Your Voice in the Healthcare System

In a world and healthcare system full of information overload, what can we do to be heard? Sometimes well-intentioned people, including healthcare providers, inadvertently devalue the person who appears disabled, causing uncertainty or unrest and dis-ease. Here are three ways to be assertive when you feel like you may not be heard, understood or valued.

First, remind yourself why your voice matters. Your voice matters because you matter! We are created by the Creator, in the image of God, and have great value and worth that He has built into us. Psalm 139 reminds us that we are not accidents in an uncaring and cold universe. “Your eyes saw my substance, being yet unformed. and in Your book they all were written, the days fashioned for me, when as yet there were none of them. How precious also are Your thoughts to me, O God! How great is the sum of them!” Your voice also matters to God, whether it’s in lament or asking for wisdom, offering thankfulness or confession. Asking for a human advocate – or anything else that is from your heart – matters.

Second, plan ahead with family or your other support so your voice is heard. Even if others address your spouse or family member instead of you. A friend told me how his wife has MS and has needed to use a wheelchair for the last year or so. Since then every time they go to a medical appointment the medical people talk to him, not her, even though she is the patient and has full capacity. My friend and his wife keep being intentional about her answering, not him, as often as needed. 

Third, share your values. Another practical way to strengthen your voice is to share your priorities with those closest to you whom you already trust, whether a family member, friend or advocate. In particular, clearly discuss your thoughts and goals with those whom you would choose to be your substitute decision maker or agent if you became unable to speak for yourself. In Ontario you can name your agent (called a “power of attorney for personal care”). This provincial government gives instructions as well as a free online kit to create your legal document. Depending on your province the details and legalities will vary. If you do make any legal documents naming an agent it is essential that you speak with them first, both to get their consent to represent you, and also to make sure they know your values and any specific wishes.

So what are we to do when our ‘voices and choices’ don’t seem to be heard or given much weight? As a hospital chaplain, I sometimes use the word picture of a train, reminding the patient that they are the conductor of the healthcare train and they need to tell the healthcare team what direction they think the train should be heading. Of course, if you aren’t used to feeling heard it may seem overwhelming to try to speak up, but it’s worth the effort, and there are usually some helpful resource people available, such as hospital chaplains, social workers, and ethicists – all who have training in advocacy and supporting patient voices.

Remember that your voice matters, because you matter. Even if sometimes those around you don’t seem to hear you or see you, keep speaking up and looking up. I have seen firsthand over the years the benefits that follow when a person’s values and goals are clearly communicated to family, friends and healthcare providers. The result will be a clearer goal of any healthcare treatment, along with more peace of mind and spirit.