Palliative Neurology Course. A Palliative Approach to Care in Neurology and Neurosurgery June 25, 2018

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2 A Palliative Approach to Care in Neurology and Neurosurgery June 25, 2018

3 June 25, 2018 Today s Agenda 1. A Palliative Approach to Care What is the Evidence? 2. Palliative Care in Pediatric Neurology 3. Palliative Care in Adult Neurology a focus on Movement Disorders 4. Palliative care in Neurosurgery a focus on Neuro-oncology

4 Our Speakers Dr. Teneille Gofton, FRCPC CSCN AAHPM (diplomate) Assistant professor, Western University Neurologist (Epilepsy and Neurocritical care) Consultant Physician in Palliative Care Member of Royal College Subspecialty Committee for Palliative Medicine and Examination Board Co-chair of Palliative Approach to Care Education Working Group, Canadian Society of Palliative Care Physicians

5 Our Speakers Dr. Chris Vadeboncoeur, MD FRCPC, Founder, Palliative Medicine Assistant Professor, University of Ottawa Pediatrician, Palliative Care Program, CHEO and Roger Neilson House Vice Chair, Pediatrics, Royal College Examination Committee for Palliative Medicine Chair Pediatric Palliative Care Subcommittee CSPCP Member, Palliative Approach to Care Education Working Group, Canadian Society of Palliative Care Physicians

6 Our Speakers Dr. Verónica Bruno Clinical Assistant Professor, University of Calgary Neurologist (Movement Disorders with particular interest in advanced parkinsonism) Neurologist in the Palliative Care Clinic for Advanced Movement Disorders in Toronto (TWH, UofT ), mentored by Dr. Janis Miyasaki

7 Our Speakers Dr. Jeff Hall Assistant professor, McGill University Neurosurgeon

8 Palliative care in chronic and progressive neurological disease What is the evidence? June 25, 2018

9 What is Palliative Care? Classic definition for palliative care is taken from the WHO Newer definition.. A palliative approach to care Represents an approach to care that can be applied by all health care providers From the point of diagnosis onwards

10 A Palliative Approach to Care Includes: Advance care planning Caregiver support Intensive management of distressing medical and psychiatric symptoms Throughout the illness trajectory Creutzfeldt et al. Neurol Clin Pract 2016;6:40 48 Vaughan et al. Curr Treat Options Neurol (2018) 20: 2

11 What is the Evidence for Palliative Care? A growing body of evidence Role for earlier initiation of a palliative approach to care, regardless of discipline Oncology Non-oncology Renal Heart failure Neurological sciences Palliative Neurology Course

12 What is the Evidence for Palliative Care? Palliative Neurology Course Palliative care is not solely indicated in the last days or weeks of life Creutzfeldt et al. Neurol Clin Pract 2016;6:40 48 Lancet Editorial. July 2017

13 What is the Evidence for Early Palliative Care? Evidence supports inpatient palliative care Improved clinical care Improved patient and provider satisfaction Improved quality of life More appropriate health care utilisation Rabow et al. J Pal Med 2013; 16(12): 1. Developing an Evidence-Based Palliative Care Curriculum for Specialty Trained Residents

14 What is the Evidence for Early Palliative Care? Evidence supports outpatient palliative care Improves patient, family, clinician satisfaction Improves symptom management and quality of life Has a positive impact on health care utilisation and hospital admissions Reduces health care costs Does not hasten mortality Rabow et al. J Pal Med 2013; 16(12): 1. Developing an Evidence-Based Palliative Care Curriculum for Specialty Trained Residents

15 Early Palliative Care RCT evidence supports early integration of palliative care alongside usual care in oncology Early palliative care concurrent with oncological care vs usual oncological care Intervention group Less likely to receive aggressive care at end of life Less likely to have hospice admission within 3 days of dying Cost savings associated with decreased chemotherapy and reduced hospitalisations Estimated savings >$2000 per patient Significantly longer survival Temel et al NEJM Developing an Evidence-Based Palliative Care Curriculum for Specialty Trained Residents

16 Temel et al NEJM

17 Neuropalliative Care Palliative Neurology Course Palliative care is relevant to patients/families with neurological illnesses progressive, incurable, associated with high symptom burden indicated at any time during an illness integrated into clinic visits based on ongoing assessment and patient/caregiver needs can be integrated alongside standard care based on the needs and goals of patients and their disease trajectory Without giving up therapies that may have curative intent Vaughan et al. Curr Treat Options Neurol (2018) 20: 2

18 Neuropalliative Care Palliative Neurology Course Research shows the majority of patients wish to die at home In home death 9% for PD, 17% for general elderly population Hospital deaths in neurology are high 43% for PD and 56% for MS US hospice deaths in neurology are low 0.6% for PD and and 2.5% for MS Neurologists broach advance care planning late in the disease course if at all, But at least 50% of patients with PD want to discuss advance care planning early in their disease course Boersma et al. Neurology 83 August 5, 2014

19 Neuro- Palliative Care High symptom burden in patient with cerebral tumours or intracranial metastases Gofton et al. J Neuro-Onc

20 Neuropalliative Care Palliative Neurology Course People with MSA have significant cumulative symptom burden Dayal et al. CJNS 2017.

21 Neuropalliative Care Palliative Neurology Course Multiple discussions occur along the disease trajectory Dayal et al. CJNS 2017.

22 Neuropalliative Care Palliative Neurology Course Palliative care may be delivered by any physician Primary palliative care Skills relevant to all physicians Palliative care may be delivered by a palliative medicine specialist Secondary or tertiary palliative care Intended for complex or advanced cases, refractory symptoms

23 Palliative Neurosciences - International European Association for Palliative Care Taskforce on Neurology Jan 2016 a collaborative effort between the EAPC and the European Academy of Neurology (EAN) Need for integration of palliative care into neurosciences Palliative Neurology Course Provide health/social care professionals with information about role of palliative care for patients with neurological diseases Oliver et al. Eur J Neurol.2016:23. Lancet Editorial. July 2017

24 Palliative Neurosciences - International EAPC/EAN Task Force called for Early integration of palliative care Specialist training for neurologists Better communication with patients and families advance care planning Palliative Neurology Course Need for further development of disease-specific guidelines Oliver et al. Eur J Neurol.2016:23. Oliver et al. Lancet Editorial Nov 2017

25 Dallara et al. J Child Neurol 2014, Vol. 29(12)

26 Challenges in Palliative Neurosciences Unique challenges Frequent communication impairment Frequent loss of decision making capacity Frequent loss of personhood Frequent behavioral problems Palliative Neurology Course Poor evidence base to support best interventions Gofton et al. JNS 2018 Lancet Editorial. July 2017

27 Challenges in Palliative Neurosciences Patients may be told they will die with a disease rather than from it Parkinson s disease age-adjusted mortality is higher in PD patients leading causes of death in PD are related to complications of PD falls, pneumonia Palliative Neurology Course Vaughan et al. Curr Treat Options Neurol (2018) 20: 2

28 Challenges in Palliative Neurosciences Physicians underestimate the emotional impact of delivering a diagnosis Unclear trajectory of illness Fear of taking away hope by introducing palliative care Stigma associated with palliative care Limitations within palliative care workforce Palliative Neurology Course Gofton et al. JNS 2018 de Vissera et al. Curr Opin Neurol 2017, 30. Vaughan et al. Curr Treat Options Neurol (2018) 20: 2

29 Timing of Palliative Care The old model Symptoms without diagnosis Treatment by a neurologist progressive symptoms, disability EOL/palliativ e care diagnosis No more therapies death

30 Timing of Palliative Care The newer model Symptoms without diagnosis Therapies with curative intent Palliative Care Bereavement support diagnosis death Disease progression

31 Timing of Palliative Care Variable need for a palliative approach to care throughout disease trajectory Vaughan et al. Curr Treat Options Neurol (2018) 20: 2

32 Timing of Palliative Care Creutzfeldt. Neurol Clin Pract 2016;6:40 48

33 Timing of Palliative Care Variability in timing of discussions pertaining to end of life care Gofton et al. J Neuro-Onc 2012.

34 Timing of Palliative Care Variability in timing of discussions regarding code status Markovic et al. CJNS. In Press.

35 Timing of Palliative Care Dayal et al. CJNS 2017.

36 Timing of Palliative Care Markovic et al. CJNS. In Press.

37 Timing of Palliative Care Minimal data examines palliative care in the neurosciences prior to the last 6 months of life (reference my article) We are missing the boat Many lost opportunities for potential intervention Providing a diagnosis and prognosis with compassion Setting and updating goals of care Advance care planning Complex symptom management Caregiver assessment and support Addressing common social, emotional and spiritual issues Referring to hospice or specialist palliative care services Gofton et al. CJNS Dallara et al. J Child Neurol. 2014, Vol. 29(12)

38 Early Palliative Care in Neurology Early integration of palliative care Improves symptom management improves patient and family satisfaction Palliative care input may improve symptoms and overall quality of life ALS, MS, PD, MSA, PSP Palliative Neurology Course Olivera et al. Eur J Neurol 2016, 23: 30 38

39 Neuropalliative Care Needs To address the challenges specific to neurological illness Frequent communication impairment Frequent loss of decision making capacity Frequent loss of personhood Frequent behavioral problems Heavy caregiver burden

40 Bouca-Machado et al. Mov Dis Palliative Neurology Course

41 Neuro- Palliative Care Tool Box Robinson et al. Mayo Clin Proc 2017

42 Creutzfeldt. Neurol Clin Pract 2016;6:40 48

43 When to refer? Referral patterns remain highly variable American Stroke Association has endorsed an integrated approach between neurology and palliative care services based on personal needs, not on prognosis or disease stage All patients may benefit from a palliative approach to care throughout disease trajectory Referral to specialized palliative care services in complex cases in which the treating physician requires additional support Bouca-Machado et al. Mov Disord, 2018

44 When to refer? Complex needs may include: Complex end-of-life care spiritual concerns distressing psychological issues lack of caregiver or need for additional caregiver support difficult to control physical symptoms Boersma et al. Neurology 83, 2014

45 Creutzfeldt. Neurol Clin Pract 2016;6:40 48

46 Creutzfeldt. Neurol Clin Pract 2016;6:40 48

47 Creutzfeldt. Neurol Clin Pract 2016;6:40 48

48 Conclusion The combination of a palliative approach to care and specialised palliative care services is especially suited to neurology and neurosurgery Palliative and neurological needs frequently co-exist Shared models of care will be beneficial Need to focus on enhanced symptom management, improved ACP, better prognostication

49 Conclusion Neurologists need to understand and integrate palliative care Palliative care specilaists need to understand and integrate neurology Further research is needed to identify When to refer to speciliased services How best to integrate a palliative approach to care

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