‘How can care be spiritual?’ by Dr Janice Clarke, Institute of Health and Society, University of Worcester.

It’s been noted that Revaluing Care bloggers haven’t had a lot to say about spiritual care  September 21, 2013 by Sue Westwood  so I thought I’d better step up to the plate. Nursing has tapped into the notion of spirituality because of the drive to be holistic; if nurses are supposed to look after the whole person, how could we overlook this essential bit.  Spirituality and spiritual care has been absorbed into the matrix of needs, problems and assessment which is how much of nursing is described.  Spiritual care is most often seen as the way to fill a perceived need in patients which is preventing them from achieving spiritual wellbeing and the ways most encouraged are by talking, or through putting in place something else, which could be anything from pain relief to a chaplain.

But if you ask most nurses what they think spiritual care is you’ll get some replies that don’t have anything to do with problem solving.  McSherry and Jamieson (2011) did this  and found that over 80% of more than 4000 nurses thought that they could provide spiritual care by showing concern, kindness and cheerfulness (this came second only to referral to a chaplain) but only 5.3% felt always able to meet their patients spiritual needs. So  why do they spend so much time not being cheerful, concerned and kind?  Of course the mismatch is because  although nurses interpret spiritual care as being about how they behave with patients, and how they ‘care’, they are taught, that spiritual care is about spiritual assessment and talking about spirituality and they don’t feel able and confident to engage do either (McSherry and Jamieson 2011). Similarly patients are more likely to say that they think spiritual care is about how a nurse is with them rather than how ably she is to ‘plan’ their spiritual care (Taylor and Mamier 2005).

This is where spiritual care and ‘care’ for me, converge.  Interestingly the literature about ‘care’ and the literature about ‘spiritual care’ don’t actually intersect which is another phenomenon to do with spiritual care which baffled me when I started on this trail. This was the area I set out to research for my doctorate and it grew into a whole book about how to do actual day to day ordinary care in a spiritual way (Clarke 2013). ‘Spiritual’ in this sense is about relating with compassion. The way spirituality is described in relation to health, is in terms of spiritual wellbeing which is about wholeness, fulfilment, identity, meaning, confirmation and feeling valued and loved. It seems to me that nurses can behave in a way that helps patients to feel this kind of spiritual wellbeing in all the ordinary things they do – or they can do the opposite.

This is why I’ve focused on how   professionals relate to patients and especially in how they provide physical personal care such as in bathing, moving and eating (Clarke 2013, see below).  If nurses can’t express spiritual care in how they relate in every ordinary encounter and task, how can we claim that spirituality is really at the heart of nursing?

Practicing spiritual care at mealtimes – from Spiritual Care in Everyday Nursing Practice: A New Approach (Clarke 2013, p.185)

Action  

  • Prior to the mealtime patients should be invited to choose the food they will eat.
  • Familiarise yourself with the assessments of the patients in your care
  • Invite people who might need assistance   to work out a plan for the help they need so that everyone knows what will happen when the food arrives.
  • There should be choices available which are compatible with the patients’ personal, cultural and religious needs.

Spiritual rationale

  • Empowers the patient and shows respect  for their personhood.
  • Shows competence and professionalism which expresses care and valuing of patients.
  • Empowering and shows you value their contribution.
  • Relieves the anxiety in patients of worrying if food will be okay and whether they will be able to eat it. So that patients can feel more relaxed and focus their energy on getting well.
  • Shows you are sensitive to their individuality and religious and cultural preferences, so recognising patients as full members of the community.

Action

  • Make patients comfortable and ready for eating. Give the chance to wash hands and face ready for eating.
  • Give the option of sitting away from their bed and with other people if possible.
  • Tidy the area around each patient removing urine bottles and wiping surfaces. Shows sensitivity to and respect for patient’s feelings.
  • Shows competence and attention to detail and so inspires trust
  • Shows how you value the eating experience.
  • Check the food is   appropriate, attractive, the right temperature and prepared so that each person can manage it.
  • Ensure it is what the patients ordered. Expresses care for the patient and shows that they are valuable enough for you to care if they are not enjoying the food.
  • Give help to each person individually without interruption.
  • Ensure the patient is not disturbed while they eat. Monitor what food is eaten and how patients  are managing where appropriate.

Spiritual Rationale

  • Expresses care for  patients’ needs and concern for their recovery.
  • Be prepared to be an advocate for patients to make complaints and make changes  if the food is unacceptable or the amount of help available  is not enough.

Action

  • Be imaginative and creative in finding better ways to manage mealtimes.

Spiritual rationale

  • Shows the patient that they matter and are valued.

References
Clarke, J. (2006) A discussion paper about ‘meaning’ in the nursing literature on spirituality: An interpretation of meaning as ‘ultimate concern’ using the work of Paul Tillich. International Journal of Nursing Studies, 43, 915-921.
Clarke, J. (2013) Spiritual Care in Everyday Nursing Practice: A New Approach. Basingstoke, Palgrave
McSherry, W., Jamieson, S. (2011) An online survey of nurses’ perceptions of spirituality and spiritual care. Journal of Clinical Nursing, 20(11/12), 1757-1767.
Taylor, E.J, Mamier, I. (2005) ‘Spiritual care nursing: what cancer patients and family caregivers want’, Journal of Advanced Nursing, 49(3), 260–267.
Swinton, J., Pattison, S. (2010) Moving beyond clarity: towards a thin, vague, and useful understanding of spiritualty in nursing care. Nursing Philosophy, 11, 226-237.

 

 

 

 

 

 

The Liverpool Care Pathway Controversy: Time to Revisit the Ethics of Care?

Back in July an Independent Review headed by Baroness Julia Neuberger published a report into the controversy over the use of the Liverpool Care Pathway (LCP) – a holistic plan for care of dying patients, within the acute hospital sector (Neuberger 2013) This came in the wake of a long line of recent enquiries into the standards and practices of care within the healthcare sector (Francis 2013, Patients First 2013, Keogh 2013) and in response to media headlines such as “Distraught families allege that the NHS protocol designed to allow the terminally ill ‘a good death’ is being abused” (The Telegraph 29 October 2012).

The LCP had originally been developed by the Royal Liverpool University Hospital and the Marie Curie Hospice Liverpool in the late 1990s, for the care of terminally ill cancer patients. It comprises of 10 key elements, including a recognition that the patient is dying; communication with the patient and relatives; spiritual care; reviews of medication, nutrition and hydration; and collaboration and shared decision-making. All of which are intended to be guidelines that aim to support, but not replace, clinical judgment (Ellershaw 2013, 2).

The controversy centres around the conflict between the recognition of the LCP as a model of good practice, (NICE 2003, 2006) and the findings of the Review that in reality incidents of poor treatment – “uncaring, rushed, ignorant – abound” (Neuberger 2013, 3). The title of the Review, “More Care, Less Pathway” neatly sums up its flavor. It concludes that patients were often treated with less respect than they deserved, with the use of the LCP being reduced to a “tick box exercise” and that communication with the families was inadequate or entirely absent (Neuberger 2013, 3-4).

This tension between laudable intention and implementational failure generates questions about how policy and law can effectively promote practical and realistic care practices and yet remain sensitive to the myriad of vulnerabilities experienced in the face of death. This is all the more pertinent in relation to dying, where care’s traditional preservative purpose is subverted, so that care not only reaches beyond survival but entirely precludes it. Further, the aim of the LCP to “ensure that uniformly good care is given to everyone, wherever they are (…)” (Neuberger 2013, 12) brings into sharp focus the socio-spatial notion of caring (Johnsen et al 2005). This examines the potential of such ‘caring spaces’ as the hospital, to accommodate the apparent merger between the private and the public, the intimate and institutional in the care of the dying. This in turn raises the question not only of institutional support and time for care (Groenhout 2004) but also of whose role it is to care, which feeds into the wider debate surrounding the education and training of doctors and nurses.

It seems evident that the absence of both the virtues (Engster 2005, 55) and practices proclaimed by the advocates of the Ethics of Care, such as a recognition of the relational self (Gilligan 1982), the need for particularist solutions (Bowden 1997) and a recognition of the ‘expertise’ that can arise as a result of practical engagement in caring practices (Ruddick 2009,) were instrumental in the failure in implementation of the LCP. Problems such as poor communication, with “brutal and callous” language being used by clinicians when speaking to relatives about the patient (Neuberger 2013, 25), may be remedied with training. Yet a recognition of the patient’s ‘relational autonomy’ (Nedlesky 2011) in order to foster practices of shared decision-making, or the over-coming of the apparent taboo that even healthcare professionals feel in speaking about death, (Neuberger 2013, 21) may require a more significant change of culture.

One wonders how other, more subtle aspects of the Ethics of Care as it relates to the process of dying, might be feasibly accommodated within institutional practice. How could notions of the embodied experience of the dying patient, which would provide an anchor to the notion of particularity in care, (Fox and Murphy 2013, 13) be recognized? The current link between the LCP and embodiment is a paradoxical one, with the physical body at once occupying the place as its central object, yet silenced by the routine and often unexplained use of heavy sedation and the withdrawal of nutrition and hydration, causing great distress to the relatives (Neuberger 2013, 24). Likewise the accommodation of aspects of spiritual care, such as the importance of religious and cultural aspects of dying, or the desire to place remaining lucid above pain relief in order to cherish time with their relatives (Neuberger 2013, 24). Could a caring response that may even require a retreat from the desire to minimize suffering, ever be countenanced? A recent example is found in the case of VT, a 72 year old devout muslim man whose family argued that their father, for whom they had cared devotedly for 10 years, would want his life preserving for as long as possible, even if he was suffering, as he would view that suffering as an opportunity for purification in preparation for the next life (The Guardian 13 November 2013).

Ultimately, the final recommendation by the Review that the LCP be phased out by July 2014 and be replaced by personalised care plans for each patient, backed up by condition-specific guidance (Neuberger 2013, 48) is surely right. The potential for us and our loved ones to die in accordance with our own view of a ‘good death’ is an appealing one. Yet the Review is also right that a system wide-change is needed to improve end-of-life care, and still one wonders how institutional mechanisms operating under such a nuanced and sensitive approach will be either practical or feasible?

Kirsty Moreton – Birmingham Law School, University of Birmingham.   KLM180@bham.ac.uk

 As a result of the Review, the Leadership Alliance for the Care of Dying People (LACDP) has been set up to respond to the Review’s recommendations and publish a system-wide response, primarily focusing at this stage on clinical practice. Its Engagement Document is still open for consultation until 6 January 2014 https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage.

References:

-           Bowden, Peta. 1997. Caring: Gender Sensitive Ethics. Routledge.

-           Ellershaw, John. 2013. Statement regarding LCP Review Publications. Marie Curie Palliative Care Institute, Liverpool. www.mcpcil.org.u

-           Engster, Daniel. 2005. ‘Rethinking Care Theory: The Practice of Caring and the Obligation to Care’ 20(3) Hypatia 50.

-           Fox, Marie and Murphy, Therese. 2013 ‘The Body, Bodies, Embodiment: Feminist Legal Engagement with Health’, in Davies, Margaret and Munro, Vanessa. (eds) The Ashgate Research Companion to Feminist Legal Theory. Ashgate 249.

-          Gilligan, Carol. 1982 (2nd edn 1993) In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.

-          Groenhout, Ruth. 2004. Connected Lives: Human Nature and an Ethic of Care. Rowman and Littlefield.

-          Johnsen, Sarah: Cloke, Paul; May, Jon 2005 ‘Day Centres for Homeless People: Spaces of Care or Fear?’.

-          Nedelsky, Jennifer. 2011. Law’s Relations: a Relational Theory of Self, Autonomy and Law. OUP

-          Neuberger, Julia. 2013. More Care, Less Pathway: A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway.

 -          Ruddick, Sara. 2009. ‘On Maternal Thinking’ 37 (3&4) Women’s Studies Quarterly 306.

 

Spaces of Care – the banning of soup kitchens

There is an extensive literature on “spaces of care” i.e. “socio-spatial field[s] disclosed through practices of care that take place between individuals” (Conradson, 2003; 508). Such spaces can be found in a range of settings: care homes for the elderly, day centres for the homeless, hospitals.

I have been grappling for some time without making much progress (those at the ReValuing Care conference in Adelaide will recognise these concerns from my paper there) with the treatment of a particular space of care – the soup kitchen. My reason for this interest was prompted by the attempts made by Westminster City Council in 2011 to outlaw soup kitchens in an area of London around Westminster Cathedral close to Victoria station.

One of the distinguishing features of the soup kitchen is that the space of care is an outdoor public space. This means that they are often viewed negatively by both local residents and local authorities. At the Adelaide conference I asked three questions which I would still welcome any help or suggestions in answering.

The first question relates to the nature of care offered by a soup kitchen. In an era where charitable and not for profit organisations are increasingly incorporated into the delivery of state care there is a view that “support agencies are increasingly accepting of the use of enforcement in some circumstances, in a desperate attempt to improve the quality of life of their clients and reduce any negative impact their activities might have on other people if/when all other approaches have failed” (Johnsen and Fitzpatrick, 2010; 1717).

By contrast providers of soup kitchens tend to fall outside the corporatist contracting mode of delivery of services. They are often provided by faith groups “attempting to articulate a theo-ethical sense of agape and caritas, a genuine openness to and an outpouring of unconditional love towards the other” (Cloke et al 2010; 99). In this “[s]oup runs tend to be noninterventionist, accepting of difference, and aim to bestow upon individuals the dignity to just ‘be’ without demanding anything in return” (Johnsen et al 2005; 329). This puts them very much at odds with government policy.

So my first question is whether we should distinguish between these two forms of care? What, if anything, is special about care which is delivered by non-professionals who are not demanding change from the recipient?

However, even if we see a positive in this rejection of a coercive form of care, can the soup kitchen do more than offer a compassionate but “ultimately degrading construal of the homeless as helpless victims” (Feldman, 2004; 92). Given its delivery of food in an outdoor setting does the soup kitchen do no more than simply help keep the homeless alive or does the “outpouring of unconditional love” referred to above provide something worthwhile in and of itself?

Finally, my last question relates to the long history of the soup kitchen which have been with us since the middle ages. Westminster’s attempts to outlaw soup kitchens were ultimately put on hold. But in an age of ever increasing control of public space why does the soup kitchen prove so resilient?

Professor Caroline Hunter, York Law School, University of York

caroline.hunter@york.ac.uk

References

Cloke P, May J. and Johnsen S. (2010) Swept up lives: Re-envisioning the homeless city Chichester: Wiley­Blackwell

Conradson D. (2004) Spaces of care in the city: the place of a community drop-in centre, Social & Cultural Geography, 4:4, 507-525

Feldman L.C. (2004) Citizens without shelter: homelessness, democracy and political exclusion Ithica: Cornell University Press

Johnsen S., Cloke P. and May J. (2005) “Transitory spaces of care: serving homeless people on the street” Health & Place 11, 323-336

Johnsen S. and Fitzpatrick S. (2010) “Revanchist Sanitisation or Coercive Care? The Use of Enforcement to Combat Begging, Street Drinking and Rough Sleeping in England” Urban Studies 47(8), 1703-1723

Care needs, gay men aged 60 and over

One of my research projects is to examine how a group of 25 gay men aged 60 and over have experienced or expect to experience old age. Interviewed as part of research I did for a book that Palgrave Macmillan published in 2013 (Gay Men’s Relationships Across the Life Course) the men were recruited in Auckland, London, Manchester, Melbourne, and New York. Six of them were in their 80s, nine were in their 70s and ten were in their 60s. This project builds on work that Brian Heaphy (2009), Ann Cronin and Andrew King (2012) among others, have already done in the area of queer ageing needs. It will also expand on my own findings from an all-Australian sample of gay men (n=80) that I used in The Changing World of Gay Men (Palgrave Macmillan, 2008) where I argued that I found little or no evidence to suggest that Australian gay men aged 60 and over were lonely in old age and that most seemed relatively optimistic about the prospect of growing old. What I did not examine, however, in The Changing World was the extent of their fears or concerns about life in care, which is the focus of the research I write about today.

Preliminary analysis of data from my international sample of 25 men suggests that they chiefly used two narratives when explaining what worried them about their care needs in old age. The first narrative related to that set of general fears and concerns that occupy the waking hours of many members of the general population as they age, namely fears about losing mobility or independence, having to live alone after the death of a partner, loss of sexual potency or interest, having to move into a nursing home, or the risk of dementia.

The second narrative the men drew on when explaining what worried them about old age were fears about heterosexism or homophobia. At the top of their list of worries was the heteronormativity they expected would exist in nursing homes or the homophobia of staff or other residents, either of which could have the effect of forcing some of the men back into the closet. One of the interviewees, a Sydney man aged 72 said the following about aged-care accommodation: ‘Nursing homes in Australia are often run by church organisations. Some church organisations, though not all, are not particularly welcoming to gay residents. They are not particularly understanding of the diversity of human relationships and of their needs’. A similar, related fear that men already living independently at home expressed was having to deal with care workers who were homophobic or uncooperative.

Cronin, Ann and Andrew King (2012) ‘Only Connect? Older lesbian, gay and Bisexual (LGB) social capital’ in Ageing and Society Available on CJO 2012  doi:10.1017/S0144686X12000955

Heaphy, Brian (2009) ‘The Storied, Complex Lives of Older GLBT Adults: Choice and its Limits in Older Lesbian and Gay Narratives of Relational Life’ in Journal of GLBT Family Studies, 5, 119–138.

Faith, religion, spirituality and care

Regrettably, I am still a reader of the Daily Mail online. Whilst often infuriating, it does occasionally have its good points. Recently, an article on a new book about ‘mind over body’ – ‘The cancer patient cured by a broken radiotherapy machine and the paralysed man who walked again after visiting Lourdes: New book shows incredible influence of the mind over the body’ reminded me of Louise Hay’s excellent ‘You Can Heal Your Life.’ Hay considers the psychological/emotional/spiritual meanings and connections of physical illness, and offers those dimensions as spaces to support healing. All of this, in turn, got me thinking about faith, religion and spirituality as sites of care practices, sources and resources of care, and, then, their relationship(s) with care ethics. I realised that we have not as yet tapped this seam in our critique of care, and so wanted to raise this as a topic, perhaps for further discussion/contributions. Here is a brief bibliography to help get us started:

Care to comment/ discuss?