Volume 19, Issue S5 e060197
DEMENTIA CARE AND PSYCHOSOCIAL FACTORS
Free Access

Improving collaboration between palliative care and neurology: Focus on patient, family & healthcare provider experience

Patrick Salwierz

Corresponding Author

Patrick Salwierz

Institute of Medical Science, University of Toronto, Toronto, ON, Canada

Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada

Correspondence

Patrick Salwierz, Institute of Medical Science, University of Toronto, Toronto, ON, Canada.

Email: [email protected]

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Vishaal Sumra

Vishaal Sumra

Institute of Medical Science, University of Toronto, Toronto, ON, Canada

Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada

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Melisa Gumus

Melisa Gumus

University of Toronto, Toronto, ON, Canada

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Warren Lewin

Warren Lewin

University of Toronto, Toronto, ON, Canada

University Health Network, Toronto, ON, Canada

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Maria Martinez

Maria Martinez

Memory Clinic, University Health Network, Toronto, ON, Canada

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Archna Patel

Archna Patel

University Health Network, Toronto, ON, Canada

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Cristina Salvo

Cristina Salvo

Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada

Division of Neurology, Krembil Neuroscience Centre, Toronto Western Hospital, University Health Network Memory Clinic, Toronto, ON, Canada

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Emily Swinkin

Emily Swinkin

University Health Network, Toronto, ON, Canada

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Carmela Tartaglia

Carmela Tartaglia

Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada

Division of Neurology, Krembil Neuroscience Centre, Toronto Western Hospital, University Health Network Memory Clinic, Toronto, ON, Canada

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David F. Tang-Wai

David F. Tang-Wai

Krembil Brain Institute, Toronto, ON, Canada

Department of Medicine, University of Toronto, Toronto, ON, Canada

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Melissa Li

Melissa Li

University of Toronto, Toronto, ON, Canada

University Health Network, Toronto, ON, Canada

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First published: 16 June 2023

Abstract

Background

The prevalence of neurodegenerative diseases is increasing as the population ages. As these diseases are often incurable, progressive, and associated with significant loss of ability to communicate over time, it is paramount that advanced care planning (ACP) take place early in the disease trajectory to facilitate goal-concordant care. There is increasing recognition of the barriers for neurologists to facilitate ACP and end-of-life care. Palliative care is a medical speciality that focuses on improving quality of life for patients living with serious illness, including helping with healthcare planning and decision-making that align with the individual’s values and goals. However, there is a paucity of literature on how to best integrate palliative care or which elements of an integrated neuro-palliative approach are the most beneficial to patients, caregivers, and clinicians.

Our study aims to assess the experience of an embedded pilot clinic between Neurology and Palliative Care at the University Health Network (UHN) Memory Clinic on patients/caregivers and health care practitioners.

Methods

We aim to recruit 60 participants, including patients and family members, seen at the UHN Supportive Care Memory Clinic, and who screen positive for three of seven triggers for palliative care involvement for neurological patients as proposed by the National End of Life Care Programme of National Health Service in England. ACP conversations will follow an evidence-based semi-structured conversation guide. The impact of the clinic will be evaluated using patient, caregiver, and both Neurology and Palliative Care team member experience surveys. Secondary measures will include the percentage change in ACP and Power of Attorney documentation pre and post initiation of the clinic.

Results

From clinic inception in June 2020, 19 patients were seen (all-virtual). Due to the COVID-19 pandemic, the clinic was paused for the majority of 2021. Our study received UHN Quality Improvement approval in March 2021, and we began enrolling patients into our study in November 2021; enrolment is ongoing.

Conclusions

The results of this study will serve as a guide for quality improvement of our existing clinic and can inform future implementation of scalable integrated models of care between palliative care and neurology, and for other subspecialties and centres.