A Palliative Approach
to Care in Neurology
and Neurosurgery June 25, 2018
Palliative Neurology Course
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
Palliative Neurology Course
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
Palliative Neurology Course
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
Palliative Neurology Course
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 2013-2015), mentored by Dr. Janis Miyasaki
Palliative Neurology Course
Our Speakers
• Dr. Jeff Hall
– Assistant professor, McGill University
– Neurosurgeon
Palliative Neurology Course
Palliative care in chronic
and progressive
neurological disease –
What is the evidence? June 25, 2018
Palliative Neurology Course
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
Palliative Neurology Course
A Palliative Approach to Care
• Includes:
– Advance care planning
– Caregiver support
– Intensive management of distressing medical and psychiatric symptoms
– Throughout the illness trajectory
Vaughan et al. Curr Treat Options Neurol (2018) 20: 2
Creutzfeldt et al. Neurol Clin Pract 2016;6:40–48
Palliative Neurology Course
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
Creutzfeldt et al. Neurol Clin Pract 2016;6:40–48
What is the Evidence for
Palliative Care? • Palliative care is not solely indicated in the last
days or weeks of life
Lancet Editorial. July 2017
Palliative Neurology Course
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
Developing an Evidence-Based Palliative Care
Curriculum for Specialty Trained Residents
Rabow et al. J Pal Med 2013; 16(12): 1.
Palliative Neurology Course
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
Developing an Evidence-Based Palliative Care
Curriculum for Specialty Trained Residents
Palliative Neurology Course
Rabow et al. J Pal Med 2013; 16(12): 1.
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 2010. NEJM
Developing an Evidence-Based Palliative Care
Curriculum for Specialty Trained Residents
Palliative Neurology Course
Palliative Neurology Course
Temel et al 2010. NEJM
Neuropalliative Care
• 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
Palliative Neurology Course
Vaughan et al. Curr Treat Options Neurol (2018) 20: 2
Neuropalliative Care
• 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
Palliative Neurology Course
Neuro-
Palliative
Care
Palliative Neurology Course
Gofton et al. J Neuro-Onc. 2012.
• High symptom burden in patient with cerebral tumours or intracranial metastases
Neuropalliative Care Palliative Neurology Course
• People with MSA have significant cumulative symptom burden Dayal et al. CJNS 2017.
Neuropalliative Care Palliative Neurology Course
Dayal et al. CJNS 2017.
• Multiple discussions occur along the disease trajectory
Neuropalliative Care
• 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
Palliative Neurology Course
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
• Provide health/social care professionals with information about role of palliative care for patients with neurological diseases
Palliative Neurology Course
Lancet Editorial. July 2017 Oliver et al. Eur J Neurol.2016:23.
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
– Need for further development of disease-specific guidelines
Oliver et al. Lancet Editorial Nov 2017
Palliative Neurology Course
Oliver et al. Eur J Neurol.2016:23.
Dallara et al . J Child Neurol 2014, Vol. 29(12) 1728-1738
Challenges in Palliative
Neurosciences • Unique challenges
– Frequent communication impairment
– Frequent loss of decision making capacity
– Frequent loss of personhood
– Frequent behavioral problems
• Poor evidence base to support best
interventions Gofton et al. JNS 2018
Palliative Neurology Course
Lancet Editorial. July 2017
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
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
de Vissera et al. Curr Opin Neurol 2017, 30.
Gofton et al. JNS 2018
Palliative Neurology Course
Vaughan et al. Curr Treat Options Neurol (2018) 20: 2
Timing of Palliative Care
• The “old model”
Symptoms without
diagnosis
Treatment by a neurologist – progressive symptoms,
disability EOL/palliative care
diagnosis No more therapies
death
Palliative Neurology Course
Timing of Palliative Care
• The “newer model”
Symptoms without
diagnosis
diagnosis
Therapies with curative intent
Palliative Care Bereavement support
death
Disease progression
Palliative Neurology Course
Timing of Palliative Care Variable need for a palliative approach to care throughout
disease trajectory
Palliative Neurology Course
Vaughan et al. Curr Treat Options Neurol (2018) 20: 2
Timing of Palliative Care
Creutzfeldt. Neurol Clin Pract 2016;6:40–48
Palliative Neurology Course
Timing of Palliative Care Palliative Neurology Course
Gofton et al. J Neuro-Onc 2012.
• Variability in timing of discussions pertaining to end of life care
Palliative Neurology Course
Timing of Palliative Care
Markovic et al. CJNS. In Press.
• Variability in timing of discussions regarding code status
Palliative Neurology Course
Timing of Palliative Care
Dayal et al. CJNS 2017.
Palliative Neurology Course
Timing of Palliative Care
Markovic et al. CJNS. In Press.
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
Dallara et al. J Child Neurol. 2014, Vol. 29(12) 1728-1738
Palliative Neurology Course
Gofton et al. CJNS 2009.
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
Olivera et al. Eur J Neurol 2016, 23: 30–38
Palliative Neurology Course
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
Palliative Neurology Course
Bouca-Machado et al. Mov Dis. 2018
Palliative Neurology Course
Neuro-
Palliative
Care Tool
Box
Robinson et al. Mayo Clin Proc 2017
Palliative Neurology Course
Creutzfeldt. Neurol Clin Pract 2016;6:40–48
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
Palliative Neurology Course
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
Palliative Neurology Course
Creutzfeldt. Neurol Clin Pract 2016;6:40–48
Palliative Neurology Course
Creutzfeldt. Neurol Clin Pract 2016;6:40–48
Palliative Neurology Course
Creutzfeldt. Neurol Clin Pract 2016;6:40–48
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
Palliative Neurology Course
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
Palliative Neurology Course