Palliative care provision in motor neurone disease: A survey of multidisciplinary healthcare providers

Introduction

Motor neurone disease (MND) is a progressive neurological condition characterised by significant physical and psychological symptom burden, functional decline, caregiver stress, and limited life expectancy. According to the World Health Organization (WHO), palliative care (PC) aims to “improve the quality of life of patients and their families facing life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.” ¹ Although evidence regarding the optimal delivery and timing of PC for MND is limited, there is broad consensus that PC is beneficial for both patients and caregivers.^2–4

In Victoria, Australia, three major healthcare networks host Progressive Neurological Disease Clinics for patients with MND. These clinics are staffed by multidisciplinary care teams (MDCTs), including medical specialists (neurology, respiratory), nursing, allied health professionals (physiotherapy, occupational therapy, dietetics, speech pathology) and specialist PC providers.

PC services in Victoria include hospital-based consultancy services supporting primary teams; inpatient PC units staffed by specialist PC clinicians; community-based PC services, largely nurse-led multidisciplinary teams providing home-based support; and outpatient PC services, delivered through stand-alone clinics or embedded within other medical specialties. Two of Victoria’s Progressive Neurological Disease Clinics have embedded PC clinicians as part of routine care. Patients also receive additional support from MND Victoria Advisors (MNDVAs), who provide information, advocacy, care coordination, and training for patients, families and health professionals. MND Victoria more broadly offers services to people with MND, their families, and community and healthcare workers. ⁵

This study aimed to explore how MDCT members perceive the role of PC in MND care and to understand when they believe referral is appropriate. Findings may help support timely PC referral and enhance patient and caregiver satisfaction with PC services.

Methods

This survey study was conducted at a tertiary academic healthcare service supporting Melbourne’s outer northern region. In August 2023, approximately 25 paper questionnaires were distributed to MDCT members at the health service’s Progressive Neurological Disease Clinic. The questionnaire contained eight multiple-choice and three open-ended questions exploring: experience with PC services, perceptions of PC roles and views on referral timing. Follow-up reminders were issued three times over 8 weeks.

Quantitative data were analysed descriptively. Free-text qualitative responses were analysed independently by the authors to identify emergent themes, which were then compared for consistency. The Northern Health Research Development and Governance Unit approved the study.

Results

A total of 23 responses were received (estimated response rate 92%). Roles of respondents are summarised in Table 1.

Table 1.

Roles of respondents and ranking of needs that would trigger referral to specialist PC services.

Role	Number
Doctor	7
Nursing	2
Allied health staff
Physiotherapist	1
Occupational therapist	4
Speech Pathologist	1
Dietitian	4
MNDVAs	4
Total	23
Need	% Responses
Symptom management	100
Complex symptom management	57.1
All symptoms	42.9
End-of-life care	100
Information/understanding/decision-making	95.2
Advance care planning	85.7
Carer support	85.7
Psychological support	85.7
Request for voluntary assisted dying	66.7
Functional needs assessment and assistance	57.1

MNDVAs: motor neurone disease Victoria advisors.

Experience and familiarity with PC

Most respondents (87.0%) had previous experience with PC services—60.9% in outpatient settings, 65.2% in community-based services, 60.9% in inpatient units and 56.5% with hospital consultancy teams. Approximately 60% had experience with multiple PC service types.

Regarding familiarity with PC, 26.1% felt “extremely familiar,” 61.9% “somewhat familiar,” and 13.0% were “neutral” or “not familiar.” Most (69.6%) knew how to refer to PC services.

Timing and triggers for referral

All respondents agreed that MND patients should be referred to PC. Most (56.5%) believed referral should consider both disease trajectory and patient needs. A further 30.4% prioritised patient needs, while 13.1% emphasised disease trajectory alone.

Among those favouring trajectory-based referral, 42.9% identified key milestones—such as decisions around ventilation or enteral feeding—as appropriate referral points. An additional 30.4% recommended referral within 6 months of diagnosis.

Respondents rated triggers for referral as shown in Table 1. All agreed that symptom management and end-of-life care warranted referral. However, 57.1% felt referral should be reserved for complex, rather than routine, symptom issues. Other highly rated needs (⩾75%) included:

• information provision, illness understanding and decision-making support (95.2%);

• advance care planning (85.7%);

• carer support (85.7%);

• psychological support (85.7%).

Lower-rated triggers included voluntary assisted dying requests (66.7%) and functional needs assessment (57.1%).

PC role within the MDCT and areas of added value

Using ⩾75% agreement as a threshold, we identified which PC-related needs were addressed by non-PC MDCT members:

• Symptom management: nursing (95.7%), medical specialists (91.3%), allied health (87.0%).

• Functional assessment: allied health only (95.7%).

• Information provision and decision-making support: medical specialists and MNDVAs (87.0%), nursing (82.6%).

• Advance care planning: ACP officer only (87.0%).

• Carer support: nursing (82.6%), allied health and MNDVAs (78.3%).

• Psychological support: psychology services only (95.7%).

• End-of-life care: medical specialists only (87.0%).

Respondents identified areas where specialist PC services most effectively add value:

• Symptom management and end-of-life care (95.5%).

• Information provision and decision-making support (72.7%).

Additional but lower-rated value areas were carer support (63.6%), advance care planning (59.1%) and psychological support (54.5%).

Perceptions of PC

Approximately 65.2% of respondents expressed concern that patients may associate PC solely with imminent death. Free-text responses highlighted this stigma, noting that PC can be confronting for newly diagnosed patients. However, respondents also noted that patients are generally receptive when PC is introduced with sensitive, clear communication.

A dominant theme was PC as “support”—for patients, families and the care team. PC was valued for its roles in symptom management, holistic care, psychological support, emotional support and end-of-life planning. Several respondents emphasised the importance of longitudinal PC involvement throughout the course of MND.

Discussion

Findings align with guidelines from the European Federation of Neurological Societies and the UK’s National Institute for Health and Care Excellence, which support integrated PC for MND.^6,7 Several themes emerged.

First, PC was most strongly associated with symptom management, decision-making support and end-of-life care. Psychological support, carer support and advance care planning were also valued, though to a lesser degree.

Second, many PC-related needs are already addressed by MDCT members, reflecting a tiered model of PC similar to that outlined in the Lancet Oncology Commission—where primary clinicians manage routine PC needs, and specialist PC teams provide input for complex cases. ⁸ Our findings suggest the MDCT functions similarly, with specialist PC offering value-add, particularly for complex symptom management and end-of-life care.

Third, although some misconceptions about PC persist, these can be mitigated through early, clear communication and ongoing education.

These findings reinforce the importance of multidisciplinary care in MND, which is associated with improved survival, and support a shared-care model where PC responsibilities are distributed across the care continuum. ⁹

Conclusion

This survey shows that PC is viewed as a vital element of MND care that should be integrated throughout the disease trajectory, tailored to the needs of each patient and caregiver. The responses suggest that MDCT members can and do already address many PC needs, and thus should be empowered to do so. This underscores the need to strengthen primary and secondary PC provision through targeted education and training. Specialist PC teams can and should become involved when needs escalate in complexity or when additional support is required, with clear referral pathways. Implementing timely, resource-sensitive referral strategies—matched to local capacity—may improve care quality and enhance patient and caregiver satisfaction. ¹⁰

Jaclyn Yoong Northern Health, Epping, VIC, Australia University of Melbourne, Parkville, VIC, Australia Monash Health, Monash University, Clayton, VIC, Australia Marita Rees Northern Health, Epping, VIC, Australia Austin Health, Heidelberg, VIC, Australia