eCampus Rural Health IN THE DIVISION OF GENERAL MEDICAL DISCIPLINES

Developing a Plan: Finding the Facts

Often, the first step in developing a plan is to gather information. Likely, you are trying to learn as much as possible about your loved-one’s medical condition.

1. Make a list of questions

We suggest you start by making a list of questions you have about your loved-one’s medical condition.

down arrow Some common questions you might start with

  • What is the name of the disease (if known)?
  • What causes it? (if known)
  • What do the tests show and what do they mean?
  • What is the prognosis in terms of life-expectancy, the ability to function, and quality of life?
  • What treatments are available and what help might available treatments offer – cure, life-prolongation, improved ability to function, improved quality-of-life?
  • What side-effects or trade-offs might be involved in using certain treatments?
  • How best can family members support a person with this particular disease?
  • What options for care exist?
  • How can you know that you are making the right decisions?

 

down arrow Get what medical facts you can from your loved-one’s providers about his or her condition (with his/her permission).

You may wish to pay particular attention to things like:

  • How sure are they about their diagnosis
  • How “serious” is his or her condition (Even for a serious disease like cancer or a stroke, some patients may have a very good prognosis and others may not.)
  • Knowing what they do about your loved-one, do they have any specific concerns about how he/she will do or how the patient’s condition may affect treatment options?
  • What options exist for where the patient might be treated – in the hospital, at home, as an outpatient, or in a nursing home?
  • If you are in a rural or highly rural area, you may not have any nursing homes close to where you live. Check with the social worker to identify the nursing homes close to your home. You may want to consider touring the nursing home ahead of time before transferring your loved there.
down arrow Want to learn more about the disease, treatment options, and how best to live with the illness?
  • Ask your medical providers for specific suggestions, such as books to read, Internet sites to visit, or local organizations that may be of help (such as the local chapter of the Alzheimer’s Association or cancer support organization).
  • Contact the major organization(s) associated with your loved-one’s disease. Most common, major diseases (such as cancer, heart, lung, or kidney disease stroke, or dementia etc.) and many rare diseases have organizations, often with local chapters whose mission is to support patients and families living with that disease. These organizations can provide good leads on reputable reading material and Internet links that they have found useful. Often, they keep up with the most recent research and developing therapies. They may also help you connect with other patients and families struggling with similar problems. Such contact may provide emotional support but also very practical advice for how best to adapt to changes resulting from the particular disease. In doing an Internet search, try typing in the name of the disease and something like, “patient support organization.” (Example: Alzheimer’s patient support organization)
  • Visit a patient library. Many hospitals and healthcare organizations have patient (and family) libraries than may provide useful information. If a librarian is available, they may be very helpful in refining your search.
  • Do an Internet search.

2. How can I assess the reliability of the sources of information?

Clinicians, especially doctors, will best be able to answer questions about your loved-one’s specific situation. Do not forget to talk with the other clinicians caring for your loved one. They too will be able to provide a lot of accurate and specific information that is directly relevant to your loved one.

down arrow You may wish to find some information on your own.

The good news is that many more resources are available for patients and families in recent years. The bad news is that there is almost too much out there! It can be difficult to find reliable information that is appropriate to your needs. Particularly in searching the Internet patients and families can become overwhelmed by medical information that is really intended for clinicians. For example, you may read information on a particular medication, which lists all sorts of side-effects, many of which are rare or rather minor. How do get the kind of information you need?

down arrow The big problem in learning about a particular illness is figuring out how reliable the information is.

Some patients and family members work very hard trying to understand every medical detail of the disease in question in hopes of finding some therapy or approach that might have been overlooked. This is very natural. However, be careful. There is always someone out there willing to tell you what to do either for a price or because they strongly believe their approach will work – even if there is not really good evidence that it will work. On the other hand, sometimes material on the web, including stories by other patients and families paints too bleak a picture. Your loved-one’s situation may be similar or very different from those you read about We would just caution you not to get too preoccupied with such a search. It is easy for most anyone to get over their heads in searching for a fix that others have not found. As importantly, in doing such searches, people may neglect other very useful information and advice on how to live with the illness (not just how to conquer it). So just be careful! You are at a vulnerable point in your lives.

 

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