The care provided to families during the end of life can have a lasting impact of the friends and relatives (Ross et al, 2018). Over the past decade, between 900 and 1100 children between the ages of one and 15 years have died every year in England and Wales (Office for National Statistics (ONS), 2021). For families, the death of a child can be devastating (Al Mutair et al, 2019) and there remains disparity in care for cultural minorities during palliative care (Reese et al, 2004).
Religion is important for many families to varying degrees throughout any care, but it can be particularly important during birth and death (Bülow et al, 2012); families have the right to care that considers, respects and takes into account their culture, including their faith-based practices (Chan et al, 2011; Al Mutair et al, 2019). It has been identified that the death of a relative in hospital can be made more stressful due to a lack of health professionals' knowledge around specific religious customs for a person who has died (Gatrad, 1994; Swihart et al, 2021). Conversely, being cared for by practitioners with a good level of spiritual knowledge or competence is known to improve spiritual wellbeing (Ross et al, 2018).
This article considers provision of faith-sensitive care—this differs from cultural competence, which focuses on the wider social, cultural and linguistic needs of the patient and their family (Betancourt et al, 2002), for example there may be customs practised in a certain geographic area that have little to do with faith, but are none-the-less culturally important to the patient.
It may be beneficial to offer a definition of faith, spirituality and religion—Oman (2015:24) discusses how poorly they are defined in literature. Collins Dictionary (https://www.collinsdictionary.com/dictionary/english/faith) defines faith as a confidence in good, a belief in a particular religion or religious God. This is mirrored in literature, with the additional discussion of inclusion in a religious community (Kaye and Raghaven, 2002; Omu and Reynolds, 2014). Oman (2015: 26) provides a definition of contemporary religion as the organised, communal and institutional elements of faith. Because what is meant by ‘religion’ became more restricted towards the end of the 20th century, there was a rise in the number of publications that used the term ‘spirituality’ (Oman, 2015: 23), which described a more personal, internalised version of faith. Spencer (2012) of the Royal College of Psychiatrists described spirituality as denoting a cosmic or divine inspiration in everyday life, a transcendence beyond daily physical needs to a purposeful existence, a sense of not being alone.
This article focuses on some of the traditions and beliefs of the most prevalent religions in England and Wales, according to ONS data (ONS, 2013), these are by no means exhaustive. Within each religion as a broad heading there are variations and subdivisions (Bonura et al, 2001), and the focus remains on the broader definitions. Any considerations raised here are only proposed as such, because in all care individuals and families have nuances and variations in how they choose to practise their religion; an open dialogue around specific practices can aide in providing the best care for an individual and their family. It is also important to consider that children or young people may have different thoughts or beliefs than their parents or carers (National Institute for Health and Care Excellence, 2019), and thus a care plan should be agreed with the young person, as well as their parents or carers.
Beliefs during and after death
Christian families
There are some differences acknowledged within Catholic and Protestant faiths in terms of end-of-life decision-making, although some research suggests that it is the manner in which a person chooses to practise Christianity that has more of a bearing on decision-making. For example, traditional Catholic beliefs do not support the use for extraordinary measures, such as such as ventilation or dialysis, whereas for a person with more moderate belief it may be that the decision for extraordinary measure should be weighed against their personal moral and ethical standpoint, eg the importance of maintaining the life of a loved one outweighing the traditional avoidance of using an extraordinary measure such as temporary ventilation (Clarfield et al, 2003; Sharp et al, 2012). Furthermore, there needs to be clarity with regard to the goals of continuing treatment because, if the goal is to prolong life without the prospect of cure, this may affect the decision based on a Christian standpoint (Clarfield et al, 2003).
A baptism—a ceremony to induct someone into the Christian faith—is one of the most common faith requests made in emergency or critical care. In emergency circumstances families may ask a Christian member of care staff to perform a baptism, which is accepted by both Church of England and Catholic Churches (Campbell and Campbell, 2005).
In relation to organ donation, in Christianity there is a belief that nothing that happens to the body during or after death can alter the soul's relationship with God, but also that an act of love and giving can be viewed as following the example of Jesus (NHS Donation Service, 2021).
In Christian faith burial or cremation may be acceptable, and funerals vary by church.
Jewish families
During end-of-life care and immediately after the child has died, they must not be left alone; prior to death this is seen as honouring the dying, and after death it is to ensure the sanctity of the body (Bonura et al, 2001). The child is then washed and wrapped in a linen shroud ready for burial (Bonura et al, 2001; Choudry et al, 2018). After death, Jewish families may wish to bury their loved one as quickly as possible (within 24 hours), although this may be delayed if the death has occurred on Shabbat (Sabbath) (Choudry et al, 2018). In the Jewish faith, there is a range of beliefs about what happens after death: some believe in the resurrection of the body and soul, while others believe only in the resurrection of the soul. For this reason, beliefs about cremation vary, with many believing that the body should remain intact (Bonura et al, 2001). After death, families observe a period of mourning called shiva, during which mirrors are covered and people do not work, shave or wear make-up (Bonura et al, 2001).
Although the theory of organ donation is sanctioned in the Jewish faith, there are conflicting opinions as to precisely at which point death occurs. This is especially important because Jewish people believe that no organ should be taken from a living body (NHS Organ Donation Service, 2021).
Muslim families
Families who practise the Muslim faith may wish to prepare the child's body after death, with the child oriented towards Mecca (Gatrad, 1994; Al Mutair et al, 2019). After the patient has died, the Muslim custom is to straighten arms and legs, then close the eyes and mouth (Gatrad, 1994). In some countries, the family may also wish to have care, such as washing the body of the deceased patient, carried out in holy or blessed water (Al Mutair et al, 2019).
It is tradition to bury the person who has died as soon as possible (usually within 48 hours), and some families will observe a fast until the burial has taken place (Gatrad, 1994; Leong et al, 2016; Swihart et al, 2021). After death and positioning, the patient is washed by family members of the same sex, although this is not applied strictly for children aged under 8 years. After the body has been washed, it is shrouded in three pieces of plain cloth or may be dressed in clean clothes (Gatrad, 1994; Brown and Warr, 2007:172). If a non-Muslim staff member needs to touch the body after death, they must wear disposable gloves (Griffith, 2009).
Although there are 100 fatwa (non-binding legal rulings on a point of Islamic law) pertaining to organ donation, there is no clear overarching guidance, and many Muslims have questions over the act of organ donation (NHS Organ Donation Service, 2021). In a study by Kari et al (2014) undertaken in Saudi Arabia where Islam is the only official religion, 11.1% of respondents thought that receiving a kidney for their child who has chronic kidney disease would be un-Islamic, but 88.9% said they would take a kidney. However, this was a small qualitative study and the participants' religious beliefs were not explicitly stated.
Buddhist families
Although Buddhist families again may interpret their faith in different ways, they may view the mechanical action of prolonging of life as stopping someone from passing into the next phase of life and collecting the reward for their karma (McCormick, 2013). There is also debate as to what constitutes the prolonging of life. McCormick (2013) debated the use of enteral feeding and questioned whether the provision of feeding could be considered as the provision of comfort towards the goal of a peaceful death or sustaining and prolonging the life of the patients. Buddhism is neither for or against organ donation, so it is a matter of individual choice (Buddhist Society, 2021). The chairman of the UK-based Buddhist Society has supported organ donation as an act of generosity (NHS Organ Donation Service, 2021), ultimately supporting human life.
Chan et al (2011) discussed the importance of meditation at the end of life as part of the preparation for death, and found that some Buddhists thought that the use of opioids and other strong pain relief can inhibit meditation. This meditation continues throughout end-of-life care and importance is placed on a calm, quiet environment for chanting, prayer and meditation for the patient and family. This is important because Buddhists believe that the state of mind prior to death affects the state of mind in rebirth (Chan et al, 2011). Patients may wish that special prayers of last rites are said by a Buddhist monk (Griffith, 2009). After death some Buddhists believe that the body should be left undisturbed for at least several hours, because of a belief the person has not fully died for hours or sometimes many days after death has been pronounced (Public Health England, 2016).
Not every patient will be a teacher (a spiritual friend) or a student (a person with an open mind committed to learning about the Buddhist way of life), but where there is such a student–teacher relationship, in the time before death a close student may ask to stay with the patient to honour them (Chan et al, 2011).
Many Buddhists prefer to be cremated rather than buried (Griffith, 2009).
Hindu families
Similarly to Buddhist faith, for Hindu families death is a precursor to rebirth, part of a cycle of mortal living, death and rebirth, with karma being carried forward into the next life (Singh and Freeman, 2011). Most often Hindu families believe that the date and time of death is predetermined, therefore efforts to sustain life such as mechanical ventilation may be viewed as an interference with karma (Singh and Freeman, 2011). Families may wish to sing, pray and read aloud and many patients may wish to be nursed on the floor to be in proximity to mother earth (Griffith, 2009).
Hindu families believe in karma and rebirth, with donation being viewed as one of the virtuous acts. There is a focus on selfless giving (NHS Organ Donation Services, 2021). In circumstances where organ donation may be possible, faith beliefs may again play an important role, but little is publicly acknowledged or discussed with regard to organ donation in children (Aktas et al, 2019). For many families, there needs to be a discussion about what they consider death in light of their faith—this is pertinent because some may believe that brain-stem death is equitable to the stopping of the heart, while others do not (Bonura et al, 2001; Bülow et al, 2012; McCormick, 2013).
Many people of the Hindu faith may wish to die at home. However, if the person is in hospital, after death a family member may want to wash the deceased themselves and, if family members are not available, they may ask that staff do not wash the patient, but that they wear gloves to close the eyes and straighten the limbs, before wrapping the body in a plain sheet (Griffith, 2009).
Sanctity of life
Many religions have a strong belief in the sanctity of life, which means that there may be concerns around treatments and care that can be perceived as hastening death, ranging from opioid pain relief to repositioning (Bonura et al, 2001; Bülow et al, 2012). Bülow et al (2012) also found that the degree to which a person or family consider themselves to be practising rather than simply affiliated to a religion also affects their decision-making around end of life. This belief in the sanctity of life can lead to families asking to prolong medical care against medical advice, awaiting divine intervention (Brierley et al, 2013). Conversely, withdrawal of treatment and the use of opioid medications is far more acceptable in religions that place a higher value on dignity and peace (Clarfield et al, 2003).
It is also of note that in some religions the sanctity of life may not simply refer to the body but also to mind or soul (Clarfield et al, 2003; Baranzke, 2012). In most cases, where there is conflict between a parental religious belief and medical opinion, a solution can be achieved after consulting an appropriate religious leader together with the family (Brierley et al, 2013).
Communication
For some families, making practical plans or arrangements following the death of their child can add to a sense of control. However, again, this should be considered in the context of the family's faith. For example, in some Jewish families it would be deemed inappropriate to consider funeral arrangements before the child has passed away (Bonura et al, 2001).
McCormick (2013) stresses the importance of discussing with the families and patients their beliefs about karma, prolonging life and with drawing or withholding treatment, as well as the importance of specific rituals. For other families, as Singh and Freeman (2011) point out, discussing the imminence of death can be viewed as hastening the end of life for the patient.
For some religious communities the act of visiting and caring for the sick or dying person is viewed as honouring the patient (Al Mutair et al, 2019), or as a good deed viewed favourably by God (Gatrad, 1994; Bonura et al, 2001). Due to this, it may be appropriate to extend visiting hours in certain circumstances, although many UK child units now have open visiting for parents, this it is often limited to the extended family.
Challenges to providing faith-sensitive care
A lack of diversity in healthcare leadership can mean a lack of knowledge within care (Betancourt et al, 2002). A lack of knowledge around differences in aspects of religion, such as diet, holy days, prayer practices, the role of faith community leaders and other issues, can be overwhelming. However, while communication with patients and their families should always form the basis of care, professionals also have a responsibility to learn about how to provide faith-sensitive nursing care. Practically, there maybe simple things, such as using a multifaith calendar to help raise awareness of holy days, or contacting inpatient kitchens to learn about the different diets that they can cater for (Griffith, 2009).
Using a framework or model, such as Stoll's (1979) guidelines for spiritual assessment, Highfield's (1993) The PLAN model or Puchalski's (1999) FICA spiritual assessment model may also be helpful in incorporating faith care in a structured way, rather than assuming that it will be part of the natural, unseen, work that was found by van Loome (2005).
Conclusion
One of the themes that came through a study by Al Mutair et al (2019) is the idea of being united in difference, whether that be culture or religion. Being different promoted respect for each other, for autonomy and choice, as well as enhancing a sense that the feeling of difference is a shared experience. These are important components of patient care and, as long as nurses are respectful in their questions, families may wish to share elements of their faith to ensure that their needs and wishes are provided for. The care that nurses provide during palliation and end of life will be remembered and thus it is important, where possible, to get it right.
KEY POINTS
- Patients and families value nurses having knowledge of their faith or spirituality. This can lead to less stress during end of life care
- Talk to families, discuss their beliefs and wishes for end-of-life care, but come to the conversation with an awareness of the ideas and beliefs that they might wish to discuss
- Think about how you can action potential patient requests within your practice setting (eg special diet, prayer spaces, faith services)
CPD reflective questions
- How could you ensure that you are caring for families in a way that respects their faith needs?
- How could you raise awareness of different faith needs within your practice area?
- What might be the facilitators and barriers to faith sensitive care provision in your practice area?
- If a patient or family in your care wanted you to action one of the considerations mentioned in this article how could you do this in practice?