As occupational therapist Tony Curry pointed out we are all 'life-limited' as everyone dies eventually. Those diagnosed with a life-limiting illness and their carers, however, face the prospect of palliative care and the sooner they embrace that the better, Tenterfield's palliative care team advised.
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Community nurses Laura Mattocks and Nicole Green along with Ms Curry are attached to Tenterfield Hospital and form the team along with social worker Marylin Marks. Specialist palliative care nurse Angela Newton visits once a month from Armidale, and as needed.
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They are keen to build a relationship with clients and their families well before the end stage, when options can be explored and informed decisions and plans made before the pressure of advanced care needs sets in.
They said this relationship can not only ease the client's eventual passing but also build a support mechanism for those left behind.
Many interpret 'going into palliative care' as imminent death whereas it actually means maximising a person's quality of life for as long as that life may extend. And it certainly isn't euthanasia.
There are two rooms at the hospital earmarked for palliative care patients, but the team strives to meet the wishes of the vast majority of people who prefer to die in their own homes.
"There are restrictions and challenges that come with that," hospital manager Tony Roberts said.
"We're a small service with a limited number of people, but the girls do a fantastic job."
If the time comes for the client to be hospitalised, the community health team acts as a bridge to the new arrangements and will continue to see them in their new bed.
Often by this stage it's the carer that needs support, and Ms Mattocks said a pre-established connection is 'golden' as it transitions into bereavement support.
While there is much the team can do to help a client remain as comfortable as possible at home, including a raft of pain relief delivery options, a syringe driver for pain relief is not one of them. The community nurses are only available from Monday to Friday, meaning the syringes can't be refilled on the weekends. For phone support NSW Health provides an after-hours helpline at 1800 548 225.
"It's a great package (of care) but, as with anything, it's open to improvement," Mr Roberts said.
The team generally needs to look after only one or two patients at a time, and are well-experienced in helping with the fear that goes along with the diagnosis of a life-limiting condition. Ideally they want to be contacted at the time of this diagnosis.
Ms Mattocks said many families have complex relationships and connection with the palliative care team can open up early discussions about care directives and plans for the final days.
She said some carers are in denial and have to move into a position of letting their loved one go without the feeling they're letting them down.
"People can be creative about how they'd like to die. Some people have an early funeral so they can say good-bye to everyone at their own wake.
"You don't have to do it the old-fashioned way."
Ms Curry concurred, saying that palliative care patients and their family need an 'exit strategy'. She said the team carries out the patient's care in consultation with his or her doctor and specialists, and can advocate on their client's behalf and help them remain independent if they wish, for as long as it is safe and practical to do so.
The most important thing the team stressed is to start the conversation early.
In addition to pain relief and symptom management, clients can access an equipment loan pool of health aids and have an exercise program developed for them, and be put in touch with community organisations like the Tenterfield Cancer Support Group.
