Palliative care and non- oncological diseases Heart failure

Palliative care and non-oncological diseasesHeart failure Christine Waerenburgh, RN MBE Noord-West-Vlaanderen Bart Van den Eynden, MD PhD Medical Director Centre forPalliative Care Sint-Camillus Chair of PalliativeMedecine University of Antwerp

Table of contents • 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 • 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 • Dispril 75 mg – 1 comp • FlixotideRotadisk 250µgr/dos – 2 x dg • Lanoxin 0,250mg – 5 x/week • Burinex Leo 5 mg – ½ • Lorametazepam 2mg (on request) • Cedocardsublinguaal ( on request) • Spironolactone 100mg ¼ comp • Emconcor • Till that day……..

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

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: • 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

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)

Function Function High High Death Death Low Low Time Time Organ failure Cancer Function 5 High 6 7 2 Death Low Other Time Dementia, frailty and decline 3 possible disease trajects GP has 20 deaths per year

Cancer High Specialist palliative care available “Cancer” Trajectory, Diagnosis to Death Function Low Death -- Often a few years, but decline usually < 2 months Time Onset of incurable cancer Need: Excellent medical care meshed with supportive hospice care

High (mostly heart and lung failure) Organ System Failure Trajectory Function Low Death ~2-5 years, but death usually seems “sudden” Begin to use hospital often, self-care becomes difficult Time Need: Disease management, advance care planning, rapid intervention Need to avoid: prognostic paralysis

High Dementia/Frailty Trajectory Function Low Death Time Quite variable - up to 6-8 years Onset could be deficits in ADL, speech, ambulation 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: • 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)

Dyingbyheartfailure • 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

Dyingcausedbyheartfailure • 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: 30-70% - 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

High (mostly heart and lung failure) Organ System Failure Trajectory Function Low Death ~2-5 years, but death usually seems “sudden” Begin to use hospital often, self-care becomes difficult Time Need: Disease management, advance care planning, rapid intervention Need to avoid: prognostic paralysis

Living with heart failure = • 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 withheartfailuremeans • 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

To go about in truth« In waarheidomgaan… » • patient • the caregiver

In waarheidomgaan (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?

Palliative care and non- oncological diseases Heart failure