Australian Doctor 11th Oct Issue | Page 40

11 OCTOBER 2024 ausdoc . com . au

Proposed Symptom Management Plan Thursday 23 rd September 2021

UR 7053102 DOB 06 / 11 / 2008

Symptom : Pain

Source : Victorian Paediatric Palliative Care Program 2021 21 Used with permission from the Victorian Paediatric Palliative Care Program

Box 2 . Child and family perspectives

Eliza “ Eliza was born with a rare genetic skin condition , epidermolysis bullosa ( EB ). This began her lifelong battle with excruciating pain that took her breath , and made her whole body tense up , contort and shake for the hours spent in the bathroom while taking baths and wound dressing twice a day .

Eliza was a bright young girl , mature beyond her years and from an early age she could quite easily interact with adults and carry interesting conversations . Eliza was so engaging that she convinced many who met her , to see past the obvious physical appearance of EB into the heart of a delightful , sweet person and extraordinarily courageous young lady . Eliza never questioned ‘ why me ’ and accepted her lot in life and got on with it .”

Parent perspectives “ To parent a child with a debilitating and life-limiting genetic disease makes you question who would be so cruel to inflict such a hideous existence on a sweet and innocent child . We spent our life feeling guilty and sad knowing we ’ ve passed on this terrible recessive gene to her . As parents we became her lifeline , yet we felt so helpless . We had to let go of all our dreams of having a healthy child to nurture and grow with , to experience happy birthdays instead of tears , to see her develop friendships which were few . It just saps your optimism to the point where you feel there is no hope for her in a world with so many expectations to fit in .”

Current management

Step 1 : Paracetamol 500mg QID PRN oral / NG Step 2 : Oxycodone 5mg Q4H PRN oral / NG

If not controlled or requiring more than 3 breakthroughs in

Step 1 : Consider commencing Targin 10mg BD

If not controlled or not tolerating enteral medications

Step 1 : Oxycodone 2.5mg Q1H PRN IV / SC Step 2 : Consider commencing continuous IV / SC infusion oxycodone ( eg . Oxycodone 10mg IV / SC over 24 hours )

If still not controlled

Please call VPPCP for advice

Symptom : Nausea

Current management

Step 1 : Cyclizine 25mg TDS PRN oral / NG / IV / SC Step 2 : Commence regular cyclizine 25mg TDS oral / NG / IV / SC

If not controlled

Step 1 : Levomepromazine 3mg QID PRN oral / NG / IV / SC

If still not controlled or not tolerating enteral medication

Please call VPPCP for advice

Symptom : Seizures

Current management Levetiracetam 250mg BD oral / NG / IV

For breakthrough seizures

Step 1 : Clonazepam 3-4 drops QID PRN buccal

If not controlled or not tolerating enteral medications

Step 1 : Midazolam 2.5-5mg q1h PRN IV / SC Step 2 : Consider commencing continuous IV / SC infusion midazolam ( eg . midazolam 15mg IV / SC over 24 hours )

If still not controlled Please call VPPCP for advice

Page 1 of 2

Sibling perspective “ Eliza ’ s condition was up and down but having only one sibling , with a lifethreatening illness , you don ’ t get to experience that normal sibling partnership that is forged through spending time together and having fun . Eliza was always unwell and spent a lot of time in and out of hospital . It wasn ’ t until the talk I had with Eliza ’ s doctor a few weeks before she passed that I knew this time was different . Losing her was the hardest . Although we never had that normal sister-to-sister relationship due to her condition , we still managed to do normal sibling things . After she passed , it felt a lot quieter and that something was missing that you just can ’ t describe .”

The role of palliative care and the GP “ Palliative care for our family was a game-changer , Eliza was finally put onto an adequate pain management regime which made bath time so much more tolerable for both Eliza , us and her carers .

“ During the last few years of Eliza ’ s life , it was clear she required increased pain relief , but at times she was reluctant to have new medications introduced . Given Eliza was almost 18 years old when she passed , her wishes mattered to the palliative care team . It was difficult as a parent to sit back and allow Eliza to make these decisions when we knew she ’ d be more comfortable with changes to her medications .

“ Palliative care were open to us finally being able to ask the hard questions and receive a straight-up answer even if it wasn ’ t the one we were looking for . Palliative care included the whole family unit and even reached out to Eliza ’ s support workers with grief counselling and bereavement support . Palliative care were the backbone of our family during the last four months of Eliza ’ s life , they supported us by giving us the strength , confidence and tools to support our very sick daughter at home .

“ We want GPs to know that families are in good care with the palliative care team but still require an open line of communication between the two . Families with critically ill children are time poor and highly stressed and often need quick access to their trusty local GP . Sometimes it may be for a prescription and other times it might be just to talk to someone who understands the family and the specific medical needs of their child . GPs also play a crucial role during the grieving process and beyond . GPs along with the palliative care and other medical teams form part of the family journey , and while many families wish to put it behind them and move on , a lot of families may like to nurture that connection that has been built over such a significant time .”

This account was written by Eliza ’ s parents and sister , who have provided permission for publication .

Symptom : Agitation / anxiety / distress

Proposed management

Step 1 : Clonazepam 3-4 drops QID PRN buccal

If not controlled or not tolerating enteral medications

Step 1 : Midazolam 2mg q1h PRN IV / SC Step 2 : Consider commencing continuous IV / SC infusion midazolam ( eg . midazolam 10mg IV / SC over 24 hours )

If still not controlled Please call VPPCP for advice

SUBCUTANEOUS ( SC ) MEDICATION ADMINISTRATION GUIDELINES Refer to RCH Clinical Practice Guidelines : Subcutaneous catheter devices management of insuflon and BD SafTIntima devices ) and your organisation ’ s guidelines regarding SC administration . Paediatric subcutaneous medication ( via Saf-T-Intima ) administration management summary :

- A BD Saf-T-Intima™ can be attached to a syringe driver for continuous infusions of prescribed medications either on an Alaris Asena GH MK III ( inpatient use ) or a NikiT 34 ( for either inpatient or outpatient use ). NB Niki-T pumps calculate the exact rate of infusion automatically to administer infusion over 24 hours . This rate cannot be changed .

- It is recommended that a second BD Saf-T-Intima™ is inserted to use for breakthrough / bolus doses . Use one BD Saf-T-Initma exclusively for continuous infusion and another BD Saf-T-Intima™ site for breakthrough doses .

- More than one medication may be used in a continuous infusion syringe . NB most common diluent is sodium chloride 0.9 % ( isotonic solution ). Always check medication compatibilities ( contact your pharmacist , VPPCP or refer to : Eastern Metropolitan Region Palliative Care Consortium ( Victoria ) Syringe Driver Compatibilities .

- The dead space volume of the BD Saf-T-Intima™ catheter is 0.25 mL . Administer 0.25mL NaCl 0.9 % / WFI ( check compatibilities ) flush following breakthrough doses .

- Maximum subcutaneous rate is 1mL / hour ( Rate may need to be increased in some circumstances . Discuss with VPPCP before using increased rate ). - BD Saf-T-Intima sites should be changed every 14 days or more frequently if required . - Do not use smart sites with NikiT 34 pump .

Figure 4 . Sample symptom management plan .

PAGE 38 paediatric hospital four hours from home and she is admitted for further assessment . Cassie is diagnosed with a rare neurodegenerative condition for which there are no disease-directed treatment options available .

Cassie ’ s family want all care to be provided close to home . The GP is central to Cassie ’ s ongoing management ; regular scheduled appointments help the GP build her relationship with Cassie and her family , and undertake assessments of her rate of clinical deterioration , symptom burden , and the impact of these on Cassie ’ s quality of life and that of her family .

The GP is well placed to provide prompt assessment and management of acute infections , and to monitor

The GP is well placed to manage acute infections and monitor the family ’ s psychosocial risk and grief responses .

the family ’ s psychosocial risk and grief responses . Professional care team meetings , including local clinicians and community health providers , as well as Cassie ’ s subspecialist and PPC teams are useful resources to optimise Cassie ’ s quality of life , practical supports ( including respite and therapy through the National