a palliative approach and neurosurgerycongress.cnsfederation.org/course-notes/2018... · nejm...

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


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


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


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


Our Speakers

• Dr. Jeff Hall

– Assistant professor, McGill University

– Neurosurgeon


Palliative care in chronic

and progressive

neurological disease –

What is the evidence? June 25, 2018


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


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


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


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


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.


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.

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





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




• 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


Neuro-

Palliative

Care


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


• 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 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


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


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


Lancet Editorial. July 2017


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




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



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



• The “newer model”

Symptoms without

diagnosis

diagnosis

Therapies with curative intent

Palliative Care Bereavement support

death

Disease progression


Timing of Palliative Care Variable need for a palliative approach to care throughout

disease trajectory




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


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



Markovic et al. CJNS. In Press.

• Variability in timing of discussions regarding code status



Dayal et al. CJNS 2017.



Markovic et al. CJNS. In Press.


• 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


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


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


Bouca-Machado et al. Mov Dis. 2018


Neuro-

Palliative

Care Tool

Box

Robinson et al. Mayo Clin Proc 2017

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


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


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


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


a palliative approach and neurosurgerycongress.cnsfederation.org/course-notes/2018... · nejm...

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