Análisis bivariado

All the individuals in the study sample died as a result of choking. They were all potentially at risk of choking because of advanced age and/or medical conditions associated with swallowing and/or eating problems. There was evidence that coronial investigators, particularly forensic pathologists, were aware of and acknowledged the connection between medical condition and choking risk:

“Death in this case is due to accidental choking owing to underlying Huntington’s Disease, which is an expected fatal complication” (119 Autopsy report, Forensic pathologist).

“I find the deceased died from hypoxic brain injury due to aspiration of food. The cause of aspiration of food is directly linked to the eating problems deceased developed

consequential of the progression of her frontal lobe dementia” (024 Coroner’s finding).

“...people with intellectual disabilities are at higher risk of choking on food than other members of the community” (138 Autopsy report, Forensic pathologist).

Forensic pathologists have the advantage of hindsight. Risk can be

amorphous; its degree and manifestations uncertain. Forensic pathologists are presented with the expression of risk as the outcome is fixed. They have the knowledge and skills to recognise predisposing and specific physical risk factors for choking and the analytical abilities to connect these risk factors with outcomes; they have the necessary awareness for their role. Forensic pathologists care for the dead. For those caring for the living and those who experience choking who are represented here, awareness of choking, the possible risk factors, the ability to judge degree of risk, and the capacity to see connections between risk factors was challenging. The following stories illustrate that what might be obvious in death may be far more subtle in life. Awareness has to come from somewhere; Geoffrey’s and Anita’s stories give some initial insights into who needs to have awareness and how they may come by it.

Geoffrey’s and Anita’s stories: The varying awareness of at-risk adults

Geoffrey

Geoffrey, 85, was aware he had problems around eating. He “…was normally very careful when eating and ate mostly fish rather than red meat. This was apparently because he would have trouble swallowing and digesting this type of food”. His daughter “...states that when eating...her father...would often spit some of the food out into a handkerchief or similar if he began to experience difficulty in swallowing” (068 Police report). Geoffrey, an elderly gentleman in failing health, had awareness of his problems and was able to use this

that increased risk; as a consequence he was able to take action (spit out the food) to minimise the potential for harm.

Anita

Anita, 58 with a history of brain injury, intellectual disability, and

schizophrenia, did not appear to be aware of her difficulties. Her “...normal eating habit would be to stuff her mouth full of food resulting in her constant choking” (029 Finding). Anita, because of her acquired brain injury, was not able to identify that her disability (mental processing difficulties) and

behaviour created risk. In addition to her cognitive problems she may also have had sensory problems which meant she did not physically feel that she was at risk, unlike Geoffrey who seemed particularly sensitive to his

circumstances around eating. Regardless of the underlying cause of her apparent lack of awareness, Anita was reliant on others to be aware of her problems and identify their connection to her choking risk.

Even if an at-risk adult were aware that they were having difficulties, they may not be able to tell those caring for them. Medical conditions that can cause swallowing and eating problems may also be associated with communication difficulties. Clara and Maxina, whose stories will appear in more depth in the middle of the choking narrative, both experienced such difficulties. Clara (79 years old) “…suffered a stroke which had badly affected her speech and ability to swallow food…” (136 Inquest), while Maxina “...was unable to effectively communicate, She did not speak” (024 Inquest). If those supporting at-risk adults with cognitive, sensory or communication

impairment do not have the necessary knowledge to identify risk, then such lack of awareness makes Anita, Clara and Maxina even more vulnerable. Awareness of choking and its risks, either of the at-risk adult or those who support them, does not automatically mean action to mitigate risk will follow, however lack of awareness makes the likelihood of such a response less likely.

At-risk adults may or may not have awareness about their swallowing

to communicate that awareness to others. If they either cannot communicate or do not have that awareness, then they are heavily reliant on those around them. In such a scenario, carers need general knowledge about choking and its risks as well as specific knowledge about the at-risk adult’s specific

vulnerabilities to risk; they need awareness that is meaningful to their care role.

Phillip’s and Clara’s stories: The varying awareness of carers

The following stories alert us that carers, who might be expected to have awareness of choking (because of their roles and/or the environment in which they work), may not. They might not have the awareness or skills to recognise predisposing and specific factors that increase choking risk. If they do have knowledge it might be fragmented or they may have trouble making meaningful connections between risk factors.

Phillip

Eighty-year-old Phillip had dementia; struggling to care for himself, he was placed in hospital under a guardianship order. Nineteen days after his admission he was reported to be dehydrated due to poor oral intake; at the time he was on a normal ward diet (all food consistencies with no

restrictions). The coroner’s finding documented: “A preliminary assessment was undertaken [by a Dietitian, 16 days after admission] however a full dietary assessment was not conducted due to higher priority patients”. Three days later, 19 days after admission, Phillip was: “Reported to be

dehydrated…He was encouraged to drink fluids”. On his 23rd _{day in hospital}

he was admitted to a ward with a higher staff-to-patient ratio and it was noted: “Tolerating moderate amount of meal, needs to be fed. Slow chewing.” The next day a nursing note mid-afternoon recorded: “...eating well but does not like chewing meat...Phillip would try a small amount but found it dry and tough. A further entry at 8.30pm records a small dietary intake, ?lack of teeth!! [question and exclamation marks part of nursing notes].” A nurse had noticed Philip’s poor dentition, however as the coroner noted: “No change was made to the deceased’s diet.” Phillip continued to receive a full ward diet

(no modification to compensate for his difficulties) and the next day he was served chicken for lunch, on which he choked and died. The forensic

pathologist reported: “Few remaining teeth in both upper and lower jaw were evident only as carious stumps. No dentures present” (229 Finding).

Because of his illness, Phillip was reliant on others to help protect him from the risk of choking. In order to protect Phillip, his carers needed to be aware of the possibility of general and specific factors that increased risk. Dementia, dental inadequacy, and advanced age are all ‘known’ risk factors for choking (Cleary & Hopper, 2010; Kramarow et al., 2014; Mittleman & Wetli, 1982). But known by whom? When it was noticed that Phillip was having specific difficulties (namely slow to eat and chew; both likely related to his dental problems), these difficulties, combined with dementia and advanced age, did not appear to trigger sufficient concern to prompt further investigation or action beyond basic documentation.

Phillip’s story seems characterised by both a lack of awareness and a lack of appropriate action. Even when his poor dentition was identified there was no attempt to modify Phillip’s food to compensate for his difficulties or enhance his comfort or pleasure while eating. Lack of awareness, combined with a failure to identify and adequately investigate his physical problems,

contributed to Phillip’s fatal choking. The social phenomena surrounding Phillip’s choking however were complex.

Phillip had been struggling to cope with the effects of his dementia; he was restless, agitated and violent at times. Staff would undoubtedly have been coping with Phillip’s multiple, complex needs. Resource constraints at the hospital made assessment of his eating and drinking (which might have enhanced awareness and knowledge) a low priority. The coroner found: “...there was a failure by the hospital to undertake and document an

appropriate dietary assessment of the deceased’s needs. Further, a failure by the hospital to accommodate his dietary needs [after documentation of lack of dentition]...resulted in the deceased dying from acute asphyxiation following the inhalation and impaction of a piece of meat on the back of his

throat.” Without the overt identification of risk, there was no opportunity for management. In acknowledging the “…regrettable lack of systematic policy to ensure an assessment occurred…” following Phillip’s death, the hospital introduced a policy that stated: “…patient’s first meal is observed by nursing staff and if any chewing/swallowing difficulties are observed the patient is referred for speech pathology assessment” (229 Finding).

While the hospital’s attempt to prevent further choking deaths through a change in policy is admirable, the concern here is that Phillip was in hospital for 23 days before nursing staff either recognised he had chewing difficulties due to poor dentition or viewed such a lack of dentition as worthy of

documentation. While staff would have been aware of his advanced age and severe dementia, they did not appear to link these predisposing factors for choking, along with the added risk of poor dentition. This suggests that care staff, even if they identify a problem with eating and drinking, may not

understand its significance and potential fatal consequences.

If Phillip had been assessed by a speech pathologist (a representative of a profession with expertise in dysphagia care as discussed in Chapters 1 and 2), the factors contributing to his choking risk may have been identified and managed. This seems to be the hope behind the hospital’s new policy, which identifies the speech pathologist as having the knowledge needed to address Phillip’s risks. The anomaly in this logic however, is that nursing staff would be the identifiers of problems and risk in the new policy; in effect acting as the gatekeepers for referral. Phillip’s story would suggest that they lacked the necessary degree of knowledge to do this effectively.

Phillip’s story highlights a number of important dimensions to awareness: What awareness is needed? Who had the awareness? Who needed the awareness?

Phillip’s story suggests that lack of staff awareness and knowledge, and a consequent lack of appropriate action, were key elements in the beginning of his story. The hospital’s response to his story, both before and after his death, would also suggest that social elements such as hospital resources

and inadequate policies also impacted on Phillip’s individual story. The presence of broader elements impacting on the beginning of choking stories is illuminated further in Clara’s story below. Clara’s circumstances differed from Phillip’s, as there seemed to be awareness and knowledge that she was at risk, yet the identification of risk still went awry. A recognised missing element in Phillip’s care, a speech pathology assessment, was a part of Clara’s story.

Clara

Clara had suffered a stroke. Strokes potentially predispose people to

swallowing problems and choking risk (Finestone et al., 1998). Clara’s stroke had badly affected both her speech and ability to swallow food safely without choking. She was in a specialised Stroke Unit, where her problems with swallowing had been identified and assessed by a speech pathologist. In addition, there was a general dysphagia management protocol in place in the Unit, which required patients never to be left alone with food or drinks.

Despite her dysphagia, Clara’s risk of choking and fatality should have been minimised because of the apparently high level of awareness of her

difficulties and their relationship to risk. Her story however illustrates that there may be different types and levels of awareness relevant to choking risk. Clara had originally been prescribed a vitamised diet (all food pureed), but after a review by the speech pathologist she was reassessed to see if she could manage a soft TM diet meal (the requirement being that food is soft, moist and cut up into small pieces38_{). Clare was however unable to manage}

food of this consistency. As she had failed to cope with the soft diet meal when she was re-assessed, she was prescribed a minced and moist diet (all food soft and moist, but minced, making the particle size of the food very small). A misunderstanding by kitchen staff however meant she was served a soft diet meal (instead of the required minced/moist meal) the night she died. The nurse on duty, having not checked the progress notes detailing which diet she was meant to be having, did not pick up the mistake and did not

identify at the time of eating that Clara could not cope with the meal due to her dysphagia. The nurse did however identify some risks which she addressed.

The coroner at inquest summarised the nurse’s statement, illuminating the problem staff have in identifying all relevant factors that contribute to risk: “...RN assisted by sitting deceased up”. There appeared to be an awareness that Clara needed to sit upright to eat safely, showing an identification or knowledge of the risk of poor positioning. “Evidently the deceased then attempted to feed herself but RN could see that she was having difficulty. RN told me [the coroner] that she cut the chicken off the bone into bite-size pieces so that all deceased had to do was pick it up with the fork and feed herself. RN told me that the deceased appeared to cope with this”. The RN identified that Clara was having manual difficulties cutting the food which she addressed, but failed to see other difficulties associated with the actual eating of the meal, such as Clara placing large amounts of food on her fork,

pocketing food in her cheek, and failing to swallow food placed on the

paralysed side of her mouth, which were characteristics which made it unsafe for her to eat a soft diet and which had been earlier identified by the speech pathologist. “RN then left the deceased; I take it alone to perform other duties” (136 Inquest, coroner’s summary).

Clara was receiving care in a designated Stroke Unit where one might expect a high degree of awareness of the common problems of stroke such as dysphagia and its possible consequences. Unlike Phillip, Clara’s difficulties had been identified and assessed by a speech pathologist and were being regularly reviewed. Communication strategies (progress notes) and protocols (not leaving the person alone with food) were in place to assist in raising and maintaining awareness of problems. Clara was reliant on her carer being aware of the importance of being informed and following protocols. She also needed her carer to be aware of not just general risk (theoretical awareness) but to be able to identify specific factors (practical awareness) that put her at risk in the moment.

Clara’s story serves to illuminate that awareness of problems and risk could not be superficial (a general knowing that the person had problems and was at risk); awareness had to be grounded in everyday events and an

understanding that risk might be created by a web of factors, not just one factor at any one meal. If swallowing problems and their risks were not

recognised and monitored at every meal the consequences could be fatal, as they proved in Clara’s case. Awareness needed to be ongoing and adjust to changing conditions.

Clara’s attending RN did recognise some risks, namely that Clara likely had difficulties cutting up food and positioning herself effectively for eating because of her stroke. However some awareness was not enough; Clara’s RN needed more in-depth knowledge. Acknowledging this, the coroner recommended: “...that the hospital ensure that nursing staff, who are caring for patients with swallowing disorders, fully understand the risk factors associated with the individual patients in their care so as to enable them to more readily identify situations in which a patient has been provided with a meal of inappropriate consistency” (136 Inquest, coroner’s recommendation). Embedded in the coroner’s comment that nursing staff should “…fully

understand the risk factors…” are perhaps two more dimensions necessary for awareness; that awareness is considered of value and is dynamic, in order that carers be alert to new knowledge about concerns that may arise. The RN did not read the progress notes, which formed part of the

communication protocol to ensure up to date information was integrated into awareness. If she had she would have been aware that the meal she served Clara was not the recommended texture for her safety, but the environment also impacted on awareness: “Lack of time and opportunity was one reason advanced in justification of this attitude. The notion expressed in this Inquest that perhaps nursing staff should actually read the progress notes at the beginning of a new shift was treated almost as if the suggestion bordered on the heretical. I was not impressed by this attitude” (136 Inquest, coroner’s comments).

The coroner also noted: “The evidence demonstrated that there is a

widespread perception among the nursing staff in this ward that there is no need to consult the progress notes at the commencement of a shift, but rather to rely on the verbal handover and the handover board” (136 Inquest). Seemingly, nursing staff were not abandoning the need for awareness but were rejecting the recommended communication channel. Using verbal handover and a summary board put awareness potentially at the mercy of a reporting staff member’s memory or their perception of the importance of multiple pieces of information. The poor awareness present in Clara’s story was not just about specific issues related to choking (identifying risk factors) but more general concerns related to the importance of documentation following processes and time constraints.

The expectation that nursing staff or indeed any staff have the requisite depth of knowledge and associated skill-set to recognise difficulties that could lead to choking may be ill-founded and an underlying issue in many people’s stories. Swallowing problems are a primary risk for choking, but their