I took a deep breath: “Stay calm.” I knew I had the staff in defensive mode. All I had done was ask them to wash their hands before touching my child. Now my reputation was made: difficult parent.
I had only requested what patient safety organizations recommend, but by this small gesture, I had potentially disrupted the relationship with the person providing care. If I was lucky, the person might reply “thank you for the reminder.” If I was unlucky, then I had caused a small moment of irritation and humiliation, and I would now be labelled a difficult parent to the possible detriment of my child’s care.
#thatparent is sometimes used by parents of children who find themselves labelled as difficult because of the advocacy position they take when interacting with the health–care system. The expectation of many health-care providers is that parents should stay in their lane and be the “good” parent – polite, obedient, never questioning except to ask to clarify recommendations.
I am lucky, as a parent, that I have had (bar the handwashing incident) mostly positive interactions with the health–care system. But what happens when you are the parent of a child with complex health–care needs? Or any parent who questions the recommendation or diagnosis of the health–care provider?
Social media posts tell stories of parents struggling with needing to advocate within the health–care system. Parents of children with multiple conditions or rare diseases often will know more about their child’s condition than the majority of the health–care providers they will interact with. That they find their knowledge and experience disregarded is unacceptable and detrimental to both themselves and to the care their child receives.
It is a hard enough job to be one of these parents; why then do we make them feel uncomfortable for trying to be the best parents to their children? Lisa Wadden posts of knowing something was wrong with her baby. Several appointments later, repeatedly being told nothing was wrong, they found themselves in the ER with a child who was in heart failure. It took just one person who really listened, a health–care provider who respected the knowledge of this parent, to turn things around.
Miranda Fricker coined the term testimonial injustice when describing how because of who we are – in this case, lowly parents – knowledge is devalued and sometimes disregarded. In the words of Trudy Govier, parents have a “rhetorical disadvantage.” Parents’ information is disregarded because they are parents and not because of the value of the information they are sharing. The harm that occurs is not only epistemological but may lead to significant harm to patients.
We see the same issue at a system level. The Patient Experience Library’s Miles Sibley describes the double standard that exists when patients or their families identify an issue in care. A patient “complains” but a doctor “reports” an incident; professional “records” versus patient “stories.” Systemically, we give less value to the information provided by patients and their families. Information that may well be crucial for safe care.
Julie Drury, a patient advocate (a role she acquired because of her daughter Kate’s experience of a rare disease) points out that parents have an incredible amount of knowledge about their children’s conditions and that parents of children with complex health needs develop expertise in managing an increasingly complex and fragmented health–care system. Advocating for Kate led to 30 policy changes that improved care in a children’s hospital. 30! What if Drury had not spoken? And what if the system had not listened? When parents’ knowledge is heard and respected, improvements in care can occur.
Rosamond Rhodes, a bioethicist, writes how being a healthcare provider, be it doctor, nurses or other, anoints the provider. Their professions entitle them to power and privilege. In their work, they seek our trust (as they poke and prod, examine and cut, pronounce themselves and make decisions) and we imbue them with trust. This trust is earned by the expectation that they will do good for us, that they will care, be respectful and be competent. Trust is dynamic and exists within relationships. When health–care providers show a lack of respect by labelling parents who are advocating as difficult or by discounting their information – an act of testimonial injustice – they decrease trust in our institutions. It only takes a few negative interactions to destroy trust but will take many positive ones to rebuild it.
For health–care providers and institutions to maintain trust, they must respect the information and knowledge shared by patients and their families. Angie Hamson, vice-chair of the family advisory council at the Children’s Hospital of Eastern Ontario, reminds health–care providers that hospital admission can be a traumatic experience for both children and their families. It is not surprising that at times, #thatparent may be emotional, impolite, angry, frustrated with individual health–care providers and with the system. It does not mean that what they have to say is not true.
When patients or parents (who speak for their children) advocate, health–care providers and the health–care system need to respectfully listen. Otherwise, the stigmatization of #thatparent leads to a loss of important information and to a degradation of trust and, in some cases, direct patient harm. In the words of Dr. Brian Goldman “without #thatparent, healthcare will never improve.”