Marginalised in life...and death?
Homelessness and End of Life Care
Someone is defined as homeless if they have nowhere to live, a legal right to stay where they live, residing in unsuitable accommodation like overcrowded residencies or in abusive and unsafe environments, sofa surfers who stay with friends and family members on a temporary basis, living in temporary accommodation like hostels, shelters, refuges, bed and breakfast establishments or squatting and living on the streets.
There are many routes and factors for homelessness, for example adverse childhood experiences, complex trauma, poverty, unemployment, relationship issues and domestic violence. This can result in chaotic lifestyles, impacting a persons self-esteem and putting those who are already vulnerable at risk of self-harm, substance misuse and impulsive behaviour, detached relationships with others and isolated from support networks.
The consequences of homelessness for many results in trimorbidity; substance misuse, mental health issues and poor physical health. Primary causes of death for people experiencing homelessness include advanced liver disease, respiratory disease, cardiac disease, alcohol and drug related complications and blood borne infections such as Hepatitis and HIV. Inequalities in life are mirrored in death, with the average age of death in the UK for a man is 45 years, and 43 years for women.
So, when considering the causes and ages of death why do people experiencing homelessness often receive poor end of life care? There are a number of factors and considerations for barriers when accessing health care. Firstly, competing priorities such as food, drugs and alcohol, if travel costs are needed to attend health care appointments these priorities often will come first, resulting in lack of continuity and missed appointments. Healthcare approaches are not always flexible, how do you contact someone without a permanent address or a mobile phone? These all have future impact when accessing care, with people excluded from services and high attendance rates in A&E, seeking treatments only when health issues are often serious and advanced. People experiencing homelessness often have multiple complex needs, with negative experiences and relationships with healthcare services and staff members. How can we help people identify priorities for end of life and who should be involved?
Within the multi-disciplinary team there several different teams that can work alongside the person to ensure person-centred care when approaching end of life. These can include a GP, community palliative care teams, hospice, psychological support, drug and alcohol services, mental health advocate, spiritual support, community nurse, outreach teams and people who the person experiencing homelessness recognises as family and friends. Eco mapping will help identify significant relationships in a persons life, locating important people and organisations and mapping connections that exist between relationships.In addition, regular case reviews and multi-disciplinary team meetings allows the opportunity to discuss and monitor ongoing care and support.
With uncertain illness trajectory and complex multi-morbidities it is important to really think about people with advanced ill health, those whose health is a cause for concern. We can do this by having early and repeated conversations, asking 'whats important to you' or 'what matters most' or 'where is your choice of care and how can we help you achieve that?'
Education in palliative care will help with these conversations. Following the death of a local man The Mary Stevens Hospice formed a partnership with a hostel, developing and delivering a training package stevens-legacy for hostel staff, police and outreach workers.
In May 2019, Dying Matters Dudley, visited a hostel for Dying Matters Awareness Week. With a Before I Die board, rock decorating, camper van and film crew we spent time with residents, listening to their stories and experiences around death, dying and grief. Some people consented to be filmed, voicing their thoughts and wishes as part of a community collective project 'The Diary Rooms'.
The message on the decorated rock (left) was wrote during a visit to a refuge from a member of the outreach team and placed in the community garden.
Take a moment to consider.
Are your services flexible and accessible?
Do you consider the needs of people experiencing homelessness?
Often described as 'seldom heard’ how do we ensure the voices of people experiencing homelessness are heard AND listened to?
For further information on the education package and planned future training model for hostels and temporary accommodation contact:
Gemma Allen, Diversity and Inclusion Lead, The Mary Stevens Hospice
For help and support:
Dudley Homeless Prevention Team
0300 555 2345
020 7840 4430
020 7367 4500
0121 766 1700
Homeless Palliative Care Toolkit
Homelessness and End of Life Care Resource Pack