Palliative and end-of-life care

Transcription

1 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

2 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

3 Relevance in 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

4 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

5 UK 10 most prevalent (physical) n=778 Symptom 7 day prev Level of distress (% whole sample) Not at all Little bit Somewhat 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 Difficulty concentrating 61.8% 13.5% 10.9% 9.5% 12.1% 10.9% 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%

6 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

7 Adult HIV symptom datasets UK n= 347 Gay men Uganda n= 200 newly diagnosed London n=778 outpatients Argentina n=200 outpatients 5 sites Uganda & South Africa n= 224 advanced pts Kenya n=378 outpatients VIETNAM n=1134 outpatients SOWETO n= 385 ART outpatients

8 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

9 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 wellbeing may be affected over time by a disease, disability or disorder CDC

10 From the life of the virus to the life of the host Spiritual problems Optimal quality of life here? Physical problems Emotional problems Social problems

11 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

12 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

13 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

14 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%)

15 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.

16 Outcome measures 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

17 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

18 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

19 Barriers to HIV palliative care Harding et al Pall Med 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

20 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 opportunities -Access in prisons, nursing homes

21 Communication & assessment 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 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 outcomes & saves costs It is difficult to optimise outcomes in final days The death audit data shows many predictable deaths

22 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 or her directly, but I have to tell you that was the optimistic 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

23 Advance care planning 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

24 HIV place of death in Canada 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 % urban dwelling 18.2% died at home, 71.2% in hospital RR of home death 0.72 compared to cancer

25 Conclusions 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!

26 Please come to 13 th AIDS Impact conference, submit abstracts online 13 th -15 th November 2017