"Sean (60) never thought about getting older and says he does not often worry about dying, although he says someone did tell him he should make a will. What does worry Sean deeply is the thought that he might die and not be found for some weeks." – From the Simon Communities report 'Homelessness, Ageing and Dying' (September 2013).
Given the choice, most of us would like to die at home in the safety and comfort of our own bed surrounded by family and friends. But what if you don’t have a home and your bed is in a homeless hostel?
This is the reality for a number of homeless people in Ireland who suffer with a life-limiting illness, many of whom are estranged from their family and friends.
Despite their highly complex medical and social needs, there is a dearth of information and research in the area of palliative care for homeless people in Ireland.
A highly marginalised and vulnerable group, homeless people die on average much earlier than the general population. While there is no consistent Irish data, a 2011 UK study found that the average age of death of homeless men was 47, while for women it was 43.
The study by the University of Sheffield found that drug and alcohol abuse accounted for just over one-third of all deaths, and that homeless people were more than nine times more likely to take their own lives than the general population.
Complex needs
The complex mental and physical health needs of the homeless population in Ireland was revealed last year by the Partnership for Health Equity, a collaboration between the HSE, the North Dublin GP Training Programme and the University of Limerick. In 2013 it surveyed 601 homeless people in Dublin and Limerick and found that 89 per cent had been diagnosed with a mental or physical health problem.
The need for specialist palliative care services for patients living and dying in homeless hostels was highlighted by a study presented at the inaugural Irish Street Medicine Symposium, which took place in Dublin last month.
The study, “Providing palliative care in hostels: a case series”, was carried out by Andrew Hudson, a pharmacist and medical student at the Royal College of Surgeons in Ireland, and Dr Regina McQuillan, a consultant in palliative medicine at St Francis Hospice and Beaumont Hospital in Dublin.
The research reviewed the charts of 14 hostel dwellers who received specialist palliative care from St Francis Hospice in Dublin between 1997 and the present. Of the cases reviewed, 11 were male, three were female and the average age of death was 62.
All patients had a diagnosis of cancer and 44 per cent suffered from head and neck cancer.
As alcohol and smoking are the biggest causes of head and neck cancer, the increased prevalence of this cancer reflected the high level of alcohol misuse in this population, according to the researchers; it was recorded in 75 per cent of cases.
According to the study, substance abuse was a difficult challenge when addressing pain management and symptom control during end-of-life care, and patients with substance-abuse problems were more likely to suffer from anxiety or depression and, therefore, have a worsened pain experience.
It also revealed that because homeless people tended to move between different hostels, some patients found it difficult to get a medical card.
Half of the people who required end-of-life care were estranged from their family.
However, the study found that once contact was re-established, the family were happy to reunite and get involved in the patient’s care. Half of the homeless people in this study died in an acute hospital, five died in the hospice and two in a hostel. According to the study, homeless people residing in hostels desire meaningful and tangible support networks, and family plays a critical role in shaping the experience at end of life.
Training and support
The research also highlighted a need for training and support in general aspects of end-of-life care for hostel workers and frontline staff.
For example, the storage, dispensing and administration of medicines was an issue and there was a level of uncertainty about roles and responsibilities between medical, palliative care and hostel staff when caring for patients.
Commenting on the study, McQuillan says that people who are homeless have very complex and difficult lives, are likely to have more serious health needs than the general population, and have greater difficulty accessing healthcare.
“Specialist palliative care services are very open to helping hostel dwellers . . . we want to be able to work with hostel staff and other healthcare workers to try to improve the ability of homeless people with life-limiting illnesses to access palliative care,” she said.
A 2013 report by the Simon Communities in Ireland entitled Homelessness, Ageing and Dying, for which 16 homeless people were interviewed about their views on ageing and dying, revealed that one of the biggest concerns expressed by interviewees was where they might die.
Most expressed “a very strong desire to die where they were living and, failing that, in hospital.
“Transfer to a nursing home was ‘for many interviewees’ the thing they feared most. Some spoke about how they had been in institutions when they were young and how they could not bear to be sent to one at the end of their lives,” according to the report.
