Social and ethical iSSueS

Spiritual and cultural issues at the end of lifedavid Mitchell

AbstractSpiritual and cultural issues at the end of life are common and a natural

part of the process of life and death. they often present as distress or

agitation in the patient and should be considered when pain control is

difficult to manage. Spirituality can be defined as our sense of meaning

in life. it is often influenced by, and regularly confused with, religion and

culture. While it can be suggested that society is becoming more secular

and less religious, it can also be argued that it is the structure and

practice of religion rather than the faith itself that is being rejected, with

people picking and choosing the elements from different religions and

cultures to base their sense of meaning on. identifying and assessing

spiritual and cultural issues requires healthcare professionals to engage

on a human level with patients and their families/carers. each patient is

unique and individual, and while manuals and guidelines on spiritual,

religious and cultural care are a guide, the only true approach is to

‘ask the patient’. as with all end-of-life issues, spiritual and cultural

issues can be complex, and healthcare chaplains should be consulted

for advice or the patient referred for intervention.

Keywords cultural issues; culture; end of life; healthcare chaplaincy;

religion; spiritual assessment; spiritual issues; spirituality

Spirituality, religion and culture

Spirituality and culture are terms that are widely used in health-care and are enshrined in policy documents, guidelines, stan-dards and charters. Yet, despite their wide use, there is no definitive description of each term. Rather than a weakness this is their greatest strength since they require health professionals to engage with the patient and their family/carers.

Spirituality is best understood as whatever gives a person meaning in life.1 Regularly the word spirituality is mistakenly used synonymously with religion. While religion may indeed be a part of a person’s spirituality there will be other often more pressing elements to a person’s sense of meaning, such as: family, friends, their health, social and financial needs. Although more generically understood, the word culture should also have a broad and diverse understanding yet it too is often focused around its ethnic and religious roots.

David Q1Mitchell is a Parish Minister and Lecturer in Palliative Care. He

is a former editor of the Scottish Journal of Healthcare Chaplaincy. His

interests include developing standards and competencies in spiritual

and religious care in palliative care and hospital services in NHS

Scotland. Competing interests: none declared.

Medicine 36:2

As patients approach the end of their life there is a height-ened awareness of spirituality and culture as people draw on their roots and experience of rites of passage. It is, therefore, not uncommon for religion and culture to become more important to patients and their family/carers.

Engaging with the issues

Which healthcare professionals (HCP) should be dealing with spiritual and cultural issues at the end of life is a question open to debate. Randall and Downie suggest these issues should be left to those with expertise and highlights the role of health-care chaplaincy.2 However, the National Institute for Clinical Excellence guidelines recommend the Marie Curie Cancer Care Spiritual and Religious Care Competencies for Palliative Care which clearly roots spiritual care with all health professionals.3,4

Issues at the end of life

The clearest issues to identify are those that are focused around the religious dimensions of spirituality and culture. Symptom control including pain is usually regarded as normal practice; however, some may refuse some or all pain control as death approaches in order to be aware at the moment of death. Artificial hydration and feeding can be an issue depending on whether they are regarded as basic life-sustaining measures or artificial measures. Most, if not all, religions have allowances for the sick that excuse them from specific practices (e.g. fasting). Some patients will choose to see religious leaders, others will not.

A common factor in all issues will be the patient and their family/carers’ past experiences. A relative with lung cancer who died 30 years ago will have had a very different death from what we might expect the same patient to have today. It is, therefore, common for patients to be concerned about pain and to fear a painful death. Next to pain, being alone at the time of death is a real issue. Patients may want family around or be more demand-ing of attention to compensate this fear. It is a particular concern for people with motor neurone disease who may fear choking while alone. There is a paradox though, in that it is also common for patients to choose their moment to die when they are alone and the family, who have sat for days by the bedside, have left the room for a toilet break or something to eat.

As patients approach the end of their life it is normal for the focus of their concerns to turn away from themselves and onto their family/carers: ‘I just want my family to be alright’. It can be a source of comfort if patients are encouraged to talk their concerns through and often this is a crucial time for adding to the names on the lease of council property, making a will, con-sidering power of attorney. While these may seem social needs, if the patient’s greatest concern is for their family then it is also a spiritual need.

Some patients may choose to die at home, others in hospital, and some may change their mind as their illness and symptoms progress and they become more concerned for the pressure they are putting their family under. There can be a huge emotional pressure on family/carers to fulfil a patient’s request and the healthcare professional can be a mediating guide to enable a realistic goal to be set and achieved; for example, rather than the family ‘promising’ to keep the patient’s wish, to say they will

109 © 2007 elsevier ltd. all rights reserved.

Social and ethical iSSueS

‘do their best’ risks less complication in bereavement if they are unable to keep the promise.

While a number of books, articles and guideline manuals have been written on the different aspects of spirituality, religion and culture, these are useful only as a guide rather than a prescriptive tool. There is enormous diversity within each religion and culture, and the only true way to identify issues is to ask the patient, or the family. The guideline manuals are useful if the patient is unable to communicate and the family are not available; how-ever, a local healthcare chaplain will be more familiar with local spiritual and cultural practices and should be consulted.

Assessing issues

A number of attempts have been made to develop assessment tools for identifying spiritual need. The difficulty is that spiritual and cultural issues do not lend themselves to a set format. The assessment tools that are most useful are those which engage the patient in conversation. Jackson is such an example which gives the healthcare professional sample questions for patients which can be reworded and adapted to different settings:5

‘When you were admitted to the hospice you gave us a lot of information. We asked you about how you were feeling. How are you feeling now?’.Depending on the answer, the following might be asked: • ‘How easy is it for you to find hope and peace in your life at the moment?’ • ‘What makes it difficult for you at the moment?’ • ‘What changes has your illness brought about?’ • ‘Do you pray or meditate? Does it help you find meaning in life or not?’This tool can easily be adapted to account for local spiritual and cultural practices and common needs, for example by adding questions about the support of their family and local community, or asking ‘is there anything we can do to support your spiritual or cultural needs?’.

Addressing issues

Hope, being there, and peace are the key to addressing spiritual and cultural issues at the end of life. The words ‘there is nothing more we can do’ are unhelpful and distressing. There is always something that can be done in the way of palliative and sup-portive care. Setting realistic and achievable goals that reflect the issues raised by the patient are a way to foster hope.

Assessing spiritual and cultural issues requires us to engage with patients and their family/carers on a human level. It enables us to ‘be there’ as another human being as well as a health-care professional. Patients and carers need to feel that sense of presence to enable them to trust the healthcare professional and discuss their deeper spiritual and cultural issues.

Medicine 36:2 110

Alongside the healthcare professional’s clinical knowledge and expertise in symptom control, allowing patients to express their spiritual and cultural needs and seeking to address the issues identified can bring a tangible sense of peace not only to the patient but to their family/carers and the team of profession-als caring for them.

Spiritual and cultural self-awareness

In order to effectively engage with patients’ and their family/carers’ spiritual and cultural issues it is essential that healthcare professionals have thought through their own beliefs around ill-ness, end of life and death. Patients will often ask ‘what do you believe?’ and genuinely want to know. It can be supportive to share something of what you believe but only if your words will be helpful to the patient. It is not helpful to say you believe they are destined for hell and eternal damnation unless they know God, even if that is what you believe.

Conclusion

The key to good spiritual and cultural care for those at the end of life is good communication, being comfortable in engaging with a patient and their family, and being aware of your skills and limitations. Spiritual, religious and cultural issues are not rocket science, they often come down to humanity yet at the same time they can be complex. Healthcare chaplains have the expertise to discuss and work through complex spiritual and cultural needs and have the knowledge and resources to draw on other agencies as required.

The golden rule is never assume you know or understand, even if you have cared for similar patients. Spirituality is unique to the individual, religion and culture can be very diverse even within communities and families. Best practice in identifying spiritual and cultural issues is to have the conversation and ‘ask the patient’. ◆

REfEREnCES

1 chaplin J, Mitchell d. Spirituality in palliative care. in: lugton J,

Mcintyre R, eds. Palliative care: the nursing role, 2nd edn.

edinburgh: elsevier, 2005.

2 Randall F, downie RS. the philosophy of palliative care: critique and

reconstruction. oxford: oxford university Press, 2006.

3 nice. improving supportive and palliative care for adults with cancer

manual. london: national institute for clinical excellence, 2004.

4 Mccc. Spiritual and religious care competencies for specialist

palliative care. london: Marie curie cancer care, 2003.

5 Jackson J. the challenge of providing spiritual care. Prof Nurse 2004;

20(3): 24–26.

© 2007 elsevier ltd. all rights reserved.