End-of-life care

How to change the mindset on referrals to palliative care for non-cancer respiratory disease?


Dr Jennifer Philip

Palliative care provides numerous benefits for people with non-cancer advanced respiratory disease, so why is it so little used for patients with a high levels of needs?

Respiratory and palliative care physicians from Victoria have investigated why referral to palliative care occurs late, if at all, for patients with advanced non-malignant respiratory diseases such as COPD and ILD. In these conditions, palliative care has significant benefits on quality of life, symptoms of depression, reduced risk of being admitted to hospital for a complications, and improved survival, they write in an article in the European Respiratory Journal.

And yet access is limited for patients with a very high burden of issues that represent key targets of palliative care — symptom relief, discussions around prognosis and future preferences for care and emotional and psychosocial support,  according to a team of researchers led by palliative care specialist Dr Jennifer Philip, Chair of Palliative Medicine at  Melbourne University and St Vincent’s Hospital.

And when it does occur, referral criteria widely varies, suggesting gaps in access to appropriate clinical care. That’s despite Thoracic Society of Australia and New Zealand-endorsed COPD-X 2020 Guidelines and international guidelines supporting early palliative care referral for ILD and COPD patients, they note.

Systematic review

To understand palliative care referral practices in this setting, the researchers reviewed more than 60 studies reporting on referral to palliative care criteria in advanced non-malignant respiratory disease.

“We know that this group of people have a high psychosocial burden they can be very isolated, anxious and have high levels of depression,” said Dr Philip.

“They’ve been sick for a long time and families can become quite worn out from having to provide quite high levels of care. People with these kinds of needs can experience significant benefit from palliative care and it struck me and others that this was a group of people not accessing it.”

Focussing on COPD and ILD, Dr Philip said the study identified a series of factors contributing to the lack of early palliative care referral.

The unpredictability of the disease trajectory and the underreporting, under recognition and under treatment of chronic breathlessness featured high on the list along with a lack of certainty around when and why referral might best occur.

Not just for terminal cancer

Reticence to institute palliative care may also be compounded by misunderstanding, said Dr Philip.

Speaking to the limbic Dr Philip said physicians may confuse this approach with hospice and end of life care, and patients would end up sharing the misunderstanding.

“The way that we’ve come to signify palliative care is perhaps something that it’s not – a service for very end stage disease or maybe even immediately impending death. And because we’ve configured our services around the needs of  people with cancer, people with airway disease and their doctors don’t think palliative care is relevant to them and they don’t talk about it.”

Prognostically, determining ‘a right time’ to refer patients to palliative care services is also difficult because many patients live long term with symptoms.

Referring to the model of referral to palliative care in cancer, Dr Philip said consensus referral criteria to outpatient palliative care clearly pinpoint when the service should be introduced.

Those criteria included the presence of severe physical or emotional symptoms, existential crises, request for hastened death, assistance with decision making, specific cancer complications such as delirium and spinal cord compression, prognostic outlook of less than 12 months and progressive disease despite second-line therapy.

In lung cancer, the time of diagnosis of metastatic disease marked the criterion for clinical trials of palliative care integration – a point readily identified and associated with high needs and poor prognosis, said Dr Philip.

And a similar, standardised set of criteria to initiate a palliative care referral for people with advanced non- malignant respiratory disease would reduce variation and gaps in clinical care, she believed.

Key prompts

Based on their systematic review of more than 60 papers that identified criteria to palliative care in advanced non-malignant respiratory disease, Dr Philip and colleagues have put forward a number of key prompts for palliative care referral broadly classified across two categories.

The first, described as needs-based criteria, includes chronic breathlessness, psychological distress, existential distress and increasing home support requirements. The second category covers disease-based criteria – a certain point in disease progression that would trigger referral to palliative care.

“That might be a lung function test point, hospitalisation, ED presentations, the need for advanced respiratory therapy or a combination of these factors, which are signifiers of more severe disease or disease worsening and higher levels of problems,” Dr Philip explained.

And the findings are intended to be the start of further research to elucidate the level of priority assigned when considering criteria to trigger a palliative care referral. 

Dr Philip is currently investigating models of care that embed palliative services into standard care pathways. She said that identifying patients who have ongoing needs and talking to palliative care services about how those patients can be supported could help start those difficult conversations.

“There’s a perception that, when all else fails you turn to palliative care but the reality is that active treatment and palliative care can occur concurrently.”

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