The hardest thing we have ever done - Palliative Care Australia

• for the terminally ill person who is unable to remain at home due to their particular
circumstances, there is still a financial burden to the family in meeting the cost of
accommodation and travel as well as child care and other services
• patients in acute care settings are not referred to palliative care services due to
ignorance or reluctance to refer, and therefore suffer more symptoms such as pain,
vomiting, constipation etc. and some even die in agony – drugs are given only on
demand whereas in palliative care every effort is made to have pain and other symptoms
managed and where possible absent
• while community-based services have a social worker or a dedicated bereavement care
worker attached to the team, in the acute care settings, the social workers are unable to
provide ongoing support and follow-up to the bereaved family.
People with neurodegenerative conditions
People with Motor Neurone Disease (MND) often fail to access services due to insufficient
awareness of potential need, failure to access effective case management, lack of regional
funding and prolonged waiting time for access to programs. These issues may be exacerbated
by the small size and dispersion of client group, variability in rate of progression and lack of
MND specific knowledge among care providers. As in other areas of management in MND,
provision of responsive respite care involves informed and creative case management. The
case manager must have a general understanding of the disease process, the ability to
negotiate with the client regarding individual need and a comprehensive knowledge of
potential funding options. Even at entry into the system of care provision, people with MND
have the potential to enter the high special needs category within a relatively short space
of time.
There is a need for a protocol for consistent delivery of care services for people with MND.
This includes increased support at the time of diagnosis and early access to and review by a
multi-disciplinary team. Integration of services necessary to support the complex and rapidly
changing needs of people with MND could be achieved by an effective system of care
management. Particular attention should be given to the provision of greater access to
counseling, physiotherapy and respite services and early referral to rehabilitation and aged
care teams with later transfer to palliative services.
Further, the MND Association recommends increased access to home care and other HACC
services and also timely access to home modifications and to equipment and aids through
PADP or through increased funding to the MND Association to continue service provision in
this area. Early referral to the MND Association for support and assistance with access to
services and equipment is vital to maintain the quality of life.
58 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004