Tania's JOURNEY

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 - 350km from Chch Recent radiology shows metastatic disease including lungs and spine

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

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

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?

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

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

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

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

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

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