SOCIAL AND ETHICAL ISSUES

Spiritual and cultural issuesat 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 becomingmore secular and less reli-

gious, 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 on which to

base their sense of meaning. Identifying and assessing spiritual and cultural

issues require 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, standards

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 religionmay 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, quality of life, and 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 upon

its ethnic and religious roots.

As patients approach the end of their life there is a heightened

awareness of spirituality and culture as people draw on their

David Mitchell BD Dip P Theo MSc (MedSci) PG Cert TLHE is a Parish Minister and

Lecturer in Healthcare Chaplaincy and Palliative Care in the University of

Glasgow. 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 andhospital services inNHS

Scotland. Competing interests: none declared.

MEDICINE 39:11 678

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 highlight the role of healthcare chap-

laincy.2 The NHS in its guidance for healthcare staff, Spiritual care

matters, clearly places the responsibility for spiritual care upon all

healthcare professionals, stating that spiritual care is not an extra

demand on healthcare staff e it is the very essence of their work.2

A view also shared by the National Institute for Health and Clinical

Excellence, which recommends the Marie Curie Cancer Care

spiritual and religious care competences for palliative care.3e5

Issues at the end of life

The clearest issues to identify are those that are focused upon the

religious dimensions of spirituality and culture. Control of pain

and other symptoms 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. Arti-

ficial 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)

though it is the patient’s choice. Similarly, whereas 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 agowill have had a very different death fromwhatwe

might expect the same patient to have today. It is 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 big concern. Patients

may want family around or be more demanding of attention to

compensate this fear. It is a particular concern for peoplewithmotor

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 all right’. 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 or considering power of

attorney. While these may seem social needs, it is also a spiritual

need if the patient’s greatest concern is for their family.

Some patients may choose to die at home, others in hospital;

some may change their mind as their illness and symptoms

progress and they become more concerned for the pressure under

which they are putting their family. 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 real-

istic goal to be set and achieved; for example, rather than the

family ‘promising’ to keep the patient’s wish, to say they will ‘do

� 2011 Elsevier Ltd. All rights reserved.

SOCIAL AND ETHICAL ISSUES

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 other family members are not available;

however, 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 beenmade to develop assessment tools

for identifying spiritual need.6,7 The difficulty is that spiritual and

cultural issues do not lend themselves to a set format. The most

useful assessment tools are those that engage the patient in

conversation. Jackson gives the healthcare professional sample

questions for patients that can be reworded and adapted to different

settings6,7:

‘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 supportive

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 healthcare

professional. Patients and carers need to feel that sense of pres-

ence to enable them to trust the healthcare professional and

discuss their deeper spiritual and cultural issues.

Alongside the healthcare professional’s clinical knowledge

and expertise in symptom control, allowing patients to express

MEDICINE 39:11 679

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 profes-

sionals caring for them.

Spiritual and cultural self-awareness

In order effectively to engage with patients’ and their family/

carers’ spiritual and cultural issues it is essential that healthcare

professionals have thought through their own beliefs around

illness, 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 diffi-

cult to understand; although they can be complex, they often

come down to humanity. 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 to assume you know or understand,

even if you have cared for similar patients. Spirituality is unique

to the individual, and religion and culture can be very diverse

even within communities and families. Best practice in identi-

fying spiritual and cultural issues is to have the conversation and

‘ask the patient’. A

REFERENCES

1 Gordon T, Mitchell D. Making sense of spiritual care. In: Kinghorn S,

Gaines S, eds. Palliative nursing: improving end of life care.

Edinburgh: Elsevier, 2007.

2 Randall F, Downie RS. The philosophy of palliative care: critique and

reconstruction. Oxford: Oxford University Press, 2006.

3 NES. Spiritual care matters. Edinburgh: NHS Education for Scotland,

2009.

4 NICE. Improving supportive and palliative care for adults with cancer

manual. London: National Institute for Clinical Excellence, 2004.

5 MCCC. Spiritual and religious care competencies for specialist

palliative care. London: Marie Curie Cancer Care, 2003.

6 Jackson J. The challenge of providing spiritual care. Prof Nurse 2004;

20: 24e6.

7 McSherry W, Ross L, eds. Spiritual assessment in healthcare practice.

Keswick: M&K Publishing, 2010.

� 2011 Elsevier Ltd. All rights reserved.