The patients and/or the family express their needs to the other members of the palliative care team during visits or between visits with other forms of communication. They work with the case manager nurse to devise a schedule of visits that works well for everyone involved. They keep the case manager nurse informed of any changes in their condition and of any problems that may arise. They may also be asked to keep a log of medications and/or symptoms that will help the nurse when she is doing her assessments.
They may decide they don’t want certain services. A family that has several members pitching in to provide care may decide that they want to provide all the personal care themselves and that they don’t want a home health aide to visit. Another family who is very involved in their church and is surrounded by clergy and church members may choose to decline the services of a chaplain. Conversely, they may decide to initiate these services later on. The patient and family know better than anyone what their particular needs are and it is their responsibility to make them known.
The role of the patient and family is a very important one that should not be taken lightly. It is vital to gain as much information as needed to provide safe and competent care. Read all literature that you healthcare providers give you. Be sure you understand all the medications that you or your patient is taking including what the brand and generic names are, what they are used for, and how to give them. It is also important to know the most common side effects of each on so you can recognize them if they occur. Writing this kind of information down may be helpful or you can create a binder with the information sheet that comes from the pharmacy with the medications. If there is anything you don’t understand, it is your responsibility to ask your case manager nurse for clarification.
