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Dignity in death

Those working with homeless people must face the possibility of them dying. Katie Puckett discovers the six steps to meeting the needs of vulnerable people at the end of their lives

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‘Would I be surprised if this person were to die at some stage in the near future?’ Perhaps that’s not a question many of those working with homeless people will feel comfortable asking themselves, but it is an essential one if they are to fulfil their clients’ wishes for the end of their lives and offer them the dignified death that they would want for themselves.

The National Health Service’s 2008 end of life care strategy said high-quality care should be available wherever a person may die, but delivering that care for people living in hostels or on the streets presents particular challenges for housing and healthcare.

To help them achieve it, the NHS national end of life care programme last month published a comprehensive and sympathetic guide entitled Achieving quality in hostels and for homeless people - a route to success.

The guide draws on the experiences of homelessness charity St Mungo’s, which in September 2009 set up the first palliative care service in the UK for homeless people with terminal illnesses, working with charity Marie Curie Cancer Care.

‘End of life care is much more complex in many ways for [homeless people] than for the rest of the population,’ says Wendy Greenish, project manager in the research and innovation department at Marie Curie. ‘The average age of death is lower, between 40 and 44, and liver failure is frequently a contributing factor, which brings a number of complications. It does affect memory and, as it is caused by drinking and drugs, people may be less willing to engage with health professionals in the first place.’

Death may be an ever-present fact of life on the streets but individual staff who work with homeless people who’ve moved into hostel accommodation may not encounter it often. This can make it much harder to predict or prepare for. Getting end of life care right is important not only for those who die, but for other residents, staff and the wider homeless community.

Here are the six steps for end of life care, as detailed in the NHS guide:

1. Discussions as the end of life approaches

The only way to find out someone’s wishes for end of life care is to ask them. But how do you begin that conversation? ‘This is perhaps one of the most challenging steps,’ says Tes Smith, the guide’s author and social care lead within the NHS programme. ‘People wonder if it’s the right time, and if they are the right person. The answer is, why should it not be you?’

Ms Smith suggests that hostel workers ask themselves what they already know about the person and what the person knows about themselves. ‘Do they know they are unwell and that they have a life-threatening illness? If they don’t, you could ask generally about their health. If someone says, “I’m not feeling so well, but I don’t know why”, you can ask a simple question: “What can I do to help you find some answers?”. But if someone says “I’m fine”, you can’t push that.’

As for spotting that someone is close to the end of their life, even health workers struggle with this. Ms Smith offers some general signs to look out for: ‘When somebody is in the dying phase, they sleep more. They’re less inclined to eat or drink or to engage either socially or generally in life. For example, if someone’s habit has always been to go out at 9am and suddenly they stop, that could be a sign.’

2. Assessment, care planning and review

As a person approaches the end of their life, it is vital to establish their needs and wishes as early as possible and identify any areas of unmet need. The report recommends a care plan assessment should take into account all aspects of end of life care - social, emotional and spiritual, as well as physical.

But Ms Smith warns against becoming fixated with the process of assessment itself. ‘A conversation can be an assessment,’ she says. ‘You don’t have to sit in front of someone with loads of forms.’

3. Care coordination

As many clients not only suffer from chronic physical illnesses but have mental health and substance abuse issues, a coordinated approach to care is essential. But it can be very difficult for hostel staff to know who to turn to and what services are out there. At the simplest level, Ms Smith recommends getting in touch with social services and GPs, who will be an invaluable source of information.

4. High-quality services in different settings

Hostel residents are entitled to the same high level of care, no matter where they are dying, and they should be able to choose where that is. If they regard a hostel as their home, it is understandable that they would want to stay there. ‘Homeless people don’t like being in hospital - that’s why they have health problems,’ says Peter Cockersell, director of health and recovery at St Mungo’s. ‘But they often end up dying in hospital by default. They spend their last days somewhere they would actively avoid.’

Whether or not a hostel is an appropriate place will depend on the services and space available - single rooms, for example. Ms Smith says that it is a misconception that people need 24-hour nursing care when they’re dying. ‘Hostels don’t have to offer services themselves, they can benefit from support from community health services. No hostel can do this in isolation,’ she says.

5. Care in last days of life

When an individual enters the dying phase, it may appear to happen suddenly or as the culmination of a gradual process. It is vital that staff can recognise when someone is dying and take the appropriate action. ‘There are people who appear to be very unwell and then get through it,’ says Ms Smith. ‘For some people, it is a rollercoaster approach to the end of life. Preparedness can never come too early, but don’t run in saying, “This is the end”.’

Every client’s needs at the end will be different. ‘The key is knowing who is local - who is the local rabbi, who is the Greek Orthodox priest? At the eleventh hour, if people do want someone, you don’t want to be scrambling around,’ says Ms Smith.

She also warns not to make assumptions. ‘Sometimes people think there has to be a “Cilla” moment - if someone is unwell they must be reunited with someone. It comes back to asking that individual what they need and who they want to see. There is an urge to want everything tied up in a neat bow, but life isn’t like that.’

Hostel managers should also consider the distress that watching a client die could cause staff and residents. ‘Obviously if you work with somebody over several years, it’s very hard to watch them die,’ says Mr Cokersell.

Hostel workers also have an important role to play in managing the grieving process for other hostel residents.

‘There’s quite a lot of death around people in the homeless community - many will suffer from serial bereavement. If you aren’t addressing death, you can’t mourn properly,’ he says.

6. Care after death

Death itself is not the end. Staff need to continue following good practice for the care and a viewing of the body, respect family wishes, and help friends and relatives of the deceased to cope with their loss. ‘End of life care is about people dying - that continues after death,’ says Ms Smith.

‘When someone has died, they are still a person and they must be treated with dignity and respect. Who needs to come and see that person? Has the individual stipulated that they want no one to see them? Are there customs that need to be carried out?’

Above all, the guide stresses that residents’ own choices be respected throughout, however hard that may be for hostel staff. As Mr Cockersell says: ‘These people won’t recover but, with good end of life care, they will recover some dignity and control over their lives.’

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