There are many assessment tools used to help track and report information to your palliative healthcare team. The Palliative Performance Scale (PPS), the most common tool used by healthcare professionals. Based on the Karnofsky Performance Scale (KPS), this scale provides a snapshot of a person’s ability to mobilize on their own, activity level, ability to care for themselves, food and fluid intake, and level of consciousness.
Like any tool, the PPS is has its limitations. It does not give you the degree of distress or suffering experienced. Nor does it help you rate a person’s pain or how long until death. It is most accurate with a cancer diagnosis though. Unfortunately, it is not as reliable as an assessment tool with other diagnoses, such as stroke, heart attack, dementia, or renal failure.
Physical performance is measured in 10% decremented levels from fully ambulatory and healthy (100%) to death (0%). The score is in 10% increments, not split by 5% increments. This is to allow for more variables and situations. These levels are further broken down into the following five observable considerations.
Ambulation
The ambulation column refers to normal day-today activities. This area of life remains stable until a person reaches the PPS 70% and PPS 60% level.
Reduced ambulation refers the person’s inability to carry out their normal job, work occupation, hobbies or housework activities. The person is still able to walk and transfer on their own but at PPS 60% needs occasional assistance.
As a person’s health deteriorates, the abilities in the PPS 50% to 30% rows start to relate more to the self-care column. For example, totally bed bound at PPS 30% due to either profound weakness or paralysis to such extent that the person not only cannot get out of bed, but is also unable to do any self-care.
Activity & Extent of Disease
The degree of a person’s disease is the degree of disease progression despite treatment.
For example in breast cancer, a local recurrence would imply some disease; one or two metastases in the lung or bone would imply significant disease; multiple metastases in lung, bone, liver, brain, hypercalcemia, or other major complications would be extensive disease.
The extent of disease refers the ability to maintain one’s work, hobbies and/or activities. Decline in activity may mean the person still plays golf but has reduced from playing 18 holes to 9 holes, or just a par 3, or to backyard putting. People who enjoy walking will gradually reduce the distance covered, although they may continue trying, sometimes even close to death (e.g., trying to walk the halls).
Self-Care
This category is broken down into five areas.
Full ability is the ability to do one’s own self-care and activities of daily living, such as using the bathroom without assistance or dressing their self.
Occasional assistance means that most of the time the ill person is able to transfer out of bed, walk, wash, toilet, and eat by their own means, but that on occasion (perhaps once daily or a few times weekly) they require minor assistance.
Considerable assistance means the person needs help, usually by one person, on a daily basis. For example, the person needs help to get to the bathroom but is able to brush their teeth and wash at their hands and face. Food may have to be cut into edible sizes, but the person is then able to eat of their own accord.
Mainly assistance is a further extension of considerable. Using the above example, the person now needs help getting up and assistance with washing their face and shaving, but can usually eat with minimal or no help. This may fluctuate according to fatigue during the day.
Total care means the person is unable to eat without help, toilet, or do any self-care. Depending on the situation, the person may or may not be able to chew and swallow food once prepared and fed to them.
Changes is Food & Fluid Intake
Intake changes are obvious. Normal intake is the person’s usual eating habits while healthy. Reduced intake means any reduction from normal and is highly variable according on the individual. Minimal intake refers to very small amounts, usually pureed or liquid, which are well below nutritional sustenance.
Conscious Level
Full consciousness means the person is fully alert and oriented with good cognitive abilities, such as thinking, memory, etc.
Confusion can be either delirium or dementia with a reduced level of consciousness. It may be mild, moderate, or severe. It can also have multiple possible causes.
Drowsiness can be due to fatigue, drug side effects, delirium, or closeness to death.
Coma in palliative care is the absence of response to verbal or physical stimuli. Some reflexes may or may not remain. The depth of coma may fluctuate throughout a 24-hour period.
So, how do I use the PPS?
The PPS score is an overall ‘best fit’ tool to help determine what help is needed and what the future is likely to hold for care needs. Starting at the Ambulatory column, work your way left to right across the columns to find out what the PPS score is. The lowest row of ability is the PPS score.
Example of How to Use the Palliative Performance Scale
For the example below, a person with pancreatic cancer could have reduced ambulation, is unable to do work, hobbies, or housework, needs daily assistance with self-care, food/fluid intake is normal, and occasional moments of confusion. This would fit them into the 50% score.
Don't be afraid to use the PPS Scale. Sit down with either yourself or your loved one and see what the scale says for you. Do you need more help in the coming months or right now?
Share it with your concerns with your healthcare team. This allows your healthcare team to know how things are changing and how to get you the supports/resources need to plan for in the future.
Below a downloadable Palliative Performance Scale you can use to track you or your loved one’s progress.
Like anything else in the world related to technology and smartphones, there is an app for the Palliative Performance Scale. It is made for American healthcare services, but is interesting none the less
A Google search of "PPS Scale Calculator" will bring you many easy to use online resources as well.