Self-advocacy: knowing and doing what’s right for you

07 Nov 2022

By Luan Lawrenson-Woods.

Self-advocacy is when you effectively communicate, negotiate or assert your needs, wants, interests and rights to others (VanReusen et al., 1994). When it comes to your health, self-advocacy is when you advocate for yourself with healthcare professionals (HCPs). That can involve respectfully questioning or challenging the care/treatment/advice that is provided or recommended, or letting your HCP know what your needs, expectations and hopes are. It’s also knowing the role of different HCPs, what you’re entitled to and how to navigate the health system.

Self-advocating for your health can simply be asking your healthcare professional a question or going to see your GP because something doesn’t feel ‘right’.

Nicole Cooper advocates for patient-centred care “where the patient is acknowledged as an individual with unique needs and values and folded into a collaborative decision-making process together with their care team”. In 2017 Nicole was diagnosed with inoperable and terminal stage 4 bowel cancer. At first, she was dismissed by a ‘covering’ GP but persisted and returned to see her regular GP because she “didn’t feel right” and was constantly tired, which she knew wasn’t normal for her. “The medical system is not necessarily setup to empower patients to know their own body and to feel like they can pursue a sense or a gut feeling”, she says.

Nicole continued to self-advocate as she sought treatment options. Initially she was given a prognosis of 18/24 months with a palliative treatment plan to extend her life as the intent of that treatment. “When I sought a second opinion, the intent was different. Then the intent was to create an opportunity for me to overcome the disease and the way it was presenting in my body. And when the intent changes, the treatment changes”.

Nicole believes that questioning the intent of any treatment, procedure or surgery recommended by an HCP is key to self-advocacy and being active in your medical care, which she continues to do so five years on since her initial diagnosis. Questioning an HCP is not always easy, particularly if your concerns are being dismissed, however you are entitled to a second opinion.

Second opinion – You have the right to a second opinion. A second opinion can help you make an informed decision about your care. That doesn’t always mean you are looking for a different opinion. Sometimes a second opinion can confirm what has already been recommended for you and give you confidence in your care. Your GP or specialist can give you a referral to see another HCP.

You can be respectfully assertive when self-advocating. Even so, you might feel like you’re being confrontational when you ask questions, but you are entitled to understand what care you're getting and why a particular treatment or test has been recommended. It can help to write down your questions beforehand. You can ask your HCP things like:

  • What makes this the preferred option?
  • What outcomes are you expecting?
  • What will happen if I don’t have this treatment?
  • What side effects can I expect?
  • What is this test going to tell us?

You can also ask why they’re not recommending a treatment, procedure, scan, or test for you and explore other options.

If you still want more information, you don’t feel your question has been answered, or you’re unsure of what’s being said, you can ask them to explain in more detail and follow-up with more questions. HCPs have a duty to communicate information in a way that you’ll understand so that you can give informed consent.

Informed consent - “Informed consent is when a patient voluntarily makes a decision about their medical care with knowledge and understanding of the benefits and potential risks involved” (RACGP). For procedures like surgery, a surgeon must “ensure informed consent has been obtained from the patient (or substitute decision-maker) before undertaking elective operations or procedures and whenever possible in an emergency” (RACS).

The Royal Australasian College of Surgeons (RACS) recommend that consent is in writing and signed by the patient. If you are unsure of anything that is on your informed consent form, you can ask for clarification, including the explanation of any medical terms that you’re not familiar with. Additionally, you shouldn’t feel pressure to consent to treatments like surgery, for example, without the opportunity to consider your options (where possible). In an Instagram Live Q&A with Pink Hope, Dr Kylie Snook, specialist breast surgeon and VP of BreastSurgANZ, said she rarely performs a breast reconstruction after one consult as there’s so much to be considered. Ask your surgeon about all the options that are available to you, so that you can make an informed decision. This includes considering any costs that may be involved. Surgeons and other HCPs need informed financial consent.

Informed financial consent – HCPS are required to tell you upfront about their costs, whether that’s for an appointment, treatment or surgery. If they can’t provide a specific cost, they should provide a quote. This needs to include their costs, what will be rebated by Medicare and make clear any ‘out-of-pocket’ costs or ‘gap’ that you need to pay. They also need to tell you if there will be costs from other HCPs who will be involved in your treatment (for example, a co-surgeon or anaesthetist for surgery).

As with informed consent, if you are unsure of what is being quoted, you can ask for clarification, and you can ask for it in writing.

It can be hard to self-advocate with HCPs as there’s often an imbalance of knowledge and power: you are knowledgeable about yourself and your body; HCPs are knowledgeable about their professional field and will make decisions about your care. You may also feel vulnerable emotionally if you’re receiving upsetting information and discussing distressing topics, or physically vulnerable if you are having an examination, scan or procedure. There can also be a difference in emotional investment. While a good HCP is empathetic, for a patient it’s highly personal and potentially life changing. That means that you might have heightened emotions when consulting with your HCP. Respectful communication is key to self-advocacy, but a good HCP will recognise that sometimes patients might not be communicating effectively in a medical setting. RACS, for example, acknowledge that in the patient/surgeon dynamic, “sensitivity should be given when patients may be sick, injured or traumatised, or along with their relatives, feel anxious about a procedure. Clarity and simplicity in language is recommended”. You might not feel comfortable advocating in person, face-to-face – that’s OK! You can write, email, or call them or their office afterwards if you prefer.

Being your own health advocate doesn’t mean that you don’t trust your HCP, it means that you’re active in your healthcare and treatment; that you’re making informed decisions and can be reassured about your care. You can respectfully question your HCP, and they should equally be respectful when responding. No question is a silly question. And if you don’t want to ask any questions, that’s OK too. Self-advocacy is about knowing and doing what’s right for you.

Read about how Katy self-advocated and continues to do so! 

Read about how you can get to know what’s normal for breasts.