Speaking Out

Some tips to help you be an effective advocate on behalf of your loved one.

Being an advocate means helping to articulate your loved one’s needs and desires. To do that, you should be prepared to take the initiative and work actively alongside the health care team.

Use these tools to help your loved one get the necessary information, support, and care.

  1. Become educated
  2. Discuss your loved one’s personal wishes
  3. Prepare for doctor’s appointments
  4. Schedule regular discussions with all care team members
  5. Take steps to prevent medical errors
  6. Get “backup”

1) Become Educated

  • Research suggests that patients who educate themselves on their condition get better results from doctors. As a caregiver, you may need to step in for your loved one in this regard, so learn all you can in order to explore treatment options knowledgeably.
  • Ask the doctor for books, videotapes, or other materials that explain your loved one’s condition and treatment.
  • Get information from condition-specific organizations, such as the Alzheimer’s Association and the American Heart Association.
  • Speak up if you have questions or concerns. You have a right to question anyone involved with your loved one’s care.

2) Discuss Your Loved One’s Personal Wishes

Before meeting with the doctor, get firm answers to the following questions. Go over these issues as early as possible, and consult a lawyer about living wills, durable powers of attorney for health care, and other documents that can formalize your loved one’s wishes.

  • Who should make medical decisions if your loved one cannot?
  • What kind of medical intervention does your loved one want? Under what circumstances should heroic measures not be taken?
  • What medications or procedures should be avoided?
  • What is your loved one’s attitude toward pain management? What are his or her preferences when it comes to procedures like long-term sedation?
  • What worries or fears does your loved one have?
  • What type of end-of-life care would your loved one prefer?
  • What are his or her spiritual needs or requests?

3) Prepare For Doctor’s Appointments

Before each meeting with the doctor, make a list of issues you want to discuss. Write down questions in advance and make sure you have a pen and paper handy to take notes and record the doctor’s answers.

Consider asking the following types of questions:

  • Can you explain the illness in non-medical terms? Where can I find more information?
  • How has the situation changed since the last appointment?
  • Are more tests required? A second opinion?
  • What treatment options are available? What do you recommend? Are there alternatives?
  • What are the side effects of these treatments?
  • What would occur without any treatment?
  • What changes do you expect in the next three months? Six? A year?
  • What are the side effects of prescriptions?
  • Is there a home health agency you can recommend? When would a referral be necessary?
  • How can you be reached? If you are unavailable, whom should we contact?
  • What steps should we take in case of emergency? What is the likelihood of such an event?
  • What are the next steps in the procedure or diagnosis?

The following techniques can also help you get the most out of encounters with your loved one’s physician:

  • Keep in mind that most appointments are scheduled for 15 minutes. Ask for more time in advance, adding that you are willing to pay if necessary.
  • Continue the discussion until you are sure about the diagnosis, treatment plan, medications, and the next appointment.
  • Consider repeating something back to the doctor and asking, “Is that right?” This helps ensure mutual understanding, and it may also help the doctor realize that he or she has left something out.
  • If you’re feeling rushed or uncomfortable, make sure that the doctor understands this.
  • Follow up with a phone call or even a quick return visit if there’s anything you forgot to ask, or if you think of additional questions.
  • Keep a record of all discussions.

4) Schedule Regular Discussions With All Care Team Members

A health care team may include: a primary doctor, specialists, assistants, nurses, health aides, therapists, family, and friends. In cases of complicated illness, you may want to draw these people together for a “heath care conference” that will get everyone on the same page. In any case, take advantage of opportunities to address the following questions about the functions of the health care team.

  • Who are the specialists involved in your loved one’s care, and what is the process of referral?
  • Who can be contacted with questions and concerns?
  • In emergencies, who should be contacted first?
  • What about alternative care (including acupuncturists, chiropractors, massage therapists and herbal remedies)? Does the doctor work with these kinds of services? Does insurance cover them?
  • Can your loved one be admitted to the hospital of his or her choice? (Certain doctors, specialists, and nurses only work with certain hospitals.)
  • What relationships does the health care team have with home health agencies, hospice services, or long-term care facilities? Who can make recommendations?
  • Are there problems or symptoms that the doctor hasn’t asked about?

Also make sure that everyone is aware of your loved one’s important health information. Don’t assume all members of the health care team know everything they need to.

5) Take Steps To Prevent Medical Errors

The following steps can help reduce the chances of medical errors. The most important step, of course, is to be as active and involved in decisions as possible.

  • Make sure the doctors know about all medications your loved one is taking, including over-the-counter drugs, vitamins, and herbs.
  • Make sure the doctor knows about any relevant allergies.
  • When the doctor writes a prescription, make sure you can read it. If you can’t, a pharmacist might not be able to either.
  • When picking up a prescription, make sure it’s the right medicine.
  • If you have any questions about the directions on medicine labels, ask.
  • If possible, choose a hospital where many patients have had the procedure or surgery your loved one needs.
  • Ask all health care workers who have direct contact with your loved one whether they have washed their hands.
  • When your loved one is discharged from the hospital, ask the doctor to explain the treatment plan that he or she will use at home.
  • It’s a good idea to find out why a test or treatment is needed and how it can help. Your loved one could be better off without it.
  • If your loved one had a test, and you haven’t heard back from the doctor, don’t assume that no news is good news. Ask about the results.
  • Ask the doctor if your loved one’s treatment is based on the latest medical studies and evidence.

6) Get “Backup”

If you are unable to make headway on your own, look for professional advocates within the system. Most health care facilities have resource persons such as social workers, patient advocates, chaplains, and nurses who will work on your behalf and help clarify any concerns.

© Copyright FamilyCare America, Inc. All Rights Reserved.

Portions of the above have been adapted from “20 Tips To Help Prevent Medical Errors,” AHRQ Publication No. 00-PO38, developed by the United States Agency for Healthcare Research and Quality.

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