The Last Mile of the Way – The Homelessness, Death and Dying Project (2019)

This article was originally published in the August 2019 edition of Parity magazine. Learn more about Parity including how to access full editions.

Preamble

In 2018 the Council to Homeless Persons (CHP) decided to initiate a scoping research project into the relationship between the experience of homelessness, death and dying. This project has been undertaken with the intention of both finding out what we know, and as importantly, what we do not know about this relationship. This project does not claim to be a definitive or comprehensive study of these issues. Rather, it aims is to begin a process of discussion that will lead to further research, analysis, understanding and change. 

This project was undertaken by Mark Furlong PhD. Mark works as an independent scholar and researcher. Previously, he has held academic positions at La Trobe and Deakin Universities. Earlier, he practised for many years in mental health and therapeutic settings. Mark has written two recent books and published more than 50-refereed papers. Mark also has an honorary affiliation with Bouverie Centre.

This research project was supported by a Reference group made up of CHP Board members Michael Horn and Jane Barnes, Michael Arnold from the DeathTech research group, Dr Andrew Hollows from Launch Housing and Kim Lee from Sacred Heart Mission.

The full project report will be released later this year.

1. Introduction

Death is an unwanted reality in the lives of those who experience homelessness. All too often this reality is silenced and unnamed and its presence is an unspoken fear. Mostly, it lurks spectral-like in the background. Dying – the processes leading to death – is part of this troubling reality. This uninvited companion to those who experience homelessness is also well known to homelessness service providers.

While discussing death and dying not exactly taboo, there have long been constraints to examining death and dying in the context of homelessness. The Council for Homeless Persons (CHP) believes it is time to bring this difficult subject out from the margins and put it at centre stage. The subject of death is meaningful, emotional and practical, and we believe death and dying warrants a dedicated focus. This is why CHP recently commissioned this project to study homelessness and it relationship with death and dying.

The project set out to identify what is known, and what remains unknown about the relationship between homelessness, death and dying. Particular aims of the project include: discovering how many people experiencing homelessness die each year; how this is measured and the issues and problems of measurement; – and developing options for responding to these problems. The outcome of this enquiry is summarised in this report.

The first stage of the study identified, collated and reviewed published material (see Section 2). The great majority of these reports appeared in refereed journals; and a limited number had the status of an official report. The second stage of the project focused on identifying what is known about the qualitative dimensions of death and dying (see Section 3). A third stage sought to understand why there is so little empirical local data (see Section 4). A series of direct consultations were undertaken to examine this issue. A final stage considered options for further action.

The project was designed to produce two outputs. The first is a 30,000-word major report. This report should be considered in conjunction with a separate semi-annotated literature review. (1) The second output is this summary report.

This project was sponsored by: Launch Housing, Sacred Heart Mission and Wintringham in Victoria, HammondCare (New South Wales) and Micah Projects (Queensland). We are greatly appreciative of this support of these agencies. Without their support, this project would not have been possible. It is also important to acknowledge the generous help received from the diverse range of people with whom we consulted, within and beyond, the homelessness sector. These discussions were organised on the understanding that anonymity would be preserved. This means these major contributors cannot be specifically acknowledged.

2. The Empirical Account

(2.1) Overview

The relationship between homelessness and premature death was summed-up in an editorial in The Lancet:

… being without a home has long been recognised as being associated with increased rates of physical and mental morbidity. Over the past decade, cohort studies have shown that these higher rates of morbidity translate into excess mortality. (2)

What is the source of this ‘excess mortality?’ One element is an elevated risk of suicide. A ten-year follow-up study concluded that suicide was six times more likely for those who had experienced homelessness than for the general population. (3) Another cause is unintentional injury: the above study reported ‘unintentional injury’ resulted in death 14 times more frequently amongst those experiencing homelessness.

Even more striking was this study’s finding concerning ‘unknown causes.’ Death occurred as a result of ‘unknown causes’ more than 60 times more frequently for those who are homeless. Homelessness is not only objectively perilous, but the deaths of those experiencing homelessness seem to receive less oversight than the deaths of those who are housed.

Statistics may not be able to communicate the sense of jeopardy experienced by those who are homeless, but they do paint a stark picture: ‘(the) average age of death of homeless persons is about 50 years, the age at which Americans commonly died in 1900. (4) Other estimates include 48 years (Toronto), 47 years (United Kingdom), between 42 and 52 years (United States). In contrast to the British Colombia figure of between 40 and 49 years, local life expectancy is almost double (82.65) for those who are not experiencing homelessness. 

Why is it so dangerous to be homeless? Premature death has different classes of cause. In part, the cause of premature death is illness. People experiencing homelessness ‘suffer the same illnesses experienced by people with homes, but at rates three to six times higher.’ (5)

Amongst a larger group of illnesses, the causes of premature death includes; tuberculosis, influenza, gastric ulcers, cancer, heart disease, diabetes and hypertension – a bracket of illnesses whose aetiology is often rooted in the circumstances of homelessness: poor nutrition, poor hygiene, stress, and exposure to extremes of heat and cold.

Premature death is also associated with adverse life events. Suicide, accidental overdose, homicide and life-threatening accident are disproportionately present in the lives of those who currently experience, or who have previously experienced, homelessness. These events are associated with a larger pattern: rates of assault, robbery, intimidation, self-harm and accident are all steeply higher than for the general population. International studies show that a person experiencing homelessness is between three and seven times more likely to die than someone of the same age and gender who is positively housed:

Over five years of observation, 1.7 per cent (209/12 451) of the general population and 7.2 per cent (457/6323) of the homeless cohort died. The hazard ratio of all-cause mortality in homeless compared with non-homeless cohorts was 4.4 (95 per cent CI: 3.8–5.2).(6)

In contrast, those ‘living in the most salubrious housing can expect to live, on average, more than twice as long as those sleeping rough on the streets. (7) In relation to this latter group a 10-year cohort study of 445 unsheltered homeless adults concluded that the age-standardised all-cause mortality rate was almost three-fold larger than that for a cohort of homeless adults primarily sleeping in shelters, and nearly ten-fold larger than that for the adult population of Massachusetts. (8)

What is the summary? A seminal literature review noted that epidemiologists had first identified ‘an early and intricate relationship between homelessness and early death’ in the nineteenth century, and:

Subsequent studies in major cities across the United States, Canada, Europe, Asia, and Australia have confirmed a persistent relationship between a lack of housing and excess mortality. Despite a diversity of methodologies utilised across multiple continents, the current literature reviewed in this paper demonstrates a remarkable consistency that transcends borders, cultures and oceans: homeless persons are three to four times more likely to die than the general population. (9)

Mindful homelessness has a number of forms, the above is conclusive. What is not known, is the detail. Like many other nations, Australia does not know how many of its citizens die while homeless, or as the result of homelessness.  

(2.2) The relationship between homelessness and the premature death of Aboriginal people

The relationship between homelessness and premature death is brought into a particular focus if the position of Aboriginal people is prioritised. In honouring this priority, the current project acknowledges Aboriginal dispossession. This is an especially sensitive issue given so many Aboriginal people are currently homeless, and so many have histories of homelessness.

In the context of the ‘transgenerational trauma’ that is caused by being involuntarily homeless in one’s homeland,(10) the premature death of Aboriginal and Torres Straight Islanders is embedded in:

material circumstances that are often shocking in their lack of safety and amenity, and

the fact that many Aboriginal people have inadequate access to medical attention – both diagnostic and in terms of treatment.

In these circumstances, it follows that homelessness will radically impact on life expectancy. This effect has not, and probably cannot, be quantified. To a degree, definitional issues over-determine the uncertainty of measurement. Even more problematic is the fact that over-crowded and inadequate housing is an all too common feature of life for a large number of Aboriginal people. Even when the uncertainties above are acknowledged, there are facts that are beyond dispute. Consideration of the Closing the Gap reports presents a clear starting point in convening this data. The 2019 report states that life expectancy for Aboriginal women is 7.8 years less than for non-Aboriginal women, and is 8.6 years less for Aboriginal men than for non-Aboriginal men.(11)

How much is homelessness correlated with the causes of illness and early death? One relevant report stated that ‘… up to one-third of the difference in life expectancy could be attributed to differences in income, school education, employment status and overcrowded housing.’ (12) Given around 12 per cent of rough sleepers in the Melbourne-based Journey to Social Inclusion sample identified as Aboriginal and Torres Strait Islander, this correlates to an approximately a four-fold over-representation of Aboriginal and Torres Strait Islander in the homeless population. (13) Australian Institute of Health and Welfare analysis of homelessness service use across Australia shows that for every 10,000 Aboriginal and Torres Strait Islander Australian there were 33 rough sleepers coming to homelessness services. This contrasts markedly to 2.4 rough sleepers coming to homelessness services per 10,000 non-Aboriginal Australian. (14)

(2.3) Rates of Death: Non-Aboriginal Australians

Early research reported that men experiencing homelessness died at a rate of between three to five times the average. (15) Another indicative, non-refereed report summarised data from Launch Housing’s in-house research: between June 2018 and June 2019 there were 47 known deaths of current or former clients. Average life expectancy at the time of death was 43.5 years with the median life expectancy 42 years. (16) More broadly, it has been estimated that there are between 105 and 262 deaths annually in Victoria in this cohort. (17) If this estimate was developed for homelessness beyond ‘primary homelessness’ in Victoria, this figure could be expected to rise very significantly.

(2.4) Causes of Death

(2.4.1) Immediate Causes of Death

There is a troubling intersection between homelessness, family violence and premature death. Little empirical data is available, yet inferences can be derived from the data that is on the record. For example, it has been reported that around 10 per cent (853) of the 8,618 homeless people interviewed across Australia in registry weeks between 2010 and 2017 were women ‘sleeping rough.’ (18) In 2017-18 there were 5,905 women who attended homelessness services while sleeping rough. (19) This group were ‘… most frequently on the streets, in cars, in parks, and other locations not designed for habitation.’ It is also known that family violence is an increasingly common reason for seeking homelessness services.(20) 

Homicide, overdose and fatal accident is another cause of death that is disproportionally present in the lives of those who are homeless: ‘(w)hen comparing the means of death of the homeless population against that of the general population, homeless individuals are more than three times as likely to die by accidental means.’(21) Deaths associated with, or directly caused by, drug overdoses are increasingly present in the deaths that occur within the homeless population. As opposed to violent, unexpected death, those currently experiencing homelessness are more likely to die as a result of natural causes. Heart attack, cancer and respiratory failure, for example, are far more common as causes of death for those experiencing homelessness.

As is well understood, comorbidity is closely associated with premature death: ‘Alcohol and drug use disorders were predictors of death by unintentional injury for both men and women’ whereas ‘schizophrenia spectrum disorders and personality disorders were … significant predictors among men’ but not for women’. (22) Gender is definitely a primary variable: ‘Homeless women 18–44 years of age were ten times more likely to die than women in the general population of Toronto.’

 (23) Acquired brain injury (ABI) is another element in the homelessness equation: One study found there was an almost three-fold increase in mortality in the homeless population for those who had sustained a serious head-injury compared to those with no history of head injury. (24)

(2.4.2) Intermediate Causes

Poor nutrition, including outright malnutrition, dental problems, sexually transmitted disease, tissue injuries and infection are associated with the increased risk of illness leading to death. For example, if a person has little or no access to bathing, facilities for cooking, healthy food, hygienic accommodation and regular medical care, this person will be more likely to contract disease, suffer from co-morbidities and, over time, tend toward a diminished resistance to disease. It follows that there will be a heightened risk of acquiring one, or more, chronic health conditions. Bundled together, these intermediate causes promote premature death. This prospect is often related to current, and/or earlier periods of homelessness.

The effects of extreme weather are expected to become both more frequent and more intense as climate change accelerates increasing the vulnerabilities of homeless persons. While this is relevant to the circumstances of rough sleepers, it also relevant to all those in marginal housing. This emerging context can be expected to approach what has already been reported in in so-called third-world countries. (25)

The effects of stigma are also a factor. Put simply, homelessness affronts self-respect – as it also provokes many non-homeless people to deride those who are homeless: ‘The big stigma is “it’s the homeless person’s fault.” (26) Those who experience homelessness regularly report being ‘dissed.’ Social determinants of health studies have found that a pattern of disrespect provokes stress reactions that spike cortisol levels (amongst other effects). Over time, this impairs immune function that results in individuals becoming more likely to succumb to, and less likely to recover from, disease. (27)

Some groups are particularly vulnerable. For example, in testimony to the Victorian Mental Health Royal Commission it was reported that the suicide rate for young LGBTI Victorians is higher than for any other group. Very likely, if homelessness is threaded into this calculation a significant correlation could be found.

Similarly, homelessness amongst refugee and asylum seekers is likely to correlate with illness and early mortality. Gender and Aboriginality – as specific, and as related, categories – would also be likely to be factors which promote premature death: 

Despite 3.3 per cent of Australian women in the 2016 Census identifying as Indigenous Australians (ABS, 2018), 39 per cent of women sleeping rough, and 14 per cent of (homeless) women not sleeping rough identified as Indigenous in the Registry Week data. (28)

Australia-specific metrics are generally missing. For example, international research has found that ‘the homeless cohort experienced a seven-fold increase in risk of death from drugs compared with the general population.(29) Using this figure as a guide, it could be inferred that a disturbing proportion of the approximately 900 Victorians who died between 2014 and 2018 from a heroin-related drug overdose were experiencing homelessness. If this number was known, the scale of the problem would be apparent.

(2.4.3) Underlying Cause

The term ‘underlying cause’ has several meanings. Within the medical tradition the underlying cause is:

‘(a) the disease or injury that initiated the train of morbid events leading directly to death, or

(b) the circumstances of the accident or violence that produced the fatal injury.’ (30)

What links the medical use of the term ‘underlying cause’ with the everyday meaning of ‘underlying cause’ is the notion of prevention:

The purpose of uniquely identifying the underlying cause is to identify the precipitating factor that could potentially have been prevented. Conditions thought to have been contributory but not part of the sequence of events leading to the death can be reported in Part II of the certificate. (31)

This introduces a key role undertaken by the coroner’s office: ‘Wherever possible, a Coroner will suggest ways to prevent similar deaths or fires by making well-informed and practical recommendations based on the evidence before them’ (32).

The following seeks to examine the notion of prevention.

Vignette: Alex – a rough sleeper   Alex (46) is experiencing primary homelessness and whose health is troubled by compromised immune and respiratory function. Alex encountered an opportunistic event (a viral insult; a chance tissue injury) that resulted in him contracting a minor infection. This malady lingered before coarsening in the context of a damp, unventilated squat. His health deteriorated and he progressed from mild fever to pneumonia – a trajectory that repeated a well-established pattern across Alex’s medical history. Alone, more or less immobile, and with little or no access to hygiene and nutrition, Alex’s condition further deteriorated. Marked by worsening impairments to cardiac and lung function, circulation, vision and cognition, over the next days, systemic failure becomes manifest. Vitality fatally ebbing, unable to raise a hack, Alex declined into an anoxic death.

The immediate cause of Alex’s death was documented as respiratory failure due to pneumonia; the underlying cause of death ‘chronic obstructive airways disease’ (COAD). Technically accurate, this formulation is reductive as it relies on a protocol of proximate, medical simplification. An adequate description of cause – rather than a narrowing vision of aetiology – requires an interest in what medicine might describe as intermediary and contributing causes. That is, a good-enough formulation is necessarily bio-psycho-social. (33)

The key question here is: to what extent were the deaths of those who are homeless preventable? Based on a population-based, cross-sectional study of linked hospitalisation and mortality data, it was concluded that ‘Nearly one in three homeless deaths were due to causes amenable to timely and effective health care.’(34)  That is, many deaths are preventable because these deaths were the result of treatable conditions. In Alex’s case the impact of a minor infection began a downward spiral that could almost certainly have been arrested by timely, on-site medical attention. Unless the cause of death is articulated in a holistic manner, preventative interventions will not be envisaged. Why? Because explanations of death will tend toward ‘natural causes’ as the default disposition.

3. Death and Dying in the Lifeworld of Homelessness

Those who experience homelessness know what it means to feel unsafe, to be assaulted, and see others assaulted; to hear that someone they knew has suicided or has overdosed; to live with the fear of accidents and mortal illness. Many have seen the bodies of others who have died. These experiences leave traces: those experiencing primary homelessness tend to be:

• worried about dying and EOL (end-of-life) care
• (have) had frequent encounters with death
• voice many unique fears, such as dying anonymously and undiscovered.(35) 

Even if it is not openly spoken about, how might practitioners identify these fears among those experiencing homelessness? A number of sources are available. First person accounts provide one stream of information:

Luke, 40: … ‘I’m a “freshie” (in Byron Bay). If it weren’t for these guys (more experienced homeless people), who have educated me and taken me under their wing, I’d be buggered. …  Two of my mates – freshies like me – have committed suicide this year due to the hardship. They were like me – smiling but behind gritted teeth’.(36)

A similar reference is seen in the Melbourne StreetCount report discussing ‘How safe do you feel?’ The opening comment is:

The need to always be alert, ‘always watching your back’, ‘always on the lookout for people that might harm you’ – were commonly relayed. Getting things stolen and getting bashed were also frequently mentioned. Women in particular said that they did not feel safe at all, but being with a partner helped. Others slept in groups where people took turns at ‘being on watch’ to help them feel a little safer. (37)

In the direct quotes that followed, the next section began with this statement:

‘I felt safer in jail’. What is clear in these, and other, first-hand reports is that death and its associates are very much part of the lived reality of homelessness. 

That people experiencing homelessness tend to have a complex engagement with death may surprise. This reaction is likely to reflect the social position that death has been allocated, not simply in the homelessness field, but in western culture more generally. For this reason, the subject tends to be abbreviated, euphemised, avoided or even denied. That death is not easily discussed, or that its presence is completely ignored, therefore should not surprise. Consultations with service providers confirmed that – just like many who experience homelessness – service providers often report powerful experiences of, and complex feelings about, death. Two specific themes emerged.

The first relates to ‘finding a body.’ For practitioners this experience is, and tends to remain, startling. With or without notice, this encounter is reported to be visceral, evocative and shocking. Time is said to stand still. In these encounters, the ordinary pales as everything else recedes. Mediated by the nature of the relationship between the now dead person and the practitioner, the meaning of this encounter varies, say, between significant and extreme. The state of the body is another variable. Doubtless other variables are present, such as the practitioner’s biography and their length of time in the field. However mediated, it seems that there remains something elemental about these encounters.

The second theme concerned responsibility. In settings which have a strong relationship-based ethic, workers often develop a deep connection with service users and can feel great loss in the event of a service user’s death. Evident in local unpublicised deaths, the same intense phenomenon plays out horizontally when it gets about that a well-known character, someone who is not only recognized but is affectionately regarded, has met with a violent end. Convolutions from these losses reverberate through the whole sector.

In these meetings with death, there is the sense that more should have been done; that I, or we, or they, all of us, should have helped more, or better, or for longer. Expressed more or less directly is a mixture of remorse and helplessness, emptiness and yearning, and being left feeling impotent by the death.

At a more pragmatic level, access to palliative care also arose as a concern. Interest was particularly focused on the barriers that inhibit, even prevent, those experiencing homelessness from being able to access palliative care. This concern is also present in the international literature. (38)

4. What is Not Known – and Why?

It is not known how many premature deaths related to homelessness occur in Australia. Initially, we assumed the lack of reliable figures represented a simple arithmetical gap. If we push a little harder, dig a little deeper and try for a little longer, we assumed a clear result would be found. After a period of active investigation, we came to a different view: there is a knowledge block, not a knowledge gap.

For example, a relatively simple factor is the lack of precision in how ‘housing status’ is recorded. How is this relevant? In the event of the death of someone who is homeless, a number of record entry options are possible: the hospital system might default to ‘unknown’, to ‘usual address’, or the record may be retrospectively filled in by the person’s next-of-kin if the deceased person is identified and a relative located.

Similarly, decisions in relation to the disposition, ‘cause of death’, depend on a set of values that tend to be inconsistently applied. For example, the decision to refer a death to a coroner, and perhaps for the Coroner’s Office to accept that this referral is a reportable death, is influenced by a mix of factors. Not least of these variables is the location where a person dies (on the street; in a nursing home, etc.). In different cases, it appears that different practice habits, procedures and protocols apply. Most likely, there is an interplay between these influences. Broadly, our contention is straightforward: there tends to be less oversight if a person is, or is presumed to be, homeless.

Rather than investigate whether or not a death was preventable – as is often the case with, say, gastric ulcers – it seems that the determination is more likely to tend towards a ‘natural cause’ judgment if a person is unidentified as ‘address unknown’/‘no fixed address.’ In so much as this is a pattern of institutional processes, the relationship between homelessness and premature death becomes masked and normalised. The current project undertook research to identify the relevant local practices. This information may not be secret but, to our knowledge, it is yet to be systematically aggregated or analysed.

Vignette: George – a rough sleeper   George is a 57-year-old male. His body was found early one morning in a park on the edge of a metropolitan city. The jogger who found his body contacted the police, who later arrived to find a dishevelled looking male without any identification. The night had been cold, and though no wallet or other identifying information were found, the two police who attended did not think anything suspicious took place. Assuming the death was due to natural causes, homicide detectives were not summoned. George’s dead body was then transferred to the coroner’s morgue.   At this point the body was given a temporary registration. George was eventually identified, and an out-of-date address noted. After an on-paper review, the Coroner’s office did not accept that the death was reportable in terms of their interpretation of the Coroner’s Act. That is, no de novo process was undertaken to establish cause of death.    No one having claimed the body, a pauper’s funeral was arranged. At public expense George’s body was released to a designated funeral service where the body was prepared for burial in the designated area of a large metropolitan cemetery. Based on the received information, the funeral director completed a notice of death document and forwarded this to the Department of Births, Deaths and Marriages (BDM). The data finally registered at BDM’s recorded George’s correct name, the wrong address and an indeterminate cause of death.

Comment

A number of variables are illustrated by this vignette. These include:

the effect of location: if the death had taken place in, say, a nursing home rather than in a public park, the nature of the oversight, the in-play protocols and practices, would be more likely to be stringent;

the mix of protocol and discretion: was it a matter of discretion or procedure – or a little of both – that determined whether the attending police officers, or their command, decided to, or decided not to, instigate an investigation of the death?

identification does not necessarily result in an accurate ‘housing status’ entry: If George had been carrying identification, his housing status is likely to default to ‘usual abode’ (which was an out-of-date entry). Alternatively, a next-of-kin may have been located. The question then is:

• would this person be happy to have George’s address nominated as ‘homeless’/‘no fixed abode?’
• the discretion the Coroner’s Office has to accept, or to refuse, to investigate a death and to adjudge this death the result of natural causes rather than as having been a preventable event.

In the above, no coherent, trustworthy chain of custody carried information from the time the death was verified, to the point at which this death was registered with the state Births, Deaths and Marriages authority. Why is this the case? More than a dozen nodes were active in the network that records, reviews and transmits the data. These entities, it might be said, were loosely coupled. This discontinuity has a serious effect: it is currently impossible to secure reliable statistics.

5. What Can be Done?

(i) A register of deaths

How might the discontinuities which prevent information being accurately recorded be resolved? The best option is a central register.

Different options present to auspice and organise a register. In Victoria, the Coroner administers the state Suicide Register and the Overdose Death Register. A register of those who die while experiencing homelessness could be organised in a similar manner. Alternatively, other state or national bodies could also be considered for undertaking this role, for example, the Australian Institute of Health and Welfare or the Australian Bureau of Statistics.

Less effective would be an elective body with an oversight function. This body could act as a registry point. Although not ideal, it is possible a more or less formalised arrangement could see all relevant agencies agree to systematically record, and then forward to this nominated body, data on deaths. This would encourage local homelessness agencies to commit to identifying, recording and collating data on deaths. In the current circumstances, this would be challenging to implement.   

(ii) Reviewing causes of death

Reliably registering the number of deaths of people experiencing homelessness, is one priority. That each death is appropriately reviewed is a related, yet distinct need. This is a key issue in so much as ‘natural causes’ is the default attribution, given this disposition pre-empts preventative measures being envisaged, for example, that recommendations be made in relation to ‘treatable conditions.’

A number of options are available that could support a review and oversight function. Perhaps, the role of an ombudsman for homelessness could be established. Such a role would have similarities to those in other fields, for example, that of the Disability Services Commissioner in Victoria.

(iii) Building evidence

Consistent with the need to have a structured approach to data collection, additional quantitative and qualitative research could be commissioned. There are several Victorian cohorts that could potentially provide important data on the longer-term effects of homelessness, for example, the Journey to Social Inclusion (J2SI) and the Street to Home program.

(iv) Policy and program reform

In so much as the premature death of those who currently experience homelessness, or who have previously experienced significant periods of homelessness, is seen as a priority, programs should be established or maintained and extended to minimise this risk and seek to improve quality of life. For example, the important programs that focus on the nexus between health and homelessness.

(v) Humanising and preparing for death

Even with every effort made to minimise risk, death will remain a persistent companion to service users and service providers alike. Being able to talk about death and dying – with those who are homeless and with others working in the sector – may be awkward, but it is often both the caring and the responsible choice.

Effectively identifying, acknowledging, and engaging with death and its implications involves resourcing relevant programs.  It also involves recognising what is involved non-materially. The emotional impact on workers of death and more broadly, of the intense life and death events they regularly encounter, needs to be acknowledged and responded to systematically.

(vi) Promoting awareness

While exact figures are not available, it is well established that homelessness is a killer. This fact could be (far) better publicised.  

Conclusion

The findings from this project can be summarised in four points:

• it is not known how many people in Australia die while experiencing homelessness
• it is also not known how many deaths of people experiencing homelessness are premature and possibly preventable
• if the reason a person experiencing homelessness dies is said to be ‘from natural causes’, this determination works to pre-empt preventative other explanatory options being considered
• a clear and transparent strategy needs to be developed and implemented to provide a universally recognised register of the deaths of people who die while homeless and the causes of these deaths.

 Endnotes

1. The semi-annotated bibliography produced by the project is a discrete searchable resource. It will be available on the CHP website later in 2019.

2. Geddes J R and Fazel S 2011, Extreme health inequalities: mortality in homeless people. The Lancet, 377, (9784), pp.2156-2157.

3. Nordentoft M and Wandall-Holm N 2003, 10 year follow up study of mortality among users of hostels for homeless people in Copenhagen, British Medical Journal, 32, (7406), p.81.

4. National Health Care for the Homeless Council. 2006. The Hard, Cold Facts About the Deaths of Homeless People, https://www.nhchc.org/wp-content/uploads/2011/09/HardColdFacts.pdf

5. Ibid.

6. Morrison D S 2009, Homelessness as an independent risk factor for mortality: results from a retrospective cohort study, International journal of epidemiology, vol. 38, no. 3, pp.877-883.

7. Shaw M, Dorling D and Brimblecombe N 1999, Life chances in Britain by housing wealth and for the homeless and vulnerably housed, Environment and Planning A, vol. 31, no. 12, pp.2239-2248.

8. Roncarati J S, Baggett T P, O’Connell J J, Hwang S W, Cook E F, Krieger N and Sorensen G 2018, Mortality among unsheltered homeless adults in Boston, Massachusetts, 2000-2009. Journal of the American Medical Association internal medicine, vo. 178, no. 9, pp.1242-1248.

9. O’Connell J J 2005, Premature mortality in homeless populations: A review of the literature, National Health Care for the Homeless Council, Nashville, pp.2005-16.

10. Raphael B, Swan P and Martinek N 1998, Intergenerational aspects of trauma for Australian Aboriginal people, in Danieli Y (edit.) International Handbook of Multigenerational Legacies of Trauma, Plenum Press, New York.

11. Australian Government 2019, The annual report to Parliament on progress in Closing the Gap, Department of the Prime Minister and Cabinet, http://ctgreport.pmc.gov.au/; accessed 08.07.2019.

12. Australian Institute of Health and Welfare 2016, Australian Burden of Disease Study: impact and causes of illness and death in Aboriginal and Torres Strait Islander people 2011. https://www.aihw.gov.au/reports/burden-of-disease/illness-death-indigenous-australians/contents/table-of-contents; accessed 18.06.2019.

13. Flatau P, Seivwright A, Callis Z, Thielking M, Mackelprang J, Taylor K and La Sala L 2018, Chronic homelessness in Melbourne: first-year outcomes of the Journey to Social Inclusion phase two study, Sacred Heart Mission, St Kilda.

14. Australian Institute of Health and Welfare, 2019, Aboriginal and Torres Strait Islander people: a focus report on housing and homelessness. https://www.aihw.gov.au/reports/housing-assistance/indigenous-people-focus-housing-homelessness/data accessed 30.08.2019.

15. Jordan A 1994, Going bad: Homeless men in an Australian city, Council to Homeless Persons, Collingwood.

16. Hollows A 2019, in press. The client death register and review process at Launch Housing, Collingwood.

17. Hollows A Undated, Reporting the mortality of people experiencing homelessness and preventing premature deaths, Unpublished monograph, Melbourne.

18. Box E, Flatau P, Lester L and Callis Z 2018, The (women’s) word on the street: The health and social costs of women sleeping rough and service interventions in three Australian cities, Centre for Social Impact / The University of Western Australia; https://apo.org.au/sites/default/files/resource-files/2018/11/apo-nid204376-1154151.pdf; accessed 06.07.2019.

19. Australian Institute of Health and Welfare, 2019. Specialist Homelessness Services Collection. https://www.aihw.gov.au/reports/homelessness-services/shsc-data-cubes/contents/data-cubes accessed 30.08.2019

20. Johnson G, Ribar D and Zhu A 2018, ‘Women’s homelessness: International evidence on causes, consequences, coping and policies’ in Susan L. Averett, Laura M Argys and Saul D Hoffman (ed.) The Oxford Handbook of Women and the Economy, Oxford University Press, United Kingdom, pp. 1-33.

21. Hannon J 2017, Dying on the Streets Homeless Deaths in British Columbia, 2006-2015 (Third Edition), Street Corner Media Foundation, Vancouver.

22. Nilsson S, Hjorthøj C R, Erlangsen A and Nordentoft M 2013, Suicide and unintentional injury mortality among homeless people: a Danish nationwide register-based cohort study. The European Journal of Public Health, vol. 24, no. 1, pp. 50-56.

23. Cheung A M and Hwang S W 2004, Risk of death among homeless women: A cohort study and review of the literature, Canadian Medical Association Journal, vol. 170, no. 8, pp.1243-1247.

24. McMillan T M, Laurie M, Oddy M, Menzies M, Stewart E and Wainman-Lefley J 2015, Head injury and mortality in the homeless, Journal of Neurotrauma, vol. 32, no. 2, pp.116-119.

25. See, for example, Ramin B and Svoboda T 2009, Health of the homeless and climate change, Journal of Urban Health, vol. 86, no. 4, pp.654-664.

26. The Guardian, 07.08.2017.

27. Wilkinson R and Pickett K 2011, The spirit level: Why greater equality makes societies stronger, Bloomsbury Publishing USA.

28. Op cit. Box E, Flatau P, Lester L and Callis Z 2018.

29. Op cit. Morrison D S 2009.

30. World Health Organization. 2008. International Statistical Classification of Diseases and Related Health Problems, WHO, Geneva.

31. Ibid.

32. Coroners Court of Victoria Annual Report 2017–2018, https://www.coronerscourt.vic.gov.au/sites/default/files/2018-12/MASTER per cent20CCOV per cent20AR per cent202017-18_0.pdf; accessed 24.07.2019.

33. Borrell-Carrió F, Suchman A L and Epstein R M 2004, The biopsychosocial model 25 years later: Principles, practice, and scientific inquiry, The Annals of Family Medicine, vol. 2, no. 6, pp.576-582.

34. Aldridge R W, Menezes D, Lewer D, Cornes M, Evans H, Blackburn R M, Byng R, Clark M, Denaxas S, Fuller J and Hewett N 2019, Causes of death among homeless people: a population-based cross-sectional study of linked hospitalisation and mortality data in England, Wellcome open research, no. 4.

35. Song J, Bartels D M, Ratner E R, Alderton L, Hudson B and Ahluwalia J S 2007, Dying on the streets: homeless persons’ concerns and desires about end of life care. Journal of General Internal Medicine, vol. 22, no. 4, pp.435-441.

36. Smith G P (forward) No fixed abode: Stories from the streets around Byron 2017, Byron Community Centre / Byron Writers Festival.

37. StreetCount: Grandmothers, grandfathers, mothers, fathers, sons, daughters – Sleeping rough in Melbourne 2015, Effective Change Pty Ltd / City of Melbourne, City of Melbourne Research Department, Melbourne.

38. Tarzian A J, Neal M T and O’Neil J A, 2005, Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals, Journal of Palliative Medicine, vol. 8, no. 1, pp.36-48; Stone P C, Hudson B and Shulman C 2017, ‘Nowhere else will take him’ – Palliative care and homelessness, European Journal of Palliative Care, vol. 24,no. 2, p.54.

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