End of life care for people with heart failure: Where are we now?

Transcription

1 End of life care for people with heart failure: Where are we now? Dr James Beattie Consultant Cardiologist, Heart of England NHS Foundation Trust, Birmingham Trustee & Chair, Heart Failure Group, National Council for Palliative Care The Heart of the Matter 30 th Apr 2014

2 CVD mortality market share Cardiovascular disease - leading cause of death in England, resulting in deaths - 34% of all deaths 34% 23% Cancer responsible for 23% of all deaths Atlas of Risk (NHS 2009) 2007

3 Evolving demography From pyramid to coffin By 2030 the prevalence of HF is likely to increase by 46% compared to Circulation 2013, 129:

4 Deaths from cardiovascular diseases in England - implications for end of life care Annual number of cardiovascular disease deaths by disease category in England, February 2013

5 Spectra of decline Trajectories of disability in the last year of life Gill TM. NEJM 2010;362:

6 The heart failure disease trajectory Phase 1 initial symptoms Phase 2 plateau after diagnosis / early management Phase 3 declining functional status, exacerbations respond to rescue Phase 4 stage D HF Phase 5 end of life Modified from Goodlin SJ JACC, 2009, 54:386-96

7 Every HF patient s trajectory is unique Trajectories of physical decline (KCCQ) in heart failure patients over 24 months prior to death (n = 27) Gott M et al. Palliat Med, 2007, 21: 95-9

8 For those 75 years 50% mortality risk 12 months post HF admission In addition to the in-patient mortality: 5% for those <75 years 17% for those >75 years Cleland JGF et al, Heart 2011, 97:

9 Reality of dying from CVD in the elderly Heavy burden of symptoms: multifactorial Multiple chronic medical conditions Progressive losses: independence, autonomy Substantial care needs: often overwhelming for family caregivers Lengthy period of decline: uneven course Difficulty with prognostication Poor care coordination

10 HF care a protocol driven paradigm Challenges to initiating end of life care The culture of HF care favours a medical model and is treatment focussed. Evidence based intervention is often the default position. Patients preferences may be unexplored, they may be disempowered by technicalities or lack capacity. There is a reluctance to discuss prognosis in the face of uncertainty. Difficulty in recognising when established therapies are futile or burdensome.

11 Trade off: Survivorship and fragility Ironic technology I have an ICD and a pacemaker. It s prolonged my life a little bit. But the longer it prolongs my life, the more things happen to me that it can t correct. So the question is, do you want to have those effects, or do you want to end it all? 86 year old man. Kaufman SR. Soc Sci Med (2011); 72:6-14.

12 European ICD implant rates Per million population Germany Ireland Italy Norway United Kingdom Euro average (without UK) Data from industry / EHRA White Book, courtesy of David Cunningham

13 Informed consent and the concept of nudge When does libertarian paternalism become undue influence? ICD recipient perspectives governed by information exchange at implantation? Choice architecture Framing discussion Information bias Risks / benefits Later implications Yale University Press, 2008

14 Examples of professionals statements The ICD will prolong your life; without it, there is a very high chance of sudden death. The ICD is a lifesaver. This will decrease your risk of dying suddenly by greater than 50%. The ICD will improve your long-term survival. The main benefit is prevention of lethal arrhythmia. The ICD is a safety mechanism for preventing you from being taken away. Hauptman PJ et al, JAMA Intern Med. 2013; 173:571-7.

15 Device anthropomorphism ICD patients positive analogies Security...like an insurance policy. Watcher..standing in the background....watching over you. Guardian angel. Seat belt. Safety net. It s like having a cardiologist in me. Hauptman PJ et al, JAMA Intern Med. 2013; 173:571-7.

16 HF patients personalities affect perspectives on device therapy Active decision makers (55%) Passive decision makers (45%) Required time to deliberate Concern for quality of life Concern for side effects Preferred second opinion Considered family n=22 Trust in their physician Trust in God Physician has power Disengaged from medical care Assume all therapies help Matlock DD et al, J Cardiac Fail 2010; 16:823-6 He [cardiologist] suggested it s better I do it [have an ICD implanted], so my wife said fine. Peter, 68, accepted ICD Carroll SL et al. Health Expect. 2013; 16:

17 Difficult conversations in heart failure: The Goldilocks principle Understanding of heart failure - Patients understanding of condition is limited (3) - Unrealistic hope (2) Uncertainty in heart failure - Prognostication difficult (7) - Risk of sudden death (2) - Comorbidities (1) Anxiety-provoking discussions - Patients (5) and clinicians (2) fear generating anxiety - Loss of hope (5) Communication - Good relationships, continuity of care (4) - Good communication skills important for professionals (2) - Difficult to diagnose (1) and explain (2) - Focus on current medical aspects (2) Disempowered patients - Clinicians unapproachable/reluctant to discuss (3) - Unsure what questions to ask (2) - Fear being seen as difficult / demanding (2) - Many professionals felt they lacked the skills needed (2) - Time pressures (5) Barclay S. et al. Br J Gen Pract 2011, 61(582):e49-62.

18 What happens in Stage D? HF says VAD or transplant A B C D Refractory End-Stage HF Marked symptoms at rest despite maximal medical therapy Symptomatic HF Known structural heart disease Shortness of breath and fatigue Reduced exercise tolerance Asymptomatic HF Previous MI LV systolic dysfunction Asymptomatic valvular disease High Risk for Developing HF Hypertension CAD Diabetes mellitus Family history of cardiomyopathy PC says End of life care planning Hunt SA et al. JACC 2001;38:

19 Ventricular assist devices Circ Heart Fail. 2011;4: Life-sustaining medical devices at the end of life. McKenna M et al, BMJ Support Palliat Care 2013; 3(1): 5-7.

20 Integrating palliative care in a transcatheter heart valve (TAVI) program Geriatric Medicine TAVI Nurse and Clinic CNS Palliative Care Interventional Cardiology Imaging Echocardiology CT Radiology Cardiac Surgery Lauck S et al. Eur J Cardiovasc Nurs 2014; 13:

21 Advance directives in community patients with heart failure Olmsted County, MN n = 608, NYHA 3 /4 27% mortality at 1.8 y Advance directive 41% Proxy 90% CPR 41% Mech ventilation 39% Haemodialysis 10% Dunlay SM et al, Circ Cardiovasc Qual Outcomes 2012, 5:283-9

22 Amber Care Bundle Gap between health and dying with uncertain outcome May recover or deteriorate Communication issues DNACPR Ceiling of Care Communication Situation Plan Choices PPC / PPD Advance Decisions

23 Maintaining cohesive end of life care for HF Domain 2 (long term conditions): Continue to embed end of life care within a patient-centred whole pathway approach to long term CVD management Claire Henry House of Care March 2013

24 Complexity of required care and support contributes to the heart failure disease burden Browne S, et al. (2014). PLoS ONE 9(3): e doi: /journal.pone

25 Direction of travel of palliative care for heart failure? Developing better approaches to prognostication Improving symptom management beyond pain and dyspnoea Evolving better models of collaborative practice Building on the growing evidence base Education around communication Gadoud A et al. Palliat Med 2013; 27:

26 It is mostly about communication...