Palliative and end-of-life care Dr Richard Harding Cicely Saunders - - PowerPoint PPT Presentation

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

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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

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• 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

Relevance in 2016

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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”

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UK 10 most prevalent (physical) n=778

Symptom 7 day prev Level of distress (% whole sample)

Not at all Little bit Some- what Quite a bit Very 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 sleeping

61.8% 13.5% 10.9% 9.5% 12.1% 10.9%

Difficulty concentrating

60.7% 16.6% 15.2% 10.3% 9.1% 5.5%

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%

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UK 10 most prevalent (psychological)

7 day period prev Intensity

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 irritable

56.6% 10.4% 22.4% 16.3% 4.2%

Harding et al BMJ STI 2010

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Adult HIV symptom datasets

Argentina n=200

• utpatients

London n=778

• utpatients

SOWETO n= 385 ART

• utpatients

5 sites Uganda & South Africa n= 224 advanced pts

Uganda n= 200 newly diagnosed UK n= 347 Gay men

Kenya n=378

• utpatients

VIETNAM n=1134

• utpatients

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• 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

Key messages

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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

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“From the life of the virus to the life of the host”

Spiritual problems Emotional problems Social problems Physical problems

Optimal quality of life here?

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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

• utcomes

Justice AIDS & Behavior 2011

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• 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

Trial Findings: TOPcare

Integrated palliative care alongside HIV treatment

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• 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

UK London death audit

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“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%)

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• 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

• ut there. Umm, I've had to sort of muddle my way

through, just to find out things.”

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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

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• 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

Is palliative care effective/ cost effective?

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• 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

Who can provide it?

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Barriers to HIV palliative care Harding et al Pall Med 2005

• 1. Disease factors
• Lack of predictability
• Need for dual curative

and palliative approaches

• Need for

polypharmacy, particularly with reference to antiretroviral therapy

• 2. Patient factors
• Poverty
• Homelessness
• Rural locale
• Heterogeneous symptoms
• Need complexity (e.g.

IDUs)

• Accept sub optimal

analgesia

• Reluctance to address

end-of-life

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• 3. Clinician factors
• Lack of adherence to

palliative protocols

• Tension in palliative v.

general medicine

• Communication skills
• Reluctance to address

end-of-life

• Inadequate

assessment

• Lack paed strategies
• Fear analgesia misuse
• 4. Service factors
• Poor end-of-life

planning

• Poor carer support

Curative focus

• Poor specialist pain
• Low HIV experience
• Stigma and

discrimination

• Poor education
• pportunities
• Access in prisons,

nursing homes

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• Determining what patient wants, when, where

– People DO want to know poor prognosis – “within a scenario of serious illness such as cancer with less than a year to live” 73.9% Harding et al Psycho-

Oncology 2013 6 European Countries + 2 African

– It needs to be clear what has been shared, who by, what patient wants, how this changes – Planning in advance within cultural practice (Stanford 2012)

• Assessment should be holistic & ongoing

– The evidence shows early intervention improves

• utcomes & saves costs

– It is difficult to optimise outcomes in final days – The death audit data shows many predictable deaths

Communication & assessment

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PATIENT INTERVIEW 11a ‘Interviewer: Do you feel like the doctors and nurses that you’re seeing now you trust… to be honest to you? Respondent: Oh 100%, yeah… I mean, they’re the professional people aren’t they - if you can’t put your faith in them, who do you put your faith in?’ CARDIOLOGIST INTERVIEW 1 ‘Interviewer: So how do you raise these conversations with the family? Respondent: Well, you… take them aside, you say ‘Well, this is the situation, you’ve heard what I’ve said to him

• r her directly, but I have to tell you that was the
• ptimistic slant… for your point of view I have to tell you

I’d be very surprised if they were living in a month or six

• weeks. And you must not convey that to them because

I’ve got to have that aspect of hope from the patient.’ Harding et al, BMJ Heart 2007

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• ACP: NHS end of life care strategy

– “The care of all dying patients must improve to the level of the best”

• DNAR (from GMC)

– “It may also help to ensure that the patient’s last hours or days are spent in their preferred place of care by, for example, avoiding emergency admission from a community setting to hospital”

Advance care planning

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• iPOD study, 2008 data:

– Dr Joachim Cohen, University of Brussels – Dr Donna Wilson, University of Alberta

• In Canada

– 1.8% deaths had HIV as underlying cause (ICD- 10 codes B20-B24) – 69.2% aged under 50 – 88.2% urban dwelling – 18.2% died at home, 71.2% in hospital – RR of home death 0.72 compared to cancer

HIV place of death in Canada

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• Engage with Canadian Hospice Palliative Care

Association

– Director is Sharon Baxter, ex-Director of Canadian AIDS Society

• Ensure collaboration with local palliative care

providers for skills building

– Selwyn 2003, Simms 2012 “skills lost”

• Use multidimensional PROMS

– Assessment is key

• Ensure you recognise and plan for “expected” death

alongside opportunities to prevent/treat/reverse where possible

– This is NOT an either/or situation!

Conclusions

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