5 key areas for research, and how to go forward. Primary Palliative Care Research Forum, University of Capetown, September, 2010

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1 5 key areas for research, and how to go forward Primary Palliative Care Research Forum, University of Capetown, September, 2010 Scott A Murray St Columba s Hospice Chair of Primary Palliative Care Primary Palliative Care Research Group Scott.Murray@ed.ac.uk

2 5 areas for research 1. All illnesses 2. Earlier than later 3. All dimensions 4. All nations 5. All settings

3 World Mortality Rate 100% 100% 100% 100%

4 Challenge 1 End of life care for all? Function High Function High Low Organ failure Months or years Death Low Cancer Death Weeks, months, years GP has 20 deaths per list of 2000 patients per year Acute Function High Low Dementia, frailty and decline Many years Death

5 Organ failure trajectory

6 Frailty trajectory

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8 Area 2: When? Earlier rather than later. Copyright 2005 BMJ Publishing Group Ltd. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:

9 High Function Caring for people with organ failure: 3 stages Stage 1 Physically well Stage 2 Active supportive and palliative care Sentinel events Care Plan Stage 3 Terminal care Liverpool Care Pathway Death Low Gold standards Framework Time

10 When is a patient palliative? Would you be surprised if Mrs A were to die within the next 12 months? Joanne Lynn USA Study in cardiology ward revealed that this question identifies 60-70% of admissions Avoid prognostic paralysis* *Murray SA, Boyd K, and Sheikh A. Palliative care in chronic illnesses: we need to move from prognostic paralysis to active total care. BMJ :

11 Murray SA and Boyd K. Recognising and managing key transitions in end of life care. BMJ in press 1. Ask Supportive & Palliative Care Indicators Tool Does this patient have an advanced long term condition and/or a new diagnosis of a progressive life limiting illness? Would you be surprised if this patient died in the next 6-12 months? 2. Look for one or more general clinical indicators Performance status poor (limited self care; in bed or chair over 50% of the day) or deteriorating. Patient has continued to lose weight (>10%) over the past 6 months. Patient has had two or more unplanned admissions in the past 6 months. Patient is in a nursing care home or NHS continuing care unit; or needs more care at home. 3. Now look for two or more disease related indicators Heart disease Respiratory disease Cancer NYHA Class IV heart failure, severe valve disease or extensive coronary artery disease. Breathless or chest pain at rest or on minimal exertion. Persistent symptoms despite optimal tolerated therapy. Severe airways obstruction (FEV 1 <30%) or restrictive deficit (vital capacity < 60%, TLCO <40%). Meets criteria for long term oxygen therapy (PaO 2 < 7.3). Breathless at rest or on minimal exertion between exacerbations. Persistent symptoms despite optimal tolerated therapy. Yes No Performance status deteriorating due to metastatic cancer and/ or co-morbidities. Persistent symptoms despite optimal palliative oncology treatment or too frail for oncology treatment. Neurological disease

12 Midlothian Care Homes project Routine advance care planning from admission to care homes Increase in DNAR status documented from 8 to 71% in patients who died Reduction of nearly 50% (from 15% to 8%) of residents dying in hospital Interviewed bereaved relatives reported better care Lothian Health Board

13 Challenge 3: meeting all dimensions physical psychological social spiritual

14 Spiritual needs Everyone has them if faced with a serious illness Accepted definition used internationally Relates to meaning and purpose of life People may or may not use religious vocabulary Such needs may cause distress Murray SA, Kendall M, Worth A, Boyd K, Benton TF, Clausen H. Exploring the spiritual needs of people dying of lung cancer or heart failure: prospective qualitative interview study. Pall Med 2004;18:39-45

15 Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in lung cancer J Pain Sympt Man 2007; 34: His old friends won t even take a cup of tea with me now I ve got cancer Mrs LR.

16 great nurses and departments they are so caring living with uncertainty It s much worse It was like the second a black hole time round You don t know what is is going to happen to you, fear is the worst thing

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18 Fig 2 Fluctuations of spiritual wellbeing mapped with other trajectories of physical, social, and psychological wellbeing in family carers of patients with lung cancer Murray, S. A. et al. BMJ 2010;340:c2581 Copyright 2010 BMJ Publishing Group Ltd.

19 Challenge 4: international Liz Grant Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed and developing countries. BMJ 2003;326:

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21 Outline comparison Edinburgh, Scotland Chogoria, Kenya 4main issue existential or spiritual distress 4analgesia effective 4anger in the face of illness 4 just keep it to myself 4spiritual needs evident but unmet 4main issue physical suffering, especially pain 4analgesia unaffordable 4acceptance rather than anger 4community support accepted 4patients comforted and inspired by belief in God

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24 Approaching integration (n=4) Localised provision (n=11) Capacity building activity underway (n=11) No hospice-palliative care activity yet identified (n=21)

25 Global Consumption: morphine Mg/capita France (42.30 mg) Austria ( mg) United Kingdom (28.56 mg) Germany (24.42 mg) Global Mean ( mg) Global mean mg Africa Regional mean mg Botswana mg Lesotho mg Mozambique mg Namibia mg Swaziland mg Botswana Swaziland Namibia Mozambique Lesotho 25 (156 Countries) 0 Source: International Narcotics Control Board By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, 2008

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27 Challenge 5 Making a difference - in all settings In UK 19% of people die at home Over 50% would prefer to die at home Gold standards framework in 80% UK practices Australia, Canada Keri Thomas Geoff Mitchell

28 Steps : Living and dying well in the community 1. Identify 2. Assess 3. Plan + communicate

29 What to do? Research Teaching Clinical work Advocasy Policy development

30 research Descriptive _Surveys, interviews In-depth qualitative MRC framework Quality improvement cycles

31 Advance care planning interventions What s the most important issue in your life right now? If things got worse, where would you like to be cared for? MD Deirdra Sives Bruce Mason Community hospice team Primary care teams Murray S, Sheikh A, Thomas K. Advanced care planning in primary care. BMJ 2006;333:

32 5 KEY CHALLENGES 1. All illnesses 2. Earlier than later 3. All dimensions 4. All nations 5. All settings