Canadian Family Physician “Palliative care for patients with communication and cognitive difficulties, lists 5 helpful practices that be both patients and workers involved.
It is essential to introduce palliative care to patients early and often. While this is very important to benefit the patient, it is a tricky line to walk. You do not want to give the assumption that you are “giving up” which many patients may think. If this happens redirect them to what palliative care actually is.
Introducing palliative care early allows for a relationship to be made between everyone, this is vital in creating a space where everyone’s wants and needs can be met. This can look as simple as filling out an Advanced Directive, this allows for some legal claim to the patient's wishes. One study showed that in a developmental center in the US on 2 out of 850 people had an AD filled out (Sue, Mazzotta, Grier, 2019).
When a patient has an ID that impact the way that the communicate with others, there becomes an issue with diagnosing and recognizing symptoms. Clinical Assessment and Diagnosis in Social Work Practice says that when someone with ID has a hard time expressing their communication many “rely on reports from family, friends, or professional (Dababnah and Fuld, 2023)."
This is very important to know and understand, if a patient cannot express themselves then you may turn to additional people for support. BUT, there must be an attempt made first to speak with patient themselves. This can be especially difficult for patients with mood disorders, attempting multiple conversations will allow for best understanding of patients needs.
* The Disability Distress Assessment and the Abbey Scale are two great resources to use for symptom management.
When it comes to the time to speak with the patient and family about treatment options is it imperative to be truthful and honest, as best one can. The PC team should strive to inform everyone involved with all of the details of the treatment plan. Obviously, there may need to be some adjustments made, as many people who are not medically trained will be rightfully confused when large terms and ideas are being thrown around. After options for treatment are laid out on the table there should be a very honest and thoughtful conversation about if the treatment is feasible for the patient.
Some patients may not be able to handle long periods of treatment at a time, some my physically not be able to stand the treatment, or some patients might not fully understand the treatment which can cause issues. From here patients, family members, and the whole PC team should speak candidly about whether or not the patients Quality of Life will be improved after treatment. This can turn into a more private family discussion once all treatment plans are known.
It is not a shocking thought that communication would be an essential part to someone’s medical care. But you can imagine that someone going through PC who also has a disability would rely on adequate communication even more. It is essential that PC team members are clearly explain in whatever means necessary for patient understanding. Some good resources are:
Last but not least on the list of helpful practices is the topic of grief. It is obvious that when palliative care is brought into conversation grief is close behind. It is so important to create open spaces for patients, family members, caregivers, etc. to grieve individually and as a group. As a PC worker you should meet with family members and caregivers individually in order to get their honest feelings, without them fearing being vulnerable near the patient when they are seen as a “brave face”. And it is especially important for there to me multiple ways for patients to express their emotions.
In Creativity and the analytic condition by Eimir McGrath, we see the importance of alternative therapies for therapeutic reasons. “The use of rhythm and music, dance, movement, dress up, role play, messy play with paint, and creating images with clay are all examples of bringing lived experience into safety (McGrath, 2018). PC team workers should allow for any and all type of therapy to be used in order to express the grief patients are going through. It is easy to make assumptions about a patient not grieving if they are not verbally saying they’re upset, PC teams must work around this to help through this painful ongoing stage.
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