Transcript Living and Dying with Chronic Lung Disease

Dr Brian Bradley
December 7th 2011
Respiratory Service
 Clinics / Respiratory Nursing Team at home
 Dr Downes Palliative Care Clinic
 Chronic Disease Management Clinic – Clinical
Psychologist
 Pulmonary Rehabilitation
Examples - Joyce
 73 year Severe COPD and Bronchiectasis
2-3 admissions / year
Always asks “Why am I breathless”
 Clinic: “ How Long can this go on for ? “
 Follow up at home – Respiratory Nurse
 Eventually died at home
Example - Ronald 1
 54 year old fencer. Extrinsic Allergic Alveolitis
Progressive Fibrosis over 14 years
Respiratory Failure on LTOT
 IHD with MI and stent insertion
Severe Aortic Stenosis and re-stenosis
Gross Right Heart Failure
 Numerous Conversations – never took it on board –
died in Hospital
Example – Ronald 2
 79 year old + IPF which was stable for 5 years

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CABG and then lung function deteriorated over 6
months
Wife very anxious pushed him to do things
Would not contemplate opiates, had Oxygen – did not
use it
Had pulmonary Emboli
Palliative Care team / Respiratory – deterioration, not
for resuscitation
Died in Hospital
Living and Dying with Chronic Lung
Disease
 National Policy on End of Life Care
 Can we predict the end of life?
 What can we do for patients? (symptoms / support)
 How are these issues best discussed?
COPD Deaths
Increasing in
USA
Of the six
leading causes
Deaths
from:
of death
in the
United States,
Heart Disease
only
COPD has
Cancer
Stroke
been
increasing
Diabetes
Accidents
steadily
since
Decreasing
1970 or steady
Source: Jemal A. et al. JAMA 2005
Deaths from Respiratory Disease
Cause of Death : number of deaths in England, 2007/09
Cause of Death : proportion of deaths in England 07/09
Chronic lung diseases : number of deaths in England 07/09
Number of death by Region in England, 2007/9
G lobal Initiative for Chronic
O bstructive
L ung
D isease
Four Components of COPD
Management
1. Assess and monitor
disease
2. Reduce risk factors
3. Manage stable COPD

Education

Pharmacologic

Non-pharmacologic
4. Manage exacerbations
Living and Dying with Chronic Lung
Disease
 National Policy on End of Life Care
 Can we predict the end of life?
 What can we do for patients? (symptoms / support)
 How are these issues best discussed?
Illness Trajectories
Typical illness trajectories for people with progressive chronic illness. Adapted from Lynn and
Adamson, 2003.7 With permission from RAND Corporation, Santa Monica, California, USA.
Published in BMJ Murray, S. A et al. BMJ 2005;330:1007-1011
What is the prognosis?
Christakis, N.A and J.J. Escare (1996). “Survival of Medicare Patients after Enrolment in Hospice Programs.”
N Engl J Med 335(3): 172-178
COPD
Predicting Prognosis
Classification of COPD Severity -Spirometry
 Stage I: Mild


 Stage II: Moderate

FEV1/FVC < 0.70
FEV1 > 80% predicted
 Stage III: Severe

FEV1/FVC < 0.70
30% < FEV1 < 50% predicted
 Stage IV: Very Severe


FEV1/FVC < 0.70
FEV1 < 30% predicted or
FEV1 < 50% predicted plus
chronic respiratory failure
FEV1/FVC < 0.70
50% < FEV1 < 80% predicted
Indicative markers in COPD:
 Severe airflow obstruction (FEV1 <30% predicted)
 Respiratory failure
 Low BMI (less than 19)
 House bound (MRC dyspnoea score 5)
 History of two or more admissions for exacerbations
during the previous year
 Need for non-invasive ventilation for an acute
exacerbation
 Eligibility for long-term home oxygen therapy
Predicting prognosis – acute
exacerbation of COPD
Age >70
Hospital type/resources
FEV1 <30% predicted
SaO2 on admission
pH
7.26
PaO2/FiO2
PaCO2 >8 kPa
Diffusion capacity
PaO2 <7.3 kPa
Body mass index <18
No of admissions
Albumin
Other co-morbidity
Making a prognosis in
COPD
• Mortality after admission to hospital 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
Interstitial Lung
Disease
Idiopathic
Pulmonary
Fibrosis
ILD – Idiopathic Pulmonary Fibrosis
Prognosis and Survival
 Carbon monoxide transfers (TLCO) < 40%
 Fall in FVC of 10% over 6-12 months
> 15% in TLCO
 Desaturation during 6 minute walk at presentation
 A TLCO of <39% of predicted, combined with HRCT
scores, had an 80% sensitivity and specificity for death
within 2 years.(Mogulkoc et al)
 TLCO levels of <35% were associated with a mean
survival of 24 months (Latsi et al)
ILD / IPF - Treatment
 To date there is no therapy proven to improve survival
or otherwise significantly modify the clinical course of
IPF
 Disease Modifying Drugs – Steroids, Azathioprine, N
AcetylCysteine – very dissappointing
 Lung transplantation if appropriate.
ILD/IPF -Best supportive care
 Proactive approach to symptomatic treatment:
Oxygen therapy
Pulmonary rehabilitation
Opiates
Antireflux therapy
Stop steroids & other immunosuppressants
Smoking Cessation
 Early recognition of terminal decline and liaison with
palliative care specialists.
Living and Dying with Chronic Lung
Disease
 National Policy on End of Life Care
 Can we predict the end of life?
 What can we do for patients? (symptoms /
support)
 How are these issues best discussed?
Symptom prevalence in advanced COPD / ILD
 Breathlessness 60%–88%
 Fatigue 68%–80%
 Anxiety 51%–75%
 Pain 34%–77%
 Depression 37%–71%
 Insomnia 55%–65%
 Anorexia 35%–67%
 Constipation 27%–44%
Solano et al. 2006
Treatment & devices
Treating dyspnoea in COPD- bronchodilators
Bronchodilators for the relief of dyspnoea
Dullinger
Guyatt
Hansen
Shah
Pooled
-2
2agonist better
-1
0
1
2
Placebo better
Sestini P, et al . Short-acting beta2-agonists for stable chronic obstructive pulmonary disease.
Cochrane Database of Systematic Reviews 2002, Issue 3. Art. No.: CD001495
Treating dyspnoea - opiates
Opiates for the relief of dyspnoea
Side effects:
• constipation
• nausea
• drowsiness
but no increased hypoxia
Woodcock
Woodcock
Johnson
Eiser
Eiser
Brurera
Light
Chua
Poole
Pooled
Jennings A-L. Thorax 2002; 57: 939-944
-2
Opioids better
-1
0
1
2
Placebo better
Opiates & Benzodiazepines
 Morphine
 2nd or 3rd line
 Low dose
 Diazepam or Lorazepam
 Oral
 Consider side effects
 IV or SC Diamorphine in
extreme distress
 Used when no response
to other therapies
Treatment of breathlessness in advanced COPD
– non pharmacological
 Breathing training
 Walking aids
 Neuromuscular electrical stimulation
 Chest wall vibration
 Hand-held fan
 Anxiety management
 Physiotherapy
Booth S, Moosavi SH, et al. Nat Clin Pract Oncol 2008 5(2):90-100
Booth S, Farquhar M, et al. Palliat Support Care 2006;4(3):287-93
Positioning, remember to focus on breathing when it is helpful!!
Provision of Domicilary Oxygen
Aims of oxygen therapy
 To correct or prevent potentially harmful hypoxaemia
 To alleviate breathlessness (only if hypoxaemic)
Oxygen has no effect on breathlessness if the oxygen saturation is
normal
Types of Domicillary Oxygen
 Long Term Oxygen Therapy (LTOT)
 Ambulatory Oxygen
 Short Burst Oxygen
Why use LTOT?



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


Improved survival
Reduce secondary polycythemia
Improve Neuropsychological health
Prevention of progression of pulmonary hypertension
Improved sleep quality
Reduction in cardiac arrhythmias
Increased renal blood flow
Criteria for LTOT
 Severe COPD with PaO2 <7.3kPa
 paO2 < 8kPa with nocturnal hypoxemia and
peripheral oedema
 Provision of oxygen therapy for a minimum of
15hrs/24hrs administred at a flow rate sufficient to
raise the PaO2 to above 8kPa
Ambulatory oxygen
 Effective in increasing
exercise capacity
 Reduces breathlessness on
exertion
 For patients who de-
saturate by 4% to less than
90%
 Improves concordance
Short Burst Oxygen
 Intermittent use of oxygen for 10-20 minutes
 No evidence
 No formal assessment
COPD and Co-Morbidities
COPD has significant extrapulmonary
(systemic) effects including:
• Weight loss
• Nutritional abnormalities
• Skeletal muscle dysfunction
Living and Dying with Chronic Lung
disease
 How successful is our care now?
 Do patients want to know ?
 Who should do it and when ?
 How !!
End of life care - to live “as well as possible” until they die
 Enables the supportive and palliative care needs of
both patient and family to be identified and met
throughout the last phase of life and into bereavement
 It includes the management of pain, breathlessness
and other symptoms and provision of psychological,
social, spiritual and practical support.
Appropriate care near the end of life.
Murray S A et al. BMJ 2005;330:1007-1011
©2005 by British Medical Journal Publishing Group
Current Service Provision
 One third of patients lacked regular follow up
in hospital or in the community
 One third of patients saw their GP less than 3
monthly or never
 Lack of home-based services although many
patients were housebound
Elkington, White, et al Pall Med 2005 19:485-491
How are people who die
from COPD affected?
In the last year of life
40% had breathlessness unrelieved
68% had low mood unrelieved
51% had pain unrelieved
20% did not know they might die
70% died in hospital (for 25% of whom it was not the best
place to die)
Elkington, White, et al Pall Med 2005 19:485-491
How are people who die
from COPD affected?
 82% housebound
“I’m that short of breath,
I get breathless even
 36% chair bound
going to the toilet”
Skilbeck. Palliative Care 1998; 12: 245-54
Gore, J. M., C. J. Brophy, et al. (2000). "How well do we care for patients with end stage chronic
obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD
and lung cancer." Thorax 55(12): 1000-1006.
COPD compare with lung cancer?
Worse quality of life
Gore. Thorax 2000; 55: 1000-6
COPD compare with lung cancer?
 No differences in the total number of symptoms in final
year / week of life but COPD patients have these for longer
Moderate – severe
breathlessness
Pain
Depression
Lung
Cancer
COPD
78%
94%
25%
25%
63%
55%
Provision of care –
not just medication!
Gore. Thorax 2000; 55: 1000-6
Living and Dying with Chronic Lung
disease
 How successful is our care now?
 Do patients want to know ?
 Who should do it and when ?
 How !!
COPD Patient’s perspectives on Physician skill in End of
Life Care
 More education about their lung disease and short and long term
prognosis
 Strategies for dealing with the present, and personal goals
 Maintenance of hope
 Patients expect physicians to raise these topics
 Continued emphasis on symptom control
(Randall Curtis et al Chest 2002;122:356-62)
COPD Patients and Relatives
 Unaware that COPD is life threatening (Spathis & Booth 2008)
 More want to discuss prognosis and end of life care than
currently do (Dean 2007)
 Fear of uncontrolled symptoms contribute to high number
of hospital deaths
 30% Lung Cancer and only 8% of COPD patients were told
they could die from the disease –
Physicial and psychosocial needs are at least as intensive as
for Lung Cancer – but not as holistic (Edmonds 2001)
 Evidence suggests that patients (and carers) require “early
phased support” and ongoing assessment of need
throughout the “lifetime journey with COPD”. (Pinnock et al
2011)
Do patients want to know?
 73% of patients would like to discuss prognosis 1
 64% of clinicians felt it was difficult to start a
discussion 2
 In severe COPD, when offered an appointment
with a palliative care specialist to discuss prognosis
/ end of life care issues (on top of usual care) 29%
took up the offer 3
1 – Elkington et al, 2001 2 - Elkington et al, 2001 3 – Matthews et al, 2007
Provides an opportunity to discuss
 The future
 When ?
 The patient’s
 Stable
understanding of prognosis
 Resuscitation status
 ICU admission
 Advance care plans
 During Outpatient’s Visit
 During Pulmonary
Rehabilitation
Some prompts
 “You’ve been quite poorly recently – what are your
thoughts about all of this?”
 “This is the third time you’ve been in hospital this
year, it seems to be getting more frequent – what
are your thoughts (feelings) about this?”
 ‘Would you find it helpful to talk about the future
and how you would want to be cared for?”
Potential outcomes from
ACP discussions
 Documentation of patients wishes
 Patient and/or family has better understanding of illness




and treatment options of issues like DNAR and
ventilation including non-invasive ventilation
Opportunity for patient to improve communication with
family
Patient may appoint an Lasting Power of Attorney
Patient may make an Advance Directive
Professional has better understanding of the patients
fears, beliefs and wishes
Barriers to communication about end of life issues in
COPD / ILD
Healthcare Professional
 Difficulty in timing
discussions because of
uncertain prognosis
 Lack of time during
consultations
 Concern about taking away
patients’ hope
 Belief that patients are not
ready to discuss end of life
issues
Patient Barriers
 Expectation that healthcare
professionals will initiate
discussions
 Societal taboos with regard to
discussing death
 Uncertainty about which
professionals will be involved
during end of life phase
 Lack of certainty about the
type of care that would be
wanted when less well
What is Advanced Care Planning?
“Advanced care planning is a voluntary process of
discussion between an individual and their care
providers irrespective of discipline.
If the individual wishes, their family and friends may
be included in the discussions.
With the individual's agreement, this discussion
should be recorded, regularly reviewed and
communicated to key persons involved in their
care.”
DH, 2008
Advanced care planning
should address
 the individual's concerns
 their important values or personal goals for care
 their understanding about their illness and
prognosis
 preferences for types of care or treatment that may
be beneficial in the future and the availability of
these
Advanced Care Planning
 Unpredictable timing of should not lead to
communication paralysis.
 Healthcare professionals should initiate discussions
about end of life care as early as possible in the disease
trajectory.
 Honest & compassionate ACP involves a dual approach
of optimism and realism, “hoping for the best and
preparing for the worst.”
 Make clear to patients that limiting life sustaining
treatment does not equate to limiting care.
Remember
 Need to be realistic – but give hope
 Be collaborative – give patient dignity and control
of their life
Respiratory Service
 Collaborative work – works well for patient
Can provide best care
Respecting patients choice
 Need to focus more on the relevant groups in Primary and
secondary care
Take the opportunities to address the issues
Incorporate it more into standard
 Use the services that are available more:
Palliative Care Team
Clinical Psychology/Chronic Disease
Management
Pulmonary Rehabilitation
GPWSI