1. Role of Specialist Palliative Care Services in Patients Severely Affected by MS Dr Linda Wilson Consultant in Palliative Care Airedale

2. National Service Framework for LTC Quality Requirement 9 People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

3. 1.Do patients with advanced MS have specialist palliative care needs? 2.If so, what are they? 3.Can specialist palliative care services meet those needs? 4.If so, when should SPC become involved?

4. Do people with MS have palliative care needs? People with advanced MS and other long term conditions have unmet health and social needs in the last year of their lives Addington-Hall et al Pall Med 12(6)1998 3 year research project funded by MS Society, Kings College Hospital and Dept. of Palliative Care Policy, Kings College 32 people severely affected by MS

5. Kings Study Several broad themes identified: Significant symptom burden- Spasm, Pain, Secretions, Bowel management, Dysphagia, Nausea Distress associated with Loss and change-need for psychosocial support Provision of services and care –Lack of continuity and coordination of care –Lack of information about services, aids and adaptations, welfare benefits Need to address end of life issues-advance care planning Underpinning theme of ‘fighting for everything’

6. Symptom Burden in Advanced Disease Symptom Pain Fatigue Nausea Constipation Dyspnoea MS 2 68% 80% 26% 47% 26% Heart disease 1 Resp. Disease 1 41-77%34-77% 69-82%68-80% 17-48%? 38-42%27-44% 60-88%90-95% 1. Solano, Gomes, Higginson 2006; 2. Kings College London MS Pall. Care Project Cancer 1 35-96% 32-90% 6-68% 23-65% 10-70%

7. 1.Do patients with advanced MS have specialist palliative care needs? Yes, but not well researched 2.If so, what are they? Symptom control, psychosocial care, advance care planning and end of life issues 3.Can specialist palliative care services meet those needs? 4.If yes, when should SPC become involved?

8. Traditionally, relatively small numbers of people with chronic neurological conditions access specialist palliative care services Based on population figures, prevalence of MS in Bradford, Airedale and Craven is more than 600 individuals (?900) How many of these are severely affected? Need is potentially large but unknown at present In 2006 SPC saw 10 individuals with MS (1.6% of 600)

9. 10 individuals 12 inpatient admissions 7 received community team support 2 attended weekly Day Therapy

11. Challenges in MS Protracted disease and course is variable and can be difficult to predict Long term involvement- Some will benefit from ongoing SPC follow up but others may only have 1 off consultations/joint assessments or shorter periods of involvement ???Service overload Linking with other services-when do we get involved

12. When should specialist palliative care get involved? ‘The surprise question’ “Would you be surprised if this patient were to die in the next 6-12 months?” -an intuitive question integrating co- morbidity, social and other factors. Combined with…………..

13. Eligibility criteria The patient has one or more of the following needs which are unmet: –Uncontrolled or complicated symptoms. –Specialised nursing/therapy requirements. –Complex psychological/emotional issues. –Complex social or family issues. –Difficult decision making about future care.

14. Cure/Life-prolonging Intent Palliative Care- physical,emotional, social, spiritual Bereavement DEATHDEATH Palliative Care DEATHDEATH Evolving Model Of Palliative Care Time Cure/Life-prolonging Intent

15. Advanced planning Competency/Communication-MCA Further antibiotics PEG feeding tube Place of care CPR/Ventilation Advance statements and advance decisions

16. End of Life Care in MS 50% deaths related to complications of MS usually sepsis Others as general population-heart disease, tumours, etc. (high suicide rate) Symptoms at end of life common to most disease areas, the same principles as end of life care in other situations

17. End of life care in MS NHS End of Life Initiative -government initiative to improve quality of end of life care Increasing focus on enabling people to die in their preferred place of care Promotes use of Gold Standards Framework, Liverpool care Pathway for the Dying to ensure best practice in all settings (home, care home, hospital, hospice)

18. 1.Do patients with advanced MS have specialist palliative care needs? Yes, but not well researched 2.If so, what are they? Symptom control, psychosocial care, advance care planning and end of life issues 3.Can specialist palliative care services meet those needs? Yes but careful selection required, short term involvement and then withdrawal 4.If yes, when should SPC become involved? Surprise question and eligibility criteria

19. Case Study 1 36 year old lady, secondary progressive MS, lives with partner as main carer. 3 school age children fostered Bed bound and not eating or drinking High level of personal neglect and refusing help of paid carers Reluctant to engage with health professionals except a social worker who she had a good relationship with Adamant wanted to stay at home

20. Palliative care joint visit with social worker Disclosed fear that if admitted to hospital would not return home Short term hospice admission negotiated for symptom control and to assess competence Found to be competent and developed confidence that her wishes to be cared for at home would be respected Allowed paid carers to come in Continued to dislike hospital but accepted hospice admission to manage acute infective episodes Died during 3 rd septic episode in hospice Bereavement care for partner and children

21. Core Indicators Of Advanced Disease Recent, significant functional decline (loss of ADL’s) Dependence in 3 ADL’s or more Multiple co-morbidities Weight loss Serum albumin < 25 g/l Reduced performance status / Karnofsky score (KPS) < 50% Severe progression of disease in recent months Recent increase in episodes of hospitalisation

22. Exacerbations Deterioration End of life

23. Core Indicators Consider holistic assessment using palliative care approach having regard to  Quality of life  Comfort  Patient Choice Significant complex symptoms eg pain Communication difficulties eg Dysarthria+/- fatigue Cognitive difficulties Swallowing difficulties/ poor nutritional status Breathlessness +/- aspiration Medical complication Eg recurrent infection Ability to access hospital based review Difficulty verbalising choice consider PEG feeding tube Consider active management eg anti- biotic, and ventilation Input from medical team,SLT, O.T. and dietician, physiotherapist or neuropsychiatrist as appropriate Consider Referral to Specialist Palliative Care Home assessment for symptom control Advance directive End of life decisions and future management Symptom management & future care planning Need for end of life discussion =/- preferred place of care Refer to MDT including hospital palliative care Refer to appropriate acute service Yes Disease specific indicators Suspect impaired ability to make decisions Patient wants active management No or not sure No Yes Pathway for Referral of Person Severely Affected by MS To Specialist Palliative Care

26. Determining Capacity –Decision specific –Comprehend and retain information –Believe in it –Weigh up information, balance risks and arrive at a choice