Palliative care
Palliative care is a special kind of health care for individuals and families who are living with a life-limiting illness that is usually at an advanced stage. Palliative care covers not only physical needs, but also psychological, social, cultural, emotional, and spiritual needs of each person and family. This is a complex area of health care, and one that is very difficult for most families and caregivers. Each person has a different and unique end of life journey, there is not a single exact point in an illness when palliative care begins; it can begin at diagnosis, and at the same time as treatment, it very much depends on the individual and the progression of their illness, this may last from a matter of days, weeks or months to several years. While this is a an extremely painful time, families get an opportunity to say goodbye to their loved ones, to resolve any differences, to plan for the death; Do Not Resuscitate(DNR) or Allow Natural Death(AND), living wills, burial, or cremation. Having this opportunity to say goodbye can also be a gift to help come to terms with your loss.
When your loved one is palliative a lot of questions come to mind “How long do they have?, What kind of support will they need? What can we expect and when?, How do we provide comfort and maintain their dignity?, What is the best place for them to have the best quality of life?”
Tools to help families and health partners to understand what stage their loved one is in their end of life journey.
Palliative Performance Scale (PPS) and Edmonton Symptom Assessment System (ESAS) are some tools in place and utilized in the decision process for care and as a determinant for entrance into hospice, palliative care community programs or residential setting. The tools allow the professionals to discuss the next step in the client's care. Both scales are straight forward and understandable, they are not precise measuring tools and can be interpreted slightly differently from others on the health support team, they are also not the only way we understand where the client/patient is in their end of life journey however they are extremely helpful. Every hospice follows a general assessment with their own individual ratings as well. These scales are useful to initiate those difficult conversations regarding palliative care or end of life care with the client and family.
A Palliative Performance Scale (PPS) offers a common language and assists in developing an understanding among the entire health support team, client, and families. The scale provides a common meeting place to understand where the client/patient may be in relation to their illness, their abilities, and their death journey. Typically, a residential hospice will accept clients/patients into the home at a 30 PPS score or less. Once that patient is assigned a PPS score it does not mean that it cannot potentially reverse. PPS uses five observer rated characteristics which are ambulation, activity and evidence of disease, self care, intake, and consciousness level. The scale reads horizontally across each row to find an overall “best fit using all the five observer rated characteristics. Scores are in 10% increments only.
Ambulation determines the ability of a client to walk without the need of assistance.
Activity determines if a person is still able to perform the normal activities or hobbies and to what degree of ease, they can still do this.
Self care implies the level in which a patient is still able to take care of themselves or needing assistance to do certain things which includes transferring, eating, bathing, walking, shaving and toileting.
Intake refers to the persons eating habits which can range from normal, reduced, minimal and mouth care only.
Consciousness level determines the level of alertness and orientation with the cognitive abilities in various domains of thinking and memory.
The Edmonton Symptom Assessment System (ESAS) is a good base for the client and caregiver. The ESAS graph puts the information into a visual format. It is easy for the health support team to visualize the slow deterioration. The review of the mini mental state exam allows the professional team and the client’s family a perspective on the client's mental status. The ESAS scale allows the client and caregiver to be more aware of the changes that are occurring. It also allows the client and caregiver to be involved and understand more about the client's condition and ultimately prepare and discuss end of life care.