Advocating for Treatment

Nurse laughing with senior

“How do I get the doctor to listen to me? No one seems to be paying attention.”

You may feel isolated and not included in the professional care your loved one is getting. To advocate for your loved one, you need to be assertive and know your rights. Find ways to partner with your family member and build bridges with professionals.

The health care system has gaps and shortages. It can be difficult to navigate and is not always open to family members’ wisdom and ideas. Don’t give up! You can make a difference in the care  your loved one receives.

Things to Seriously Consider

Advocacy is a healthy response to feelings of helplessness.

  • Help your loved one access services.
  • Help improve services and access for others.
  • Help yourself feel better.

Many family members say that advocating helped them be more confident and find meaning in life. Advocating will give you a positive place to put your energy.

Be aware of professional standards.

  • Visit the websites of professional associations.
  • Ask professionals how you can be included.
  • Understand rules about confidentiality.

Talk to your loved one about how she would like you to be included. Get the decision in writing. Ask professionals to provide a consent form that can be signed and kept on file.

Identify yourself and your relationship to the patient or client. Ask how you can be helpful. Ask many questions when speaking to doctors and other professionals involved in your loved one’s care. Who should be contacted if there is a crisis before the next appointment? Who will be doing followup? Will the doctor be communicating with the other workers, or will that be up to you or your loved one to coordinate? Has medication been prescribed? What are the possible side effects you should watch out for? When is the next appointment?

Write letters or send notes to be read by your loved one’s workers. This provides important information that can become a part of your loved one’s medical file. It also helps you focus your thoughts and state your position. Keep copies of all documents. Make sure everything is dated and organized.

Look for professionals who are open to including families.

  • Shop around.
  • Get second opinions.
  • Make formal complaints.

When shopping around, ask professionals how they see the role of the family. Keep in mind that in rural areas and in emergencies, you may not have a choice. Ask: “Is the agency accredited by any reviewing body?” If so, the agency probably has to follow certain standards regarding family involvement (see www.cchsa.ca).

You have the right to contact the worker’s supervisor or get a second opinion. Put complaints in writing and ask about complaint policies.

If your family member is in the hospital, ask about the Patient Advocate or Patient Council (http://www.ppao.gov.on.ca).

Keep your emotions in check.

  • Don’t let past negative experiences get in the way.
  • Stay calm, cool and constructive.

When families seek help in times of crisis, professionals may appear insensitive or slow to respond. Don’t judge this worker or others on the basis of one experience. Keep trying.

Always show professionals that you think rationally so they will take you seriously. Avoid blaming and criticizing. Stick with what you want, rather than what you don’t want. Learn to express your position in positive ways. It may help to take an assertiveness or communication skills course.

Be a learner and a teacher.

You will connect with a lot of professionals. Here are some things you can do:

  • Invite professionals to talk to your support group.
  • Ask them to educate you about services for family members.
  • Offer them information you have gained.
  • Learn about their jobs and responsibilities. Also, take time to educate yourself about the recommended treatments and medications.

Advocating skills can be developed with practice and support.

  • Develop a list of your rights.
  • Remember that you and your loved one are in charge of what kind of treatment you will receive.

Develop your own “charter of rights.” Include assertive statements like:

“I have a right to be heard and treated with respect.”

“I have a right to pass on information to my husband’s doctor.”

“I have a right to be consulted before my son is discharged into my care.”

“I have a right to help my daughter shop around if she is not getting the care she needs.”

Post these rights as a reminder!

You get whatever quality of treatment you insist upon or are willing to accept. The ill individual receives better treatment and has a more successful rehabilitation when families and professionals work together.