Siobhán Fox PhD (Project Co-ordinator) & Dr Suzanne Timmons (PI)
Centre for Gerontology and Rehabilitation
School of Medicine, University College Cork

Parkinson’s disease (PD) is a progressive, incurable,
neurodegenerative disease with complex symptom management
needs, ideally suited to a palliative care approach.1

UK and NI research highlights unmet palliative care needs in PD:
◦ Previous research with family carers highlighted poor information and ad hoc
service delivery,2 and interviews with healthcare workers found that many are
unsure if palliative care is appropriate in PD.3
◦ Very few patients with PD dying in hospital have documented end-of-life care
discussions (2.7%), or are referred to specialist palliative care (13.6%).4

Palliative care needs are under-researched in Ireland, and indeed
worldwide. This research project aims to address that gap.

Aim:
◦ To investigate the knowledge, attitudes, and prior training of Irish
healthcare workers (HCW) in palliative care in advanced PD.

Methods:
◦ Survey-based design
◦ Distributed via post and email to HCWs across Ireland

Participants:
◦ N = 306 (average response rate = 33%)
◦ Disciplines were:

Key results:
◦ Many HCWs (41%) reduced palliative care to care in the final days or hours
of life.
◦ HCWs recognised that people with PD and their families have palliative care
needs, but 76% felt these needs are not being met
◦ Of the medical consultants surveyed (n=29), half had referred no patient
with Parkinson’s disease to SPC in the previous 6 months.
◦ Few HCWs were always informed of a patient with PD’s death (33%) or
cause of death (19%)
◦ Only 55% had training in palliative care, and 8% had training in palliative
care for PD

Conclusion: There is a need for further education to empower HCW to be
more confident and better equipped in dealing with the palliative care needs
of people with PD and their families.

Aim:
◦ To explore healthcare worker’s views on palliative care needs of people
with Parkinson’s disease, through a qualitative analysis

Method:
◦ In-depth interviews analysed using Thematic Analysis

Participants:
◦ 30 healthcare workers from neurology, geriatrics, and palliative
specialities
◦ Disciplines were:

Results (Themes):
◦ Definition of palliative care
 “My first question to you is what are
you calling palliative care? That’s my
thing is everybody calls it something
different.”
 “Care in the last few hours” or
“preparation for death”
◦ When to deliver palliative care
 “so perhaps it should be something that
we have for the PD patient at diagnosis
so we say now this is a whole lot of
information, some of it is relevant to you
now, some of it isn’t, you know about
exercise diet, driving, planning ahead
for the future and maybe about pc.”
◦ General or Specialist Palliative
Care (SPC)
 “but what they should be able to do is
cross seamlessly between those settings,
so they should be able to access the
acute setting if they need it, they should
certainly be able to access generalist
palliative care at any time, and if their
needs are complex they should have a
mechanism to access SPC.”
◦ Barriers to palliative care in PD
 “I think that if [HCWs] haven’t trained
and had a lot of experience in PD, a lot
of people find it very difficult. You
know?”
 “I think palliative care in general
probably has that stigma attached to it
that it’s just for cancer patients who are
about to die.”

Aim:

Method:

Participants:

Preliminary results:
◦ To explore care needs in PD from the views of people with PD and
their families/carers
◦ In-depth interviews analysed using Thematic Analysis
◦ Initial aim was 15 patients and 15 carers
◦ So far have interviewed 19 patients and 11 carers
◦ Patients and carers often haven’t heard of palliative care; those who
have, often associate it with cancer care.
◦ When the role of palliative care in symptom management is
explained, most were interested in receiving further information

Our next step is to develop short national guidelines for the
assessment of management of palliative care needs in PD
◦ ‘Softer’ guidance document versus ‘harder’ guidelines

The guidelines are being developed in accordance with the
NCEC guideline development manual

We have an advisory group representing relevant
stakeholders, e.g.
◦ NCP- Neurology and Older Persons; RCPI; IPMC; IAPC; IGS; IICN;
AIGNA; IASW; ISCP; The PAI; The Carer’s Association.

Topics will include:
◦ Physical symptom management; Holistic care; Recognising EoL
phase; Advance care planning; Ethical issues; Bereavement care

For HCWs
◦ Online module to be developed by AbbVie

For patients and carers
◦ Plain language information leaflets


This project is supported by:
The project steering group
◦ Prof George Kernohan
◦ Dr Sean O’Sullivan
◦ Dr Ciara Lynch
◦ Dr Tony O’Brien
◦ Ms Marie Lynch
◦ Ms Alison Cashel


The advisory group for the development of the guidelines
The Irish Hospice Foundation who provided funding
1.
Joint HSE and IHF Report of the Extending Access Study. Palliative Care for All:
Integrating Palliative Care into Disease Management Frameworks. 2008.
2.
National Institute for Health and Clinical Excellence. Parkinson’s Disease: Diagnosis
and management in primary and secondary care. 2006.
3.
Waldron M, Kernohan WG, Hasson F, Foster S, Cochrane B, Payne C. Allied health
professional's views on palliative care for people with advanced Parkinson's
disease. International Journal of Therapy & Rehabilitation 2011;18:48-58.
4.
McLaughlin D, Hasson F, George Kernohan W, et al. Living and coping with
Parkinson's disease: Perceptions of informal carers. Palliative Medicine
2011;25:177-182.