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The Role of the Patient and Family in the Palliative Care Team

Your Rights and Responsibilities

By

Updated August 20, 2008

The patient and/or their family are considered the “head” of the palliative care team. Most of the day to day care falls to the patient or their loved ones. This puts you, as the patient or loved one, in a position to be the most familiar with progress of the illness, the signs and symptoms of pain or discomfort, and to know what the specific needs are.

You are responsible for expressing your needs to the other members of the palliative care team during visits or between visits with other forms of communication. You will work with the case manager nurse to devise a schedule of visits that works well for everyone involved. It's important that you keep the case manager nurse informed of any changes in condition and of any problems that may arise. You may also be asked to keep a log of medications and/or symptoms that will help the nurse when she is doing her assessments.

It's your right to decide against certain services. If yours is a family that has several members pitching in to provide care, you may decide that you don’t want a home health aide to visit. If yours is a family who is very involved in a church and is surrounded by clergy and church members, you may choose to decline the services of a chaplain. You have the right to change your mind at any time and can initiate these services later on. You know better than anyone what your particular needs are and it's your job to make them known.

Your role as part of the palliative care team is a very important one that should not be taken lightly. It is important that you gather as much information as you can to provide safe and competent care. Read all the literature that your health care providers give you.

Be sure you understand all the medications that are prescribed, including what the brand names 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. It's difficult to remember all the information that's thrown at you so you may want to consider writing everything down. I had a patient once who created a binder with the medication information sheet that came from the pharmacy. Find a method that works for you so you will have a point of reference when you need one. If there is anything you don’t understand, it's important to ask your case manager nurse for clarification.

Working together with the other members of the palliative care team will help you feel confident in the care you are receiving. As with every health care decision, it's important to be as informed and involved as possible to ensure the best care possible.

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