Preventing harmful treatment

Transcription

1 Preventing harmful treatment How can Palliative Care prevent patients receiving overzealous or futile treatment? Antwerp, November 2010 Prof Scott A Murray, St Columba s Hospice Chair of Primary Palliative Care Primary Palliative Care Research Group Scott.Murray@ed.ac.uk realise that futile treatment is common educate about inevitability of death, professionals and public get involved with all diseases, with generalists get involved early in illness, before opportunity cost of say chemotherapy Must support all dimensions Get involved in the community World Mortality Rate Death is part of the human condition 100% 100% 100% 100% SMOKING Prof. Dr. Scott A Murray 1 van 10

2 Profile of People who die 1900 Age at death 46 Top 3 causes 1. Infectious disease 2. Accident 3. Childbirth 2000 Age at death 78 Top 3 causes 1. Cancer 2. Organ failure 3. Frailty/ dementia May 2008 BMJ poll: What area in medicine should be prioritised to make the most clinical difference to most people? Disability before death Not much Disability before death 2-4 years Care for all at the end of life Scott A Murray and Aziz Sheikh BMJ : The three main trajectories of physical decline at the end of life Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330: Function High Function High Low Organ failure Months or years Death Low Death Weeks, months, years Murray, S. A et al. BMJ 2008;336: GP has 20 deaths per list of 2000 patients per year Acute Function High Low Many years Death Copyright 2008 BMJ Publishing Group Ltd. Prof. Dr. Scott A Murray 2 van 10

3 2. Early: from when is pall care appropriate? When patients may benefit How to identify? Triggers Clinical status Admission to care home Prognosis or need? Appropriate care near the end of life: from disease modifying to active palliation. Murray, S. A et al. BMJ 2005;330: Copyright 2005 BMJ Publishing Group Ltd. High Low Function Caring for people with organ failure Stage 1 Physically well: Chronic Disease Management Stage 2 Active supportive and palliative care: Gold SF Stage 3 Terminal care: Liverpool care pathway Sentinel event Care Plan Gold standards Framework Time Liverpool Care Pathway Death 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 : Prof. Dr. Scott A Murray 3 van 10

4 Application 3. Getting involved in holistic care: all dimension Can being aware of these trajectories help clinicians plan timely care to meet their patients multi-dimensional needs better, and help patients and carers cope Might this stop patients grasping at straws. Practical ways of doing this in general practice physical social psychological spiritual Dying in Kenya and Lothian, BMJ 2003 Edinburgh, Scotland main issue existential or spiritual effective analgesia anger in the face of illness just keep it to myself spiritual needs evident but unmet diagnosis brought active treatment, then watching and waiting patients concerned about how carer will cope in future support from hospital and primary care team specialist palliative care services in either hospital, hospice or home Outline comparison Chogoria, Kenya main issue physical suffering, especially pain analgesia unaffordable acceptance rather than anger acceptance of community support patients comforted and inspired by belief in God diagnosis signalled waiting for death, oncological treatment not considered patients concerned about physical and financial burden to their family lack of support, affordable analgesia, equipment, and basic necessities specialist palliative care services not available in the community Prof. Dr. Scott A Murray 4 van 10

5 Spiritual needs Everyone has them if faced with a serious illness Relate to meaning and purpose of life May or may not use religious vocabulary Such needs may cause distress METHODS Synthesised qualitative data from two serial interview studies of people with advanced heart failure and lung cancer. Identified the presence and characteristics of social, psychological and spiritual needs Thematically analysed the serial interviews as case studies longitudinally and then in cross-sections. 108 interviews with patients and 57 with family carers. His old friends won t even take a cup of tea with me now I ve got cancer Mrs LR. Lung Cancer -----Psychological Trajectory Four key stages Diagnosis, end of treatment, disease progression and terminal stage. The treatment has helped us well, great nurses and departments they are so caring. The oncology people, I terminal stage mean, they get to know their patients so well Mr LK. It was like a black hole Ms LP. It s much worse the second time round You don t know what is going to happen to you, fear is the worst thing Mrs LI. Prof. Dr. Scott A Murray 5 van 10

6 J Pain and Sympt Man, Murray SA, 2007 Lung cancer - physical and social trajectories interrelated, while psychological and spiritual distress tends to increase at four specific transitions. 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 Heart Spiritual Trajectory This reflected gradual loss of identity and growing dependence. Where is god in all this, has god forsaken me Mr HU. Is it real, is there life after death, where am I going, what happens if I m wrong and there is something after all Mrs HB. The most important thing that my GP does well he assures me that I m not away yet he always listens Mr HU. Heart Failure Social Trajectory It was a parallel shrinking social world with the physical decline places you can t go, people you can t see, things you can t do. I feel like I m in prison here with him and each day is just like that Mr HM s carer. Heart Failure - Psychological Trajectory Psychological wellbeing appeared to mirror the physical and social trajectories I slipped down the bed and oh panic attacks I got, and had to sit up. I couldn t get my breathe. You can t actually tell people Mr HQ. It s going to be what it s going to be the rest of the time I ve got left I m just taking each day as it comes Mrs MW. Prof. Dr. Scott A Murray 6 van 10

7 Adopting patient-centred supportive care: possible questions BMJ editorial, Murray March 2005 What s the most important issue in your life right now? What helps you keep going? What is your greatest problem? You usually seem quite cheerful, but do you ever feel down? If things got worse, where would you like to be cared for? The ABC and D of Dignity Attitude and assumptions Behaviour Compassion Dialogue Dignity and the essence of medicine: The A,B,C and D of dignity conserving care Chochinov British Medical Journal 28 July 2007 Prof. Dr. Scott A Murray 7 van 10

8 The Gold Standard of end of life care The care of ALL dying patients is raised to the level of the best. (NHS Cancer Plan 2000) Harvey Max Chochinov, OM MD PhD FRSC Canada Research Chair in Palliative Care Director, Manitoba Palliative Care Research Unit University of Manitoba, Canada Applications of learning from cancer pts to the other 3 out of 4 patients Gold Standards Framework in Community Pall Care Steps : 2. Assess 3. Plan 1. Identify using the PIG Advance care planning: in primary care Murray et al, BMJ 2006;333: What elements of care are important to you and what would you like to happen? If your condition deteriorates, where would you like to be cared for (first and second choices)? Do you have a view on resuscitation if your heart suddenly stops? This can engender hope rather than dissipate it Prof. Dr. Scott A Murray 8 van 10

9 Midlothian Gold Standards Framework in Care Homes project Advance Care Planning Increase in DNAR status documented from 8 to 71% Increase in care planning from 4 to 55% Reduction of around 50% (from 15% to 8%) of residents dying in hospital Relatives noticed much better care Health promoting palliative care Prof. Dr. Scott A Murray 9 van 10

10 Where there is no cure we must offer a real alternative Must research the prevalence and costs of harmful treatment Must educate the public and professionals about inevitability of death Must get involved with all diseases, beyond cancer, with generalists Must get involved early in illness, before opportunity cost of say chemotherapy Must offer continuity of care and realistic hope ie get involved with spiritual care Prof. Dr. Scott A Murray 10 van 10