Everyone has the right to palliative care when needed (World Health Organization (WHO), 2020); yet, untrained staff working in hostels, homelessness charities and supported housing end up providing support to those approaching end of life (EOL) (Pathway, 2022). The focus on recovery can often mean that young people dying of potentially preventable disease are denied access to palliative care support (St Ann's Hospice (SAH), 2021). More needs to be understood for this ‘invisible’ group in society. Homeless people often experience a range of difficulties accessing the current healthcare system, such as access to a GP, medical appointments or medications for chronic conditions (Pathway, 2019).
It is acknowledged that homeless people receive poorer quality EOL care (NHS England, 2021). The Ambitions for palliative and end of life care: a national framework for local action policy attempts to ensure equitable palliative care exists regardless of socioeconomic status (NHS England, 2021). However, this is not the first policy to highlight inequity, and homeless deaths continue to occur in acute or unsuitable settings without advance care planning (Hudson et al, 2017; Tobey et al, 2017; Traynor, 2019).
Discussion
Homelessness is often thought of as ‘rough sleeping’, yet a wider definition is generally used that HCPs should be aware of. Crisis (2022a) defines homelessness as:
- People sleeping rough
- Single homeless people living in hostels, shelters and temporary accommodation
- Statutorily homeless households-households seeking assistance from local authorities on grounds of being currently or imminently without accommodation
- ‘Hidden homeless’ households-people who may be considered homeless, but the situation is not ‘visible’ in the streets or in official statistics, e.g. ‘sofa surfing’.
There are an estimated 320 000 homeless individuals in England (Shelter, 2018), with an additional 300 000 thought to be hidden from these statistics (Queen's Nursing Institute (QNI), 2020). It is well documented that those experiencing homelessness have poorer physical and mental health than the rest of the population (WHO Europe, 2022). About 78% of homeless people have a physical health problem, compared with 37% of the general population (Crisis, 2022b). Their life expectancy is significantly lower: 43 years for women and 45 years for men (Crisis, 2022c). This compares with the UK national average of 83 years for women and 79 years for men (Office for National Statistics (ONS), 2021a).
Homeless people experience increased exacerbation of pre-existing conditions due to increased prevalence of risk factors, such as smoking, poor nutrition, drug or alcohol dependency and poor sanitation (Traynor, 2019). This group is more likely to have what Stringfellow et al (2015) term ‘tri-morbidity’, where an individual has a mental and physical health problem compounded with substance misuse and yet, access to healthcare for those suffering tri-morbidity is known to be inequitable (Player et al, 2020). There were 688 homeless deaths reported in England in 2020; this is an increase of 43% since 2013 (ONS, 2021b). These statistics do not include those living in temporary accommodation, invisible homelessness or those at risk of homelessness. Furthermore, it was suggested by the government that hundreds more would potentially have died in 2020 without the ‘everyone in’ scheme that was introduced to protect homeless people during the pandemic (Ministry of Housing, 2020), although it is unclear how this could have impacted on EOL care.
A retrospective study in London found the top three causes of death among 130 homeless individuals to be from: substance misuse (18%), liver disease (14%) and cardiac-related deaths (10%) (Hassanally and Asaria, 2018). This study reported findings in line with the national expectations for homeless mortality, although an earlier study found 25% of deaths to be cardiac-related (Thomas, 2012). Multi-morbidity is common among the homeless population (Hassanally and Asaria, 2018). Consequently, people require greater healthcare input (Bradley, 2018), yet many do not have access to a GP (Pathway, 2019). Homeless people suffer significant barriers to primary healthcare, resulting in an increased use of acute services, estimated to cost the NHS £85 million a year (Homeless Link, 2014). Virtually, all homeless people do not receive the appropriate preventative and responsive treatment in primary care and this costs the NHS eight times that of the general population in acute care costs (Bradley, 2018). There are high rates of conditions usually associated with much older people that are seen among young homeless individuals such as frailty, incontinence and dementia (SAH, 2021). These people require more involvement from healthcare services such as DNs (Traynor, 2019). GP services are not able to refuse registering homeless people based on having no address and must register them with the practice address (Public Health England, 2020).
The NHS Long-Term Plan (2019) outlined the system for integrated care and the national roll out of Primary Care Networks (PCN) to better link health and social care sectors. This is to enable joint working with community services, including DNs, mental health, pharmacy, social care and the voluntary sector (NHS England, 2022). Caring for homeless people has typically been divided between health and social care (Batchelor and Kingsland, 2020). The PCNs, in theory, can provide opportunities for meeting homeless people's care-needs with joint working (Batchelor and Kingsland, 2020). The Homelessness Reduction Act (HRA) (2017) places a legal duty on local authorities to provide assistance to those experiencing homelessness. The HRA (2017) emphasises the need for joint planning and cooperation between social, health and other services.
A large population-based, cross-sectional study of mortality rates in England found one-third of all deaths in homeless people were due to conditions that could be resolved through healthcare (Aldridge et al, 2019). This study substantiates the likelihood of a healthcare system failing to meet their needs in a timely manner. Aldridge et al (2019) further indicate that those experiencing homelessness are paying the ultimate price due to extreme inequity. Access to medication and medical jargon are often highlighted as barriers in the literature and DNs must ensure people understand their diagnosis, using appropriate language and assess for understanding (SAH, 2021). One report highlights that chronic conditions usually well managed in the community are not being treated effectively in the homeless population, often leading to conditions worsening (Thomas, 2012). Although this report is 10 years old, current research indicates very little has changed (Pathway, 2019; SAH, 2021).
The literature evidences that this marginalised group rarely gains access to palliative care as needed (SAH, 2021). Many homeless people are living in temporary accommodation and hostels (Paudyal et al, 2017). The lack of nursing or medical involvement in hostels mean that staff do not consider young people to be potentially approaching EOL and are often focused on a ‘recovery approach’ (SAH, 2021). Homeless people may have recoverable disease, such as liver failure, with improvement possible through cessation of alcohol consumption, making it difficult to know when to refer for palliative support (SAH, 2021). Traynor (2019) suggests DNs could provide in-reach palliative care support to homeless shelters, thereby reducing the use of secondary care at EOL. Additionally, due to DNs often being skilled and experienced EOL care practitioners (QNI, 2021), they could support and educate hostel staff to recognise the key physical and behavioural changes occurring at EOL (Traynor, 2019). Some red flags identified in the Homeless Palliative Care Toolkit to help hostel staff recognise when a homeless person may require medical input. This includes unintentional weight loss, becoming withdrawn, two or more hospital admissions in 6 months, general physical decline, more reliant on others, changes in behaviour or personality, swollen abdomen that is new or worsening (Pathway, 2022). The online resource has been created to support those working with homeless people who do not have palliative care training but need to support clients whose health may suddenly deteriorate (Pathway, 2022). This is a detailed resource and DNs can signpost hostel staff to help them recognise when DN or palliative care input may be required.
Palliative care is a key aspect of DN practice and help to facilitate a dignified and comfortable death at home (Alker, 2021; QNI, 2021), yet homeless people often fall under the radar for palliative and EOL care, which continues to be inequitabe among those experiencing homelessness (SAH, 2021). SAH (2021) make several recommendations to improve EOL care for homeless people:
- Assess the training needs of an organisation and find out how to make the service more inclusive and trauma-informed
- Service mapping of Homeless services in your area, see www.homeless.org.uk
- Build collaborative relationships between health, palliative care, drug/alcohol services, social, and voluntary sectors to achieve support within hostels
- Support identification of people with deteriorating health while keeping options open
- Regular multidisciplinary team (MDT) meetings to discuss clients of concern
- Learn from and build on models that work, for example, in-reach palliative care coordinator, twinning hostels with palliative care teams.
A literature review by Traynor (2019) set out to explore the reasons why the homeless population cannot access palliative care and ask if DNs are well placed to provide EOL for homeless people. The research was found to be lacking in this field, especially from a nursing perspective. Traynor (2019) highlights unpredictable disease trajectory affecting access to palliative care, suggesting that DNs are ideally placed to recognise and provide EOL care for homeless people.
A qualitative study examining the symptoms experienced at EOL found that homeless people experience high frequency of pain and other symptoms leading up to death and therefore, care must involve a tailored approach (Tobey et al., 2017). A useful practice guidance has been created for staff working with people who use substances and who are approaching EOL (Galvani et al, 2019). This document emphasises joint working, for example, taking specialist consultants on visits to discuss whether different doses of pain relief are necessary and appropriate. This report highlights the importance of facilitating open and honest conversations to encourage people to disclose their alcohol consumption to ensure effective prescribing (Galvani et al, 2019). DNs are the ideal professionals to advocate for the patient with their GP and palliative care specialists (Galvani et al, 2019). Pathway (2018) report that to provide person-centred care for homeless people requires accepting, and working with, uncertainty. The report recommends regular MDT meetings (including hostel/temporary accommodation staff) should take place as communication was highlighted as a potential barrier to quality EOL care.
Advanced care planning (ACP) is associated with improved quality in EOL care, yet this rarely occurs with homeless people (Fleshner et al, 2019). Giving choice as someone approaches EOL provides them with greater control, yet homeless people are not offered the choices typically seen in palliative care (Nyatanga, 2019). This is perhaps complicated due to people being unwilling to accept that a young person is approaching EOL and ignoring vital signs typically seen and responded to (Shulman et al, 2018; SAH, 2021). Hudson et al (2017) found in their qualitative research that homeless services have a recovery focus that is not often conducive to palliation. HCPs can be at risk of making negative judgments when homeless people continue to engage in drug and alcohol misuse (Davis-Berman, 2017). SAH (2021) stated it is unfair for HCPs to expect people to change their behaviour as they approach EOL, arguing that this is not providing compassionate care. Instead, the focus should be providing care in the environment people are most comfortable in, respecting their wishes and priorities. SAH (2021) asserted it is not a difficult conversation to establish people's priorities; nevertheless, hostel staff are not trained in ACP discussions and may feel inadequately prepared (Traynor, 2019). It has been reported that hostel staff can be fearful of broaching difficult conversations for fear of affecting clients' wellbeing (Hudson et al, 2017). The guidance report ‘supporting people with substance problems at the end of life’ state that to ensure staff wellbeing, managers must provide sufficient support, allocating more time and emphasis on multi-disciplinary involvement for those with more complex issues (Galvani et al, 2019).
Many authors agree that conversations with homeless people should move away from death and dying, and instead focus on the present, allowing discussions about the future to be open, enabling people's wishes to be known and explored (Thomas, 2012; Hudson et al, 2017). Pathway (2022) advises that HCPs must avoid giving warnings such as ‘you will die if you keep drinking’ and instead facilitate an open and honest conversation about people's wishes and expectations.
To provide equitable care, it is important for DNs to understand the challenges people face when experiencing homelessness (SAH, 2021). Those living in hostels have been found to be using drugs and alcohol to block or ‘numb’ painful past experiences (Hudson et al, 2017). Research has found that some do not want to enter discussions around worsening health and potential death (Hudson et al, 2017). Hudson et al (2017) highlighted the need for a different approach for EOL care for homeless people, and to incorporate uncertainty into planning with a focus on promoting choice.
According to Traynor (2019), DNs are able to provide trauma-informed care (TIC). This is a way of treating people with the understanding that they may have been through trauma from the beginning, and actively striving to avoid retraumatisation by creating an environment of safety (Rouan, 2020). Pope et al (2020) report homeless people often have a history of trauma and emphasise the loss of one's home as traumatic. Additionally, there is a growing body of evidence that links childhood experiences to adult life struggles (Public Health Scotland (PHS), 2021).). First identified in America, a study was produced showing how adverse childhood experiences (ACEs) can affect adult physical and mental health. Some examples of ACEs are:
- Physical abuse
- Sexual abuse
- Emotional abuse
- Living with someone who abused drugs
- Living with someone who abused alcohol
- Exposure to domestic violence
- Living with someone who has gone to prison
- Living with someone with serious mental illness
- Losing a parent through divorce, death or abandonment (PHS, 2021).
The list is not exhaustive, and many other traumatic experiences can impact on health and wellbeing.
Four or more ACEs mean adults are more likely to suffer from heart disease, type 2 diabetes, commit violence, abuse drugs/alcohol and become homeless. DNs should consider the lifelong impact of ACEs on individuals.
TIC addresses specific needs that do not revictimise patients with a history of trauma, being sensitive to peoples' experiences and are very much patient-centred (Hauff and Secor-Turner, 2014; Pope et al, 2020; Guest, 2021; Keast et al, 2021). Some participants in one study referred to TIC as a buzzword, and for services to offer respectful care there must be sufficient resources available in the first instance (Canham et al, 2017). The concept of TIC involves the use of trauma-informed safety plans that include individual triggers and early warning signs of when individuals are experiencing stress. It further encourages a collaborative approach, respecting choice, even when viewed by professionals as ‘unwise’ (Pope et al, 2020).
Some HCPs question the recovery model in the context of those with advancing ill health, as it does not encourage dialogue for those unable to ‘recover’ (Hudson et al, 2017). The other issue is that many homeless people with advancing ill health do not have access to palliative care services, such as DNs and hospice; therefore, the hostel staff supporting these people do not have the experience to facilitate such conversations (Hudson et al, 2017).
Homeless people typically have less autonomy, and their perceptions of palliative care can often differ to professionals (Klop et al, 2018). A trusting relationship is vital and care should be accessible and flexible (Klop et al, 2018). This is particularly challenging as much of healthcare is inflexible (SAH, 2021). However, DNs, as autonomous practitioners, have an opportunity to create flexibility for this group and can develop relationships over time (Traynor, 2019). Homeless people participating in a qualitative study concluded professionals must pay more attention, make more time and have a sincere interest, to help build those trusting relationships (Klop et al, 2018). Although time can often be seen as a barrier within the DN service due to insufficient staffing (QNI, 2019), it is vital that DNs attempt to address this inequitable access to EOL care. As Trzeciak (2018) highlighted, compassionate care requires little time and can additionally be a powerful therapy to the giver of compassionate care.
It has been recognised that medical staff and the public often have negative attitudes towards homeless people (Marie Curie, 2022), and their right to access healthcare is therefore negatively impacted (Davis-Berman, 2017). Many conditions that are not life-threatening become so when left unattended, leading to homeless patients suffering and requiring more complex care (Davis-Berman, 2017). Some have suggested that palliative care units should be embedded into homeless shelters and there is a definite need for improved communication between agencies (Davis-Berman, 2017; Keast et al, 2021). A TIC approach supports improved healthcare access for homeless people (Keast et al, 2021). McNeil et al (2012) found that restrictive practices on alcohol and drug use prevents homeless people accessing many services.
Hakanson et al (2016) chose their qualitative single-case study to explore practices from the perspective of staff in a support home for homeless people. The home was set up to provide specialist palliative care for residents. The authors emphasise the importance of balancing initiating communication around advance care planning against the risk of harming the patient by intensifying feelings of anxiety around impending death, which must be done sensitively. A main feature of the care approach was relating to dignity for people who have traumatic backgrounds (Håkanson et al, 2016). Policies in the UK promote the opportunity for patients to choose where they die and there is an expectation most prefer to die at home, feeling more comfortable and less medicalised (Carduff, 2019; Driessen et al, 2021). These studies have not considered those without a home. Håkanson et al's (2016) findings from their study suggest a person-centred approach to care, with a focus on trusted ‘family-like’ relationships, adjusted communication strategies about illness and dying, with flexible care planning, are all necessary. However, their study focused on the perspectives of staff, which could well differ from that of the residents.
Conclusion
To conclude, those who experience homelessness pay the ultimate price of extreme inequity, with one-third of deaths due to conditions that can be addressed through healthcare. Additionally, homeless people are more likely to experience increased pain at EOL and DNs are well-placed to provide complex EOL care. ACP rarely occurs for homeless people and yet it is known to give greater control and reduce anxiety. ACP is further complicated by the focus of a ‘recovery approach’, where staff are unsure of the point at which palliative care is required. There is a suggestion of in-reach support for hostels to access the DN service effectively.
DNs must have a greater understanding of TIC to provide individualised care and ensure no retraumatising occurs, as many homeless people avoid accessing healthcare due to negative experience. Person-centred care with integrated working is the key to improved quality of EOL for homeless people. Indeed, building links with homelessness services can help overcome the barriers to good EOL care. Everyone has the right to equitable healthcare and to die with dignity and respect.
Key points
- People who experience homelessness suffer extreme inequity in health care in the UK, often having increased pain at EOL
- DNs must understand the need to approach care for those experiencing homelessness without judgment
- DNs must have an awareness of Adverse Childhood Events and how these can impact on adult health
- DNs must assist with building links with homeless services to ensure high-quality EOL care is available to this vulnerable group.
CPD reflective questions
- How can the district nursing service better reach those experiencing, or at risk of, homelessness?
- How can nurses work to prevent the retraumatisation of vulnerable people in their care?
- How can nurses approach advance care planning for those experiencing homelessness?