Date of Award

5-5-2019

Document Type

Thesis

Publisher

Edith Cowan University

Degree Name

Doctor of Philosophy

School

School of Nursing and Midwifery

First Supervisor

Associate Professor Sara Bayes

Second Supervisor

Professor Moira Sim

Third Supervisor

Dr Anne Wilkinson

Abstract

Introduction

Motor neurone disease (MND) is a degenerative disease that adversely affects the nervous system and muscular control. Eventually respiratory muscles weaken, causing breathing, communication and swallowing difficulties, and ultimately, respiratory failure and death. Improved quality of life and potentially a short extension of life can be provided with non-invasive ventilation (NIV), which is offered to people with MND when symptoms of respiratory distress become evident.

It is recommended that end-of-life communication, encompassing the benefits and burdens of symptom-relieving interventions (NIV and percutaneous gastrostomy tube to assist with nutrition), NIV withdrawal (proposed when continued use is considered futile) and other respiratory distress-relieving interventions (e.g., opioids), is initiated either before respiratory symptoms emerge or at that time. Little is known, however, about whether, when and how this communication occurs.

Methods

This qualitative research sought to address this gap in knowledge by determining the content and timing of end-of-life options clinicians communicate to people with MND and their families. Nineteen clinician participants and six families, all experienced with MND, were interviewed. Clinicians’ accounts of their communication were compared to bereaved families’ recollections of communication by clinicians. A framework incorporating patient-centred care principles and evidence-based medicine was used to link clinicians’ communication to the most recent MND guideline recommendations. The data collected were coded and categorised manually for each participant transcript and again using NVivo 10 software. Trustworthiness was established through independent coding of randomly selected participant interviews by one of the candidate’s supervisors. Symbolic interactionism and interpretive description provided the theoretical lens and methodology, respectively, through which the data were interpreted.

Findings

Despite the existence of comprehensive evidence-based guidelines reflecting international consensus, this research found some clinicians were unaware of the recommended timing and content of end-of-life communication, some chose to depart from or adapt the recommendations and some found the recommendations too difficult to implement. Clinicians stated they had insufficient time to communicate and reiterate the benefits and burdens of care options to ensure understanding. The recommendation to refer people with MND to palliative care soon after diagnosis was reported to happen infrequently. Clinicians stated that they felt discussion recommending early palliative care referral was confrontational for people with MND and their families; family participants confirmed this view.

Recommendations

Despite their ethos of patient-centred care, clinicians were concerned that early end-of-life communication would take away any hope the person with MND and their family may have. Consequently, many of the family participants appeared unprepared for the consequences of NIV, not having understood the potential of NIV withdrawal, with several turning to the Internet for answers. Compounding confusion was the disjointed nature of the care provided to people with MND often involving several health care providers.

This research recommends the establishment of a progressive interactive timeline, incorporating a case manager and reducing the number of external care providers particularly in the terminal phase of the disease.

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