Palliative Care in Critical Care Conference 2026
2026-06-02 palliative
Young Adults - Amanda Brain
Talked about families of patients with life limiting illness, particularly those who grew up with this illness, as often being in fight mode, so used to dealing with a lack of service, or having to fight for service, so often told that patient is dying that they develop sense of invincibility.
Young adults with complex neuro-disability often have a non-progressive illness. We are more used in adults to progressive illness.
Dystonic / Dystonia
Talked a lot about dystonia and the problems with that. Things to know about dystonia. It resolves with sleep It gets worse with intention to move It includes gut. You can get dystonic crises and status dystonicus This includes hyperthermic/hypertensive/tachycardic
You can get clonidine patches
Other medicines can be used for dystonia like:
- tetrabenzine
- trihexphenidyl
- chloral hydrate
- daridorexant
Status Dystonicus
Triggers can include:
gut dystonia, so avoid hyoscine, and they do try gut rest in these patients clonidine can help anything to reduce stimulation can help - pain/constipation/noise
Gaba drugs
Remember gabapentin is considered to make anxiety worse whereas pregabalin is licensed for anxiety
Duchenne Muscular Dystrophy
Remember that as well as heart and lung, there are also gut failure issues Patients will get pseudo obstruction/ perforation / etc
When you see someone with DMD remember they will have had loads of steroids So think about iatrogenic adrenal insufficiency
Tracheostomy and ventilation changes a lot for patients with DMD Remember that most adult hospices cannot take someone who is tracheostomy ventilated
Tracheostomy in DMD means a loss of privacy, someone in your room 24/hrs a day
Pre-Bereavement
Victoria Hussey and Louse Russell
These authors presented work on pre-bereavement and focused on the model from Stroebe and Schut. This is the dual process model, using both emotional processing and problem solving
Basically you do both focusing on loss, this is the traditional 'grief work' where you introspect, and you also do the restoration orientated where you focus on what you are doing now (sometimes more critically seen as distraction or denial). Basically you do the grieving as you can, then you emerge for breath, then you go back in, and in and out a you can.
The presenters found that if you do good pre-bereavement means you need less post-bereavement, with opportunity for relationship completion etc.
They also talked about the Schmidt model - 2022
1 - Know what is coming 2 - Spot warning signs early 3 - Build network of support now 4 - Have important conversations - help make memories
They have a system of bereavement care volunteers and butterfly friend volunteers
They have boxes for families,
the children and family decorate the boxes, with stickers pens, bracelets for children and parents
they use the tough stuff journal for kids
they use dough, bouncy balls, jenga
they record videos of noise and machinery of ICU to play to children to warm in advance
They talk about the anne robson trust
Research in Palliative Care
They talk about the importance of public involvement in research impact toolkit and the ppi nihr guidelines
they have a distress protocol for participant distress during research
they talk about mediation training, I'd be interested but maybe I shouldn't be doing this yet: ![https://www.medicalmediation.org.uk/training-courses/42-mediation-skills-for-senior-healthcare-professionals/]