1. Tania's JOURNEY

2. Background Based on care of “Tania” 13 year old girl/young woman
History of previously resected rare bone tumour
Presented with severe uncontrolled pain with neuropathic features
Usually lives with parents and sister in small distant rural village km from Chch
Recent radiology shows metastatic disease including lungs and spine

3. Initial Pain Management
Thorough history of type and quality of pain, duration and when most problematic
Described pain as 11/10
Radiating down legs
Worse at night – had not sleep for the last week
Commenced morphine/ ketamine infusion at moderate level
Gradually increased 4 hourly until comfortable

4. Ongoing pain management
Reviewed 4 hourly by nurses
Daily review and as required by senior nurse/medical team
Improved analgesia but not sleeping at night
Unable to swallow oral medication
Added amitriptyline
Taught how to swallow oral medications, including paracetamol and laxatives
After 2-3 days fairly comfortable – looks relaxed, moving freely, sleeping at night
Able to convert to oral analgesia – enabled Tania to be more mobile

5. First discussion with family
Parents told sadly unable to provide a cure for Tania but we would be providing palliative care and planned to do our utmost to keep her very comfortable
Understandably very upset, father angry and pacing
Mother asked that we tell Tania’s sister as she felt unable to do so alone
While talking with sister, Tania's father returned very distressed saying that Tania knew she was dying – could we talk to her – what should we say?

6. Second day discussion
Having the hardest discussion with all the family, including Tania the previous day, this day we focused on what the family saw as their priorities.
Talked over much of the previous day, likely timeframes but no absolutes on what we can not know
Supported family to bring additional relatives to Chch to provide support to family
Family - to keep Tania comfortable & get home
Tania – to keep comfortable & bring her puppy in to the ward /sleep on her bed
Sister – wanted to attend CANTEEN camp – encouraged to do this

7. Ongoing pain management
Organised for palliative radiation, given over 4 days
No intention for cure but key role in palliative analgesia
Explained to the family on many occasions and staff
On one occasion returned to ward – extreme pain
Obvious abdominal distension
Severe constipation despite laxatives – laxatives increased – much more comfortable

8. Ongoing discussions
By 10 days able to go on leave to Ronald McDonald House – over night leave
A few problems with Tania unwilling to wake parents during the night for analgesia – returned to ward - SC analgesia until steady state – oral analgesia – back on leave
Significant reduction in analgesia required due to radiation ( short term)
Discussed with Tania importance of letting parents know when in pain, many times
Tania not always sleeping well at night – amitriptyline increased with good effect
Key discussion with consultant and parents regarding “Allowing natural death”
Agreement to continue RBC if symptomatic but no routine blood tests
Parents discussed N/G as not eating – agreed not to use
Reduce monitoring of vitals to once daily but daily head to toe review
Agreed not to implement active resuscitation and to allow natural death
Signed form – placed in notes for nurses/medical team to all know of parents wishes

9. Background discussions
Discussion with home hospital of Tania’s current condition and care and that of the family
Likely discharge date
Never on a Friday
About 2 weeks discharged back to home hospital/ hospice
Ongoing weekly catch up with home hospital from CHOC & prn

10. Home hospital/hospice
Able to get home for brief periods but family not comfortable to stay at home
Tania slowly declined
Little appetite, mainly in bed, sleeping more
Requiring increases in analgesia every 2/3 days to keep comfortable
Morphine 200mg /day
Developed fever , SOB
Discussed use of A/’B,s
First principles of palliative care is to reduce suffering – agreement not to give
Comfort cares, propped up, oxygen mask by face but not on as distressing
No monitoring , ensured comfortable
Washed by mother and nurses as mother liked the support and time to talk
Died peacefully a few days later

11. Palliative care challenges
Family distress – honesty
Puppy
Constipation
Change in rules, a/bs, blood tests, nutrition, blood products
Staff distress
No maximum analgesia
Allow natural death
Support for all – family, nurses, doctors, MDT & cleaner