Recognising deterioration in palliative patients

Following on from a terminal diagnosis, the trajectory and timeline of a condition or disease will look different for everyone, making it hard to predict.

But it's crucial clinicians and carers are aware of what changes in a patient's condition may mean...

Even though it may be months or even years before they’re close to the end of their life, a patient should ideally enter palliative care as early as possible.

“It's better to have been referred early, because there's a lot that can be done, and that’s also why it's important to recognise deterioration,” says Palliative Care Clinical Nurse Specialist, Claire Paynter.

“It helps to review patients, care needs and goals for that person, talking with the family and GP, and starting a palliative care pathway.

“So, you're changing the focus from treating everything to comfort care.”

Deterioration refers to signs of a person’s decline or reduced state of health.

Clinicians and carers should be able to determine when changes occur that signify a patient is moving closer to the end, and it’s crucial for offering the best care and support for each stage.

"Identifying what stage of illness people are at will determine what clinicians need to consider."

Identifying what stage of illness people are at will determine what clinicians need to consider. This becomes urgent when the patient is close to dying and wants to be at home, or to be with loved ones. Having an ongoing care relationship for some time before the changes occur will really help.

Closer to the end, not recognising dying - especially in chronically ill, older patients - delays acknowledgement of the limitations of treatment, appropriate decision making and the planning of comfort care.

Some reasons to be on top of deterioration are:

• Planning a palliative care pathway
• Early symptom management
• Withdrawal of treatments
• Future planning
• Emotional support
• Avoiding inappropriate hospital transfers
• Ensuring patient’s wishes are met

Claire suggests asking the ‘surprise’ question.

 “You should think, ‘Would I be surprised if this person died in the next few months, weeks or days?’,” she says.

“And if you're not surprised, then maybe they might need to step up their palliative care or start looking down that pathway.”

Listen as Claire gives an overview of deterioration.

What are the signs of deterioration?

General indicators of poor or deteriorating health can start weeks or months before a person dies, and include:

• Global deterioration (physical and psychological)
• Stubborn or irreversible symptoms that don’t respond to treatments (such as severe appetite and weight loss, fluid retention, drowsiness, recurring infection, nausea and an overall drop in physical function)
• Withdrawal from their environment
• A drop in energy levels

Deterioration might be occurring if they are:

• Bedbound
• Spending more time sleeping/resting
• Eating less
• Having difficulty swallowing
• Showing changes in their level of consciousness
• Experiencing terminal agitation

Claire recommends tools such as the Supportive and Palliative Care Indicators Tool (SPICT-4ALL) or the Australia-modified Karnovsky Scale (AMKS), which make it easier for care staff, individuals and their families to help to recognise signs that a person’s overall health may be declining.

Finally, she points out that not everyone needs specialist palliative care at the end of their life but can be looked after with palliative care from general medical teams.

“It's important to recognise that not everyone who's dying needs specialist palliative care,” she says.

"If someone is frail and aged and has no complex symptoms, they don't always need to have a specialist palliative care involved.”

Learn more

Two key resources are available from HammondCare for those looking to learn more about palliative care.

The Palliative Care Handbook offers a thorough understanding of symptoms and treatments which emphasise the importance of a holistic approach to managing patients’ physical, psychological, social and spiritual needs.

The Palliative Care - End of Life FlipChart provides clear guidance for end-of-life symptom management, and is a go-to guide for staff in many facilities.

3 An optional caption for the image that will be added to the gallery. Enter any descriptive text for this image that you would like visitors to be able to read.

4 An optional caption for the image that will be added to the gallery. Enter any descriptive text for this image that you would like visitors to be able to read.

5 An optional caption for the image that will be added to the gallery. Enter any descriptive text for this image that you would like visitors to be able to read.

For other helpful ideas, check out these HammondCare links:

Resources

Bookshop

The Advance Project