1. 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

2. 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

3. 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

4. End of life research in COPD
The burden of COPD
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

5. 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):
Edmonds et al 2001 Palliat Med 2001;15(4):
Elkington, White, et al Palliat Med 2005;
End of life research in COPD

6. 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

7. 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

8. 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

9. 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

10. 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

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

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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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