in COPD No reliable guidance for generalists or specialists on palliative care needs in COPD Our aim was to identify patients with palliative care needs and to define their needs End of life research in COPD

End of life research in COPD What we did Prospective community based survey Patients with severe COPD from GP registers Interview questionnaire Lung function, BMI, HADS, Respiratory specific quality of life, MRC dyspnoea scale, Pain questionnaire End of life research in COPD

End of life research in COPD Patients in the study 44 (80%) of 55 practices took part Data on 145 with advanced disease Mean age 72 years (46-93), Female 50% FEV1 <40% expected (Quanjer et al) 88% short of breath most days/everyday 45% housebound 75% had a carer (45% in the home) Respondents at least as severe as non-respondents End of life research in COPD

What were the priorities of these people with advanced COPD? Severe breathlessness 57% Breathlessness every day and one of {breathlessness unrelieved / breathlessness washing or dressing / breathlessness talking} MRC dyspnoea scale category 5 31% Too breathless to leave the house, or SOB when dressing or undressing Breathlessness the most important problem 92% End of life research in COPD

Did they have palliative care needs? End of life research in COPD

Do people with COPD have palliative care needs? Symptom control Information needs Preferred place of care (choice) In this paper we are reporting on……. End of life research in COPD

Did they have palliative care needs? Anxiety, depression, pain, insomnia, fatigue were distributed throughout the sample not just in the most severe Desire for information about the disease and its treatment were distributed throughout the sample Existential concerns were not expressed despite several opportunities presented to subjects End of life research in COPD

Acute severe exacerbations 103 reported acute severe exacerbations – 102 (70%) admitted to hospital 52(51%) within the last 12 months 38 (37%) had two or more in 2 years 89 (88%) had experienced the onset of the exacerbation at home End of life research in COPD

Acute severe exacerbations Did you want to go to hospital? Yes 59(58%) No 28(28%) Was hospital the right place to go? Yes 95(94%) No 1(1%) If very unwell again would you want to go back to hospital? Yes 86(85%) No 13(13%) End of life research in COPD

Views of hospital of those who did not want to go back Felt they had to go to hospital due to severity Hospital or die Hated the physical environment Hated the food Worry about exposure to germs (including MRSA) Felt they were equally effectively treated at home Loved the care End of life research in COPD

End of life research in COPD Patients’ views No difference between subjects who would go back to hospital (86) and those who would not (13) : in their experience of the disease the effectiveness of the treatment the outcome the expression of existential concerns their experience of the hospital environment End of life research in COPD

End of life research in COPD Conclusions Most of these patients with advanced COPD had been admitted with an exacerbation Most felt admission was the right action Most would want admission again if they became unwell to the same extent None expressed existential concerns relating to their stage in life despite severe breathlessness and impairment End of life research in COPD

End of life research in COPD Conclusions We were unable to identify patients with advanced COPD who reported that hospital admission would be the wrong response to an acute severe exacerbation The place of a palliative care approach in a primary care setting in response to an acute exacerbation of COPD in those with severe disease is likely to be limited to a few patients End of life research in COPD

How does the role of prognosis in COPD compare with that in cancer? Prognosis in cancer is based on longitudinal data Every guide to prognosis in COPD uses cross-sectional data at a single point in time People with cancer see significant changes in symptoms and disability over months People with COPD develop symptoms and disability over years Issues of choice about place and type of care in advanced COPD take place in a unique context End of life research in COPD

What evidence is there for a palliative care approach in COPD? Needs in advanced COPD are considerable and match those of people with cancer Patients with advanced COPD are likely to have arrived at that point gradually Prognosis in COPD is not accurate enough to be useful in the short term (<one year) There are no useful disease specific indicators which indicate COPD patients suitable for a palliative care register End of life research in COPD

End of life research in COPD What next? Assessment of unrelieved breathless due to COPD in primary care Prognosis in COPD using longitudinal data Develop a breathlessness service for people with advanced COPD Trial of the palliation of breathlessness in advanced COPD End of life research in COPD