Tag: Palliative care

    Should we talk about death?

    Palliative Care

    Our Palliative Care Coordinator Andy Knee poses this important question and highlights the innovative ways our Palliative Care Service is supporting clients who are at risk of death or in need of bereavement support.

    Should we talk about death? In St Mungo’s Palliative Care team, we think the simple answer to this question is yes.

    Death is something that affects us all, that does not discriminate against gender, race, sexuality, culture, or religion. Many of us are fortunate to talk about death and our wishes with loved ones. But what if you don’t have a home? And what if you don’t have family or loved ones to have these conversations with?

    This is a sad reality for lots of people who experience homelessness. A reality where many of their deaths will be preventable, undignified and untimely, with no planning for their wishes, and sadly many will be forgotten.

    In 2017 there were an estimated 597 deaths of homeless people in England and Wales, which represents a 24% increase since 2013. The NHS has recently reported a rise in homeless patients returning to the streets with many observing a surge in serious illnesses in the past decade such as respiratory conditions, liver disease, and cancer. Without someone to be their voice and their advocate, many individuals will be trapped in a harmful cycle of being admitted to hospital and discharged to the streets. This is something we can change.

    Dying Matters Week 2019

    ‘Are we ready?’ is the poignant theme of this year’s Dying Matters Week, which helps to raise awareness around this issue. At the end of 2018 we responded to the increase in homeless deaths and continue to pave the way in making change for people experiencing homelessness. We know the importance of providing end of life care and support to our clients, and we are using creative and innovative new ways to provide this service.

    Our Palliative Care Service

    To mark Dying Matters Week, we’re shining a light on our Palliative Care Service. This service is the only one of its kind in the homelessness sector and has benefited from dedicated funders over the last five years.

    The purpose of the Palliative Care Service is to coordinate a flexible and responsive care pathway to support clients who have a terminal prognosis or acute and potentially fatal health conditions, and to provide them with options that protect their quality of life. The service works to ensure that our clients can access healthcare and that we provide appropriate support to help them approach the end of their life with dignity and respect.

    We meet with local health services, lead change with research, and continue to develop tools and support structures for St Mungo’s. We’re also here to support staff across St Mungo’s to feel empowered and discuss death as openly as possible.

    Our aim is to ensure that everyone experiences a ‘good death’. We are also working to destigmatise this term, which holds so much power and importance.

    New Befriending Service

    This year the service has expanded to include our Palliative Care Volunteer Coordinator, and in June 2019, St Mungo’s will launch a new Befriending Service.

    The Befriending Service will serve to support clients that are at risk of death, or clients who need bereavement support for a recent or historical loss. In addition, the Befriending Service will support colleagues and teams around loss and bereavement, reinforcing our message: “you are not alone”.

    In response to the theme of Dying Matters Week – “Are we ready?” – St Mungo’s can proudly say “We are, and will continue to be.”

    Find our more about our Palliative Care Service.

    “There are no words”

    Tracey Jacob, St Mungo’s Housing Management and Lettings Coordinator, based in Westminster, shares her experience of working with people who are homeless and near the end of life.

    When a person has been diagnosed with a terminal illness, there are no words that can describe the emotions or feelings.

    When a client has no family, or has not been in contact with them, or wishes for them not to be informed of their illness. When a client makes a decision that he does not want to go to hospital or a hospice but wants to stay at home. This is when you realise they may see you as their family.

    Over the years, I have known and supported people who have been diagnosed with a terminal illness.

    There are guidelines, other colleagues, to help support and direct us as staff in that situation. But it’s those words – “I want my keyworker” – which cannot be substituted.

    With one of my clients, I had to start a conversation with him about being resuscitated. I didn’t know how.

    I called his GP who arrived the same evening to ask the questions and do the paperwork.

    I had to fight back the tears as I did not want the client to see me crying.

    The GP had a one to one with me after the meeting as well, to debrief me and make sure I was OK. These are the situations that don’t get seen, or talked about.

    On another occasion, I had to go through my client’s clothes to take some to the funeral parlour, wiping away the tears as I have never dressed a person who had passed away.

    My thoughts were, I want the client to look lovely, hoping that I chose a good outfit. I was given a cup of tea and they explained that I was not expected to do this, they would do it. These are the things that don’t get seen, or talked about.

    I have worked for St Mungo’s for many years. Any death is difficult. I have learnt that it’s ok to say “I need help and support” and to step back, take a few minutes to regroup your thoughts.

    For me, I take away that the person was not alone and I did the best I could do.

    It was Dying Matters last week . Please see our other blog by St Mungo’s Palliative Care Coordinator, Niamh Brophy, on the work being done to prevent people who are homeless dying on the streets.

    Hope from terrible tragedies

    Niamh Brophy is St Mungo’s Palliative Care Coordinator. We are the only homeless organisation to have such a person, supporting both clients and staff with ‘end of life’ experiences.

    For most of us, I hope Dying Matters Week is an opportunity to talk to our loved ones about death and the things that feel important to us: where we’d like to be cared for (for most of us it would be at ‘home’), and how we’d like to be remembered by our loved ones.

    But what if you don’t have a home? And what if you don’t have a family or support network to have these conversations with?

    This is the reality for the rising numbers of people experiencing homelessness. For many, their death will go ignored, not given the dignity or respect they are due, and with little planning given to their end of life wishes or preferences.

    This year’s Dying Matters Week (14-20 May) comes at a particularly poignant time. Recently, news that the number of deaths of people sleeping rough has more than doubled in the past five years shocked the public.

    These are individuals dying in car parks, on street corners and park benches, with no one around to support them as their lives draw to a close. This is desperately sad, and something most of us would think completely unacceptable in our society today.

    But from these terrible tragedies has sprung some hope. Campaigns have been launched to address and prevent these deaths from happening in future such as the #makethemcount campaign.

    Ed Davey MP has also proposed a new Homelessness End of Life Care Bill that aims to ensure people do not die homeless and alone on the streets, but have access to care and accommodation for the end of their life.

    At St Mungo’s we contributed to both of these initiatives. But more work is needed to ensure people get access to the care they need. That’s why we’re calling on the Government to ensure a review is carried out every time someone dies on the street, as part of their new rough sleeping strategy. This would ensure deaths no longer go ignored, and that lessons can be learnt to ensure such tragedies are not repeated.

    St Mungo’s were also involved in research published last year that explored the unique challenges in providing end of life care to people in hostels. What emerged was a picture of great complexity, but also plenty of opportunity to improve the experience of residents and staff when faced with such difficult situations.

    It’s now a decade since St Mungo’s first acknowledged the importance of providing end of life care to people who are homeless by establishing a Palliative Care role.

    In response to the increase in need of our residents, and the growing numbers of people dying on the streets, we will be expanding the service in 2018 and recruiting another member of staff to ensure all residents can be supported and cared for in the way that feels right for them.

    We continue to work every day to ensure our residents can access healthcare and be supported to approach the end of their life with dignity and respect. This Dying Matters week, we would encourage everyone to start a conversation on how we as a society can prevent the unnecessary deaths of people sleeping rough, as well as how we treat homeless individuals with dignity as they approach the end of their life.

    People who are homeless and facing the end of their life

    As Dying Matters Week comes to a close, Niamh Brophy, St Mungo’s Palliative Care service – the only one of its kind in the homelessness sector in the UK – explains more about how the service helps people the end of their lives.

    Last week I met John. He is 65 and has been intermittently homeless since his marriage broke down in 2009. The trauma of losing his family meant John lost control of his life. He ended up on the streets before coming to live in one of our hostels.

    When John was diagnosed with cancer a few weeks ago it came as a shock not only to him, but to the staff and residents of the place that had been his home for the past eight years.

    I also met Stephen, his support worker, who helps him in many ways, and who is doing his best to help John do what he wants to do with the rest of the time he has.

    The link between homelessness and health is widely recognised. Our wider understanding of the experiences of homeless people dying on the streets, in hostels or in hospital remains patchy.

    People experiencing homelessness have a much higher likelihood of having a long term health condition. Illnesses can often go undetected and untreated over time if people are reluctant to engage, because of other priorities they may have around being homeless. Care can then often become crisis led, particularly if further compounded with alcohol or drug use and worsening mental health.

    A consequence of this ‘non-engagement’ is demonstrated most shockingly in the statistic for the average age of death for someone who’s been homeless: 47 for men, 43 for women.

    St Mungo’s Palliative Care service

    It should not come as a surprise to hear that most homeless people do not gain access to palliative care until very late in their illness, if at all. Often their choices for care are limited, and their death is more likely to be perceived as sudden, untimely and undignified.

    In 2007, St Mungo’s started working to address these issues and improve care services for residents with advanced ill health.

    Our service aims to give our residents with serious health concerns the opportunity to choose their treatment, the chance to reconnect with loved ones, and the possibility to die in a dignified, comfortable way in a place of their choosing.

    We do this in five different ways:

    • Support residents to make informed choices about future needs and wishes and ensure access to supportive services, including specialist palliative care;
    • Support residents and staff in dealing with the psychological and emotional aspects of approaching the end of life;
    • Provide appropriate training to frontline staff in dealing with end of life issues, including bereavement support and spotting when clients may be at risk of dying;
    • Provide bereavement support to frontline staff and residents through a volunteer-led bereavement befriending service;
    • Work in partnership to raise awareness of the end of life care needs of people who are homeless.

    Since the service started a decade ago, we have:

    • Provided more than 190 residents with end of life care support including bereavement support. This created opportunities for residents to stay longer at home, feel supported emotionally, as well as allowing them the opportunity to make their wishes and preferences known.
    • Delivered training about homelessness and end of life care to more than 300 staff, including training sessions tailored to the specific needs of our individual projects. This has enabled staff to feel more confident in identifying those who may benefit from support.
    • Developed an online resource pack aimed at supporting staff working with people who are homeless.
    • Forged greater links and partnership working with services such as a multidisciplinary working group set up to identify earlier on those residents whose health may be deteriorating. This involves the local alcohol service, GP, hostel and hospice staff and is chaired by the Palliative Care Coordinator.
    • Partnered on collaborative research and training development with UCL, Marie Curie and Pathway that explores the challenges of palliative care for homeless people and how best to overcome them.

    In the UK, according to the Economist Intelligence Unit, we provide the best end of life care in the world. Providing end of life care for people, like John, who are homeless brings unique challenges. (Here’s a link to more information)

    We must work to ensure best practice is extended to all members of our society, particularly those vulnerably housed who all too often fall through the cracks.

    How you can help

    If you’re interested in the work we do to help our clients and want to do more, here’s how you can get involved:

    Ref: Economic Intelligence Unit. The quality of death: Ranking end-of-life care across the world. 2010

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