Most terminally ill cancer patients want to die at home. In reality, few get the opportunity. Adrienne Betteley, End of Life Care Programme Lead at Macmillan Cancer Support, explains how the charity hopes to change that.
Choice has become something of a buzz word in the NHS in recent years and politicians love to espouse the virtues of giving patients more control over how and where they are treated.
But as anyone who actually works in the health service can testify, making that happen is a lot more difficult.
And palliative care for cancer sufferers is no exception.
‘At the moment, 79 per cent of people would prefer to die at home with the right support,’ says Betteley, who spent many years helping patients and families come to terms with death in her role as a district nursing sister.
‘But fewer than a quarter actually do.
‘Families and carers should have the opportunity to prepare for death and the bereaved should have access to practical and emotional support.
‘I always found end of life care the most challenging and yet the most rewarding.
‘I’m passionate about dealing with people at such a difficult time in their lives, particularly being able to support people to be cared for with compassion and dignity in the place of their choice with their family feeling well supported.’
So how can organisations like Macmillan help to bridge the gap between what terminally ill cancer sufferers want and what they actually get?
It has a number of initiatives which it hopes will allow more people to see out their final days in the peace and comfort of their home, if that is what they prefer.
These include projects such as Macmillan Specialist Care at Home, mainstreaming Advance Care Planning and improving bereavement support. All these come under the umbrella of its End of Life Care Programme – Betteley’s responsibility.
‘Our objectives are to ensure people affected by cancer are supported to make decisions, manage their care and live well until they die.
‘Care should be coordinated and planned for so that they can die well and in their place of choice.
‘We aim to make Advance Care Planning the norm, through raising awareness for the public and professionals and through education and training for professionals.
‘We also hope to improve the experience of end of life care at home, through the roll-out of the Macmillan Specialist Care at Home Model.’
But it also wants to ensure that those dying in care homes and hospitals get the best possible support. It plans to develop a service aimed specifically at care homes so they can provide residents with the kind of death they desire and also supports some of the existing programmes around improving end of life care in hospitals.
‘There are currently two million people living with cancer in the UK,’ says Betteley.
‘That number is set to double to four million by 2030.
‘So whoever is in power needs to recognise cancer’s long term impact on people’s lives, plan better services and develop more personalised care.
‘We want the Government to commit to free social care at the end of life as a package of community care by the end of this parliament.
‘We want to see a commitment to free social care at the end of life in each of the three main parties’ manifestos ahead of the 2015 election and are currently campaigning for this.
‘By introducing free social care at the end of life, supporting people at the end of life to record their preferences and training and supporting staff to provide 24/7 care, we will see a significant improvement in palliative care.’
But cancer is only part of the mix. One of the biggest challenges facing care providers is the rise in co-morbidities. Current trends mean more people will be living with cancer but they are also more likely to have other chronic conditions – such as diabetes, dementia and heart disease.
Betteley warns: ‘This is challenging not only for the individuals but also for those providing care as they will need to understand how to manage multiple illnesses and multiple forms of medication and treatment.
‘Our goal is to support more people to self-manage their care, provide as much care as possible outside of the acute hospital setting and utilise technology.
‘One example is chemotherapy increasingly being delivered at home.
‘We need a shift in the focus of resources from hospitals to the community to better support people with cancer in self-managing their condition and leading active and fulfilled lives.
‘The evidence suggests supporting people to die at home will lead to savings, since it will reduce unnecessary hospital admissions and free up beds in hospitals for people with more clinical need.’ Macmillan estimates that £345m could be saved and the Nuffield Trust and National End of Life Care Intelligence Network both have research which finds savings too.
Savings may also be possible through increased use of technology, says Betteley.
One example is Electronic Palliative Care Coordination Systems (EPaCCS), which hold information about a person’s care and preferences so that they can be shared with different professionals. ‘Where implemented, ‘she says, ‘EPaCCS have helped as many as 80 per cent of people registered die in their preferred place.
‘It’s also estimated that yearly savings of up to £133,200 are possible where EPaCCS are used.’
Macmillan believes that although there are shortcomings, examples of good practice can be found. And one thing is clear – there is no one-size-fits-all solution.
‘There are some very good examples where CCGs or charities have developed new models of palliative care,’ says Betteley.
‘Our own Specialist Care at Home service, which is based on a Swedish model of end of life care, involves early referral, home-based clinical intervention and collaboration between the services providing care.
’There are plenty of innovative solutions in place today for Government and commissioners to learn lessons and establish best practice.’
Underpinning any new initiatives, however, must be a concerted effort to overcome society’s reluctance to even talk about the end of life.
Betteley concludes: ‘We live in a society where death is a taboo subject, yet we are all going to die. ‘We need to encourage people to talk more openly about dying, death and bereavement, and to make plans for the end of life.
‘By working and pulling together as communities people can help a dying person and their family and friends to get the support and care they need.’