Getting a Referral: Who Refers and What the Service Does

Getting palliative care: who refers, what the service actually does, and the one question that matters most

Ask a family what palliative care is and most will describe a specialist team that arrives at the end. Ask a palliative care physician and they will tell you something different: that most palliative care in Australia is delivered by generalists — GPs, community nurses, the people already providing the care — and that the specialist service is there for the complex part.

That distinction matters enormously, because it changes what you are asking for and who you ask.

It also explains why this goes wrong so often for people with disability. The specialist service is organised around prognosis, and people with lifelong conditions do not have one. The referral criteria assume a recognisable terminal decline, and this population frequently declines over years. And the service’s experience is dominated by cancer — 71.4 per cent of people accessing voluntary assisted dying in New South Wales in 2024–25 had a cancer diagnosis, which reflects the broader pattern of who reaches end-of-life services and who does not.

So people with non-malignant conditions and people with disability are referred later, less often, and sometimes not at all.

This guide is about getting it right: who can refer, what the service actually provides, what to put in a referral so it works, and the single operational question that determines whether palliative care at home is possible at all.

We are a disability provider working across New South Wales. We are not a palliative care service and nothing here is medical advice — referral criteria and clinical decisions belong to the services involved.

The two levels, and why you need to know which one you want

Primary or generalist palliative care is delivered by the clinicians already involved: the GP, the community nursing service, the treating specialist, and — for the day-to-day — the disability support team. For a great many people this is sufficient, provided the GP is engaged and has access to specialist advice when needed.

Specialist palliative care is delivered by a multidisciplinary team with specific training: palliative care physicians, clinical nurse consultants and specialists, allied health, social work, sometimes bereavement counsellors and pastoral care.

And the crucial point that families almost never know: specialist palliative care services frequently consult rather than take over. A referral does not usually mean the GP steps back. In many cases the specialist service assesses, advises on symptom management, provides a 24-hour phone line, and leaves the day-to-day management with the GP and community nursing — which is both appropriate and the reason the GP relationship stays central.

So the useful framing when you are asking for something is not “please take over this person’s care.” It is one of:

• Please assess and advise on a symptom problem nobody is managing well
• Please provide access to your 24-hour advice line, so there is somebody to ring at 3am
• Please be involved so that anticipatory medications can be organised
• Please help plan for this person to die at home rather than in an emergency department

Naming the thing you want produces a far better response than a general referral.

What a specialist service actually provides

Worth knowing in detail, because people underestimate it and then do not ask.

Assessment and symptom management advice — pain, breathlessness, nausea, agitation, secretions, and the things nobody has managed to settle.

A 24-hour telephone advice line, in most services. See below; this is the one that matters most.

Home visits, by nursing and sometimes medical staff, at a frequency set by need.

Medication access and anticipatory prescribing — getting the medications that will be needed into the house before the night somebody needs them.

Equipment, and this is a genuinely under-used advantage. Many community palliative care services have rapid-access equipment loan arrangements — hospital beds, pressure-relieving mattresses, commodes, hoists, oxygen — that move in days where NDIS assistive technology processes take weeks or months. Ask about this first, before starting an NDIS equipment request, if the timeframe is short.

Psychosocial and family support, including social work, and in many services counselling and bereavement follow-up for the family after the death.

Case conferencing, bringing the GP, the specialists, the family and the support provider into one conversation.

Inpatient care, where a specialist palliative care unit or hospice bed is needed for symptom management or because home is no longer possible.

Consultation liaison in hospital, where the person is an inpatient under another team.

Advice and education for the people providing care — and this is worth asking for explicitly. Many services will train a support team: what to expect, what to escalate, what the medications do, what dying looks like. A house team that has had that session performs completely differently from one that has not.

Who can refer, and how it actually happens

The GP is the most common route and usually the best one, because the GP stays involved afterwards.

A treating specialist — oncologist, neurologist, respiratory physician, cardiologist, rehabilitation physician.

A hospital team, during an admission. This is a good moment to ask, because the referral can be made before discharge and the service is already in the building.

The person or their family, in many services. A great many community palliative care services accept enquiries directly from patients and families, and will then seek the clinical information they need. If you have been told you need a referral and cannot get one, ring the service and ask what they require — the answer is frequently less than you expect.

A support coordinator or provider cannot usually refer, but can absolutely ring a service, ask what it needs, and then make sure the GP provides it. In practice this is often what makes the referral happen.

What to put in the referral so it works

This is the practical core of the guide. A referral that says “palliative care please” for a person with lifelong disability and no prognosis will often come back asking for clarification, or be triaged low.

A referral that works contains:

The trajectory, not just the diagnosis. “Severe cerebral palsy with recurrent aspiration pneumonia. Four admissions in the last eighteen months, previously one every two to three years. Each recovery less complete than the last — now requires hoist transfers where she was standing with assistance in 2024.”

The baseline and the change against it. What the person was like, dated, and what they are like now.

Weight loss, with numbers and dates.

The admission history — dates, reasons, length of stay, and the function they came home with.

The answer to the surprise question, stated plainly. “We would not be surprised if she died in the next twelve months.”

The specific problem you want help with. Symptoms, or planning, or after-hours support, or all three.

What has already been tried.

The practical situation — where the person lives, who supports them, how many hours, and whether dying at home is realistic.

Communication and capacity information — how the person communicates, whether they can participate in decisions, who the person responsible is.

And what you are asking for, in one sentence.

That referral gets a response. The one-line version does not.

The non-cancer problem, honestly

People with non-malignant life-limiting conditions are referred to palliative care later and less often than people with cancer. This is well documented internationally and it is visible in Australian service patterns.

The reasons are structural rather than anybody’s fault:

Prognosis. Cancer has a relatively recognisable terminal trajectory. Heart failure, respiratory disease, dementia, neurological conditions and lifelong disability do not, and services built around a prognosis-based referral criterion struggle with people who do not have one.

Referral culture. Clinicians in non-cancer specialties refer less, partly because they were trained in a model where palliative care was oncology’s business.

The person does not look like they are dying, because they have looked like this for years.

Disability-specific unfamiliarity. Some palliative care services have limited experience with intellectual disability, communication disability or complex physical disability, and will say so. That is not a reason not to refer — it is a reason to bring your expertise to them, which is exactly what a disability provider can do.

What to do about it. If a service declines or defers a referral:

• Ask what their criteria actually are, in writing
• Ask whether they will provide a single consultation or advice rather than ongoing care — most will
• Ask whether the GP can access their phone advice line even without a formal referral, which is frequently yes
• Ask what would need to change for the referral to be accepted, and put a review date on it
• Go back after the next admission, with the updated trajectory

And if the answer remains no, the fallback is to build generalist palliative care properly: an engaged GP, a community nursing service, anticipatory medications, and a written plan for after hours.

The question that matters most

Here it is, and it determines whether any of this works.

“Is there a number we can ring at 3am, and who answers it?”

Everything else in palliative care is useful. This is the thing that decides whether somebody can die at home.

Symptoms change at night. Pain escalates, breathing becomes distressing, somebody becomes agitated, a syringe driver alarms, a family panics. If there is no number, the only available action is 000 — and an ambulance called at 3am for a dying person who wanted to stay at home will almost always take them to hospital, because that is what ambulances do in the absence of a plan.

Most New South Wales local health district community palliative care services operate after-hours telephone advice, and some have after-hours nursing visits. Availability varies between districts and changes, so the answer has to be obtained locally rather than assumed.

What you need, written down and on the fridge:

• The after-hours number for the palliative care service
• What hours the service itself operates
• Whether after-hours visits are available or only advice
• The GP’s after-hours arrangement
• Who to ring first, second and third
• A written statement that this is an expected death and that the plan is for the person to remain at home, signed by the GP — so that if paramedics do attend, there is a document explaining the plan
• Whether there is an ambulance care plan or authorised palliative care plan in place for the person, which some services arrange specifically so paramedics do not transport

That last item is the practical answer to the 000 problem, and it is worth asking about by name.

Timing: earlier is better, and the evidence says so

The persistent misconception is that palliative care is for the final weeks. It is not, and referral at that point wastes most of the benefit.

Palliative care can begin at diagnosis and can run alongside active treatment, including treatment intended to cure. Early involvement is associated with better symptom control and better quality of life, and in some conditions with living longer rather than shorter — which is the finding that most often changes families’ minds when they are resisting referral.

The practical consequence for this sector: the referral conversation should happen when the surprise question first returns a “no”, not when somebody is clearly dying. The guide on recognising the end of life covers that trigger.

What families most often say afterwards is that they wish it had started earlier. We have never heard anybody say they wished it had started later.

Questions to ask at the first appointment

• What exactly will your service do, and what stays with the GP?
• Is there a 24-hour advice line, and who answers it?
• Are after-hours visits available in this area?
• How often will you visit, and will that change as things progress?
• Who is our named contact, and who covers when they are away?
• Can you arrange anticipatory medications, and who prescribes them?
• What equipment can you provide, and how quickly?
• Will you train our support team, and when?
• Can we have a case conference with the GP and the provider?
• What is the plan if symptoms escalate at night?
• Is there an ambulance or paramedic palliative care plan we should have in place?
• If home becomes impossible, what are the options and how fast can they happen?
• What bereavement support is available to the family afterwards, and to the housemates?
• What should we be watching for and what should we ring you about?
• What happens when the person dies — who do we call, and what should we not do?

That last question is worth asking at the first appointment rather than the last. It has its own guide here, and knowing the answer in advance prevents the most distressing kind of confusion.

Where the funding sits

Briefly, because there is a full account in the palliative care and disability guide in this library.

Specialist palliative care is health-funded, through the public system, and is not means tested. Community palliative care services, inpatient palliative care units and hospital consult services are provided through local health districts. A GP’s involvement is Medicare-funded, including care planning and case conferences. Medications come through the PBS.

The NDIS does not fund palliative care. What it funds is the person’s disability supports, which continue — and which at the end of life frequently need to increase substantially and quickly. That is a plan reassessment conversation, and the priority pathway applies where there has been significant unexpected deterioration.

For people over 65 who are not NDIS participants, My Aged Care on 1800 200 422 and the Support at Home programme sit alongside specialist palliative care, which is available regardless of age and regardless of aged care status.

Where to start

• The GP, with the referral content described above.
• The local health district’s community palliative care service. Ring and ask what they need, even if you do not have a referral yet.
• Palliative Care NSW, for information about services across the state.
• CareSearch, for evidence-based palliative care information for patients, families and clinicians.
• Palliative Care Australia, the national peak body, whose Dying to Talk resources help start conversations — and whose work on the gap between the NDIS, health and aged care systems is covered elsewhere in this library.
• The hospital social worker, if the person is currently an inpatient. Frequently the fastest route to a referral there is.