Neurology (Palliative Care)

Information

Holistic management of neurological illness may require a palliative approach at any disease stage, not just the end of life. However, there are certain indicators that would suggest a change in emphasis of focus of care from extending life at all costs to prioritising comfort, is appropriate.

Progressive decline in physical or cognitive function
Increasing difficulty with communication and swallowing
Recurrent aspiration pneumonia/breathlessness/respiratory failure
Persistent paralysis after stroke
Complex symptoms including pain
Multiple admissions
Weight loss

It is important to initiate planning ahead (Anticipatory Care Planning) conversations early in the disease trajectory, and especially before communication or capacity becomes compromised. Focus on what matters to the individual and who they would wish to speak for them if they were unable to communicate their wishes. Planning is an evolving process that can be added to as things change. Ensure the Key Information Summary is updated with individual’s current preferences.

https://www.spict.org.uk/wp-content/uploads/2023/10/REDMAP-cards-for-staff-September-2023.pdf

https://ihub.scot/project-toolkits/future-care-planning-toolkit/future-care-planning-toolkit opens a new window

https://www.nhsinform.scot/fcp opens a new window

Having Realistic Conversations https://learn.nes.nhs.scot/60442 opens a new window

Palliative care is more often a co-production of care between the primary care team and specialist neurology team. A palliative approach is often misunderstood by patients and families as being only about end of life so it is important to emphasise the potential benefits of planning ahead and good symptom control. Good palliative care helps people live longer as well as better which is often a surprising fact to hear!

Where complex issues are presenting challenges, referral to specialist palliative care may be helpful and “referral” will result in a joint management plan rather than a handing over of care.

Who to refer:

In addition to the indicators listed above, consider the following

“I wouldn’t be surprised if this person died in the next year”
Complex symptoms or psychosocial issues which prove difficult to manage

Who not to refer:

Patients who do not accept a palliative approach to their illness (although there may still be benefit in discussion with specialist palliative care where the issues are complex and indicators of potential benefit from ACP are present.)
For patients with an existing neurology team, advice should be sought from their neurologist or CNS in the first instance

MS specialist nursing team 0131 312 0720

PD specialist nursing team 0131 465 9156

Parkinsons.NurseSpec@nhslothian.scot.nhs.uk opens a new window

MNDservice@nhslothian.scot.nhs.uk opens a new window

HuntingtonsDisease.aspx opens a new window