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Health Advocates: Someone by your side

All Canadians who use the health care system require advocacy on their behalf. Advocacy means asking for help, communicating with health care providers, and insisting on getting fair and equitable treatment. Most of the time, you are your own advocate. You likely don’t need help when it comes to having a minor problem treated, describing your symptoms, understanding your doctor’s advice, or picking up a prescription. However, if the problem is something major, like cancer, you may need emotional support as you cope with each stage of your illness. Appointing a health advocate can make your health care experience more manageable and less emotionally burdensome.

Your advocate can’t be just anyone
Knowing when to seek an advocate
Effective advocacy affects your health outcome
Dos and don’ts for your health advocate
Making sure you don’t fall through the gaps

Your advocate can’t be just anyone

A good health advocate must have the time, ability, and motivation to help you, and should be someone that you trust. Spouses, friends, and family members are obvious choices—but make sure the person you choose is ready to take this journey with you.

Some hospitals have on-staff patient advocates that work within the hospital system to provide you with support and assistance during your stay. If there is a community association related to your condition, you may be able to find experienced, well-informed advocates there too. When it comes to your medications, your pharmacist is a surprisingly important advocate. He may even be willing to work with your doctor to avoid drug interactions and adverse effects.

Above all, your health advocate should be someone who is dedicated to making sure you get the best care possible. Assertiveness is a good trait for an advocate; a hot temper is not.

Knowing when to seek an advocate

Ideally, you will already know who your advocate is going to be. If you still haven’t found one, or if you are experiencing one of the following scenarios, it may mean that it’s time to start the search:

• If you are having difficulty understanding, remembering, or keeping track of the information, recommendations, or directions your doctor is communicating to you (especially if you are having trouble keeping track of your treatments, including medications), then don’t delay in finding yourself an advocate.
• If you suspect that you may be diagnosed with a serious or chronic condition, get an advocate involved right away. If the news is bad, you will be glad he or she is there to support you. If you receive good news, you can celebrate together!

The government might be able to help if you are unable to locate a health advocate. For example, you may be able to enlist the help of a community health services worker through your health authority—though different rules and criteria apply in different provinces. To find out more, look up your health authority in the provincial guide, and contact them to find out what services are available to you.

Effective advocacy affects your health outcome

Knowing the ins and outs of advocacy can help you and your health advocate obtain the proper medical attention.

Clear communication matters; an advocate can voice your needs. Effective communication often takes creativity, persistence, and assertiveness—not always easy when you aren’t feeling well. Your advocate is there to speak up on your behalf, and to provide relevant information to your health care provider(s), helping ensure that your caregivers respond to your unique circumstances in a timely manner.

Sorting through important information counts; an advocate can manage the details. After being diagnosed with a life-threatening illness, the information that follows can be difficult to remember as you process the news. Less shocking diagnoses can still result in a flood of information that is difficult to absorb and understand. Doctors are experts in diagnosing and treating medical ailments; but not all doctors are experts when it comes to explaining conditions or treatment options in terms you understand. Your health advocate is your second set of ears, and is there to take notes, catch crucial details that you missed, or even come up with a different interpretation of what was said.

Planning for your health is worth it; an advocate can organize your care. Complex treatment plans can be very difficult for one person to manage, especially if you are slowed down by your disease or by the side effects of your treatment. Your health advocate can help you re-organize your house to accommodate your condition and can get you to and from your appointments. Your advocate is also there to help you with unexpected details that accompany a new diagnosis, allowing you to focus on your highest priority: getting better.

Health advocates often have a lot in common with caregivers, as they tend to share similar responsibilities. Learn about support options for caregivers and find out which skills make a good health advocate great.

Dos and don’ts for your health advocate

DO	DON'T
Know the patient’s rights. Hospitals often post these, or make them available in a brochure.	Be rude or aggressive. This will only make a situation worse, and could result in poor quality of care.
Write things down. There is usually too much information to take in all at once.	Assume that one member of the medical team knows what is going on with other team members. It’s always safer to speak up.
Be specific about what the patient needs and why. Health care providers will try their best to help if they see a need.	Exhaust yourself. Caring for a patient can be a big job—ask for help if you need it.
Watch for any good or bad changes in the patient’s symptoms and notify the appropriate health care professionals.	Be reluctant to bring up treatment options when speaking with the doctor. Knowing why a certain treatment is preferred is a patient’s right.
Ask for second opinions if there exists any doubt about treatment options.	Ever demand something when politely asking will most likely get you the answer you want.

Making sure you don’t fall through the gaps

Your health advocate is there to do many of the things the health care system cannot. In short, an advocate can help support you by:

• Being by your side if you receive bad news or holding your hand during a difficult treatment
• Letting the appropriate health care providers know about changes in your condition and about treatments prescribed by others on your care team
• Reading up on your condition and treatment options
• Critically examining your diagnosis and treatment plan(s)
• Keeping track of records, test results, and treatment history (by keeping detailed notes for you)
• Helping to organize a medication schedule
• Keeping family and friends updated on diagnoses and treatment

Finding a health advocate can help you get the care you need when you can’t do it on your own. Your advocate is your ally—someone you can trust to stay on top of the medical care you are receiving by asking the right questions, taking notes, communicating with both your care team and your loved ones, and, most importantly, keeping you informed every step of the way.

Key Websites:

• Canadian Patient Safety Institute: Tips for patients and families (requires Adobe Reader)
• Ottawa Hospital Research Institute: Patient decision aids
• Victorian Order of Nurses: Finding help and support

Related Articles:

• Accessing Your Medical Records
• Your Personal Health Record (PHR)
• Effective Complaining: Knowing how and when to voice your concerns
• Want a Second Opinion? When to get one and what to expect

References