In the early days of the program, palliative care staff worked shifts that covered 24 hours, and their adventures generated many memorable stories and folklore. The nurses who covered day and evening shifts worked with a great team known as after hours district nurses. They attended to palliative care patients as well as district nursing patients in those early days. The extracts below are from a nurse who was among the first to join the new home-based palliative care program, and stayed in palliative care in Canberra and elsewhere for the next 18 years.
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How it began
I first became aware of palliative care in early 1986 while working on the surgical ward at Royal Canberra Hospital. A woman had come on to the ward asking to see a patient who was due to go home that day. Surgery had revealed a large, inoperable tumour and she was due for discharge. The woman said that the patient had been referred to a new home-based palliative care program and she was there to assess the patient and her family for admittance to the program. A new method of care had been instigated to provide care in the home and support to the families of those diagnosed with a terminal disease who wished to be cared for at home.
I was invited to visit the new unit operating from Bennett House in the grounds of the hospital. In the general business of the surgical ward I initially forgot the incident. Eventually, however, after working at the hospital for 11 years and feeling the need for a change, I contacted the program and was accepted.
24-hour support
We worked four days on and four days off. The Canberra area was divided into three zones – North, South and Central Canberra. The service was available to patients and their families over the full 24 hours – a morning and an evening shift and a call-out service during the night. It worked well and soon palliative care at home became an integral part of the Canberra Community Nursing Service.
I worked evenings, 2pm-10.30pm in the central Canberra area. We picked up the provided car at the base, received our patient lists and headed out. We often doubled up to visit people who required two staff members to attend. Home-based palliative care could not have been provided had the families and friends of the terminally ill person not been ready to provide 24-hour support and care as well. We were there to support them in the care of their terminally ill relative or friend.
Joint approach
I well remember visiting a young man who was diagnosed with HIV (it was early days and very little was known about this disease). His young friends were providing the care and we went morning and night to offer them support. This night they were worried about his increased restlessness, and I reassured them that they were doing well and told them to relax as I would call back later in the shift. Prior to returning to base I popped in. All was well; they and the patient were very relaxed. The smell of marijuana lingered!
It's OK to go
One family comes to mind, a middle-aged gentleman, his wife and four sons. I visited them nightly to settle him down and support the family. He had been very restless and was becoming agitated, trying to get out of bed. Over a cup of coffee I explained to them that they might have to give him "permission to go". This caused great consternation and the boys scattered. His wife however understood and we spent time talking about what was required. She slept in the chair near his bed which was in the lounge room. He died early the next morning.
I visited the next night to pick up the equipment and to see the family. She was understandably upset but wanted to talk about what had happened during the night. Each boy had individually come and whispered in the ear of her husband during the night. When questioned by her they admitted that they had each told their Dad that it was OK for him "to go".
Last farewells
We also attended the funerals of people who had died. We were often a visible presence at the services. I once heard one funeral employee whisper to his partner, "They're here again!" I think they thought we were Canberra's official mourners!
This is an edited extract from Butterflies: Stories that Celebrate Palliative Care. Echo Books. $20. Available from pallcareact.org.au
Join the celebration
Palliative Care in the ACT is celebrating its 30th anniversary with a fundraising dinner on October 1. The service began with volunteers going into the homes of terminally ill people and in 2000 Clare Holland House was opened. The focus in more recent years has been on putting volunteers into Clare Holland but research shows that people prefer to die at home so it is hoped up to $30,000 can be raised to train 15 more volunteers to go into people's homes. October 1, Canberra Southern Cross Club, Woden. $60 a person. Bookings: Palliative Care ACT on (02) 6255 5771. pallcareact.org.au
