Triaging the terminally ill
Monday, Sep 2, 2019, 06:36 AM | Source: Pursuit
By Caroline Brand, Brian Le, Anna Collins Davidson, Sara Vogrin, Jennifer Philip, Peter Hudson, Vijaya Sundararajan
It's midday Friday and the phone's been running hot all morning with new patients being referred to your palliative care service.
Unfortunately, you only have one more bed available on the ward, or only time for one more home visit. But which patient should you prioritise?
The man with end-stage heart failure whose elderly wife is exhausted? The unconscious woman dying after a major stroke? Or the woman overwhelmed by anxiety as a result of progressive motor neurone disease? Or the man with severe and debilitating pain due to his prostate cancer?
How would you decide which patient to give your last bed or home visit to?
In an ideal world, plentiful resources would cover the needs of all these patients and more. In reality, resources are finite. Even at the end of life, waiting lists exist and must be managed.
Our research group has developed an evidence-based tool that aims to help clinicians with these difficult decisions. The Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool is expected to change practice internationally.
Demand for specialist palliative care is increasing because of our ageing population, but there are other factors. Earlier integration of palliative care in cancer care, enhanced involvement of palliative care in non-cancer diseases and increased community awareness and acceptance of palliative care are helping to drive demand.
So, with a growing workload both in terms of the volume of referred patients and the diversity of those patients' needs – palliative care clinicians are facing difficult decisions on a daily basis as to how to allocate their clinical resources.
All the patients are deserving, but which ones have urgent specialist palliative care needs and which ones can wait a little longer while they receive other hospital or community-based care?
Until now, there has been very little research to develop a robust and fair system to triage palliative care needs, that is, to prioritise one person's needs over another.
The concept of triage in emergency medicine and disaster response was first documented during the Napoleonic wars in the early 1800s and has been debated and refined ever since.
Today, there are simple, well tested and internationally-accepted tools to rate the severity of a patient's condition and allocate resources in a way that aims to help as many patients as possible.
Similarly, there are evidence-based approaches to managing waiting lists for elective surgery.
Not so in palliative care.
The treatment goals may be different – focusing on quality of life and relief of suffering rather than "saving life and limb" – but resources should still be used in an equitable, transparent way that achieves the greatest good.
Previous attempts to develop a triage tool to guide this decision-making were hampered by poor reliability and low user-confidence, and, as a result, have not been adopted to mainstream practice.
To address this, our team has been working on developing a triage tool for palliative care.
We conducted a foundational qualitative study with Victorian health professionals to better understand which factors clinicians use to assess the urgency of palliative care needs and the ethical aspects of their decision-making.
We used these results as the basis for an international online discrete choice experiment to determine how each of these factors should be weighted. We then developed a scoring system for the final Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool.
The tool is now being implemented in 13 community and inpatient palliative care services across metropolitan Melbourne through a collaborative project involving the Palliative Medicine Research Group, Safer Care Victoria, Melbourne City Mission and the Department of Health and Human Services.
And patient feedback tells us this is an important step.
Patient, John Schaub, was recently admitted twice to the palliative care ward at St Vincent's Hospital for cancer-related pain and is now receiving ongoing specialist community services from Eastern Palliative Care at home.
He says that while health professionals have tough calls to make, patients and carers trust them to make the right decisions.
"We're not aware of [systems to triage referrals] – we just trust that we'll be treated properly and most patients assume that it's done correctly and fairly anyway," he says.
John's wife Andrea also reflected on the need for transparency in palliative care triage.
"When you're stretched emotionally, the last thing you want to hear is 'we'll see if there's a bed', but it gives the carer a sense of relief to know why decisions are made and how [health professionals] are approaching those decisions… it's a more level playing field," she says.
Our research will continue as we look at how the tool performs in real-world clinical practice, but early data and clinician feedback is positive.
Now, each patient starts their palliative care experience by being assessed in the same way, no matter which postcode they live in, which disease they have or who their doctor is.
Seeing the tool in action is a significant step forwards as we work towards increased transparency and equity across palliative care.
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