Unmet palliative care needs in heart failure heart failure. Dr Claire Hookey

Transcription

1 Unmet palliative care needs in heart failure heart failure Dr Claire Hookey

2 Discomfort was not necessarily greatest in those dying from cancer; patients dying of heart failure, or renal failure, or both, had most physical distress Hinton JM The physical and mental distress of the dying. QJM 1963;32: 1-21

3 Prospective qualitative interview study of patients and carers in the community BMJ 2002; 325: DYING OF LUNG CANCER OR CARDIAC FAILURE

4 Information about illness and prognosis Lung cancer access to good quality written information most understood illness and its causes many appreciated honesty Cardiac failure rarely recalled being given written information poor understanding of their condition Professionals wanted patients to understand illness but also protect them from potential seriousness Prognosis rarely discussed I know I won't get better, but I hope it won't get any worse (patient 2).

5 Living with illness Loss of autonomy and self esteem You can't do what you did before, things you took for granted are now an impossible dream, I feel useless (patient 9). Social isolation, comorbidity, and increasing disability. I feel like I am in prison in here with him and each day is just like the last (carer patient 11). And as I say, the heart problem, didn't equate with us because I've got so much else wrong, because the main feature is the arthritis and not being able to move about and being immobile (patient 12).

6 Care provision Poorly coordinated hospital care, lack of continuity, failure to recognise involvement and expertise of carers. Primary care contacts mainly with GP, little planned community support A few had a long term relationship with a key professional: consultant, GP, cardiac nurse. Taking an interest, caring about the person, and good communication skills were valued. Specialist palliative care services not involved. Lack of Social services, financial benefits advice, carer support, and respite Care based on medical model focused on treatment.

7 Lack of services, failure to address end of life issues, and episodes of acute deterioration meant these patients had less opportunity to die at home. I'm expecting it to be something catastrophic so planning and discussing it isn't really an issue (GP of patient 17).

8 GPs recognised more resources for patients with cancer and felt frustrated by their own role, which seemed limited to monitoring and adjusting medication. I'm just a blood leach and monitor (GP of patient 14). There's not a lot we can do for people like him (GP of patient 3).

9 Summary comparison Lung cancer Heart failure Cancer trajectory with clear terminal phase. Able to plan for death. Good understanding of diagnosis and prognosis How long have I got Swinging between hope and despair Gradual decline punctuated by episodes of acute deterioration Little understanding of diagnosis and prognosis I know it won t get better but I hope it won t get any worse Daily grind of hopelessness Lung cancer takes over life and becomes overriding concern Treatment calendar dominates life, more contact with services and professionals Much co-morbidity to cope with, heart often not seen as main issue Shrinking social world dominates life, little contact with health and social services

10 Summary comparison Lung cancer Heart failure Feels worse on treatment, coping with side effects Relatives anxious Feels better on treatment, work of monitoring and balancing in community Relatives isolated and exhausted Financial benefits accessible Specialist services often not available in the community Care prioritised early as cancer and later as terminally ill Less access to benefits with uncertain prognosis Specialist services rarely available in the community Less priority as a chronic disease and less priority later as uncertain if yet terminally ill

11 What does this tell us? Need for better information Patients and carers negatively affected socially, functionally, emotionally Care may be uncoordinated and unplanned Health care professionals may feel frustrated and disempowered

12 OTHER EVIDENCE OF UNMET NEED

13 Symptom prevalence and intensity Symptoms Prevalence (%) Mean Intensity HF Cancer HF Cancer Dyspnoea * Tiredness Anxiety Depression O Leary et al A comparative study of the palliative care needs of heart failure and cancer patients Eur J Heart Failure ;4:

14 Symptom prevalence and intensity Symptoms Prevalence (%) Mean Intensity HF Cancer HF Cancer Drowsiness Pain * Reduced appetite * Nausea O Leary et al A comparative study of the palliative care needs of heart failure and cancer patients Eur J Heart Failure ;4:

15 Other measures HF patients more functionally independent Emotional distress (HADS) similar Quality of life (SF36) similar (HF higher social functioning) Satisfaction with care similar Community services (OT, SW, physio) similar

16 Local audits 3 audits of inpatient HF care: acute care (n=80 inpatients), referrals to specialist HF nurses (n=50 inpatients), and HF knowledge in general physicians (n=23 physicians). Only 6% of patients discharged were assessed to be in palliative (symptomatic treatment only) or end stage (life expectancy 6-12 months) HF. However 40% died within 6 months. Physicians only occasionally consider palliative or terminal care needs of inpatients with HF. Physicians rarely ask for palliative or terminal care advice from specialist HF nurses or palliative care services.

17 One year survival rates, heart failure and the major cancers compared, mid s, England and Wales

18 EOL discussions 2 papers: no patients had discussed EOL care preferences, disease progression or future care options 9 papers: few had discussed prognosis, EOLC, CPR or other life-sustaining interventions, plans for future care Barclay et al End-of-life care conversations with heart failure patients. Br J Gen Prac 2011

19 Patient attitudes Vary! Some desire more information re prognosis/resus/likely progress etc Others rarely think about death, prefer not to think about prognosis, do not regard EOL issues as relevant to them Barclay et al End-of-life care conversations with heart failure patients. Br J Gen Prac 2011

20 Place and mode of death Study In hospital Out of hospital Not reported AIRE Sudden Chronic heart failure Total ATLAS Sudden Chronic heart failure Total

21 Summary Evidence of unmet need in Information and understanding of disease Planning for the future Physical and psychological symptoms Poor quality of life Restricted social life Impact on physical and psychological health of family caregivers Achieving preferred place of death