WHO Collaborating Centre Palliative and end-of-life care Dr Richard Harding Cicely Saunders Institute Department of Palliative Care, Policy & Rehabilitation King’s College London UK
Background • HIV now cast as “chronic” condition with potentially near-normal life expectancy (Lohse et al 2007 Arch Int Med ) • Improved mortality →policy shifts to full social participation • Optimal quality of life is an important clinical outcome alongside ART • Contribution of physical and mental health to QoL is current “critical challenge” in HIV medicine (Buscher JAMA 2010) • Evidence of high symptom burden (Harding et al STI 2010) and emerging physical complications (e.g. bone density, cardiovascular, renal, liver, malignancies) (Harding et al CID 2011) • People with HIV still require end-of-life care Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Relevance in 2016 1. People with HIV have multidimensional problems and suboptimal QoL – HIV remains “incurable” with wide-reaching impact 2. People are living and dying with HIV: – aging, other life-limiting conditions that are often not reversible 3. We must ensure full participation and continue patient empowerment to the end of life Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
WHO definition of HIV palliative care • “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
UK 10 most prevalent (physical) n=778 Symptom 7 day Level of distress (% whole sample) prev Not at all Little bit Some- Quite a Very what bit much Lack energy 70.8% 10.8% 19.8% 12.3% 12.1% 10.8% Drowsy/ tired 67.5% 10.7% 19.8% 9.8% 12.3% 10% Difficulty 61.8% 13.5% 10.9% 9.5% 12.1% 10.9% sleeping Difficulty 60.7% 16.6% 15.2% 10.3% 9.1% 5.5% concentrating Diarrhoea 53.6% 17.6% 12.6% 7.5% 7.5% 5.4% Sexual activity 53.5% 15.7% 8.1% 6.6% 7.1% 12.2% Pain 53.2% 18.0% 12.0% 5.9% 8.6% 5.4% Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
UK 10 most prevalent (psychological) 7 day Intensity period prev Rarely Occasionally Frequently Constantly Worried 69.9% 8.4% 25.4% 21.5% 9.1% Sad 66.3% 11.8% 26.9% 16.7% 6.2% Feeling 56.6% 10.4% 22.4% 16.3% 4.2% irritable Harding et al BMJ STI 2010 Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
UK Uganda Adult HIV symptom datasets n= 347 n= 200 Gay men newly diagnosed London n=778 outpatients 5 sites Uganda & South Africa n= 224 Argentina advanced n=200 pts outpatients SOWETO n= 385 ART outpatients Kenya n=378 VIETNAM n=1134 outpatients outpatients Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Key messages • Pain & symptom burden assoc with: – Risk Harding et al BMJ STI 2010 – Poor adherence Harding et al AIDS & Behavior 2012 – Viral rebound Lampe et al JAIDS 2010 – Poorer QoL Harding et al AIDS Care 2011 – Suicidal ideation 31% Sherr et al AIDS 2008 – ART Discontinuation/change Sherr et al HIV Med 2011 • Older gay men stigma accounts 39% QoL variance Slater et al J Assoc Nurses AIDS Care 2014 • Prayer & meditation used to improve subjective wellbeing Ridge 2008 Sociology Health & Illness • ART does improves quality of life (Bucciardini 2014) • QoL “critical challenge” to HIV medicine Buscher JAMA 2010 • Few intervention studies in person-centred care Harding Lancet Infect Dis 2012 Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Conceptual approaches: ‘health’ & ‘quality of life’ • “ Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity ” WHO 1948 • “ HRQOL is an assessment of how the individual's well- being may be affected over time by a disease, disability or disorder ” CDC Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
“From the life of the virus to the life of the host” Spiritual Optimal problems quality of life here? Physical Emotional problems problems Social problems Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Assessment in clinical practice • What is “clinically important”? – Physicians detect 1/3 of patients problems – Patient-reported symptoms equally assoc with survival and admissions as what the physician notes. Justice 2001 Med Care • Repeated study – Poor agreement with patient “gold standard” – 9/20 pt-reported symptoms assoc with clinical outcomes Justice AIDS & Behavior 2011 Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Trial Findings: TOPcare Integrated palliative care alongside HIV treatment • TOPCare • 2 week training and mentorship for existing ART nurses in HIV clinics • Holistic assessment & care planning • Significant impact on: – Mental health QoL (p=0.01) – Psychiatric morbidity (p=0.004) – Palliative care problems (psychosocial) (p=0.002) Lowther et al 2015 Lancet HIV Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
UK London death audit • 2013: 33,863 living with HIV in London, UK • N=530 reported deaths of people with HIV – Up from 486 in 2012) • Of these n=189 being treated in London – Hospital death n=125 (66%) • n=175 (93%) on ART – 125 (71% on ART); undetectable 67% of all deaths – Median CD4 =262 – 15/59 detectable were newly diagnosed – 38 (20%) died within a year of diagnosis – 136 (72%) not HIV-related – Deaths were “predictable” for 33/58 deaths Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
“Preventable deaths”? n=189 Cause n (%) Malignancy: non-AIDS 25 (13%) Malignancy: AIDS 32 (17%) Respiratory 19 (10%) Liver 13 (7%) Substance misuse 12 (6%) CVA 11 (6%) OI 10 (5%) Sepsis 10 (5%) Suicide 6 (3%) CVD 5 (3%) Other/ NK 46 (25%) Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
• Edward, 64, gay man living with HIV and prostate cancer – “Not knowing what's out there... how do I know what question to ask ? ... That's the difficulty that I have...if somebody came up to and said, "Right, OK, XYZ that's what you've got in front of you"...Then I can start asking the right questions...and I finish up spending an hour of somebody's time just trying to work out what's good for me. Nobody's bothered to sit down and really talk about what's going on and what's out there what sort of support groups are out there. Umm, I've had to sort of muddle my way through, just to find out things.” Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Outcome measures www.pos-pal.org • Are tools that assess : – meaningful areas of a person’s life and/or – results (outcomes) of treatments or care – in a way that informs collaborative decisions about future treatment and clinical decisions • Outcome measures: – promote patient-centred care and screening – communication between patient, doctor, family and remaining clinical team monitor the quality of the care provided – gather valuable information for the clinical team, which wouldn’t be – systematically captured in any other way. • Palliative Outcome Scale – Used by around 5,000 registered users in over 100 countries – Brief, sound psychometric properties, free to use – Many translations, disease-specific modules Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Is palliative care effective/ cost effective? • In HIV – Improves pain & symptom control, anxiety, insight, spiritual wellbeing – 22 studies, Harding BMJ STI 2005 • Recent evidence of early integration – Extends life, saves costs – Non-small cell lung cancer NEJM 2010 – Breathlessness Higginson et al Lancet Respiratory Medicine 2015 – Alongside ART improves QoL, mental health, psychosocial problems Harding et al, Lancet HIV 2015 Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Who can provide it? • Core skills of palliative and end-of-life care – All clinical team members should provide generalist palliative care – specialist consults and care provided by hospital consultancy teams, community teams, inpatient units, hospices • No mention in BHIVA standards of advanced care, palliative care, end-of-life care – not listed as one of the services patient should have access to in inpatient care Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Barriers to HIV palliative care Harding et al Pall Med 2005 1. Disease factors 2. Patient factors -Poverty -Lack of predictability -Homelessness -Need for dual curative -Rural locale and palliative -Heterogeneous symptoms approaches -Need complexity (e.g. IDUs) -Need for -Accept sub optimal polypharmacy, analgesia particularly with -Reluctance to address reference to end-of-life antiretroviral therapy Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
3. Clinician factors 4. Service factors -Poor end-of-life -Lack of adherence to palliative protocols planning -Poor carer support -Tension in palliative v. Curative focus general medicine -Poor specialist pain -Communication skills -Low HIV experience -Reluctance to address -Stigma and end-of-life discrimination -Inadequate -Poor education assessment opportunities -Access in prisons, -Lack paed strategies nursing homes -Fear analgesia misuse Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
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