Recognising when a resident has entered the terminal phase of disease is necessary so that we can:
- Review care needs and goals of care with resident (if able), family and GP
- Implement palliative care plan or pathway
- Ensure care given is in line with previous direction from the resident, if they are now unable to give direction
- Manage symptoms appropriately
- Withdraw treatments, activities, medication that are no longer appropriate or benefiting the resident
- Provide counselling and support, to the resident, family and staff.
Recognising when death may be approaching is about ensuring that the resident’s care needs are met, and care is given in accord with their wishes. It is not about predicting how long the resident may have to live.
Recognising when a resident in aged care needs active palliative care is not always easy because:
- The focus of aged care is on maintaining health and independence
- Many residents suffer from chronic conditions that are not always recognised as life-limiting (eg, dementia)
- It is common to think of the terminal phase of care as being short (as it often is in cancer) but for conditions like dementia and organ failure, it can extend over months or years
- Many residents experience declining health over a long period of time. Residents who are declining may have episodes of decline and partial improvement and even times when death was expected but did not take place.
General predictors of end-stage illness
From the Gold Standard Frameworks, the three triggers that suggest that patients are nearing the end-of-life are:
- The Surprise Question "Would you be surprised if this patient were to die in the next few months, weeks, days'?"
- General indicators of decline - deterioration, increasing need or choice for no further active care
- Specific clinical indicators related to certain conditions.
The following general indicators may be useful when considering a change in status:
- Weight loss (more than 10% of body weight in last 6 months); BMI below 18
- Serum albumin less than 25g/l
- General physical decline; dependent in ADL’s, bed / chair fast
- Multiple diseases impacting on wellbeing
- Increased frequency of admissions to acute care.
The last stage of dementia is variously described as terminal, end-stage or advanced dementia. It is characterised by:
- Loss of ability to communicate in a meaningful way
- Difficulty swallowing and very poor nutritional intake
- Incontinence of bowel and bladder
- Sleeping most of the time
- Inability to change position, sit unsupported, hold head up or smile
- Episodes of fever and infection
- High risk of pressure injury, hip fracture, pneumonia and urinary tract infection; all of which are associated with risk of death within 6 months.
The progress of heart failure is hard to predict and death may occur suddenly. Signs of late disease are:
- Shortness of breath at rest or on minimal exertion
- Symptoms not well controlled despite optimal treatment.
Indicators of possible end-of-life considerations include:
- Severe disease, if lung function tests are available, FEV1 less than 25% of predicted value
- Long term oxygen therapy
- Anorexia / depression / weight loss / BMI less than 18
- Signs and symptoms of right sided heart failure.
Cachexia, anorexia, weight loss and fatigue are indicators of progressive disease. There is extensive information available on CareSearch regarding end-of-life care for people dying of cancer.
Signs of imminent death (likely within 1-14 days)
Deciding when to call the family is a difficult decision that all aged care nurses have to make, and it is not always obvious.
The Residential Aged Care End of Life Care Pathway (RAC EoLCP) lists nine signs of impending death. There is more about the RAC EoLCP on the Care Planning page and also on CareSearch.
The quality of care for dying residents directly affects family grieving and staff morale.