Transcript Case Which patients would benefit from palliative care?

Palliative care and non-oncological
diseases
Heart failure
Christine Waerenburgh, RN
MBE Noord-West-Vlaanderen
Bart Van den Eynden, MD PhD
Medical Director Centre for Palliative Care Sint-Camillus
Chair of Palliative Medecine
University of Antwerp
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
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Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Case Joannes
 Environment (2006)
– man, age of 70
– lives with his son and his daughter of 12
– regularly visited by
– his neighbour
– some friends
– he likes travelling: last journey september 2003
– But during this last year:
– able only to do minimal movements in his living room
– physical activity: nihil
Case Joannes (2)
 Medical history
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Myocard infarct: 1984
Depression: 1986
Acute inferior infarct with cardiac arrest: 1991
Hepatitis - icterus: 1991
Cholecystitis and cholangitis: 1991
Bypass surgery: 1994
Acute abdomen → appendectomie: 2003
Case Joannes (3)
 Problems December 2005
 Breathing difficulties
 Chronic renal insufficiency
 Abnormal liver enzymes
 Hospitalization March 2006
 Severe dyspnea
 Swelled abdomen
 Feeling miserable
 Not able to do anything
Case Joannes (4)
 Diagnosis
 severe ischemic cardiomyopathy due to global heart
failure
 ascites
 chronic renal insufficiency
Case Joannes (5)
 Joannes left the hospital for his home (…for
the last time…)
 He feels more comfortable but not optimal
 He wants to go home to sort out his affairs
 Professional and informal care are provided
 Once again his medication has been adapted
CaseJoannes (6)
– Medication
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Dispril 75 mg – 1 comp
Flixotide Rotadisk 250µgr/dos – 2 x dg
Lanoxin 0,250mg – 5 x/week
Burinex Leo 5 mg – ½
Lorametazepam 2mg (on request)
Cedocard sublinguaal ( on request)
Spironolactone 100mg ¼ comp
Emconcor
– Till that day……..
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Palliative care for cardiac patients?
 Heart failure
– Syndrome with symptoms, signs and objective evidence
of left heart dysfunction
– Caused by hypertension, coronary diseases, heart valve
stenosis or –insufficiency, primary cardiac diseases
 Pulmonary hypertension
 Angina pectoris resistant to further therapy
 Congenital heart diseases
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
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Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Epidemiology
 Mainly elderly (but can start sometimes at young age)
 Prevalence UK (Cowie et al, 1997):
– Between 3.8 en 29.4/1000
– >65 : 80.5/1000
– >80 : 190/1000
 Prevalence USA:
– Age 40-59j: 2%
– >70j: 10%
 Incidence: 2.3 – 3.3 (>75j: 43.5)/1000/year
 Number of patients:
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USA: nu 4.79 million pts → 2037: 10 million pts
UK: 60000 deceases a year
Europe: nu: 10 million pt - increase parallel with ageing of the population
All over the world: 2030 →30 million pt
 Prevalence, incidence and mortality increase
 Heart failure will be an important, increasing problem and a hug
challenge in/for the future
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Symptomatology
 2 mechanismes:
– Decrease of the heart beat volume
– Fluid retention
 3 Phases:
– Acute phase: needs most of the time an urgent
hospitalisation
– Chronic phase: often progressive, with
symptoms more and more noticeable and
visible
– Terminal phase: when dying becomes
imminently (offering specific problems)
3 possible disease trajects
Function
High
Function
High
Death
Low
GP has 20
deaths per
year
6
2
Other
Low
Time
Organ failure
Death
5
7
Time
Function
High
Death
Low
Time
“Cancer” Trajectory, Diagnosis to Death
Cancer
Specialist palliative care
available
Function
High
Low
Onset of incurable cancer
Death
Time
-- Often a few years, but
decline usually < 2 months
Need: Excellent medical care meshed with supportive hospice care
Organ System Failure Trajectory
(mostly heart and lung failure)
Function
High
Low
Begin to use hospital often,
self-care becomes difficult
Death
Time
~ 2-5 years, but
death usually
seems “sudden”
Need: Disease management, advance care planning, rapid intervention
Need to avoid: prognostic paralysis
Dementia/Frailty Trajectory
High
Function
Low
Onset could be deficits in
ADL, speech, ambulation
Death
Time
Quite variable up to 6-8 years
Needs: Supportive care over many years, carer support
Frequency of symptoms of patients with heart failure
in NYHAIII en IV (Norgren en Sörensen, 2003)
Symptomatology
 Typical symptoms are:
– Dyspnoe, breathlessness
– Unpleasant feeling of asthenia and tiredness
– Associated with: limitation of physical activity and
mobility, loss of quality of life, anguish and depressive
mood
 Dyspnoe and tiredness not directly caused by the
decrease of heart function (probably peripheral
mechanisms are playing an important etiological
role)
Symptomatology
 Quality of Life (QoL) mostly bad (even more
bad than in the case of other chronic
diseases)
– Psychological factors are playing a much more
important role than the physical handicap
– Major depression (DSM-IV): 36.5% ( only 17%
in the case of heart diseases without heart
failure) – often not treated, not even a
psychiatric consult
Symptomatology
 Very sensible for episodes of acute decompensation of
heart failure with exacerbation of dyspnea, fluid retention
and symptomatic deterioration
– Most of the time unexspected
– In-hospital mortality of 8%
– Re-hospitalisation: 29-47% within 3 months, 36-44% within 6 mm =
the highest figure of re-hospitalisation of all hospitalized groups of
patients
– Causes of these frequent deterioration:
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Deficient compliance (medication)
Faults and deficiency concerning diet (salt)
Failure of the social support
Infections, myocardial ischemia, pulmonary embolism
Frequent co-morbidity (using medication like corticosteroids,
increasing the fluid retention)
Symptomatology
 Further progressive deterioration
– leads to fluid retention:
 with peripheral oedema
 with pleural effusions
 with ascites
– Worsening of the symptoms: breathlessness in rest, only easy
breathing when sitting upright, sleeping disturbances, anorexia,
cachexia, muscle weakness, sexual dysfunction, nausea and
vomiting
– Pain:
 Important symptom in the case of terminal heart failure
 Characteristics, pathophysiology and cause not totally understood
 SUPPORT-study (Lynn, 1997; USA): insufficient pain control in 9% of
patients with heart failure (Desbiens, 1997)
Dying by heart failure
 Bad prognosis: in the case of a worsening
left ventricle function continually more
serious symptoms and metabolic markers
 Simplest approach: New York Heart
Association Classification of Heart Failure
 No marker available to predict sudden death
Symptomatology
 New York Heart Association Classification of Heart
Failure
– NYHA class 1: No limitations – normal physical activity
→ no excessive tiredness, dyspnoe, palpitations
– NYHA class 2: Minor limitations of physical activities –
comfortable when in rest – normal physical activity leads
to tiredness, dyspnoe, palpitations, angor
– NYHA class 3: Clear limitations of physical activity –
comfortable in rest – less than normal physical activity
leads to tiredness, dyspnoe, angor
– NYHA class 4: No physical activity without discomfort –
patient experiences symptoms while resting
Dying caused by heart failure
 Dying of heart failure often more worse concerning
symptoms and distress than dying of cancer
 Mortality: 31-48% after 1year – 76% after 3years
 Most important difference with cancer: much more
uncertainty while approaching death
– mainly because of sudden death of otherwise stable
patients
– NYHA II: mild symptoms – yearly mortality: 5-15% sudden death: 50-80 %
– NYHA IV: very severe symptoms – yearly mortality: 3070% - sudden death: 5-30%
Dying because of heart failure
 Most important cause of sudden death =
arrythmias
 What about reanimation in the case of such
patients?
– SUPPORT: doctors often didn’t knew the
wishes of their patient and projected their own
preferences on these patients
– 69% preferred reanimation but was not enough
informed about their (real) quality of life after
reanimation (in that situation they would not
have preferred reanimation)
Dying caused by heart failure
 Sudden death makes the classification of
‘ terminal heart failure’ very uncertain and
‘mysterious’ while ‘terminal’ refers to a
clinical situation with criteria analogous to
the one of cancer
 Doctors are very bad in accurately
recognizing the approaching death and
hesitate to define and label heart failure
patient as terminal
Organ System Failure Trajectory
(mostly heart and lung failure)
Function
High
Low
Begin to use hospital often,
self-care becomes difficult
Death
Time
~ 2-5 years, but
death usually
seems “sudden”
Need: Disease management, advance care planning, rapid intervention
Need to avoid: prognostic paralysis
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Living with heart failure =
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Starting each day quietly…
Taking a rest when the body is asking for it…
Even better caring for a healthy lifestyle…
Moderating the use of salt (sodium)
Limiting fluid intake to a maximum of 2 litres a day
Loosing weight when obese…
Being temperate with alcohol…
No smoking…
Living with heart failure means
 A radical event
 A adaptation process
 Patient
– Changing reality
– Persistent consequences
– Changes in :
 Personal reference framework;
– selfimage, faith and conviction, meaning
 The own behaviour
– weight control, diet, medication, life style,
–  raising of negative feelings: fear, loneliness
 Patient and beloved one(s):
– Confrontation with
 Physical and limitation(s)
 Cognitive limitation(s)
– Changes in daily functioning
– Disappearing the self-evidence, self-trust
– Consequences at
 a social level
 a society level
– Role patterns within the relation
– Changes in sexual functioning and relationship
 A duty for engaged professionals:
– Help and support in order to well complete the
adaptation process
 patient
 partner
How does a patient with heart failure
think about dying?
 Preparation to dying: yes/no
– They think rarely on death
– They don’t believe their death will be caused by their
disease
– Fear for death is mostly absent
– Once they have been near to death, patients are more
likely to think on it
– Thinking on the death implies
 Diminished quality of life
 Feeling of uselessness
How does a patient with heart failure
think about dying? (2)
 Decisions concerning end of life
– Poor worry about end of life
– Dimension of time plays an important role
– Avoiding to prolong the dying process
– No perspective of amelioration
– Patients desiring a quick death are concerned
about those left behind
– Feeling useful and helpful = not being a burden
for the other
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
To go about in truth
« In waarheid omgaan… »
 patient
 the caregiver
In waarheid omgaan (2)
 to associate with confrontation
– ‘I have a disease’
– ‘I am ill’
In waarheid omgaan (3)
 ‘I have a disease’
– Heart failure can never be totally repaired
 periods of stability
 periods that heart failure increases
– Comfort by means of
 medication
 diet
 rest and peace…
In waarheid omgaan (4)
 ‘I am ill’
– Patient know that his/her comfort increases by
means of….
– Adaptation to the new situation
 Experience of time
 Activities
 Relationship
In waarheid omgaan (5)
 To go about with confession
– ‘ to confess is difficult
 To confess that you are ill
 Can create anxiety and anguish
– Feeling of guilt about the past
– Fear for the coming future
 To be able to go about with therapy
 To give and to admit confidence and faith
In waarheid omgaan (6)
 ‘what means to go about in truth for me?’
– The relation with the patient
 Does de patient live in truth with his heart failure?
 Am I able to go about in truth with the patient?
In waarheid omgaan (7)
 How can I discover that the patient goes
about in truth?
 How can I help the patient with his
adaptation process?
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Care for patients with heart failure
 General:
– To continue the existing therapies?
– Care in order to offer comfort and to relieve
discomfort
 Drug options
 No-medication possibilities
Care for patients with heart failure
 General:
– To continue the actual treatments?
 What does the patient like? What are his or her preferences?
This means communication, discussion and consultation
 ACE-inhibitors, diuretics, beta-blocking agents….
 To continue or to stop?
 Co-morbidities like diabetes, COLD e.a. are in most of the
cases not treated anymore in the palliative phase
– Care for comfort
 Patient-centred care
 Quality of life and the relief of symptoms are the priority!!!
Care for patient with terminale heart
failure
 Medication
– Oxygen
– Pain treatment
– Morphine: dyspnea (+ anxiety and agitation)
– Anti-depressive medication (and psychological
support)
Care for patients with (terminal)
heart failure
 Possibilities other than medication
– Communication, (active) listening
– Interventions to
 Diminish anxiety
 In case of agitation
 In case of dyspnea
 In case of oedema of the legs
 ……
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
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–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Advance Care Directives
(Advance Care Planning)
 Tools allowing to develop a conversation
and decision making about end of life on a
structured way
 All aspects should get a chance as much as
possible
 Everything carefully written down
 Engagement of the caregivers to deliver to
the heart failure patient the optimal care,
choosen and permitted by the patient
him/herself
Advance care directives
ACP
 Aim
– To increase the possibilities to discuss the nearing end
of life
– The patient is allowed to formulate his wishes and
preferences and to negotiate about concrete care
initiatives with the caregivers
– ACP meets the duty to inform the patient about his right
to and the possibilities of palliative care
– Caregivers are learning (to explore) the wishes and
exspectations of the patient; they can anticipate on
these, while finally increasing the quality of the delivered
care
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Implanted Cardioverter Defibrillator(ICD)
en Pacemaker: Quid?
 ICD in the case of chronic heart failure
– Life-saving tool for many heart failure patients
– Protects against sudden death by ventricular fibrillation
and tachycardia
– But:
 Firing off the electrical impulses in the terminal phase is often
experienced as very disturbing
 Does a ICD drag out the life of a heart failure patient needless?
 Ethical considerations
 Positioning and strategy within a palliative care
program/pathway
Table of contents
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Case
Which patients would benefit from palliative care?
Epidemiology
Symptoms
– Dying from heart failure
 How do patient and family experience heart failure and
how do patients with advanced heart failure consider
dying?
 Care plan
–
–
–
–
–
Breaking the bad news
Care in the case of a patient with heart failure
ACP
What in the case of a pacemaker - defibrillator
Different palliative care settings
 Conclusion
Palliative care settings
 Palliative homecare
– Palliative daycentre
– Palliative care consultation
 Hospital-based palliative support team
(PST)
 (Specialised) residential palliative care unit
(PCU)
Conclusion(1)
 Patients with terminal heart failure have often bad
symptom control and a lot of unmet needs.
 An uncertain prognosis means that even during the
treatment of heart failure with the intention to ameliorate
symptoms and prognosis, always the possibility of
(sudden) dying should be considered. Patient and family
should also be informed and supported about that
eventuality.
 For the majority of patients with heart failure a clearly
outlined terminal phase does not exist.
 Advance care planning implicate anticipating on and
reducing of a futile treatment
Conclusion(2)
 Differences between the natural disease
course of heart failure and cancer implicates
that palliative care for heart failure patients
necessarily will differ from the actually well
structured palliative care for cancer!
Conclusion(3)
 Therefore: need for research towards
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What are the needs, QoL, effectivity of symptom control…?
Which interventions and programmes heart failure patients need?
What are the models for ambulantory care of heart failure patient?
Where do heart failure patients get the best treatment, depending
the phase of there disease (at home, hospital, palliative care unit)?
– How do the different care models and settings influence the
outcome?
 Only at the moment we will have the answers at these
questions a well outlined and supported treatment and care
for the heart failure patient will be possible; this will also
have important implications for the organisation and the
available means for health care facilities.