End of Life Care in IJN Our journey. Dato Dr. David Chew Soon Ping Consultant Cardiologist National Heart Institute Malaysia

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1 End of Life Care in IJN Our journey Dato Dr. David Chew Soon Ping Consultant Cardiologist National Heart Institute Malaysia

2 End of Life Dying is final part of everyone journey in life Deaths used to occur in homes, surrounded by loved ones Because of illness at end of life, more patients are dying in hospitals and in ICU

3 Practice of Medicine First do no harm Cure sometimes, to relieve often, to comfort always IJN: Management of cardiovascular disease (medical/intervention/surgical)

4 Outcomes of Illness and Therapies Generally good outcomes Some patients have severe illnesses or co-morbidities and succumb Post cardiothoracic operative deaths Pediatric cardiology deaths Cardiology deaths

5 Cardiology Deaths AMI ACS HF valve HF IHD HF DCM Sepsis Misc NSTEMI Total = 781

6 Terminal Cardiac Illness Sudden or acute: sudden death, acute coronary syndrome and cardiogenic shock Gradual or chronic: slow deterioration of advanced or end stage heart failure, multi-organ failure

7 Place of Death 85% in Intensive Care/CCU 5% in HDU 10% in ward Often involves therapies like: inotropes, IABP, ventilation, dialysis, antibiotics, CPR

8 Acute illness 60 yr old man, DM, HPT Acute anterior MI, primary PCI to LAD, complicated by cardiogenic shock. IABP, ventilated. Inotropes. Acute renal failure dialysis Progressively hypotensive. Cardiac arrest. CPR. Expired after 4 days

9 End of Life The final phase of the patient s illness when death is imminent or nearly so From a few hours to several weeks Sometimes obvious but often uncertainties exist if the end is truly near, particularly acute illness

10 End of Life Care Often intensive & expensive care Bleak outcome Survivors often have limited extension of life which is of poor quality Are we doing too much? Do patients want it? Are we really carrying out the best care for patients?

11 End of Life Care Approach is often to continue with aggressive medical and supportive treatment, even though we see that response to therapy is unsatisfactory and patient is at end of life Often assume that all out care is what the patient and family wants Fear of censure if this is not done

12 Patient Perspective at End of Life Patients who are dying often spend their final days with a significant burden of pain and other symptoms Some receive care they would not have chosen to receive, and suffer a distressing and prolonged death

13 Patients in Critical Care Physician family discussions often focus on the patient s critical illness, treatments and prognosis When patients do not respond to therapies, then the family members are informed that patient is dangerously ill Seldom a discussion of what the patient would want in his care

14 No CPR Sometimes when we know that further efforts are futile, we discuss about Not attempting CPR in the event of cardiorespiratory arrest Seldom withdraw therapies that have been initiated and allow natural death

15 Chronic illness 77 year old man Heart failure EF 30% SSS on DDD PPM, paroxysmal AF Pulmonary fibrosis on home oxygen therapy Pneumonia and respiratory failure BiPAP, antibiotics Inotropes, Expired after 11 days

16 Advanced Heart Failure Advanced heart failure is a disease process that carries a high burden of symptoms, suffering, and death. Life expectancy < 1 year for most patients

17 Advanced Heart Failure 1. Moderate to severe symptoms of dyspnea and/or fatigue at rest or with minimal exertion (NYHA functional class III or IV) 2. Objective evidence of severe cardiac dysfunction demonstrated by at least 1 of the following: Left ventricular ejection fraction <30% Restrictive mitral inflow pattern by Doppler High left and/or right ventricular filling pressures Elevated B-type natriuretic peptide

18 Advanced Heart Failure - cont 3. Severe impairment of functional capacity i.e inability to exercise, 6-min walk distance <300m, or peak oxygen uptake <12 to 14 ml/kg/min 4. Episodes of fluid retention and/or reduced cardiac output 5. History of at least 1 hospitalization in the past 6 months 6. Characteristics should be present despite optimal medical therapy

19 Advanced HF Standard oral therapies no longer offer adequate symptom relief Advanced HF requires specialized interventions or a fundamental change in therapeutic approach

20 Quality of Life and Care in Heart Failure

21 Important Considerations for patients

22 Advanced Care planning Physicians should initiate and develop with the patient a comprehensive plan for end-of-life care Consistent with patient values, preferences, and goals Understand their illness and options Discussion with family members Identify a surrogate decision maker

23 Advance Care Planning in HF Discussions should be timely but preferably not during acute illness Proactive, anticipatory, iterative approach to patient s preferences Routinely and at milestones like ICD shocks, hospitalizations for HF

24 Problems with Advance Care planning Advance planning not acceptable because patients believed that negative outcomes can result from negative thoughts Physicians may also feel uncomfortable talking about death

25 Possible Benefits of advanced care planning Increased the likelihood that the patient s preferences would be known and followed (86% versus 30%, P<0.001) Decreased family members stress, anxiety, and depression

26 End of Life Care Patients should receive the intensity of care they would choose at the end of life To prolong life ( at all costs ) or not to prolong the dying process

27 End of Life Care Patients who are dying need to be treated with dignity, compassion and respect Commitment to high quality care and excellent services Individual care plan with appropriate and regular review

28 Aspects of End of Life Care Identification, assessment, and treatment of pain and other types of physical, psychological, emotional, and spiritual distress Control of symptoms and relief of discomfort Psychosocial and family support

29 Symptom relief Relief of symptoms of dyspnea and pain Oxygen relieves dyspnea in hypoxic patient Intermittent or continuous iv diuretics/inotropes Low-dose opiates

30 Communication Health care providers need to be compassionate and sensitive Good communication important between patients, families, and health care providers Regular updates to provide objective information, to share opinions, and to reach consensus on goals of care

31 Heart Failure and CPR Only about 5% of HF patients required resuscitation for an in-hospital cardiac arrest. However, when it did occur, the outcomes were very poor. Only 9% of the individuals who had a cardiac arrest and received CPR in hospital actually made a full neurologic recovery and were able to return home

32 Discontinuation of therapies Deactivation of ICD Withdrawal or withholding of mechanical ventilation in anticipation of death Discontinuation of mechanical circulatory support

33 Challenges Improving communication Shared decision making Healthcare personnel commitment to give quality care for the patient at end of life

34 Summary Assess patients to determine if they may be approaching end of life Communicate on treatment options, prognosis and patient wishes Advance care planning Curative/restorative care and palliative care

35 Patient & Family choice 63 yr old lady CABG 15 yrs ago, ischemic cardiomyopathy EF 15% DM, HPT, renal failure approaching endstage Monthly admissions for HF, more and more resistant to diuretics and inotropes Declined dialysis, palliative care toward the end

36 Quality of Care at End of Life Good care for the dying is as important as good care at any other time of life The secret of the care of the patient is caring for the patient