Invisible injuries: patient harms we hear about when we take the time to ask

Adverse event-free care or complaint-free care does not necessarily mean harm-free care for our patients

The risk of patient harms in health care is well known to most who work in health. For many years, Australian governments, agencies and health professionals have been working to reduce health care-associated adverse events and respond openly and sensitively when such events occur.1,2 However, the absence of incidents and outward signs of harm does not mean that people are not hurt by their interactions with the health care system.

Most records of harm rely on health workers reporting or patients alerting staff when things do not occur as they should. But what if harm is happening and no one notices? In 2015 and 2016 at Calvary Mater Newcastle, New South Wales, more than 30 interviews were undertaken with patients and their carers across all wards and services, seeking to understand their experience of care. A large public general hospital highly regarded in the community for its quality of care, Calvary Mater Newcastle is also the tertiary centre for most of northern NSW for cancer services, haematology, palliative care and clinical toxicology. Using the Studer Group rounding model, patients and carers were asked what had gone well for them, what had not gone well for them, and what could be improved. Some respondents replied with tired resignation about interactions that had affronted, bewildered, hurt or disappointed them.

The most poignant stories had not been raised in complaint or concern, and it seems likely that staff might never have known about these “invisible injuries” had specific questions not been asked. Three patient and carer stories in particular illustrate how painful and specific hurts can be held close to a person. One patient reported that hospital staff, wards, rooms, view, beds, food, cleanliness, facilities for visitors, patient orientation and welcome were exemplary, but also expressed her dismay that “it was as if you don’t talk to each other”; she was exhausted by having had to give her story eight times — to numerous ambulance officers, nurses, doctors and admissions staff — by the time she got to the ward. A second patient, an older straight-talking former health worker, was deeply offended when a nurse called her “mate”, a perceived assumption about her sexual orientation and a familiarity in communication which the patient knew was unintentional, just without thought. The family of a third patient was quietly angry that the doctor they were expecting to see late one day had left without visiting their dying father, and that the nurse had seemed to respond to their enquiry about their father in an uncaring manner. The nurse had misunderstood their question, and the doctor had not known that the patient’s family members were waiting to see them; when told of the family’s hurt immediately after our interview, the consultant and nurse unit manager sat with the family for a long time, kindly and gently answering all questions and changing that family’s experience of the last few days of their father’s life. It was sobering that the family’s upset at being overlooked was identified by chance. None of the patients or carers in these three instances had raised their feelings with staff.

We know that sometimes people complain when their expectations are not met, and sometimes they do not. Factors associated with lower likelihood of complaint include weariness, the fear of negatively influencing later care, and lower socio-economic status.3,4 It is possible that something else, in addition to unmet expectations, is in play to motivate someone to complain. The nature of complaints received by jurisdictional authorities suggests that the extra ingredient might be rudeness, so that a complaint results from a combination of injury and strong offence or outrage about what has occurred. Risk communication expert Peter Sandman coined the formula risk = hazard + outrage.5 Perhaps whether a patient or carer complains is a function of injury (the harm that has been done) and outrage (the patient’s or carer’s emotional response to how the harm is managed) where, even in the presence of major harm, a patient may not complain if communication around the harm is open, honest and compassionate. Conversely, a patient or carer experiencing an otherwise invisible injury may be motivated to complain if rudeness or disrespect is added to the mix. In this way it may be helpful to consider that complaint = injury × outrage.

Our use of language can harm those who seek our care in other ways, including through the uncritical assimilation of the powerful collective language we use to characterise people, actions and behaviour, famously described in Samuel Shem’s satirical novel The House of God. The idea that language is vision — the way we talk about a problem determines how we solve it — is consistent with evidence that the way people are talked about influences what they believe about themselves,6 how they are treated,7 and how policies targeting groups are formulated and implemented.8,9 Shared language used conventionally to characterise groups of people as deserving or undeserving can be obvious or subtle.10 For example, what does it mean to refer to someone as a “frequent flyer”? In early 2015, as part of service redesign to understand and address the potentially remediable social and clinical drivers of re-presentation to the emergency department, Calvary Mater Newcastle coined a new term, changing from “frequent flyer” to “VIP” (very important patient or very intensive patient). Reduced negative labelling was found to promote compassionate care. At Ballarat Health Services, people who come to the emergency department and leave without being seen are reported as “left without being seen” instead of “failed to wait” — a descriptor that suggests that blame for leaving rests with the person seeking care.

Similarly, what does it really mean to report that a patient detained under a Mental Health Act has “absconded”? The term is used in mental health legislation and in official advice from state agencies, yet the Oxford English Dictionary definition is “leave hurriedly and secretly, typically to escape from custody or avoid arrest”. Characterising a person in the care of others who has left the premises as an escapee, regardless of their level of cognitive impairment at the time, shifts responsibility from the carers to the patient. In this context, it would seem that “abscond” is an archaic term from a time when the “insane” were “inmates”. “Abscond” could be replaced by words such as “left the premises”. This would describe precisely what has occurred without ascribing blame or intent, thereby avoiding the suggestion that a person is somehow deserving of their situation. These examples show that there is value in giving attention to the invisible injuries perpetuated by the health system through our unthinking use of loaded language.

Too often in our busy working days, little attention is paid to patients’ or carers’ perceptions of our words and meaning — a sometimes catastrophic experience documented by researchers and consumers advocating for patients’ voices to be heard,11-13 and which none of us would want for our families. Professional practice requires us to consider a person’s response to our actions and words, and to reflect on habits and processes which may improve convenience for the clinician but cause inconvenience or harm to our patients. Invisible injuries for patients and carers can have lasting impacts, making a stay in hospital more difficult than it needs to be, or potentially deterring someone from seeking necessary care. Although a hospital might routinely score well on patient experience surveys, and even though health professionals might be renowned for their kind care, adverse event-free care or complaint-free care does not necessarily mean harm-free care for our patients. We need to be ever alert to hurts which patients and their carers may be harbouring painfully and without complaint.