Expert opinion: spiritual matters in end-of-life care

Palliative care should attend to all patients' spiritual needs, whatever their beliefs might be. By Reverend Ben Rhodes

During the 60 years that the NHS has been in existence, huge changes have taken place, not only in terms of the care that is delivered, but in the diversity of people's spiritual lives.

Sixty years ago, the majority of spiritual care in the UK would have been Christian pastoral care and ritual, delivered by local clergy or chaplains. Today, as Grace Davie, a sociologist of religion, has commented, we are in a context where 'believing without belonging' is the norm.1

Surveys and research seem to point to 75 per cent of people believing in God or a transcendent reality, but only a few per cent of the population regularly engage in organised religion. How then are healthcare professionals to care sensitively and appropriately for patients' spiritual needs, particularly people receiving palliative care or approaching death?

Spiritual care
What is meant by spiritual care? One definition, used at the North London Hospice, is as follows: 'Spiritual care concerns the awareness of, and the response to, people's need to integrate and make sense of their life situation and in doing so, to find meaning, purpose and hope for their life in the face of the ultimate horizon of death. A person's engagement with this human process constitutes their spiritual life. On this understanding, every person can be said to have spiritual needs.'2

Spirituality can be difficult to define and the literature offers a multitude of definitions. However, there seem to be some common themes. It is often talked of in terms of the individual and life events; that which gives shape and meaning, something that is transcendent, but not necessarily God.

Peter Speck defines the spiritual as 'a search for existential meaning within a life experience, with reference to a power other than self, which may not necessarily be called God'.3 Religion places this search for meaning into a meta-narrative, with rites and ritual. Further discussion on defining spirituality and religion may be found elsewhere.3,4

It seems to be impossible to produce an exhaustive guide to spiritual and religious care for all people. People's richness of spirituality leads to infinite diversity and even those who follow a particular religion may not live it out according to that faith's teaching. The golden rule for caring for somebody's spiritual needs is: do not assume, ask. It is about establishing a context of care, where patients may be empowered to make choices that affect the core of their being.

Any patient may have questions with a spiritual dimension, even more so if they are living with cancer or have been given a life-limiting diagnosis. They may ask: Why me? Have I done something to deserve this? What's life about?

Life changes, not only for the patient, but for those around them. Chapter seven of the NICE guidance5 (which will become mandatory in December 2008) provides an excellent guide on spiritual care. It reminds us that questions can emerge anywhere along the patient pathway, especially with the onset of new symptoms and other major changes, which can also lead to a change of affirmation of the patient's spirituality.

Being aware of the spiritual dimension means provision to meet them should be available at all points of the pathway, as the NICE guidance suggests. In response to this, a psychologist colleague is working to customise the distress thermometer as a screening tool that will highlight psychological and spiritual needs and allow them to be addressed appropriately.

Communication
Good communication is the foundation for spiritual care. The Cancer Action Team reckons that 80 per cent of important information is lost by poor communication in hospitals and 60 per cent in hospices.6,7 Listening to and acknowledging the patient's spiritual needs, alongside other feelings and concerns, may help with other issues, such as palliation. Holistic care needs to reflect the body, mind and spirit and the spiritual dimension should be attuned to the patient's beliefs in a non-judgmental, supportive manner.

A patient may only express their need once and if the cue is missed, the opportunity for caring for a patient in the best way may be lost too. Multidisciplinary communication is vital to providing appropriate care and the exchange of information, with patient consent, will allow for a more holistic approach.

Spiritual needs
For good end of life care, the sooner that spiritual needs can be discussed and addressed, the better. Sadly, there can be a reluctance to talk about spiritual and religious needs; at best, in the hospital and hospice setting, the chaplain may be called in as the spiritual specialist.

In fact, healthcare professionals probably have all of the necessary skills to care for their patient themselves, especially by listening and affirming the person's spirituality and talking through the things the patient feels are important. Chaplains are there as a resource to support, guide and work alongside the patient and other healthcare professionals.

In the community, it can be more difficult if patients do not already have support. Chaplains can see people when they are outpatients and some hospices can provide spiritual care at home. My PCT is establishing a spiritual care directory, so that patients who express a need can be referred to appropriate support outside the NHS.

This will require careful preparation and monitoring, because there is a duty of care to our patients. Whereas NHS employed chaplains usually represent a world faith, they are primarily there to provide spiritual care for all. They are not there to judge or convert; instead, they work alongside people as they ask questions. It is also vital to affirm that many patients will have their spiritual needs met by family and friends, and this must be remembered when assessing needs.

Spiritual needs should be properly documented and passed on to professionals as a patient moves through pathways, to ensure a consistent quality of care. The Liverpool care pathway is proving an excellent tool for timely intervention, with its spiritual needs assessment. Anecdotal evidence suggests chaplains are being called earlier (when requested by patients or their family), allowing for better care. This avoids meeting the family and friends when the patient is on the point of death or just after. The passage of time often allows a patient to express what they want and need more clearly.

Different religious perspectives
Some people believe that how they are treated in the lead-up to death directly affects what happens afterwards. This underlines the need for good and timely interventions to establish needs and respond to them if possible. For example, a Roman Catholic patient may wish to receive the sacrament of the sick and for a Muslim patient, the last thing they should hear before death is the declaration of faith, spoken directly into the ear.

So far, I have talked about spiritual care in relation to death and dying. Each religion will have its own answers to what it means to be human and to die and what (if anything) happens beyond. However, I must again sound a warning. Patients may identify themselves as being of a particular faith, but may live out that faith very differently from its teachings.

This underlines the importance of establishing the patient's wishes. But what happens when, for whatever reason, a person's wishes cannot be established? If there are no family or friends able to express a view and the patient cannot communicate, care must be taken not to rush in with a rite or ritual. Sometimes other members of the multidisciplinary team can advise.

When such a patient dies, it is best to follow the religious practice to which they adhered. This might involve laying somebody out in a particular way, or establishing who is permitted to touch the corpse. My NHS trust bereavement policy includes a section that describes what must be done in each situation. Each religion's practice has been verified by a qualified faith leader in that tradition.

In the UK, the law has precedence over religious matters. Sometimes in a religion where the funeral rites have to happen soon after death, such as Islam or Judaism, great sensitivity and truthful communication are required with next of kin when a person's death has to be referred to the coroner. There are a number of resources for understanding a particular religion's attitudes to illness, death and beyond, along with the appropriate rituals (see Further Resources).

Although religion can be a tremendous support in palliative care and dying, some practices may seem unhelpful. For example, in the Jewish and Muslim traditions, it is customary to wish somebody a long life, even though it is an established fact that they are dying. In some Christian traditions, it is thought that if you pray enough, a patient may be healed.

Healthcare professionals need to support the patient's beliefs, even though we sometimes strongly disagree with them. Careful working and the help of a chaplain or the patient's faith leader may be useful; such beliefs may not necessarily be pathological in nature. Trying to reason with some of these beliefs may do more harm than good.

Care after death is just as important as before it. Chaplains and religious leaders can support those left behind when a patient dies, including the healthcare professionals. More often than not, this may take the form of memorial services. NHS trusts and hospices have a variety of practices. Some hold annual services, others, monthly or quarterly events. Some will be exclusively planned by the chaplaincy, others by the multidisciplinary team. Clinical staff may attend some services if they wish. Sometimes the service is followed by refreshments and the opportunity to talk, which can be as important as the service in the grieving process. It may be a chance for staff to remember those for whom they have cared and to meet the patient's friends and relatives again.

We need to acknowledge and nurture our spirituality, because we care for people whose experience leads them to their own spirituality. Recognising our own needs helps us to see others as individual human beings.

Barts and The London holds three services of remembrance each year, all planned by the multidisciplinary teams, who take part. A service is held annually in Saint Paul's Cathedral, with partner organisations, such as the PCT. Family and friends are invited via the trust bereavement letter, posters or invitation cards they may see in the bereavement office, by their GP, or the City and East London Bereavement Service.

The service aims to be inclusive. Although it is held in a Christian venue, it also includes readings from the Islamic tradition and broader spiritual readings. Music is carefully chosen to make people feel at home. The names of those to be remembered are gathered in a large bowl and placed near a lighted candle, and a flower is given to each person as they leave.

The babies' and children's memorial and the renal memorial services are held outside places of worship. Families are directly invited - although we had to obtain specific ethical approval and people can opt out of future invitation with no questions asked. These services involve words and music reflecting the diversity of spirituality, including readings from various faith traditions. Symbols are used, such as candles, balloons and seeds, along with silence, music and the reading of names.

- Reverend Ben Rhodes is deputy lead chaplain, Barts and The London NHS Trust and Tower Hamlets PCT

References
1. Davie G. Religion in Britain Since 1945: Believing Without Belonging (Making Contemporary Britain). Blackwell, Oxford, 1994.
2. Spiritual care in North London Hospice - an agreed working statement on the nature and scope of spiritual care. February 2006.
3. Speck, P. The meaning of spirituality in illness. In: Cobb M, Robshaw V (editors). The Spiritual Challenge of Healthcare. Churchill Livingstone, Oxford, 1998.
4. Hollins S. Spirituality and religion: exploring the relationship. Nurs Manag Oct 2005; 12(6): 22-6.
5. NICE. Improving supportive and palliative care for adults with cancer. NICE, London, 2004.
6. Heaven CM, Maguire P. Disclosure of concerns by hospice patients and their identification by nurses. Palliat Med 1997; 11(4): 283-90.
7. Farrell C, Heaven C, Beaver K, Maguire P. Identifying the concerns of women undergoing chemotherapy. Patient Educ Counsel 2005; 56(1): 72-7.

Further resources
Ethnicity Online
BBC Religion & Ethics has a range of useful material and a faith calendar
The Multifaith Group for Healthcare Chaplaincy has many links to faith communities
NHS Education for Scotland. A Multi-Faith Resource for Healthcare Staff

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