Severe domestic squalor: Time to sort out the mess

Sutherland and Macfarlane (2014) have provided readers with a timely reminder of the ethical issues faced by health workers when they encounter people living in severe domestic squalor. Noting evidence for ‘high-level executive impairment in this vulnerable patient group’, they state that it is no longer acceptable to invoke respect for a right to autonomy in order to excuse clinical inaction.

Questions arise. Sutherland and Macfarlane (2014) cite research by Lee et al. (2014) when saying that ‘whether squalor has arisen via a passive decline in functioning or through an accumulation of material through hoarding … impaired frontal lobe function is almost invariably present.’ The researchers had invited clinicians to submit reports of neuropsychological assessments of referred patients who were living in squalor. Most (92.75%) of the 69 were found to have frontal executive dysfunction. However, this was a selected sample. Data were available only if patients complied with the assessment process. Two thirds were inpatients at the time of assessment.

Commonly, people living in squalor decline offers of assessment by clinicians and refuse entry even to those willing to help in cleaning up the mess, garbage, rubbish and filth (examples of squalor situations are referenced by Snowdon et al., 2012). Those declining assessments might be even more frontally impaired than those agreeing to psychological testing. Psychiatric assessment of those living in severe squalor has shown that nearly all have mental illnesses that can be associated with frontal lobe changes – in particular, schizophrenia, substance-related brain damage (attributable to alcohol and/or other drugs) and neurodegenerative dementia (Snowdon et al., 2012). Some have developmental disability.

Two thirds of those living in squalor accumulate variably excessive amounts of garbage and rubbish, commonly including multiple items of little obvious value, purposely brought back home. Among them are hoarders who have accumulated so much that they can no longer clean their dwellings. Hoarders (most of them not living in squalor) often have urges to acquire items; they retain and resist discarding possessions, believing they may be valuable or interesting now or later. In some cases it appears that the hoarding is a feature of a mental illness such as dementia, schizophrenia or obsessive-compulsive disorder, but in others it appears more to be a personality problem that has progressively worsened over adulthood. The term ‘Hoarding Disorder’ was introduced as a diagnostic category in DSM-5 (American Psychiatric Association, 2013), one criterion being that the hoarding is not attributable to a physical or mental disorder such as dementia. Other criteria include difficulty discarding, associated distress, a need to save items, consequent clutter, and impairment of social or other areas of functioning.

Neuroimaging studies of hoarding implicate a range of frontal and temporal brain regions that may modulate or suppress subcortically driven predispositions to acquire and save. Damage to these areas (e.g. by vascular incidents) can lead to hoarding behaviour, and fMRI studies have shown the same regions to be involved even in the absence of known lesions (Slyne and Tolin, 2014).

Thus there are pointers to frontal lobe changes in cases of severe squalor (largely attributable to various mental disorders) and in cases of hoarding (some attributable to mental disorders, some to DSM-5 Hoarding Disorder; American Psychiatric Association, 2013).

Lee et al. (2014) reported a mean Mini-Mental State Examination (MMSE) score of 25.29 among the 52 (out of 69, mostly frontally impaired) participants who underwent testing. Sutherland and Macfarlane (2014) point out the need for tests that reliably identify frontal as opposed to temporal pathology. The Montreal Cognitive Assessment (MoCA) (Nasreddine et al., 2005) has been found useful when screening for impaired executive functioning among people living in squalor in Sydney (Dobson S, 2014 personal communication). Whatever the MMSE or MoCA scores, the vital decision to be made when assessing people who live in squalor concerns their capacity to look after themselves and to make appropriate judgements about how their living conditions might affect other people. If the person is living in dangerous conditions, however content they may be, and if they are causing distress to their neighbours, and if they have a psychotic illness that might well respond to treatment (case 3.4. page 62, Snowdon et al., 2012), surely it is appropriate to enforce a coercive order.

There is good reason to agree with Sutherland and Macfarlane’s (2014) view that health workers have a responsibility to be proactive. From experience, it is clear that not only health practitioners but local council officers and community service personnel commonly shy away from enforcing interventions in squalor and hoarding cases in spite of observed effects of their behaviour on neighbours, co-habitants and pets. Sometimes the necessary applications to courts and Tribunals prove too difficult or too expensive. The results of inaction or inadequate responses can be disastrous, as seen in a 2013 fire in Marrickville in Sydney, and in a decade-old much publicised squalor case in which the local psychiatric team chose not to enforce action through the Mental Health Act or a Guardianship order. Slatter (2012) has given examples of how public health, Local Government and other laws have been used to compel action. It may be easier to reach a good outcome when dealing with a tenant as opposed to a home-owner, through Tenancy Tribunals and regulations. Laws vary between jurisdictions. Developing countries may not have services or laws to allow effective action. This does not justify inaction in places that have resources and could act.

To intervene or not to intervene is often an ethical question. Ryan (2012) deals with this by discussing the case of Miss Havisham (‘Great Expectations’). Our services should act in the best interests of the person where possible, while bearing in mind the interests of others. When capacity is in doubt, decisions about intervention may be debatable. It may be easier to do nothing. Recognising our responsibilities, even if they distress us, is necessary. If we find the job impossible, it is important to refer to people or services who can take on the case.

Letter by Sutherland and MacFarlane, 2014, 48(7): 690