Inpatient Hospice Beds

A recent letter in the International Journal of Palliative Nursing questioned the benefits and expense of hospice beds. My response, which you can read below, was published a few weeks later 

Marching on together!

The recent correspondence from Anthony Waite questioned the future of inpatient hospices and asked some important questions that those of us responsible for hospice care should consider. He suggested that the creation of specialist palliative care and the concentration of care within hospices may have hindered the development of good end of life care elsewhere and that inpatient units risk undermining other organisations.

As a hospice CEO, readers might think I would be writing to vehemently disagree with him, but actually I believe hospices should listen to such criticism, and reflect on why it is happening and how we respond to it. Whilst I acknowledge there is wonderful care delivered on an inpatient unit, it is not without disadvantages. Disadvantages for patients and families and potentially financial disadvantages for a hospice budget.

But why are we so attached to the hospice beds? I believe that hospice beds are frequently perceived as the solution when there are intractable problems, not just by palliative care practitioners, but more importantly by healthcare colleagues. Beds can offer the hope of a solution, perhaps even when there is none.  Beds are the ‘lifeboat’ of end of life care. When I was a community Macmillan Nurse I also thought: ‘Well if this doesn't work let’s consider an admission.” However now I am encouraging my team to think differently.

Inpatient hospice care is often positioned as a therapeutic environment to treat those with the most complex problems. We must acknowledge that, with so few hospice beds available, this therapeutic intervention is in reality available to very few patients. Those admitted to hospice beds are said to be those with the most complex problems, but how should hospices really prioritise who has access to that limited resource? Who has priority? Someone with complex physical problems or someone with intractable social or psychological problems?

Perhaps the environment is therapeutic not because of the ‘hotel-like’ surroundings, but because of interventions delivered by expert practitioners and, I believe more importantly, because of the compassion and humanity shown by the whole team: from the Consultant to the volunteers. Interestingly, Dame Barbara Monroe reported at last year’s Help the Hospices conference in Bournemouth that the patients cared for by their staff in a ward in Lewisham Hospital reported the same SKIPP outcomes as those who had received care in St Christopher’s Hospice beds.

We shouldn't forget that there can be disadvantages to an inpatient stay. If staff aren't careful, people admitted can lose their independence. Perhaps we don’t always make the most of opportunities to help carers improve their confidence in caring. We also often see the distress caused to patients and families if they are transferred from a hospice ward to a care home. However good the care home, many people feel angry that a family member has been deprived of their wonderful hospice care.

Financially, inpatient beds use a disproportionate amount of money in relation to the people they support. For example last year St Christopher's Hospice supported 2,000 patients in the community and admitted 830 people to their 48-bedded unit. However their inpatient care accounted for 48 per cent of their budget (St Christopher's Hospice, 2013). Here at St Nicholas Hospice Care the picture is not dissimilar: last year we supported 959 patients in the community and admitted 227 to our ward - a ward that used 35 per cent of our annual expenditure (St Nicholas Hospice Care, 2013).

One might ask if this is the best use of our donations and NHS funding? I acknowledge that inpatient beds are a visible attraction for potential donors, but they are like the tip of an iceberg as it is clear that for many hospices the majority of our work occurs outside of the building within the community that we serve. Work that includes close collaboration with our colleagues from other organisations, including the NHS.

Instead of using inpatient beds as a static ‘lifeboat’, why don’t we launch this lifeboat of expertise, compassion and humanity and take it out into communities, care homes and hospitals? The ‘lifeboat’ would also come with armies of volunteers, trained and willing to support patients and their families. This is certainly the strategy we are taking at St Nicholas Hospice Care.

Anthony Waite warned that hospices can risk undermining others and I think hospices need to take this on board as we can be seen as elitist and lucky to have resources and time. Whilst we know that hospice care provides much-needed and valuable support to those people and families who need it most, we must look at how we can develop so that we can reach more people. So what can we do differently? Perhaps we need be much more focused on empowering others: patients, families and professionals, and less focused on rolling up our sleeves and doing it all ourselves.

We also cannot be complacent and wait for those who currently don’t access services to come to us: we need to actively go out and work in partnership with people in local communities and find out what their needs really are, not what we think their needs are. At St Nicholas Hospice Care we have developed Hospice Neighbours, a volunteer scheme that gives practical support and companionship to people at home. We have 130 Neighbours working in 13 teams in eight locations and have delivered more than 5,000 hours of support. We will also be opening our first outreach centre in Haverhill, 15 miles from our main building and taking a range of services out into the community.

So what else can hospices do differently? Following the Final Report of the Commission into the Future of Hospice Care (The Commission into the Future of Hospice Care, 2013) it is clear we need to reach more people and work differently to respond to ever-growing demand. Anthony Waite’s article was titled ‘When the Saints go marching on,’ so I’d like to respond by asking how we can work together to reach more people and how we can all ‘be in that number.’ Rather than diverting funds to other settings as Anthony Waite suggests, I propose that hospice organisations are ideally positioned to make dying better for more people if they use their resources wisely and use it to work alongside our colleagues in the community and acute settings.

St Christopher's Hospice (2013), St Christopher's Group Annual Review 2012/13. 

St Nicholas Hospice Care (2013), Annual report and financial statements. 

The Commission into the Future of Hospice Care (2013), Future ambitions for hospice care: our mission and opportunity. London.

Helping others: Help yourself...

The inspiring ‘Games Makers’ at the Olympic and Paralympic Games have given volunteering a high profile recently. Their enthusiasm and willingness to help has been a crucial element in making both events such a success and it is wonderful to see these volunteers being recognised for their contribution.

Volunteers have played a major role in community life in Suffolk and it is important to recognise the things that ordinary people do every day to help others in need. St Nicholas Hospice Care could not do the work it does today without its superb volunteers.

Michael has volunteered for us for 6 years. He helps keep the ward stocked with dressings, drives patients to and from the Hospice and helps count donations in the finance department.

There is also Sarah who, in her day job, works on a family farm but in her spare time supports bereaved children as a volunteer with our Nicky's Way support programme.

One of our new volunteers, Liz, works 4 days a week in London but gives her time to be a Hospice Neighbour, offering companionship to a patient in her community and helping out with errands. She is also a bereavement visitor, supporting those who have lost a loved one, and also finds time to be a Hospice Ambassador, helping others to understand our work.

Volunteering is a great way to support a cause you are passionate about. It’s a way to do something you have always wanted to do, but not as your day job. Volunteering can fit alongside work, student life, retirement and times of unemployment. It can help you develop new skills or brush up old ones. I have known many people get back into work because of their experience as a volunteer.

St Nicholas Hospice Care makes sure that our volunteers have the training and support they need with the emphasis on fun and not on paperwork or bureaucracy.

It is wonderful that the London 2012 Games Makers have brought the world’s attention to the great spirit of kindness and generosity shown by so many people. Let us now also recognise the amazing contribution that people in our local communities give every day.

Volunteering can make a difference to your life and others. Why not give it a try?

How do homeless people die?

It is a sad fact that many homeless people find it difficult to access healthcare and die before the age of 50. People who don’t have a fixed home can be hard to reach, so how do they find out about the services to which they are entitled?

People become homeless for a wide variety of reasons but when it happens there is a risk they will become invisible to many organisations.

Hospice care in the UK is envied across the world. We help people and families with life-threatening illnesses in a wide variety of ways, but we must not be complacent about the care we provide, especially to under-represented groups such as homeless people. People can slip through the net and, unfortunately, some people still experience a difficult and undignified death.

Jane Carpenter, one of the senior nurses at St Nicholas Hospice Care, was keen to do more for this often marginalised group following the death of her cousin Stephen. He became homeless as a teenager and died young. His story inspired us to launch the Stephen Project: a scheme to help homeless people to live with dying.

We began by asking support workers and people within the homeless community what they wanted or needed and discovered that bereavement support was high on their list. People were suffering traumatic losses but nobody was supporting them.

Many homeless people have been affected by multiple deaths in the community and have even witnessed deaths first hand. We now train support workers in how to help people through the many losses they have experienced.

The biggest lesson we have learnt is that if you don’t know something exists – such as the Hospice – then you can’t ask for help. The Stephen Project works with hostel managers and homeless people to offer them support, although we know there is still a long way to go in letting people know how we can help.

At St Nicholas Hospice Care we want to help people to die where they choose to – whether that is in a Hospice, at home, in a care home or in a hostel.

We are here for the people who have no-one else to turn to; we are here to help people support each other in their own community. Homeless people may not have a fixed residence, but they are an important part of our community.

Be Surprised: Wherever you are, whoever you are, whatever your illness

Last week marked Hospice Care Week – a national campaign raising awareness of hospice care and what it means to all of us in the community.

There are so many myths and misunderstandings about hospices. People worry that a hospice is a sad place, a place where people go to die, or that it is there as a last resort.

I have been privileged to know many people who have received hospice care. Most have been cared for by hospice staff at home, but some have been inpatients on our ward. People have been surprised by the warmth and happiness that has enveloped them. They have been surprised at the efforts to which hospice staff and volunteers will go to try and make the lives of patients and families as good as they can be in such difficult times.

Hospice care is about helping people live with illness and bereavement, helping them make the most of every day. It is about holding onto hope, not giving up hope. People can meet others in similar circumstances, or they can get counselling and advice to help them manage the challenges of serious illness and dying.

Last week I was talking to a man who said the hospice had made him stronger. When he was first diagnosed with a brain tumour he was worried about how he would cope, but counselling and coming to Orchard Day Centre had made all the difference helping him to find the strength to go through treatments and surgery.

His experience is a good example of what we do and why we do it: we care about people and their lives. You might be surprised at the level of warmth and, yes, even joy found in hospices. Above all, we recognise what it is to be human and that every moment of our lives is precious.

I believe the role hospices play in society is crucial in trying to make dying better, but we need to be able to make things better for more people. I would encourage anyone struggling to cope with dying, either themselves or with regard to a relative, to pick up the phone.

You don’t need to wait for a doctor or nurse to suggest it. Advice is available 24 hours a day, 365 days a year. If you are unsure, ring your local hospice. You never know, you might be surprised at how we can help.

Helping others: Help yourself...

The inspiring ‘Games Makers’ at the Olympic and Paralympic Games have given volunteering a high profile recently. Their enthusiasm and willingness to help has been a crucial element in making both events such a success and it is wonderful to see these volunteers being recognised for their contribution.

Volunteers have played a major role in community life in Suffolk and it is important to recognise the things that ordinary people do every day to help others in need. St Nicholas Hospice Care could not do the work it does today without its superb volunteers.

Michael has volunteered for us for 6 years. He helps keep the ward stocked with dressings, drives patients to and from the Hospice and helps count donations in the finance department.

There is also Sarah who, in her day job, works on a family farm but in her spare time supports bereaved children as a volunteer with our Nicky's Way support programme.

One of our new volunteers, Liz, works 4 days a week in London but gives her time to be a Hospice Neighbour, offering companionship to a patient in her community and helping out with errands. She is also a bereavement visitor, supporting those who have lost a loved one, and also finds time to be a Hospice Ambassador, helping others to understand our work.

Volunteering is a great way to support a cause you are passionate about. It’s a way to do something you have always wanted to do, but not as your day job. Volunteering can fit alongside work, student life, retirement and times of unemployment. It can help you develop new skills or brush up old ones. I have known many people get back into work because of their experience as a volunteer.

St Nicholas Hospice Care makes sure that our volunteers have the training and support they need with the  emphasis on fun and not on paperwork or bureaucracy.

It is wonderful that the London 2012 Games Makers have brought the world’s attention to the great spirit of kindness and generosity shown by so many people. Let us now also recognise the amazing contribution that people in our local communities give every day.

Volunteering can make a difference to your life and others. Why not give it a try?

Talking about dying

It’s a strange fact that the thing we are all certain to experience as human beings is often the one that we find hardest to talk about. Yet, far from being sad or painful, talking about dying can reduce our fear, it can bring us together and can even be a liberating experience.

Talking about dying makes us think about our lives, our loves, our relationships and what is truly important to us. Perhaps we shouldn’t leave discussions about how we die until we are ill?

As a Hospice nurse I was privileged to be part of many conversations about dying. Some people balanced planning their death and funeral with their next holiday or special time with family or friends. One woman I knew was so determined not the miss the party after her funeral that she held it the month before she died!

Having worked in hospice care for more than 30 years, I know that dying is sad and emotional but being informed and prepared can help. When pregnant with my first child, the practical preparations of classes, understanding the pain control available and where I could give birth all helped - as did making sure the freezer was full of ready meals. Preparing for death is similar. Understanding what might happen and what you and your family or friends would want are equally important. Professionals can suggest and advise but how and where you want to be cared for is up to you.

Being prepared and sharing your thoughts with family and friends can be a gift to them as they will know what you want. If you are suddenly taken ill, doctors will ask your family what they think you would want to happen. If you have had those conversations and perhaps even written them down it will help make sure you have the type of treatment you would want and perhaps in very extreme circumstances prevent life saving treatment when you actually would have preferred to be allowed to die peacefully.

Facing death is hard, for the dying and those who will be left behind, stories in the media are often about those whose dying is painful and undignified. We do not hear about the many thousands of people that have been supported by family, friends and professionals to have a peaceful and dignified death. Hospices have played their part in improving this, but I believe there is much more work to be done if we are to make everyone’s experience of dying better.

St Nicholas Hospice Care has helped people have many of these conversations, advice can be found on our website, www.stnicholashospicecare.org.uk, and and on www.dyingmatters.org

Putting people at the heart of care

We hear a lot in the news about ‘health’ care and ‘social’ care. But the debates that take place are often made in response to political changes and legislation; I would suggest we are in danger of losing sight of what ‘care’ people really need when they are ill or dying.

Hospices, like many other charities, put the person and their family at the heart of the care they give. When a person has a life-threatening illness and is facing the end of their life, it is crucial they are treated as an individual, not a diagnosis.

National proposals seem to give a much higher priority to caring for people in relation to their illness and their medical needs and a much lower priority to someone’s everyday or ‘social’ needs.

Everyday needs include getting washed and dressed and eating and drinking, as well as other day to day challenges that can make someone feel they are losing their dignity or who they are as a person.

It is holding on to who you really are that is so crucial when you are dying; your relationship with your partner, your family, friends and even your pets. The things that one did so easily when well, like shopping, gardening, ironing or walking the dog suddenly seem insurmountable and a burden when you are ill and can be a painful reminder of the change an illness has brought about.

What national documents and guidelines so often ignore is that people still need to do the shopping and think about their daily lives in order to manage their death well. We should not define people by their illness. Instead we need to recognise that people have lives in their own communities that are still an important part of their needs (their pets, gardens, the lives and interests that inform their character).

Good social and practical care can make such a difference to a person and their family: Meeting their everyday needs can mean that they can manage the demands of an illness, reduce the burden on families who are caring and can event prevent unwanted hospital admissions.

We are fortunate at St Nicholas Hospice Care to have more than 100 volunteers who have come forward to help people with life-threatening illnesses. Hospice Neighbours service is volunteer-led and works alongside doctors and nurses helping people in their own community.

Hospice Neighbours help with everyday chores such as walking the dog, picking up prescriptions, returning library books, mowing the lawn or sharing a cup of tea. It is about neighbourliness, community and companionship. More than 150 people across West Suffolk and Thetford have benefitted from having a hospice neighbour since the scheme began just over a year ago.

Changes in government funding for social care will have huge implications for all of us as society gets older, the need for care continues to grow and more of us worry about how to pay for it. Whilst we must make sure that the government uses our money wisely and fairly for us all, Hospice Neighbours reminds us that that caring is not just about a financial transaction; it is about people in their communities giving wonderful acts of kindness to others.

Hospice Neighbours are an inspiration to us all and remind us that, whilst at a national level the care system seems intent on reducing people to a price tag, the true human value of caring for each other in times of need is indeed priceless.


My comments were published in East Anglian Daily Times Health Supplement on 14 June 2012