Caring for all in the last year of life: making a difference.


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Inaugural presentation by Prof. Scott A. Murray, St Columba's Hospice Chair of Primary Palliative Care, Primary Palliative Care Research Group, Centre for Population Health Sciences: General Practice Section, University of Edinburgh. April 21, 2009

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  • May I thank Sir Timothy O’Shea for that most kind introduction. Firstly, I would like to thank St Columba’s Hospice for the generosity in establishing this Chair of Palliative Care strategically placed in General Practice, and also for establishing the Chair of Palliative Medicine to which Marie Fallon was appointed at the same time. I would also want to thank John Smyth and John Savill and many others at the University for their vision and work in taking this development forward. Edinburgh University is good at identifying and backing important developments and I strongly believe that this is such a case. I consider it indeed a great honour to take up and establish this Inaugural Chair especially as it helps consolidate the growing significance of the Primary Palliative Care Research Group. Let me also thank my family, Mary a General Practitioner in Dalkeith, who has been very supportive in many ways, and our children, Andrew, Susie and Iain. May I also thank so many people for attending from throughout Scotland, it’s superb that there’s so many people here today, and also Tony Delamothe from the BMJ for attending and illustrating their keen interest in palliative care in general, and our work in Edinburgh in particular.
  • Caring for all in the last year of life: making a difference.

    1. 1. <ul><li>Caring for all in the last year of life: making a difference. </li></ul><ul><li> Inaugural lecture,21 st April 2009 </li></ul><ul><li>Scott A Murray </li></ul><ul><li>St Columba’s Hospice Chair of Primary Palliative Care </li></ul><ul><li>Primary Palliative Care Research Group </li></ul><ul><li> </li></ul><ul><li>[email_address] </li></ul>
    2. 15. General Practice Teaching Team with student prize winner
    3. 17. Palliative care research team <ul><li>Broad clinical and methodological base </li></ul>General Practitioners Public Health Community Nurses Cardiologist/ Respiratory Physician Epidemiologist Social Scientist Psychologist Social Worker Ethnographer Hospital Palliative Medicine Specialist Hospice Doctors Specialist Palliative Care Nurse Ongoing patient & Carer group PhD Students Shared vision to understand the experience of patients and carers, and to develop and test models of best care
    4. 18. Murray S, Sheikh A. Serial interviews for patients with progressive diseases. Lancet 2006; 368: 901-902. Kendall M, Harris F, Boyd K, Sheikh A, Murray S, Brown D, Mallinson I, Kearney N, Worth A. Key challenges and ways forward in researching the “good death”. BMJ 2007; 334:521-524. Living and dying well
    5. 19. Caring for all in the last year of life: making a difference <ul><li>1. All life-threatening illnesses </li></ul><ul><li>2. Earlier than later </li></ul>5. In the community 3. Holistic care – all dimensions 4. All nations
    6. 20. World Mortality Rate 100 % 100% 100% 100%
    7. 21. Profile of People who die <ul><li>UK1900 / </li></ul><ul><li>Age at death </li></ul><ul><li>46 </li></ul><ul><li>Top 3 causes </li></ul><ul><li>Infectious diseases </li></ul><ul><li>Accident </li></ul><ul><li>Childbirth </li></ul><ul><li>Disability before death </li></ul><ul><li>Not much </li></ul><ul><li>UK 2000 </li></ul><ul><li>Age at death </li></ul><ul><li>78 </li></ul><ul><li>Top 3 causes </li></ul><ul><li>Cancer </li></ul><ul><li>Organ failure </li></ul><ul><li>Frailty/ dementia </li></ul><ul><li>Disability before death </li></ul><ul><li>Months - many years </li></ul>
    8. 22. GP has 20 deaths per list of 2000 patients per year Challenge 1 Quality end of life care for all Death High Low Many years Function Death High Low Months or years Function Organ failure 6 Acute 2 Dementia, frailty and decline 7 Death High Low Weeks, months, years Function 5 Cancer
    9. 23. <ul><ul><li>“ Cancer” Trajectory, Diagnosis to Death </li></ul></ul>Time Onset of incurable cancer -- Often a few years, but decline often < 4 months Function Death High Low Cancer Specialist palliative care available Generally predictable course, short decline Relatively well resourced hospice care fits well
    10. 24. Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or heart failure: prospective interview study of patients and their carers in the community. BMJ 2002;325:929-32. Scott Murray Kirsty Boyd Marilyn Kendall Allison Worth Fred Benton Hans Clausen
    11. 25. <ul><ul><li>Organ System Failure Trajectory </li></ul></ul>Function Death High Low (heart, lung, liver … failure) Frequent admissions, self-care becomes difficult ~ 2-5 years, but death usually seems “sudden” Time Needs: acute care for exacerbations, chronic care, support at home*. No service designed to routinely meet the needs of this pattern of decline * No one seems to believe we have got this even half right . Delamothe T. BMJ 2009;338:b11457
    12. 26. <ul><li>Dementia/Frailty Trajectory </li></ul>Time Variable - up to 6-8 years Death High Low Onset deficits in activities of daily living, speech, ambulation Function Needs: Integrated clinical care Long term support at home, carer support, possibly nursing care. Care homes with reliably good end-of-life care
    13. 27. Implications for Service Planning and Redesign We need services which meet the typical needs of people on these three different trajectories “ Well, this certainly scuppers our plan to conquer the universe”
    14. 28. May 2008 <ul><li>BMJ poll: What area </li></ul><ul><li>in medicine should </li></ul><ul><li>be prioritised to make </li></ul><ul><li>the most clinical </li></ul><ul><li>difference to most </li></ul><ul><li>people? </li></ul><ul><li>Care for all at the end of life </li></ul><ul><ul><li>Scott A Murray and Aziz Sheikh BMJ 2008 336: 958-959. </li></ul></ul>
    15. 29. Copyright ©2005 BMJ Publishing Group Ltd. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011. Challenge 2 Palliative care approach early, at diagnosis of life-threatening illness .
    16. 30. Sentinel events Caring for people with organ failure: 3 stages Stage 1 Physically well Stage 2 Active supportive and palliative care Stage 3 Terminal care Death High Low Time Function
    17. 31. Sentinel events Caring for people with organ failure: 3 stages Gold standards Framework Liverpool Care Pathway Care Plan Stage 1 Physically well Stage 2 Active supportive and palliative care Stage 3 Terminal care Death High Low Time Function
    18. 32. When is a patient palliative? <ul><li>Would you be surprised </li></ul><ul><li>if Mrs A were to die within </li></ul><ul><li>the next 12 months? </li></ul><ul><li>Study in cardiology ward revealed </li></ul><ul><li>that this question identifies 60 -70% of admissions </li></ul><ul><li>Avoid “prognostic paralysis* ” </li></ul>*Murray SA, Boyd K, and Sheikh A. Palliative care in chronic illnesses: we need to move from prognostic paralysis to active total care. BMJ 2005. 330:611-12. Joanne Lynn USA
    19. 33. Challenge 3: meeting all dimensions <ul><li>Physical Psychological </li></ul><ul><li>Social Spiritual </li></ul>
    20. 34. Spiritual needs <ul><li>Everyone has them if faced with a serious illness </li></ul><ul><li>Accepted definition used internationally </li></ul><ul><li>Relates to meaning and purpose of life </li></ul><ul><li>People may or may not use religious vocabulary </li></ul><ul><li>Such needs may cause distress </li></ul>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
    21. 35. Dying is a 4-D activity <ul><li>What’s happening with respect to other dimensions of need? </li></ul><ul><li>Method </li></ul><ul><li>Thematically analysed the serial interviews as case studies longitudinally and then cross-sectionally from a number of studies. </li></ul><ul><li>Identified the presence and characteristics of social, psychological and spiritual needs </li></ul>
    22. 36. 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: 393-402 His old friends won’t even take a cup of tea with me now I’ve got cancer” Mrs LR.
    23. 37. Lung Cancer - psychological trajectory Four times when distress was common 1. At diagnosis 2. After initial treatment 3. At recurrence or disease progression 4. At terminal stage
    24. 39. “ living with uncertainty” “ It was like a black hole” “ It’s much worse the second time round” “ You don’t know what is is going to happen to you, fear is the worst thing” “ great nurses and departments they are so caring”
    25. 40. .
    26. 41. Heart Failure <ul><li>Social Trajectory </li></ul><ul><li>“ I feel like I’m in prison here with him and each day is just like that” Mr HM’s carer. </li></ul><ul><li>Psychological trajectory </li></ul><ul><li>Psychological wellbeing appeared to mirror the physical and social trajectories “I slipped down the bed and oh panic attacks I got, Mr HQ. </li></ul><ul><li>Spiritual trajectory </li></ul><ul><li>This reflected gradual loss of identity and growing dependence. </li></ul><ul><li>“ Where is god in all this, has god forsaken me” Mr HU. </li></ul>
    27. 42. 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 heart failure. J Pain Sympt Man 2007; 34: 393-402
    28. 43. Awareness of these trajectories <ul><li>We can plan 4-D care </li></ul><ul><li>We can plan timely care when needs likely </li></ul><ul><li>Patient and carers can understand what the future might hold </li></ul>Murray SA, Chinn DJ, Sheikh A Access to psychological and psychiatric services needs to be improved for the dying JRSM 2006;99(12):601 “ The physician who can foretell the course of the illness is the most highly esteemed”. Hippocrates
    29. 44. Multi-dimensional distress Glioma Physical Frailty Bowel Cancer PhDs AIDS Debbie Cavers Anna Lloyd Emma Carduff Katharine Thompson Janet Sikasote
    30. 45. Establishing c ore set of assessment and outcomes measures Dan Stark Irene J Higginson Michael Sharpe, David Weller, Aziz Sheikh, Scott Murray, Marie Fallon Implementing interventions in palliative care
    31. 46. Challenge 4: reaching all in need Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed and developing countries. BMJ 2003;326:368-72. Liz Grant
    32. 48. Outline comparison <ul><li>Edinburgh, Scotland </li></ul><ul><li>main issue existential or spiritual distress </li></ul><ul><li>analgesia effective </li></ul><ul><li>anger in the face of illness </li></ul><ul><li>“ just keep it to myself” </li></ul><ul><li>spiritual needs evident but unmet </li></ul><ul><li>diagnosis brought active treatment </li></ul><ul><li>patients concerned about how carer will cope in future </li></ul><ul><li>support from hospital and primary care team </li></ul><ul><li>Chogoria, Kenya </li></ul><ul><li>main issue physical suffering, especially pain </li></ul><ul><li>analgesia unaffordable </li></ul><ul><li>acceptance rather than anger </li></ul><ul><li>community support accepted </li></ul><ul><li>patients comforted and inspired by belief in God </li></ul><ul><li>diagnosis signalled waiting for death </li></ul><ul><li>patients concerned about acute physical and financial burden to family </li></ul><ul><li>lack of support, equipment, and basic necessities </li></ul>
    33. 49. Approaching integration (n=4) Localised provision (n=11) Capacity building activity underway (n=11) No hospice-palliative care activity yet identified (n=21)
    34. 50. Mg/capita Source: International Narcotics Control Board By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, 2008 (156 Countries) Botswana Swaziland Namibia Mozambique Lesotho Global Mean (5.5708 mg) Austria (121.45 mg) France (42.30 mg) United Kingdom (28.56 mg) Germany (24.42 mg) Global Consumption: morphine 2005 Global mean 5.5708 mg Africa Regional mean 0.4865 mg Botswana 0.6028 mg Lesotho 0.0050 mg Mozambique 0.0056 mg Namibia 0.0665 mg Swaziland 0.2290 mg
    35. 59. Challenge 5 Making a difference - in the community <ul><li>In UK 19% of </li></ul><ul><li>people die at home </li></ul><ul><li>Over 50% would </li></ul><ul><li>prefer to die at home </li></ul><ul><li>Gold standards </li></ul><ul><li>framework in 80% </li></ul><ul><li>UK practices </li></ul><ul><li>Australia, Canada </li></ul>Keri Thomas Geoff Mitchell
    36. 60. “Living and Dying Well” Promote a public discourse about death, dying and bereavement National Action Plan for Palliative and End of Life Care in Scotland Our research findings and advocacy are highlighted Elizabeth Ireland
    37. 61. Living and dying well in the community <ul><li>Steps : </li></ul>1. Identify 2. Assess 3. Plan + communicate
    38. 62. Advance care planning interventions <ul><li>What’s the most important issue in your life right now? </li></ul><ul><li>If things got worse, where would you like to be cared for? </li></ul>Murray S, Sheikh A, Thomas K. Advanced care planning in primary care. BMJ 2006;333: 868-869. Community hospice team Primary care teams MD Deirdra Sives Bruce Mason
    39. 63. Midlothian Care Homes project <ul><li>Routine advance care planning from admission to care homes </li></ul><ul><li>Increase in DNAR status documented from 8 to 71% in patients who died </li></ul><ul><li>Reduction of nearly 50% (from 15% to 8%) of residents dying in hospital </li></ul><ul><li>Interviewed bereaved relatives reported better care </li></ul>Lothian Health Board
    40. 66. Caring for all in the last year of life: <ul><li>1. All life-threatening illnesses </li></ul><ul><li>2. Earlier than later </li></ul>5. In the community 3. Holistic care – all dimensions 4. All nations
    41. 67. Research funded 2009 <ul><li>Models of integrated palliative </li></ul><ul><li>care in primary and secondary care </li></ul><ul><li>Lung cancer care in community </li></ul><ul><li>Primary oncology </li></ul><ul><li>AIDS in Africa </li></ul><ul><li>Continuity of cancer </li></ul><ul><li>care from diagnosis </li></ul><ul><li>RCT of dignity therapy THE DUNHILL TRUST </li></ul><ul><li>Guidelines for evaluating EoLcare </li></ul>Guidelines for evaluating end of life care
    42. 68. <ul><li>Caring for all in </li></ul><ul><li>the last year of life: </li></ul>