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Challenges In Meeting Spiritual Needs Of Terminal Patients Nursing Essay

Info: 5510 words (22 pages) Essay
Published: 1st Jan 2015 in Nursing

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A number of authorities have expressed the view that spiritual, religious and emotional health has little place in a health care system which is organised by managers and informed by science. (viz. Lynn 2001) The move towards evidence based practice and hard technologically based health interventions are arguably eclipsing the need that many patients have to acknowledge and explore their own spirituality. This is probably particularly so in aspects of healthcare such as palliative care or when patients are facing major surgery, when they are more forcibly confronted by their own mortality. (Malin and Wilmot et al. 2002)

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Many have suggested that the two concepts of scientific endeavour and spiritual beliefs and mutually incompatible, but one can be reminded of the words of Albert Einstein who was said to have replied to a reporter who asked him if he could prove that God existed scientifically “Sir, I will prove that God exists scientifically the moment that you can prove to me that an atom exists theologically”. (cited in Kuhse & Singer 2001).

Before specifically considering the various challenges that the nursing profession may find when dealing with patients whose concept of spirituality may be significantly different from their own, it is instructive to consider the sociological and cultural aspects of spirituality which may inform the belief patterns of many of the people who the nurse has to deal with as patients.

Einstein’s response, although often quoted, does little more than highlight the point that science and theology are different belief systems, with different vocabularies and different parameters and requirements for understanding. It is however, clear that science, spiritualism, theology and many other of the great belief systems of the major cultures, are combined in varying degrees, in different health care systems throughout the world.

The anthropologist Marcus Griaule stated in his often quoted series of monographs on Dogon culture and the Ozotemmeli tribe in the Amazon rain forest, the fact that he observed that virtually all the “Medicine” practised by this particular culture was based on spirituality, blind ritual and the unshakable belief of the population in the fact that supernatural forces would cure them, if they deserved to be cured. (Griaule 1948). This is by no means an isolated finding. Other authorities such as Evans-Pritchard independently published similar findings with both the Azande Indians in 1937 and the Nuer tribes of South America in 1956. (Evans-Pritchard 1936 & 1956)

Another anthropologist, Alfredo Hultkrantz, carried out a major comparative study of the primitive peoples of the Americas and came to similar conclusions. (Hultkrantz A 1967). It would therefore appear reasonable to confidently conclude that to consider spirituality and, in the wider context, individual religious beliefs, as part of a general healing culture, has both considerable sociological precedent and authority.

One of the major and fundamental challenges of healthcare professionals in dealing with issues of spirituality was identified by Illich in his writings in the 1990s in which he highlighted the fact that it was the speed of scientific and technological advance in western medicine that was so great that the healthcare professionals working within it had to adapt with a series of coping mechanisms (Illich 1996). Graham suggests that this speed of development is such that it means that modern medicine is virtually unrecognisable even to those who were practising only forty years ago which equates to one professional lifetime. The same authority goes on to suggest that it is this speed of change that has been responsible for the reduction of the traditional skills of the caring professions essentially to those of technicians. Graham sums up his beliefs in the paragraph:

Medicine and its practitioners have achieved great wonders, but have also developed new limitations. Drug companies have become bigger and richer. Doctors have become overworked, but coping rather than healing. The patient (Latin “patior”, I suffer) is asked to put his faith in the drug more than in the doctor (Latin for teacher). Patients have become less respectful. Healthcare professionals are afraid of malpractice. The differences between traditional medicine and the increasingly confident “alternative” systems have become more pronounced. (Graham cited in Powell 1997)

Some may suggest that this is an unduly cynical view of the healthcare professions. Clearly there is no doubting the pace of technological progress and this is not suggested, but one could agree with Singer et al. who suggest that it is a major part of the challenges which face the healthcare professionals in the modern world, to maintain and perpetuate the more traditional values and skills, which include interpersonal communication, individualised care and compassion which are central to good care but are equally very hard to quantify in a scientific or qualitative way. (Singer et al 2002), One could argue that such skills are every bit as important in a professional holistic approach to healthcare as are the modern technological skills, techniques and knowledge that modern healthcare practice requires.

To explore this point further, one can observe that, in the modern context, in the words of Schattner, “The most comfortable accommodation between the scientific and the spiritual and emotional (or holistic) elements of caring occur in the Hospice movement.” (Schattner 2003).

Dean reminds us that in consideration of the fundamental concept of holism, which is central to many considerations of spirituality, one can note that the Anglo-Saxon word “health” finds its best translation as “wholeness” and hence the derivation of the proper, but often forgotten, meaning of ‘holistic medicine’, literally medicine of the whole. (Dean A. 2002).

Many authorities (viz. Veitch 2002) suggest that it is not possible to aim to provide a complete holistic programme of care without a consideration of the spiritual elements of a patient’s needs.

In specific consideration of the challenges that the healthcare professionals may face in dealing with spiritual need of their patients, it is important to observe that in the current multicultural climate which pervades the social structure of the UK today, medical practice is, to a large extent, dependant on its core values, on the culture from which it derives. This concept is perfectly demonstrated by the excellent and insightful paper by Paul Murray et al. The authors presented a qualitative study of medical care provided to the terminally ill and dying patients in two hugely diverse and contrasted cultures. One in an industrial region of south-west Scotland and the other in rural Kenya. The study concluded that both cultures sought to provide good holistic care for their particular sub-population, but the actual provision made for the “spiritual, emotional and financial expectations of the individuals” is fundamentally different in the two societies. The concerns are summed up by the authors as:

The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. (Murray and Grant, et al. 2003)

The major differences in healthcare provision were, to a degree, reflected in these requirements. The Classen study of 1999 demonstrates that, in the typical Scottish society, the community support mechanisms, the healthcare and any necessary medications were more than adequate and were freely available to the patient, but were frequently underused. In contrast, the Kenyan community, these facilities and considerations as well as much of the basic equipment, basic medication, particularly analgesia and general assistance for basic care, were frequently not only unaffordable but also unavailable. (Clasen 1999). The authors summed up the qualitative results of study with the assessment that

this resulted in “unmet spiritual needs in the Scottish community and unmet physical needs in the Kenyan society”. (Murray and Grant, et al. 2003)

The implications and message of this study, in the context of this review, is that the Kenyan patients felt that, in general terms, their “psychological, social, and spiritual needs were met by their families, local community, and religious groups”, whereas the Scottish patients in the same types of situation felt that their physical needs were the responsibility of the healthcare professionals and that their non-physical (spiritual and emotional) needs often went unmet by either the healthcare professionals or their families.

In order to provide a balanced argument on this point, and to help define further the challenges that the healthcare professionals may face, one could consider the exceptionally well written and thought provoking paper by Irene Brignall. This paper was written from the viewpoint of a patient, and its importance was recognised by the BMJ, who took the unusual step of publishing it. Essentially, it sets out, in an erudite fashion, the need for the healthcare professionals to consider of the spiritual and emotional needs of a terminally ill patient. The title of the paper is lifted from a quote from Dame Cecily Saunders “You matter to the last moment of your life” (Brignall 2003). A critical analysis of the paper shows that the thrust of the argument is that it makes a clear distinction between the spiritual needs and the religious needs of individuals. Brignall points out that some authorities write as if these two entities are actually synonymous (viz. Malin et al. 2002), but the author makes the point clear with the comment:

Religious needs are commonly perceived as being those needs that are actually generated (in an almost self-serving way) by the trappings, rituals and requirements of organised religion, whereas spiritual needs can actually be considered as a deeper and more fundamental requirement of the human condition and can be completely independent of a formal organised religious base. (Brignall 2003 pg 14).

Although Brignall suggests that there is a clear distinction between spiritual and religious needs of a patient, it would be wrong to imply that there was no overlap or link between the two. (Haralambos & Holborn 2000). Brignall goes on to tell the reader that, in her particular case, her spiritual needs are dealt with by her Christian beliefs. To cite Brignall verbatim:

I cannot imagine a life without a spiritual dynamic, with or without illness, and, for me, a life shared with God is the way to wholeness and peace. Though my faith is central to my life, I recognise that others may not feel able to exercise faith or pray when the going gets tough. (Brignall 2003 pg 23).

The thrust of the Brignall paper is a reflection and critical analysis of her own experiences on a palliative care ward, a situation from which she ultimately recovered. Her initial assessment was that the spiritual and emotional considerations of the patients are of much lesser importance in our current healthcare system than considerations such as pain relief and appropriate therapeutics. She backs this up with direct observation when she was present on the ward when another patient died and how she was shocked to find that many patients died alone. She describes it thus:-

I was shocked to discover that death claimed some patients suddenly when they were alone in the night. There seemed to be no warning, no time to call for loved ones to be near when they passed away. (Brignall 2003 pg 42).

This was not necessarily due to apathy of indolence, but may have been a combination of pressure of work, an acceptance of the ‘inevitable’ and a lack of appreciation of the needs of a particular patient which left what she saw as a gap in the holistic care near the point of death.

This seems to exemplify the conclusion that, in the current healthcare system in the UK, there can be an obvious gap in the provision made for the “emotional and spiritual needs of a patient at the very time in their lives when a scientific evidence base and all the management strategies in the world were of no value whatsoever.” (Seedhouse 2008 pg 19)

One of the major challenges presenting to the healthcare professional is the fact that there is a wide spectrum of spiritual needs in the population. Brignall, on the one hand, may represent one end of the spectrum, arguably the atheist may represent the other. The healthcare professional therefore clearly has to consider each case on its merits. One could therefore conclude that in order to try to provide an individualised, patient centred care plan, one would have to directly address each patient’s spiritual needs if one was going to provide a plan that was meaningful and helpful for each patient. (Herman 2007). For some patients, this may be relatively easy as they may have a clear and fixed idea of what they require. Others may not have defined their own thinking on the subject prior to finding themselves in some form of life changing situation such as palliative care and may therefore need to be helped to determine what their particular needs actually might be.

The corollary of this position is that one can then go on to postulate that there are some elements of spiritual care that appear to be almost universal, but the current trend which promotes the individualised patient care plan, requires the healthcare professional to consider the fact that different individuals will need different degrees of emphasis to be placed on different elements of their care. (Williamson 2005)

One would not argue against the fact that the healthcare professional is expected, as a matter of course, to offer whatever medication, treatment, surgery or general bodily care are considered necessary for a particular situation as part of their everyday working experience. (Marks-Moran & Rose 2006). To return to the point made by Graham in the early part of this review, if one accepts that the general holistic approach is a valid and useful model of patient care, then it inevitably follows that, if we accept Brignall’s view, then at least at the point of death (if not at any other time) human beings actually need a great deal more that healthcare professionals who are simply acting as scientists, managers and technicians, are able to offer. (Lynn 2001)

To quantify some of the challenges that the healthcare professionals have to meet, luminaries such as Seale et al. point out that the “physical, emotional and spiritual needs” of each individual patient must be “identified, addressed and met”. (Seale &, van der Geest 2003). The same authors go on to say that the healthcare professional, when considering the spiritual needs of the patient needs to be empathetic to those patients from a variety of different social and cultural backgrounds, different faiths and indeed, even those who have no formal professed faith at all.

Many texts on the subject of spirituality and faith seem to show an implied assumption subject that spiritual needs of the typical NHS patient are automatically regarded as orthodox Christian values.

There is often an implied assumption in many textbooks on the subject that spiritual needs are automatically regarded as orthodox Christian values. (Galek & Flannelly et al. 2007). Although this may well be the case, it cannot be assumed as a generality. Watson comments on the notion in the following terms “It is remarkably arrogant to think that the Christian tradition is the only eventuality.” (Watson & West et al. 2006). The empathetic healthcare professional should consider that religious tradition is not a direct sequiteur from race or skin colour, and equally must consider that the “Hindu, Moslem, Azande Indian or indeed atheist, may still have their own intense and personal spiritual needs and spiritual identity and these should ideally evaluated, recognised and respected.” (Coulter 2002 pg 34)

If one considers the ‘challenges’ in the context of nursing theory. The analytic reductionist would analyse the issues and define them either in subjective terms if they ascribed to the intuitive, holistic or sociological schools, or in objective terms if they preferred the reductionist rationalist school (Mason & Whitehead 2003)

This type of theoretically based approach allows for at least two conclusions. The first position is that it is clearly possible to take a rational and subjective view that spiritual matters can be considered to be a completely separate entity from the current scientific rationales and models of healthcare. One can model them as being in a “separate box”. (Speck & Higginson 2004). The second conclusion arises directly from the first and that is that if spirituality is a separate entity, then it has no real place in evidence based healthcare.

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Although one can argue these points, it is obvious that both views completely minimise the fact that the human condition itself, although it is obviously amenable to both qualitative scientific assessment as well as quantitative measurement, has far more facets than nursing theory has the ability to quantify. (Spicker 2005)

One of the undoubted challenges of the nursing profession is the fact that humans, particularly when they are ill, are very complex creatures. The problem with the comparatively simplistic and reductionist views set out above, is that “any experienced healthcare professional would probably agree with the observation that one would almost never find a human who is capable of such complete compartmentalisation of each aspect of their life unless they had an extreme degree of psychopathy.” (Maltese 2000 pg 1296)

If one returns to the holistic model, then even this can represent a challenge to the healthcare professional, as there are some authorities who define holism and minimise the spiritual element (viz. √ėvretveit 1998). Penman et al. conversely suggest that this is wrong, and the very definition of holism should include all elements of the patient’s subjective and objective experiences. In addition, they define the holistic professional as “one who has an open mind and is willing to consider all modalities of treatment” and they go on to suggest that such a healthcare professional has patient participation, through the means of empowerment and education, as a priority in their treatment decisions. (Penman & Oliver et al. 2009)

As with any challenge of service delivery, one only knows how effective the delivery has been if there is a measure of evaluation available. Considering the issues from a purely scientific viewpoint, one could audit whether or not a patient was receiving spiritual and emotional care. If this is the case then Clarke and Rao highlight the fact that the problem with this concept is that there needs to be a suitable tool or model for measuring such quality indicators. (Clarke & Rao 2004). According to Maxwell, the models that are currently available are not particularly discretionary in their definitions of spiritual need (Maxwell 2004) and, as a result developed and evaluated a suitable tool evolution from the Donobedian assessments (Donobedian 1980)

This was later modified by Toon into his “four-pronged assessment” of biomedical, business, teleological, and anticipatory elements of health care. (Toon 2006). It is the teleological element of the model which considers the acceptability and the humanity of the healthcare package provided which is probably about as close to a definition of the spiritual element as one is likely to get. In the author’s own words -” not just dealing with expressed demand but also with unmet need.” (Maxwell 2004)

This then brings the rational extension of the thrust of this review into another major area, which largely derives from the arguments set out so far in this essay. It is the degree to which it is appropriate that nurses, and other healthcare professionals should provide spiritual care when, one might argue, there are other demands upon their time and other suitably qualified individuals might be better placed to provide such an elements of care.

To an extent, this is partly determined by a definition of exactly what spiritual care actually is. Daaleman et al. offer an insight in their recent analysis of the issues. (Daaleman & Usher et al. 2008). They point to authorities such as Teno et al. who found that over 67% of people die in hospitals or long-term care facilities without assured access to spiritual care (Teno & Clarridge et al. 2004). They also point to work by Walter, who specifically considered the problems of providing spiritual care in the palliative care situation and who commented “Patients approaching the end of life traverse an unknown spiritual terrain, and a growing body of research shows that this journey often awakens a uniquely spiritual dimension among patients and family caregivers; most desire acknowledgment and support for their spiritual needs from health care workers.” (Walter 2002 pg 134).

In congruence with the point made in a preceding paragraph, Walter goes on to observe that “Physicians, nurses, and other healthcare professionals are being called upon to assume greater responsibility for providing spiritual care, which are tasks that have been traditionally assigned to pastoral caregivers and clergy. Controversy remains, however, over whether clinicians and other health care workers can or should provide this care. (Walter 2002 pg 136).

If one returns to the problems involved with the definition of spirituality care in this context, then an overview of the literature clearly shows that it is both uncertain and has multiple interpretations. Shea suggests that a theological or religious understanding of spiritual care generally highlights the features of individual meaning, connectedness, and inner peace and will invariably be inclusive of religious rituals, beliefs, and communities. (Shea 2000)

Those studies which specifically consider nursing as a profession, tend to define spiritual care as referring to others, facilitating religious rituals and practices, and being present for patients. (viz. Ross 2006)

There are a number of specific studies which consider the practicality and the challenges of offering appropriate spiritual care to patients. One specific sub group, that of hospitalised children, is studied by Feudtner et al.

Hospitalised terminally ill children are rather different from the adult population insofar as a recent study suggested that children, as a group, are far more likely than adults to consider themselves to be religious or spiritual, with over 90% stating their belief in God or a higher power. (Feudtner & Haney et al. 2003). The authors cite an interesting survey carried out by a group of hospital chaplains, which was designed to see if a model of spiritual well-being index accurately measured how children manifest spiritual distress and came to the conclusion that unless healthcare professionals “gave them permission” to talk about spiritual matters, usually by broaching the issues themselves, the vast majority of children would not mention the matter to the healthcare staff. (Pehler 2006)

The child’s typical concepts of spirituality tend to differ from those of the typical adult in a number of ways. As an illustrative example, one can cite the fact that

the experience of pain in a child, particularly the older child, can lead them to intense spiritual inquiry regarding the meaning of suffering. In a similar way, hopes and fears, together with problematic relationships with family members or schoolmates, stigmatising cultural beliefs, or one’s understanding of an illness and its medical care are all areas where a child can need spiritual help and input.

Although there is a great area of overlap, the healthcare professionals interviewed in the Feudtner et al. study noted that the typical child required different methods of provision of spiritual care and these could include empathetic listening, praying with children and families, touch or other forms of silent communication, and performing religious rituals or rites.

Simply talking to the child or family about their spiritual journey or even inquiring how the family had addressed spiritual needs previously were also viewed by the healthcare professionals as being effective. There was a significant divergence of opinion however, regarding the effectiveness of mediating between the family and the health care team on either spiritual or medical issues or between the family and their spiritual community or providing particular spiritual resources.

The Daaleman study is typical and certainly useful in this respect. (Daaleman & Usher et al. 2008). This was a qualitative study which specifically considered the spiritual care offered by healthcare professionals to terminally ill patients both from the viewpoint of the healthcare professional as well as the patient or their main caregiver.

It is worthy of note that the majority of the healthcare professionals interviewed rated themselves as ‘not religious or slightly religious’ and ‘not or slightly spiritual’ in their own personal lives. Those respondents who did ascribe to a particular belief pattern were categorised as representing nondenominational, Hindu, Methodist, atheist, Catholic, Jewish, and Christian, so it was possible to conclude that the respondent sample was suitably heterogenous.

There is no merit in relating all of the results, but the relevant findings were that simply being present was the dominant theme that was considered to be important. This was generally defined as being a shared encounter which was marked by the deliberate ideation and purposeful action of care that went beyond medical treatment, giving attention to emotional, social, and spiritual needs. The key to “being present” was defined by one respondent as a physical proximity to the patient which facilitated communication on the caregiver’s part so the caregiver could be fully attentive to the patient, sometimes transcending explicit modes of communication. Simply holding hands or touching to show support was considered to be spiritual support. This is consistent with, and has the precedent of, the work by Puchalski, who defines compassionate presence as a quality of spiritual care. In this context, presence, has a clear and specific meaning and includes, as well as a physical proximity, an intention to openness, to connection with others, and to comfort with uncertainty. (Puchalski & Lunsford et al. 2006). Other authorities expand this view further and use it to include not only being present, but also actively sharing personal beliefs and experiences, or “sharing the self,”

A second major element was “Opening Eyes” which was the process by which caregivers both recognised and became aware of the patients’ humanity through discussing their lifetime experience and stories together with their individualised experience of their illness trajectory which helped the healthcare professional to obtain an understanding of the patient’s perspective of his or her illness, sometimes incorporating viewpoints from their family and close friends. The respondent’s answers suggested strongly that this was a bidirectional process, whereby both patient and healthcare professional were afforded the opportunity to recognise the uniquely human dimension in the other.

In any consideration of the challenges of spiritual care, a major consideration must be the determination of any specific barriers to the provision of spiritual care. The Daaleman study is useful in this respect as well as it specifically considers this issue. The major barrier to the provision of spiritual care was identified by virtually all of the respondents as “a lack of time”. To a lesser, but still significant degree, another barrier was a discordance between the social, religious, or cultural backgrounds of both patient and healthcare professional which was sometimes identified as creating an atmosphere of mistrust and therefore a barrier to good communication.

One nurse made the perceptive comment that, having received a terminal diagnosis, one particular family (patient and caregivers) became “born-again Christians” which made the management of the situation very difficult. Because the illness trajectory was clearly downward, the family made it very clear that “they only wanted me to be their nurse if I said that I believed in miracles.”

The converse consideration, that of facilitating factors for spiritual care, is equally important as one of the major challenges in providing appropriate spiritual care is the generation of facilitating factors every bit as much as it is in overcoming the barriers. An almost universal theme amongst respondents was the ability to have ample time which was unencumbered by competing clinical demands to foster relationships was identified as the most important facilitating factor.

A second element which, to an extent, is dependent on the first, was the ability to have effective communication in which the healthcare professionals were able to gather information and put together a coherent clinical picture which was derived from for patients and family members. This allowed for informed conversations and considered comments which were appropriate for the patient’s own particular circumstance.

The third major facilitating factor was the personal experiences of the healthcare professional, not in their professional life but within their own family. Two particularly revealing comments were “My other grandmother had end-stage Alzheimer’s, and so we didn’t put in a feeding tube and we didn’t do that, so I suppose sometimes I reference things like that…. So I do think that I came from a family that is a little bit more comfortable with doing things like that versus some families that try everything.” The second was “I grew up with a lot of elderly great aunts and uncles who didn’t have children and, consequently, I had to provide a lot of social support for them. So I kind of, you can see this coming.”

One has to note that the concept and definition of spirituality is different with different authorities. Catholic social teaching suggests that spirituality is a process of co-creating, which effectively means a process whereby the healthcare professionals positively and fully enter into encounters with their patients and both parties mutually recognise each others’ humanity. (Incandela 2004). In the Daaleman study, this type of definition (co-creating) was used and focussed on the working out of a care plan by the healthcare professionals incorporating the holistically assessed needs of the patient as well as those of the care givers. These externally appraised elements were central to the creation of a realistic care plan which allowed for specific time elements to be included for incorporating the patient’s spirituality into the care package.

The Daaleman study, despite noting the comparative absence of explicitly religious practices or beliefs amongst their sample of healthcare professionals, found that this absence was quite significant in their sample of respondents. The healthcare professionals reported that spiritual care was provided to their patients the context of the recognised categories of human value, dignity, and shared decision making, rather than explicitly through any shared practices with the patient such as prayer, or through overt discussions of religious or theological issues at the bedside.

Various models are available in the literature relating to the delivery of spiritual care which have some relevance to the challenges encountered by the healthcare professional when engaged in the delivery of spiritual care.

The three major models in this area are Sulmasy, Puchalski and Gordon.

It is worth considering each, at least in overview,


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