Trajectories of functional decline at the end of life. What do they tell us?
A guest blog post by Dr Deidre Morgan, Lecturer and Researcher, Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University
There are two certainties in life: death and taxes. However, what is uncertain is how each of us will die and how we will experience the declining capacity to manage everyday activities as we approach death. What we do know is that there is a shape and pattern to the trajectories of functional decline at the end-of-life. Understanding these trajectories can help us to plan where these resources should be allocated, what types of resources will support optimal care and when resources should be allocated to support both paid and informal carers. The importance of an active multi-disciplinary team is highlighted in the National Palliative Care Strategy 2018. Knowing when input from people with different skill sets is required will help us deliver care and support that fits with a person’s needs and those of their family. That care should be high-quality and evidence-based is also a guiding principle of the national strategy.
Our recent study evaluating the trajectories of functional decline of 55,954 Australian patients receiving specialist palliative care gives us some guidance about the when, where and what of resource allocation. Functional decline over the last 120 days of life was mapped for patients with cancer, solid organ failure (e.g. respiratory failure, end stage kidney disease), neurological conditions such as motor neurone disease and stroke, cardiovascular disease and dementia. Two trajectories were identified using the Australia-modified Karnofsky Performance status (AKPS) score as a measure of function.
Trajectory 1: Includes cancers, cardiovascular disease and solid organ failure. In this trajectory, decline was consistent but slow. Four months out mean AKPS scores of 50-60 indicated need for occasional to considerable assistance with self care. In practical terms this means referrals should be made to allied health such as occupational therapists (OTs) and physiotherapists (PTs). These allied health work with both patients and carers to maintain function at an optimal level. As functional ability declines, nonpharmacological symptom management of fatigue, breathlessness and pain, along with prescription of assistive equipment and education of carers may enable better function and reduce carer physical burden. AKPS scores declined quickly approximately 2 weeks prior to death which also coincided with an approximate AKPS of 40 and signaled movement into the terminal phase of care. It also signals a corresponding need for rapid increase in access to medical and nursing supports at this time.
Trajectory 2: Includes neurological conditions and dementias. Of note, patients in this trajectory experience a protracted period of functional dependency, with AKPS scores just under 40, four months out from death. An AKPS of 40 indicates that a person is in bed more than 50% of the time, requiring moderate to maximal assistance with self care. Maintenance of function with aspects of self care such as grooming and feeding oneself or management of pressure care needs may be addressed by allied health at this time. Those in Trajectory 2 are more likely to need a higher intensity of care for a prolonged period of time. How these needs are met will depend on where they are receiving care. Those being cared for at home require increased intensity of support in the last 3 to 4 weeks of life when the rate of function declines more quickly. The most rapid decline in function for both trajectories occurred in the 3 days preceding death.
These trajectories, based on our findings with Australian patient data from the Palliative Care Outcomes Collaborative (PCOC), can help us to identify when, where and what is required by people receiving specialist palliative care. While our study only accounts for people receiving specialist palliative care, it may also inform the care of the large numbers of people who die without accessing specialist palliative care. Further research is required to better understand the functional decline trajectories and care needs of this latter group.
The full paper is published in Palliative Medicine:
Morgan, D. D., Tieman, J. J., Allingham, S. F., Ekström, M. P., Connolly, A., & Currow, D. C. The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study. Palliative Medicine, 0(0), 0269216319839024. doi:10.1177/0269216319839024
https://doi.org/10.1177/0269216319839024
Another resource that describes the scope of occupational therapy practice for those at the end-of-life:
Eva, G., & Morgan, D. (2018). Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey. Palliative Medicine, 32(5), 960-968. doi:10.1177/0269216318758928
https://doi.org/10.1177/0269216318758928
Dr Deidre Morgan, Lecturer and Researcher, Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University
For more information to support allied health professionals to provide compassionate, evidence based end-of-life care for their clients visit the CareSearch Allied Health section.