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I agree that basic education about the disease process is important. But, a search (even just the basic search) on the internet will reveal that there are tons of sites that provide this basic information. There are also pamphlets - too many to count - that give basic information.
Patient education, ultimately is the job of the health care team (doctor, nurses, and support staff) which can be augmented by the assistance of the family. What I see as an important need is specific individualized patient centered education. This is where the family is vitally important. By going with the patient to appointments, actively listening to what is being said, getting questions clarified from the medical team, etc. is the MOST important part the family could play. You stated that your family member was not taking her medication as prescribed due to a lack of education. Talking with the patient about all aspects of her treatment plan would have made you more aware of how she felt about her meds sooner, rather then later. Bringing this up with the medical team would have provided an opportunity to expand on education about meds. That's why the family is so important. Often times the patient will tell their family something that they would never tell the medical team.
I think you believe this is an area where improvement is needed. I have over 30 years of being an RN. I viewed an important part of my job was to education the patient and the family about the disease process the patient was experiencing and teaching the family what they could do to make this process functional, effective, and helpful. What we really need is someone to take the family aside and explain how their role is a vital part of the patient receiving optimal treatment. I get the feeling this was not provide to you or your family. You might want to bring this up with your loved one's medical team so they can improve their process of how patients and families are treated.
I did look at your website and really am not sure how this is going to fill “any hole” in education. No, we do not need yet one more pamphlet or web site to improving the "basic education".
In my opinion we need to get family members and loved ones of the patient to be more involved. You stated that cancer has affected your lives in major ways. I think if that is true then you need to be more involved in the treatment process by being present, aware, and participating in your loved ones care.
Take GOoD care