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 ScienceKing’s College London School of Medicine

Funded by Guy’s & St. Thomas’ Charity

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

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

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 yearsConnors 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

End of life research in COPD

Prospective study of palliativecare needs of advanced COPDWhite 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

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

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 531%

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)

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

[N = 13]

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

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

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

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