What does Palliative Care have to offer a person with motor neurone disease? Anne Morgan

1. MMOOTTOORR NNEEUURROONNEE
DDIISSEEAASSEE
Anne Morgan
Hospice New Zealand
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2. Motor Neurone Disease is an uncommon degenerative
disorder of motor neurones, which leads to
progressive paralysis of cranial and skeletal muscles.
1. The onset is insidious.
2. First symptoms include stumbling, weakened grip,
hoarse voice, cramp and muscle wasting.
3. The condition is incurable and leads to death within a
few years of diagnosis, generally 1-5 years.
4. Death is most commonly due to respiratory muscle
weakness and ventilatory failure.
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3. MND is palliative from diagnosis
 Feared and often long-awaited diagnosis
 Consistency and honesty is vital – within a
“palliative approach”
 Physical symptoms
 Psychological, spiritual and existential
issues – BIG STUFF!!
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4. Limited Treatment Options
Clinical tests have been focused on finding treatments that
slow disease progression, resulting in longer survival and
maintaining quality of life measures. No single agent has been
found which substantially improves these end points.
 Riluzole (Rilutek); prolonged survival by 3 months but did not result in significant
improvements in muscle strength. Seems to increase time spent in early stages.
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5. Aim of Palliative Care
for people with MND
 Enable patient, family and whānau to live as full
a life as possible by:
 providing a secure and reliable network of support
 using the multidisciplinary team to ensure that the
best use is made of what power and function the
person has
 actively attending to symptom control (don’t assume
difficulties and problems are inevitable)
 sensitively prepare for the future by encouraging
some form of advance care planning
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6. Palliative Care – when?
 Palliation in its broadest sense must be involved
from diagnosis. The illness is characterised by a
series of losses with the accompanying issues of
grief and bereavement.
 Hospital Palliative care team
 Hospice and Community services
- provide homecare and support
 In patient care to:
- provide respite, assessment, and
opportunities for monitoring and review of
symptom management.
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7. Advance Care Planning
 Most valuable when completed early in the
presence of fatal chronic illness
 In an attempt to avoid commonplace errors
and unwarranted suffering LYNN 2003
 Not just about trying to ensure a patient’s wishes are
upheld when they can no longer advocate for
themselves BUT…
 Also to facilitate/ encourage/ validate discussions
about patient preferences at a time when they can
calmly and in conjunction with loved ones, talk about
what is important to them and what they hope for in
the future
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8. Decision Making
 Early on….
 Who should be involved in your care?
 How can you be best supported?
 It’s about respecting individual choice
 PEG feeding
 Assisted ventilation
 Active and supportive treatments
 Preferred place of care
 Preferred place of death
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9. Relief of suffering
 Physical
 Dysarthria
 Pain
 Drooling
 Dyspnoea
 Psychological needs
 Emotional needs
 Social needs
 Nutrition
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10. A message of hope
 There is no doubt that living with MND is
challenging
 Scientific technology is racing ahead, there
is hope now more than ever that better
treatments will be found
 MND may rob a person of their physical
body, but not their soul and they continue to
be a valued member of society
 Emphasis on maintaining the person’s
autonomy
 Supports are available and the patient and
their family need information and guidance
in obtaining and using them
 Keeping lines of communication open is
important
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11. Last days of life
 Anticipate crisis
 Communicate well
 Provide support
 Control symptoms - midazolam, morphine
and hyoscine available
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12. Impact on Professionals
 MND frequently arouses strong emotional
and ethical challenges:
 attitudes to issues such as disability, quality of
life, euthanasia and measures taken to
prolong life
 frustration with the seeming inability of
individuals or the system to provide solutions
to complex problems.
 Strong teamwork is necessary to provide
support and encouragement.
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13. Resources
 http://www.mndanz.org.nz
 A Problem Solving Approach for
Health Professionals (flipchart)
A MacLennan
New Zealand information
downloadable from the website
 Palliative Care in ALS
Edited by David Oliver,
Gian Domenico Borasio, Declan Walsh
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