Patients’ spiritual needs: the conversations that can help
This vital, but often daunting, area of care starts with talking about what matters to people
This vital, but often daunting, area of care starts with talking about what matters to people
An encounter when she was just 18 years old sparked Linda Ross’s career-long interest in spirituality. Working in a facility providing long-term care for older people, she met a woman who had a poor quality of life. ‘Her eyes were dull, she had essentially “switched off”,’ she recalls.
‘One day I found an old Bible at the back of her locker where she couldn’t reach it and I offered to read to her from it. I still remember the change in her face, her eyes lighting up, her reaching for my hand. I knew then that there had to be something more to caring for people than physical care.’
Unsure of what to do
Today, as professor of nursing (spirituality) at the University of South Wales, Professor Ross is at the forefront of efforts to embed the importance of spirituality in nursing care. But while there are some terrific examples of good practice in healthcare and the voluntary sector, this remains a fraught area.
Nurses report feeling unsure about how to fulfil their role in meeting the spiritual needs of patients and service users. High-profile cases, such as that of a Christian nurse who was suspended after offering to pray for a patient, have only added to the confusion.
‘Nurses sometimes find it difficult to articulate what spirituality means, and revert to the question about religion’
Adrienne Betteley, specialist adviser for end of life care at Macmillan Cancer Support
An RCN survey in 2011 revealed a high level of uncertainty about spirituality and nursing – and nurses’ need for support and information.
While the overwhelming majority of respondents felt that spirituality and spiritual care were a fundamental part of nursing, almost eight out of ten said that nurses didn’t receive enough education or training in this area. More than nine in ten felt they were only ‘sometimes’ able to meet the spiritual needs of patients, and most wanted clearer guidance from health departments and the Nursing and Midwifery Council (NMC).
A 2016 investigation by the Royal College of Physicians found that among people dying in acute hospitals in England only 15% had discussions about their spiritual needs documented.
The National Institute for Health and Care Excellence (NICE) set out guidance last year on the care of people in the last few days of life. Dying people should be asked where they want to die and if they have any cultural, religious or social preferences, it says, although it does not specifically cite spirituality.
The same level of attention as physical needs
The RCN responded to its own survey by publishing a pocket guide to spirituality in nursing care, pictured. This makes it clear that spiritual care is not just about religious beliefs and practices, nor is it about imposing your own beliefs on others. It is not a ‘specialist’ activity, nor is it the sole responsibility of an organisation’s chaplaincy team. Rather, it is ‘about meeting people at the deepest point of need’.
It is about our attitudes, and ‘being with’ people rather than ‘doing to’ them. Importantly, the guide adds: ‘It is about treating spiritual needs with the same level of attention as physical needs.’
Attention to holistic care, including spiritual needs, is the responsibility of all nurses, says Adrienne Betteley, specialist adviser for end of life care at Macmillan Cancer Support.
In cancer care, she says, ‘the baseline for effective personalised care is every person with cancer having an holistic needs assessment at diagnosis, which is then regularly updated’.
‘As well as clinical need, there must be an appreciation of holistic needs, such as emotional well-being,’ she says. ‘Spiritual care is a fundamental part of this, and any nurse undertaking a holistic assessment of an individual should consider their patient’s spiritual needs.’
The spiritual dimension of palliative care
Every human is a spiritual being, says hospice director Elise Hoadley, and all have spiritual needs. This should be at the forefront of care, particularly towards and at the end of life.
‘The four tenets of palliative care are physical, psychological, social and spiritual,’ says Ms Hoadley, director of the Sue Ryder Leckhampton Court hospice in Gloucestershire.
‘But spirituality isn’t the same thing as religion. It’s about trying to find out what gives life meaning for an individual, whether that is walks in the park, children, dogs, art or anything else. Some people formalise it in faith and then it becomes religion, but we shouldn’t muddle up the two.’
‘Never make assumptions’
The hospice, which provides specialist palliative care for adults with a range of conditions, has a chaplain who is an ordained Church of England priest, reflecting the background of the majority of its clients, but brings in leaders from other faiths as required.
‘Spirituality isn’t the same thing as religion. It’s about trying to find out what gives life meaning for an individual’
Elise Hoadley, director of Sue Ryder Leckhampton Court hospice
‘The chaplain oversees a team of spiritual care volunteers who talk to people – some will say prayers if that’s what the person wants, but it is absolutely led by the person, and you can never make assumptions,’ Ms Hoadley says. ‘Someone may call themselves Christian but not want to see anyone with a dog-collar.’
She believes nurses find it difficult to broach spirituality with patients partly because, anecdotally, many confuse it with religion. ‘People are frightened. There’s a fear of giving offence, partly because they’ve seen media headlines about nurses being struck off for offering to pray with a patient, for example,’ she says.
Exploring spiritual preferences
Nurses at the hospice are encouraged to use a variety of tools and techniques to explore and ascertain people’s spiritual preferences. This includes asking people what matters to them, and using a ‘health thermometer’, a tool that helps explore people’s physical and emotional status.
‘It’s finding out what gives life meaning. For one man it had always been his dog. We began bringing in the dog to visit him, and his spiritual well-being improved.’
The average age of people in the hospice is about 45. For some, it can be music that provides their spiritual connection, or art or even social media. ‘We’ve made Wi-Fi available throughout – the digital connection is so important to people,’ says Ms Hoadley.
For some people with a religious faith, the final days of life can bring this to the forefront, she adds. Again, however, it’s about personalising care to what the individual wants, even after death. ‘Our chaplain is asked by patients to lead their funeral, although some will say they do not want God to be mentioned. It really comes down to what is important to each person.’
Ms Betteley says a common misconception among health professionals, the public and patients is that spirituality is only about religion.
‘Nurses sometimes find it difficult to articulate what spirituality means and revert to the question about religion. But it is much more than this: it is about what is important to the individual, what are their values and beliefs. It is about the purpose of one’s life.’
This is something that isn’t yet reflected across health services, says Professor Ross.
‘It seems that we’re quite happy to talk about sexuality, bowels and bladders, but when it comes to deeper, spiritual things we don’t know how to address it’
Linda Ross, professor of nursing (spirituality)
‘I was teaching nursing students just the other day and they were saying that hospital admission forms still have a box for religion,’ she says. ‘For one thing, spirituality is a lot broader than that. For another, students say the box often isn’t completed.
‘It seems that we’re quite happy to talk about sexuality, bowels and bladders but when it comes to deeper, spiritual things we don’t know how to address it.’
New approach in nursing schools
Professor Ross and some colleagues, including Staffordshire University professor of nursing Wilf McSherry, have been seeking to change this. Their three-pronged approach is looking at how to ensure that spirituality is part of undergraduate nurse education, that practising nurses are supported to be confident about spiritual matters, and that it is on the policy agenda. For example, they want the NMC code to be updated to include spiritual needs specifically.
They are also working on a tool to help improve spiritual care without adding more work to the nursing day through a three-year European Union project called EPICC (Enhancing Nurses Competence in Providing Spiritual Care through Innovative Education and Compassionate Care). The project is aimed at developing best practice in spiritual care education for nurses, based on evidence.
Professor Ross is concerned that teaching of spirituality in schools of nursing is piecemeal. ‘We have ten hours here, but in other universities there can be nothing,’ she says. ‘Schools are revising their preregistration curriculum at the moment because of new NMC guidelines, and we want to make sure that spirituality is completely embedded in the revised curriculum.’
Difficulty in defining the role of nursing in spiritual care is part of a wider reluctance to think or talk about some forms of spirituality, whether it is based on religious faith or not, she suggests. ‘I think the landscape is changing, and there is a much broader definition of spirituality.
‘Existential questions concern us all, whatever we call it’
‘Across the world, everybody has concerns about what life means and what lies ahead – thinking about whether there’s something else that’s bigger than us. These are existential questions and they concern us all, whatever we call it.’
Ms Betteley says considering spirituality is important when caring for someone with cancer. ‘When someone is going through a cancer experience, whether their cancer is curable or not, it can cause major spiritual distress and they need to be able to have open conversations about what is important to them and their options and sources of support,’ she says.
It is also vital that people’s personal needs – including spirituality – are met as they reach the last stage of life, she says. ‘Health professionals can help by encouraging future planning and having these early conversations.’
Enabling people to reconnect
When guests arrive at the Leuchie House respite care centre near Edinburgh they take part in a comprehensive assessment of what they need to make their stay happy and productive.
‘We call it the Leuchie MOT,’ explains chief executive Mairi O’Keefe, a registered nurse. ‘We assess their physical and emotional requirements, including their spiritual needs.
‘The physical part includes pressure mapping, physiotherapy and things like weight and diet. These are obviously important. But the emotional aspect is important too – we will be looking at whether they could benefit from counselling, if they are socially isolated – and, if they have a faith, whether it is being supported.’
Leuchie House, in North Berwick, provides respite care for people with long-term conditions. Initially run by the MS Society, it has been an independent charity since 2011.
Guests – never called ‘patients’ or ‘service users’ – have a variety of conditions, including MS, Parkinson’s, the effects of stroke, and spinal injuries, and the assessment process is designed in part to pick up any issues that need to be addressed – for example, if the person's wheelchair is fit for purpose.
The idea, says Ms O’Keefe, is to put in train changes that ensure the benefits of the stay at Leuchie House endure after the person returns home.
‘It’s become something of a scary topic – like death and politics, it’s something a lot of people don’t want to talk about’
Mairi O’Keefe, Leuchie House chief executive
‘Spirituality is part of the conversation,’ says Ms O’Keefe. ‘Sometimes people will say they used to go to church but that they haven’t been able to go for a while, maybe because of transport problems. We can facilitate them to go to church and can bring in leaders of different religions, for example, so that someone can receive communion here.’
Awkwardness over faith
Ms O’Keefe, who will remain patron of the charity after retiring as chief executive in November, believes there is a risk more generally that people’s spiritual needs can be neglected, in part because of a growing awkwardness over talking about faith.
‘You shouldn’t be scared to say you want to see a priest or a minister or a rabbi, or any other religious leader,’ she says. ‘But it’s become something of a scary topic – like death and politics, it’s something a lot of people don’t want to talk about.
‘It can also become more important to someone whose condition is declining – and sometimes it’s something that their family doesn’t understand.’
Ms O’Keefe says she makes a conscious effort not to promote her own faith in any way. ‘Sometimes when I’m talking to guests it becomes clear that they want to talk about it – or they’ve seen a notice about a church outing on the trip list and say they want to go.
‘It’s an important part of life for some guests and we want them to know they can talk about it here if they want to.’
Jennifer Trueland is a health journalist