The Nathaniel Centre

Dementia, identity and spirituality

Chris Perkins

Because people living with dementia forget details of their past, lose the skills they developed during a lifetime and behave in an uncharacteristic manner, it becomes easy for others to regard them as somehow not themselves – 'not the woman I married' or 'an empty shell of himself'. While we all change over time to some degree, this more drastic and rapid change can be heart-breaking. Often, through pain or fear, we would prefer to distance ourselves and regard the person with dementia as something different from us, a sort of 'non-person'.

Some philosophers have questioned whether someone who has lost language, the ability to reason and their memory of a continuing personal identity qualifies fully as a human being. This argument about 'personhood' in dementia was at its height in the early part of this century. It is now generally accepted, at least amongst those involved with people with dementia, that they are obviously 'people', but vulnerable to being treated as less than unless there is a conscious effort made to maintain their full human status.

Western tradition has privileged reason, reflection and individualism as important markers of identity. Post (1995) writes about how our Western 'hypercognitivist' society overly-values intellect and fails to adequately recognise the vital nature of other aspects of being human. He argues for a more holistic understanding of what it means to be a person, one linked to being sentient, emotional, relational and autobiographical as well as cognitive (Post 2006).

People with dementia do retain a sense of themselves. This, for example, is seen when people still refer to themselves as 'I' or object to attempts to make them do something they don't want to do. That is, they are sentient and retain a sense of agency until the most advanced stages of the condition. People with dementia maintain typical social human relations and emotions seen, for example, when they become distressed about another's pain, look for people to whom they have been closely attached, show frustration during the struggle to communicate or anxiety about how to behave in a situation that is strange to them.

Not all societies or all people in Western society hold the 'hypercognitist', individualistic view. We are more than our own, isolated, brains. In traditional Maori society, to ask about some individual's memory was a mistake; memory was contained in the community and the place and was not the possession of the individual - "memory resides with the tribe" (Shamy, 1997). Loss of memory did not necessarily mean loss of mana or standing. Every person had their place (turangawaewae) in their whakapapa and on the land; there was no way that forgetfulness could change that. The elder was accepted regardless of his or her cognitive state.

This world view reminds us that humans are social creatures and our place in society is not just related to our personal efforts; we are part of a greater whole. Our community very much defines and identifies us, whether through our job, our family, our church, our interests - bowls or Country and Western - or a community of particular people, deaf or lesbian, for example. Even people who would prefer to shun society must make contact from time to time; their aloofness and wish to avoid human contact is part of their personal identity. We are who we are because of who we associate with and how we interact with them, our shared history and relationships. This is not something that disappears with the onset of memory problems and it is to these sources of identity we should turn to help the person with cognitive impairment retain their human connection and status. "Our task, as moral agents" writes Post (2006), "is to remind persons with dementia of their continuing self-identity. We must serve as prostheses, filling in the gaps and expecting that every now and again, the cues we provide will connect with the person..." (p.229).

Dementia is a condition that lasts years or decades. Initially a person's identity is not an issue, but gradually it may become harder to connect meaningfully with them. Speech becomes fragmented, then reduced to a few words, then completely lost. As it gets harder to communicate, the onus to make and keep in contact lies more and more with the person without dementia. Imaginative efforts to understand the person with dementia are required. These involve learning about the person's former personality and habits, close observation of body language, a willingness to make informed guesses and a lot of trial and error.

For example, a woman living in a rest home refused to leave her room for breakfast or eat it there, despite various attempts and encouragement from others. From their investigations, staff understood she was a devout Catholic who liked to say the Rosary at the beginning of each day. However, she would not say the Rosary unless her room was in an orderly state, suitable for a respectful encounter with God. Once they knew this, the staff came in early to make her bed and tidy up. She could then say her prayers and come out to enjoy her breakfast.

The person with dementia remains aware of and sensitive to others' emotional state for a long time and may reflect this with anxiety, withdrawal or aggression. In 1997, Tom Kitwood wrote about the 'malignant social psychology' of residential homes for people with dementia. Negative interactions with staff erode the resident's 'personhood'. He described sixteen examples of malignant social psychology, such as outpacing (going too fast for the person with dementia to keep up), invalidation (the person's feelings are denied or dismissed as irrelevant) and infantilisation (treating the person patronisingly, as if they were a young child). When these interactions occur, the person is diminished. Alternatively, when they are treated well, their personhood is enhanced. This is demonstrated by the person with dementia being assertive, initiating social contact, affection, relaxation, creativity and other positive responses indicating well-being. These ideas about 'person-centred care' have received mainstream attention and are beginning to be formally actualised via various programmes such as Dementia Care Mapping, 'The Spark of Life' (Jane Verity) or 'The Eden Alternative'.

Our role as a society, as families, friends and carers is to support people living with dementia, to allow them to be themselves as much as possible. This involves recognising that each person is uniquely themselves, and this means moving beyond the current bias that those who cannot remember and reason are somehow less than real people. They are part of a community that can support or erode that sense of self.

A key part of supporting a person's sense of self involves respect for the spiritual dimension of their personality. Spirituality can be described as "that which is essential to our humanity, embraces the desire for meaning and purpose and has personal, social and transcendent dimensions." (Allen & Coleman, 2006 pp. 205-206) Despite the losses in function and capacity, spirituality does not change as cognition declines. As Goldsmith (2004) writes: "Spirituality is no different in dementia: only the brain changes. The intrinsic value of the person is never lost."

Killick (2004) suggests that spiritual powers may even grow as cognitive capacity wanes. As the thoughts and words that clutter our minds reduce, a person can become more aware of deeper aspects of themselves. This can sometimes be seen in a person's creative abilities e.g. as dementia progresses some painters change in style to express themselves more freely. A Japanese idea is that the person with dementia is privileged because forgetfulness allows them to live only in the present moment - a goal towards which Zen practitioners strive. (This seems a rather romantic idea; many people with dementia become anxious when they do not know what is going on.)

Christine Bryden (2005) describing her own experience of dementia indicates that she has become more aware of her spirituality:

At the centre of our being lies the true self, what identifies us to be truly human, truly unique, and truly the person we were born to be. This is our spiritual heart, the centre from which we draw meaning in this rush from birth to death, whenever we pause long enough to look beyond our cognition, through our clouded emotions into what lies within.

However, as dementia progresses people may need more assistance from others to express their spirituality and meet their spiritual needs. This assistance is given by family, friends and caregivers, formal and informal. In New Zealand the Whare Tapa Wha (Durie, 1998) or 'bio-psycho-social-spiritual' model acknowledges the importance of spirituality for health. Many health and aged care policy documents such as the Health of Older People Strategy (2002), Palliative Care Strategy (2001) and Aged Residential Care contracts, refer to spirituality, but it is uncertain the extent to which such holistic care is actually implemented on the ground.

To conclude: Holistic models should enable carers to attend to the whole person – including the often neglected spiritual aspects – and not just focus on the disease, to the benefit of all people, with or without dementia.

The last words belong to a woman with dementia:

Sometimes I picture myself like a candle.

I used to be a candle about eight feet tall-burning bright.

Now every day I lose a little bit of me.

Someday the candle will be very small.

But the flame will be just as bright.

Burning Bright (Noon, 2003 in Killick 2004)

Dr Chris Perkins (MB ChB (Otago) FRANZCP, Diploma of Professional Ethics (Auckland) is Director of the Selwyn Centre for Ageing and Spirituality. She is a psychiatrist, with particular expertise in mental health issues affecting older people and in intellectual disability psychiatry.

References

Allen & Coleman ( 2006) Spiritual perspectives on the person with dementia: identity and personhood in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234

Bryden, C. (2005) Dancing with Dementia: my story of living positively with dementia London, Jessica Kingsley Publishers

Dementia Care Mapping http://www.brad.ac.uk/health/dementia/dcm/ Accesssed 02/04/2012

Eden Alternative http://www.edenalt.org/about-the-eden-alternative Accessed 02/04/2012

Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry 4M publications, Southwell

Killock, J. (2004) Dementia, identity and spirituality in Spirituality of Later Life, on Humour and Despair Ed. MacKinlay E. Binghampton NY Harworth Pastoral Press, p 59-74

Kitwood, T. (1997) Dementia re-considered: the person comes first. Buckinghamshire Open University Press,

Ministry of Social Development (2001) Positive Ageing Strategy Accessed 02/04/2012

Ministry of Health (2002) Health of Older People Strategy Accessed 02/04/2012

Ministry of Health (2001) Palliative Care Strategy Accessed 02/04/2012

Post, S. (1995) The Moral Challenge of Alzheimer Disease, Baltimore, John Hopkins University Press.

Post, S.(2006) Respectare: moral respect for the lives of the deeply forgetful in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234

Saks, J. (2002) in Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry Southwell 4M Publications,

Verity, J. The Spark of Life Programme http://www.dementiacareaustralia.com/index.php/biography.html Accessed 02/04/2012

Achieving a ‘good death’: supporting health professionals to meet this challenge

Bridget Marshall

Death is a certainty and more often than not we try to avoid thinking about it. However if we do think of our own death, most of us hope it will be pain free, without suffering, relatively quick, and not create an undue burden on those we love . The process of dying might also allow enough time to complete certain tasks or to be with certain people. Most of us would like to have achieved the things in life that are important to us and go towards our death with a sense of peace.

There is a growing body of research that attempts to understand the social aspects of death and dying that makes it clear that what people want and need at the end of life can vary considerably. Many of these studies have focused on the concept of a 'good death', which involves taking into account the differing priorities based on the dying person's beliefs, cultural background and individual social circumstances and the circumstances of their disease. Studies asking patients and their families what constitutes a 'good death' reported factors that centered around aspects of self-control and respect as an individual, completion of a life well lived, not being a burden on others, dying in the preferred place, and spiritual and physical comfort (Pinson et al, 2011; Miyashita et al, 2008,) In contrast, studies that centered on health practitioner perspectives found that a 'good death' was more focused on the importance of symptom control, the person being aware they were dying, and family being aware and prepared for the person's impending death (Griggs, 2010).

Therefore, while caring for and supporting those who are dying and their family/whānau can be an enormously rewarding aspect of work for health care professionals, it can also be complex and at times very challenging.

Health professionals, especially those working and caring for the dying, constantly strive to meet the needs and wishes of the patient and their family/whānau. They do this within the constraints of knowledge and evidence (scientific and sociological) and the resources available to them. There is willingness and urgency for us as health professionals to 'get it right' and support the kind of death that could be considered to be a 'good death' for the person we are caring for.

There have been many advances in palliative medicine since the first modern Hospice service was established in the United Kingdom in the 1960s. This includes better understanding of symptom management, use of analgesics in complex pain syndromes, new medications and delivery methods, and acknowledgement of individual choices and family's needs and expectations. Recognition of the need to care for the whole person is seen as one of the fundamental principles of palliative and end of life care. This approach includes the need to provide care that meets not only the physical needs of the person but also their spiritual, cultural, social and emotional needs.

Hospices are recognised as providing the 'gold standard' of care for the dying and their family/whānau. There are 32 Hospices listed on the Hospice NZ website, and these facilities provide a mix of in-patient and community care for the dying person within the region they serve. However only 6% of those who die in New Zealand die in a Hospice, with the majority of New Zealanders dying in hospital (34%), or for those over 65 dying in aged residential care (31%) (PCC, 2011).Therefore, there is an imperative to transfer that best standard of care from Hospices to these other places of care.

One of the more recent tools aimed at supporting the transfer of best practice model of palliative care to non-Hospice settings has been end of life care pathways. Care pathways have been used in health since the 1980s as a way of aiding complex decision making and organising care processes for a specific group of patients over a specified period of time. The end of life pathway available in New Zealand, and endorsed by the Ministry of Health, is the Liverpool Care Pathway for the dying patient (LCP).

As suggested by its name, the LCP was developed in Liverpool, England in the mid-1990s. It was a joint initiative of the Royal Liverpool and Broadgreen University Hospital National Health System Trust and the Marie Curie Palliative Care Institute in Liverpool. In the UK, the LCP is recognised as a model of best practice and is recommended by their Health Ministry in their End of Life Care Strategy (DH, 2008). The LCP is now used in 21 countries around the globe and has been translated into six languages.

Care pathways not only document the treatment that has been given but also prompt clinicians in appropriate goals of care. It is not a prescriptive tool, and as such will not determine what the health professionals prescribe and when. Each instance of the care pathway is specific to the individual patient and is designed to capture the dynamic, changing nature of the person's journey. Individual patient needs are highlighted and thus can be addressed and evaluated individually. But at the same time, by having standardised goals of care, the same level of care can be transferred to all care settings including acute hospitals, aged care facilities, people's own homes, and hospices.

The LCP is designed to be used in the last days or hours of life when all reversible causes of a patient's deteriorating condition have been assessed and managed appropriately. If a person's condition improves (e.g. a positive change in conscious level, functional ability, mobility, or the ability to perform self-care) the carers will stop using the New Zealand LCP to guide care, and reflecting the person's condition, commence an appropriate plan of care.

The recognition and diagnosis of dying is always complex, irrespective of a person's medical diagnosis or history. A multidisciplinary team decision, involving the doctor, nurse, and other health professionals is important in making this clinical judgement. Communication with the patient's family/whānau is pivotal and all decisions leading to changes in care should always be communicated to both the dying person (if possible and appropriate) and their family/whānau.

The LCP is family centred, focusing not only on the physical aspects of care, but also on communication, and the spiritual and cultural care of the person and their family/whānau. The New Zealand LCP document has been altered to include specific goals that New Zealand deem essential when caring for the dying, including the addition of goals relating to cultural care. Currently, there is a Health Research Council of New Zealand funded research project underway entitled 'Culturally Appropriate End of Life Care for Māori', with the New Zealand LCP document being used as a framework for the research.

The New Zealand LCP is now being used in over 300 sites across hospices, hospitals, in people's homes and aged care settings within New Zealand. The LCP supports but does not replace clinical judgement and is not a treatment in itself. The use of the New Zealand LCP must be underpinned by a robust on-going education programme and forms part of the continuous quality improvement programme of an organisation. This ensures that all health professionals who are caring for the dying are constantly learning and reflecting on best practice end of life care.

The use of tools such as the LCP has been consistently demonstrated to benefit the practice of health care professions in caring for those who are dying. In research conducted in New Zealand acute care and aged care settings health professionals were asked whether they felt that their care had changed since using the LCP. They responded that their communication both with families and other health professionals had improved, and in addition, there were also marked improvements in teamwork, documentation, and clinical practice. It was felt that the health professionals using the LCP were better able to address patient symptoms and their confidence in how to offer high quality palliative care had increased, both in regard to the patient, and to the patient's family/whānau. (Clark et al, 2011, Clark et al, 2012)

Usually when a person dies they are not in isolation. In addition to family members, many health professionals are often involved in the process, such as medical staff, nurses, care assistants, chaplains, therapists, pharmacists, social workers and carers. The LCP document provides the scaffold for all of these disciplines to meet and coordinate around the care of the dying person.

Whatever people perceive to be a 'good death', health professionals charged with caring for those nearing the end of their life and their companions have a responsibility to support them. For the person dying a 'good death' will revolve around being pain free, treated with respect and being at peace. For the family/whānau, a good death will involve comfort of the dying person, and having access to that person in the last hours. For health professionals, a 'good death' will involve a balance of the needs of the dying person with access to medication and other resources, and the needs (or limitations) of the organisation or location where the dying person is being cared for. Health professionals need to appropriately utilise the resources available to them: be it palliative care expertise, medications, and clinical pathways. Clinical tools such as the LCP support health professionals facing the challenges of helping people to achieve a 'good death' regardless of what the person is dying from, or where they are dying.

Bridget Marshall RN MN is the Lead for the National LCP Office for NZ.

The Ministry of Health funded National LCP Office was established in 2008 to promote and coordinate the sustainable implementation of the LCP across all District Health Boards in New Zealand.

References

Clark, J, Sheward, K., Marshall, B., Allan, S. (2011) Staff perceptions of end-of-life care following implementation of the Liverpool Care Pathway for the dying patient in acute care setting: a New Zealand perspective. Journal of Palliative Medicine. 15(4); 468-473.

Clarke, J., Marshall, B., Sheward, K., Allan, S. (2012) Staff perceptions of the impact of the Liverpool Care Pathway in aged residential care in New Zealand. International Journal of Palliative Nursing. 18(4), 171-178.

Department of Health (2008) End of Life Care Strategy available on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

Griggs, C. (2010) Community nurses' perceptions of a good death: a qualitative exploratory study. International Journal of Palliative Nursing. 16(3), 139-148)

Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., Uchitomi, Y. (2208) Good death inventory: a measure fro evaluating good death from the bereaved family member's perspective. Journal of Pain & Symptom Management, 35(5): 486-98.

Palliative Care Council (2011) National Health Needs Assessment for Palliative Care, Phase 1 Report: Assessment of Palliative Care Need Available from: http://www.palliativecarecouncil.govt.nz/pub/national-health-needs-assessment-palliative-care

Pinzon, E., Carlos, L., Matthias, C., Isabel, K., Stephan, L., Sabine, F., Martin, W.(2011) Preference for place of death in Germany. Journal of Palliative Medicine. 14(10); 1097-103.

Euthanasia: A Pacific Island (Tokelauan/Samoan/Cook Island) perspective

Penehe Patelehio

The man who had Alzheimer's disease and was dying had struggled for so long. He had endured memory loss for many years. All the while his daughter had taken very good care of him. One day, towards the end of his life she asked him, "Do you know who I am?" and he replied, "No, I don't know who you are, but I love you."

For us, life is valued above all things. Traditionally, for Polynesian cultures, whatever the medical situation of a person, that person should always be cared for and looked after. Our Polynesian culture and our Christian values teach us that life is a gift given by God. Life is not something to be ended by an individual's choice, as with assisted suicide or euthanasia. The opportunity to care for elderly parents is also seen as a gift and a privilege to that family.

When someone is ill or dying, the idea of assisted-suicide or euthanasia is entirely foreign to us. There is no word in our language for this concept and consequently it does not enter into our thinking. The opportunity to care for and look after someone who is ill or dying/suffering is seen as a blessing even though it may present significant financial and other challenges. At such times the extended family and community networks come to the fore – it is common for immediate and extended family and community members to visit, provide food, and massage and converse with the person who is ill. No-one would ever be left to die alone.

Supporting the family and the person concerned through ongoing daily practical and emotional support enables the sick person to find ways to feel better and achieve the best possible quality of life during the latter stages of their life journey.

While we strive to do all that we can to alleviate the suffering, the most important thing is for a person to experience the best care they can in order to live the final part of their life with dignity and love. This calls for us all to act with dignity and love and remain present to the person who is dying.

Rev Fr Penehe Patelehio is the Parish Priest of Holy Family Parish, Porirua, Wellington.

Editorial Euthanasia: A case of ‘selective listening’?

Maryan Street, author of a bill which seeks to legalise euthanasia and physician-assisted suicide in New Zealand, has repeatedly made the point that "the social conversation has moved" since 2003 when the last Bill was put forward. I agree with her.

But, whereas Street means to infer (without real evidence) that there has been a shift in opinion towards favouring change, I mean something quite different. I mean that in the last 10 years the social context has changed and is now characterised by a range of different concerns. These concerns, articulated in various social conversations, lead me to a very different conclusion about the desirability of euthanasia.

Firstly, there has arisen a new conversation about the dangers of growing old in New Zealand. Elder abuse is now a significant issue confirmed, sadly, by recent reports of family members in Christchurch standing over elderly relatives and intimidating them to hand over earthquake compensation pay-outs. The reported case of the woman who died a horrific death from scabies, allegedly attributed to carer neglect, is yet another example. Age Concern (NZ) notes that 1 in 40 of all elderly people experience some form of abuse or neglect, equivalent to two people being abused every hour of the day. Given that the reported cases represent approximately 16% of the total abuse cases, that would amount to a total of 6,250 cases per year or 17 per day. Shamefully, 80% of abuse is committed by family members even when that person is in residential care.

Then there is the conversation that has followed from the reporting of the (Auckland) results of the New Zealand Longitudinal Study of Ageing. Over half of those questioned were lonely and nine per cent described themselves as "severely" or "very severely" lonely. Depression is also a significant factor for more than 20%, and 40% report experiencing everyday discrimination, mostly because of age. The study further notes that elderly people are facing a future of less housing and income security. These figures are of huge concern when considering research which shows that persistent requests for euthanasia or assisted-suicide are related to loss of control, social isolation or being a burden rather than a desire to avoid a painful death.

There has also been a lot of talk about the rising number of suicides amongst elderly New Zealanders. Dave Armstrong (The Dominion Post, 24 September) has challenged us to get the issue of suicide into the open and to recognise the "complex factors" which contribute to the problem including "relationship breakdowns, depression and old people feeling they are a burden." Making suicide easier to access is not what Armstrong and others have in mind; it is hardly a caring, let alone ethical, solution to this problem and it will send a mixed message to our young people at a time when youth suicide remains a growing problem in areas such as Northland. To those who say this is not what Street's Bill is aiming to do, it should be noted that her proposed bill is not just for people who are dying and, moreover, it includes persons, young and old, with irrecoverable mental illnesses.

These conversations point to powerful, deep cultural and societal forces at work. Personal choice is not something we exercise in splendid isolation; our choices are always constrained by the pressures and influences around us and they impact on others. What a person believes he or she should do is not necessarily the same as what an individual really wants. No amount of safeguards can protect people from being caught up in these powerful currents.

While a law change may well benefit a very small number of strong-minded individuals, in reality very few people are like that. As Baroness Ilora Finlay notes, in the face of illness and increasing dependency most are "ambivalent, oscillating between hopelessness and hope, worrying about being a personal or financial burden on those they love or that their own care costs will erode their descendants' inheritance." The end result of what one commentator has called the "continual apology for your own existence" would be significant numbers of people being steered towards euthanasia. This is neither free choice nor what Street has called "vigorous self-determination".

We should be very afraid of the consequences that would follow the legalisation of euthanasia, in particular the way it would undermine many people's will to live. While supporters of Street's Bill argue that a change in the law is about 'choice', the real fear is that we will realise all too late that its effect will be to steer people down a one-way-dead-end street.

Maryan Street and I have obviously been listening to very different conversations. If as a society we are going to properly discuss euthanasia, it must occur as part of a fully informed social conversation rather than one based on selective listening.

If our politicians decided that euthanasia was too dangerous in 1995 and 2003, then it is even more so now given the way "the social conversation has moved."

John Kleinsman is director of The Nathaniel Centre

Autonomy and dementia: what has been left unthought

Lynne Bowyer

Introduction

The concept of autonomy is widely accepted as a value in healthcare. The dominant conception of autonomy in contemporary society stems from an understanding that equates it with independence or self-sufficiency. A person is said to be autonomous if she has the capacity to engage in critical reflection in order to choose and pursue her own self-interested preferences, unimpeded by the choices and actions of others. These criteria for autonomy are further underpinned by the metaphysical claim that self-conscious reflection is both necessary and sufficient for personhood.

To the contrary, I argue that neither personhood nor autonomy is fully captured by this perspective and, furthermore, that it ultimately fails to attend to the way we do things in the world. Attention to our concrete lived existence shows that persons are more than self-conscious, reflective beings. Rather, we are finite, embodied, discursive beings, fundamentally interdependent and embedded in socio-cultural networks of shared meaningful practices through which our personhood is constituted and expressed.¹ Through supported and guided learning we appropriate the shared socio-cultural practices in which we are situated, acquiring the skills and dispositions to become autonomous members of community. That is, we become individuals who are able to enact and sustain meaningful and coherent patterns of activity that rightfully position us in our shared world.

Re-conceptualizing autonomy in light of how we do things in the world has important implications for many of our social practices, including the way we understand and care for people with dementia.

Learning to make sense of our self and our world

Unlike other creatures, the human way of being is not to live a life that is completely guided by instinct. There is an insufficient fit between human physiology and the environment that we have modified over the millennia that we have inhabited it, and we lack a structure of instinctual moves that could present ready-made answers to the question of human existence and flourishing. Instead, to be a human being is to be a particular kind of being: one who has to learn non-instinctive skills of interpreting and making sense of oneself and the world through flexible and creative thinking, so that we come to act in the world in accordance with shared structures of thought. These structures of thought are developed over time in community and they provide a cognitive or conceptual framework through which we come to understand the world and our place within it.

The structures of thought that have increasingly come to dominate western thinking embed a view of the world that seeks to explain things in abstract, theoretical discourse. It is a view sometimes referred to as 'objectivism' because it assumes that things in the world, including ourselves and our experiences, are objects that have inherent properties, with some sort of law-like relations holding between them. It also assumes that our knowledge of these things is acquired through our detached reflection on them. This theoretical orientation maintains that these 'objects' can be reduced to, and are best defined by, certain necessary and sufficient conditions. Therefore, to be a thing of a certain sort, say a person, one must satisfy the conditions that are necessary for personhood, or self-hood. From this perspective, it is argued that self-conscious reflection is not only necessary for personhood, but is also sufficient for the application of the concept. Based on this reductive account of personhood, an individual is said to be autonomous when she can make self-interested choices based upon her capacity for rational reflection, understood as a calculating, prudential activity that is unimpeded by the choices and actions of others.

Such an account can only be sustained when a number of important aspects of our human condition are overlooked. In order to better attend to our human context Martin Heidegger argues that what is needed is an approach which elucidates, articulates and remains attentive and responsive to our concrete, lived situation.² Attention to our life-world reveals that not only are we self-interpreting discursive creatures, as noted above, but also that we are finite and embodied beings, historically, culturally and socially embedded in a shared world, a place of significance in which things matter to us.

Our understanding of the world as a place of significance develops through our embodied interactions with things, and it is guided and supported by others who show us what matters and how things are done in our particular community. Over time we develop a repertoire of habituated practices which are embodied, pre-reflective and dispositionally informed. Guided and supported by others we grow into a particular relationship and attitude to the world, so that we acquire habits of conduct at the same time that we are learning about the world. This dispositional understanding, informed by the signification of culture, history and discursive practices, is our ethos. It orients us in the world and shapes the values that come to dominate our life. It represents the significant responses of others and the ways that they have taught us to deal with the threats and opportunities that the world presents. In other words, our human situation is thoroughly relational and dialogical and we are dependent upon one another for the possibility of being understood.
For example, in learning something about the world where cups play a role, we develop our understanding of a cup not by standing back and reflecting on it and establishing its properties, but through our embodied interaction with it, by picking it up and using it in the way that we have been taught. We understand something about the cup, ourselves and the world when we engage appropriately in practices where cups are important. This embodied understanding is pre-reflective and embedded in a context of significance. Thus, we come to understand a cup not through its composition, but through interpreting its role in a caring social practice vis a vis water; its ability to hold something, the need to quench a thirst, the location of a tap, and the integrated bodily movements required to bring this all about. Our ability to conduct ourselves appropriately whilst enacting a task is a measure of how well we understand a particular socio-cultural context; it does not require us to rationally reflect on or describe the decontextualized details of the encounter.

Human understanding is not, therefore, primarily about working out what to do through a process of rationally organised, reflective information processing. Rather, it involves interpreting and integrating situated, embodied, complex communicative activity and what that means to our self and others as emerging, evolving persons. It is through our embodied, pre-reflective involvement that we learn to recognise joy in another's smile, her laughter and her movements; we feel the sorrow and pain in another's posture and her tears; we grasp the tone of another's thoughts through her expression and the sounds of her words; we understand an entreaty through her outstretched arms, and we respond appropriately because we have learnt to interpret and evaluate the meaning of these human situations.

Nested within a complex interdependent web of meaningful involvement, our personhood continually unfolds and evolves, constituted by the interactions within which we are situated and sustained, interactions which mirror to us something about who we are, what we are capable of and what is important to us. Who we become is a matter of who we interact with and, if we are fortunate, those interactions provide us with a sense of value and self-worth that positively defines our place in the world. Our personhood therefore, does not belong to self-reflection but to social recognition. And as finite creatures, who are limited and vulnerable, we need the right care and support from others in order to develop and sustain the social standing and recognition that is necessary for becoming a fitting member of community.

Becoming autonomous

Over an extended period of time, through supported guidance, we become enculturated into an interdependent matrix of understandings that are normatively grounded. For example, a parent teaches a child that if they want to be a 'friend' and as a corollary have 'friends', she has to behave in certain ways and not others. The concept 'friend' is a shared concept which is rule-governed, constituted by norms relating to the truth of what it is to be a 'friend' and by which we can evaluate whether a particular act is one of 'friendship' or not. The notion of 'being a friend' then enters into what one values. Having friends elicits feelings of connection and significance in the lives of others and one feels bereft when lacking the intimacy of friendship. These normative interactions inform the way that we live and come to constitute our significant interests. Through our ongoing interactions in the world we reveal what is important to us, so that others who know us come to recognise the values that we live by.

Nurtured and sustained by others, we come to experience ourselves as someone of value as we learn to participate in a number of different roles in a range of socio-cultural contexts. We become accomplished in certain discursive practices before others, and as continually evolving creatures we learn new practices as we enter into new situations. Appropriating such well-tested social practices provides the basis of a meaningful life and locates us in a particular tradition. In learning to skilfully apply our growing repertoire of dispositionally informed, dynamic patterns of normative interaction, we come to deal with and adapt ourselves appropriately to life's contingencies in a range of socio-cultural contexts. That is, we become autonomous individuals, able to enact and sustain fitting interrelational responses to the situations we find ourselves in.

The attenuated conception of autonomy that has come to dominate western thinking radically distorts our human context. Autonomy is not about acting according to one's own desires and preferences, directed by rational, reflective endorsement. Rather, the dynamic complexity of our existential situation means that autonomy emerges as an embodied, pre-reflective, normatively informed, temporally extended, context specific, interdependent activity which can be enhanced or diminished by others, depending upon the form that our interactions take. It is not an isolated achievement and it cannot be fixed at some time.

Implications of our interdependent existence: personhood, autonomy and dementia

Any structure of thought extends beyond mere conceptualization; it not only exerts influence on those to whom the concept applies, but also has repercussions for the social arrangements which structure our families, educational institutions, health care practices and legal systems. Thus, revealing the underlying assumptions that a concept such as autonomy is based on, and giving voice to the things that have been concealed, is not just an academic exercise, but an activity in which ways of living are at stake. Reductive theories of personhood and autonomy give us an impoverished view of humanity and a distorted view of autonomy. By focusing only on specific limited intellectual functions and overlooking the fact that human understanding is fundamentally pre-reflective, embodied and dispositionally informed, we risk treating those who do not meet the limited objectivist criteria as non-persons - somehow less than human. Those diagnosed with dementia are at risk of being treated in this way.

The typical approach to diagnosing dementia is through the administration of standardised psychometric tests, which measure defects in an individual's abilities in a way that can be easily quantified. These tests involve a series of decontextualized questions which isolate particular aspects of cognition (for example, attention, perception, memory, and language) against which an individual's performance is scored, thereby enabling 'generalisations' about a person's abilities to be made. Although these reductive tools can identify some of the problems that individuals experience in their everyday life, they allow only a shallow assessment which focuses on a person's deficits, and from which many unwarranted inferences are made. Focusing on static, isolated, moments of decontextualized thought and action, fails to capture the dynamic, embedded and embodied cognitive life of a particular individual interacting in their world. Psychologist Steven Sabat has noted that standardized tests fail to give us any insight into how an individual would respond to such things as hearing a joke, being paid a compliment, recognizing another's need for help, being ignored or embarrassed.3 As already argued, our ability to respond appropriately to such human situations requires interpreting situated, embodied, complex communicative activity and what that activity means, which is a measure of our autonomy.

When we attend closely to the world of those diagnosed with dementia, we find individuals engaging in the socio-cultural dynamics of everyday life in various ways, something which highlights their ability to evaluate, interpret and respond to the meaning of the situations they are involved in. This continues to happen long after the ability to reflect on one's situation is lost. When we recognise that most of our intentional actions are pre-reflective, learned through years of embodied habituation, it follows that the loss of the ability to reflect does not detract from our ability to act autonomously. As situated, embodied beings, our actions have purpose and meaning because they are embedded in a shared world, so that responding appropriately to a situation can take many forms. Our intentional actions can become manifest through our characteristic gestures, our facial expressions, our manners, our tears and our smile, all of which show an evaluative, interpretive response to a situation and an ability to engage with the world in a way that directs the response of attentive others.

So, what does this mean for people diagnosed with dementia? In order to act autonomously and be recognised as such requires that those diagnosed with dementia are sustained by others in meaningful interactive practices and that they are positioned as persons trying to communicate something intelligible, the same things that all of us require. To turn away from this task is to fail to acknowledge that autonomy is interdependent and context-specific and that it can be enhanced or diminished by others.

Even in the later stages of dementia, individuals can convey their coherent, intact intentions but may be unable to execute them. But even then this is not unlike the situation for the rest of us. When my car breaks down, I may be able to convey my intention to have it fixed, as it matters to me, but I need the assistance of others to enable this to happen, such as someone to tow my car into the garage, someone to fix it, someone to transport me hither and thither whilst it is in the workshop. I may also need others to anticipate and suggest some things that I have not thought of.

As our self-worth and standing amongst people are constituted by our interactions with others, how others think and respond to someone diagnosed with dementia influences how she then comes to see herself. This means that it "is in their everyday interactions, beyond the neuro-pathological processes in the brain, that people with dementia can be supported in, or experience assaults on their personhood"⁴ and as I have argued, also on their autonomy.

When we acknowledge that our human existence is one of complex inter-dependence, that the flow of our interactions in the world are pre-reflective embodied responses to the contexts we find ourselves in, that we are dispositional creatures moved by the meanings that things hold for us, and that we are all vulnerable beings who require others to give us appropriate opportunities and support, then we see that the needs and well-being of those with dementia are not dissimilar to our own. It is an existential situation that requires us to position and sustain those diagnosed with dementia as autonomous persons.

Lynne Bowyer is a PhD candidate in the Bioethics Centre at the University of Otago. She has a Master of Arts in Philosophy and a Bachelor of Education. Lynne has worked in primary, secondary and tertiary education.

1 Martin Heidegger, Being and Time, trans. John Macquarrie & Edward Robinson (Oxford: Basil Blackwell, 1967),67-77, 333-382, 95-148, 149-168.

2 Heidegger, Being and Time, 24-28. Heidegger's approach can be described as an ontological, hermeneutic-phenomenological approach to our existential situation.

3 Steven R. Sabat, The Experience of Alzheimer’s Disease: Life through a Tangled Veil (Oxford: Blackwell Publishers Ltd., 2001), 12.

4 Ibid., p. 298.

Guest Editorial: The place of elderly persons and our responsibility for care

Samuel J Ujewe

On 16 May 2012, the BBC featured a brief documentary showing the negative impact of China’s one-child policy on the ageing population. It highlights a disturbing fact; whereas elderly people have been traditionally cared for in the family circle, China’s population policy, coupled with rapid industrialisation and urbanisation, is increasingly leaving elderly persons to care for themselves. As a consequence, the Chinese government, while providing some form of social welfare for the elderly, is now encouraging only-child parents to have more than one child in order to reinstate aspects of family involvement in care for elderly people.[1]

In New Zealand, increasing numbers of people are now being cared for in retirement villages and residential homes for the elderly. These services aim to provide a dignified place of care for seniors as they become more dependent on others and are unable or unwilling to live alone or with other family members. While there is, rightly, a significant focus on providing the appropriate level of financial and physical care for the elderly, their needs as persons also encompass the social, intellectual, emotional and spiritual spheres. One of the biggest challenges is not to lose sight of these aspects of care.

Many people continue to support their elderly parents or family members while in residential care homes. Nevertheless there is a concern that the high quality physical and health care provided is not always matched by the social and emotional support that people desire from their families. Thus, numbers of elderly people find themselves isolated from active family and social networks. The question arises as to whether the isolation some people experience is, at least in part, an accident of the social services provided for them.

What do I mean by this? A United States study on ageism notes that in primitive society, old age was frequently valued with older persons seen as providing knowledge and experience. In more recent times, as the number and percentage of older persons has grown, there has also grown a perception that the elderly are a burden to families and society. The very real concerns about the increasing costs associated with caring for the elderly in residential facilities carries with it the real risk that it will reinforce a perception of persons in care as financial liabilities. ^[2]

This has been further backed up by United Kingdom research which notes that even when societal agreement for material support of older persons is strong, ageist stereotypes abound that dictate how older persons are viewed and treated. In the study in question, persons over 70 were perceived as posing a greater threat to society by placing burdens on the economy rather than by affecting others’ access to services or way of life. In addition, respondents viewed people under 30 and over 70 as having little in common.[3] These perceptions potentially undermine the sense of moral responsibility we all have to provide care for the elderly. This responsibility is ultimately founded on the common virtue of gratitude as reciprocity that flows from our experience of family upbringing.  

It is of particular interest to note that in 1995 Singapore passed into law the Maintenance of Parents Act in order to address cases of neglect of elderly parents. This Act imposes a legal duty on adult children to care for their elderly parents when they are unable to care for themselves.[4] It should be noted that the Singaporean law reflects the traditional family values of the people where care for elderly parents is provided by their children or close relatives: “parents who brought up their children should in turn be cared for by them”, says a one-time president of Singapore.[5] Singapore’s Ministry of Health affirms that the act is meant to codify the filial obligation that all sections of the community already recognize and which a vast majority of children gladly discharge.[6] Art Lee confirms this in noting that 95% of indigent elderly in Singapore are supported by their relatives.[7] The Singaporean approach recognises the fundamental place of elderly people in the lives of others who are family, and the corresponding responsibility owed to them for care.  

Whereas countries like China and Singapore are aiming toward reviving or sustaining filial commitment in elderly care, it would seem that in New Zealand the emphasis on improvement is more often focused on increasing financial resources for services and/or better regulatory overview. For this reason it is worth reflecting on the efforts of countries like Singapore and China. While the provision of high-quality elder-care services may offset the financial and physical burdens of care experienced by families, a degree of holistic care may only be attained in conjunction with the continuous involvement of the people who are related to these elderly persons. The question arises as to how this can best be achieved in New Zealand.  

In the African culture, individual identity is never considered apart from the wider family a person is part of. There is never a point in life where a person becomes completely separated from his or her family; an emerging family is always at the same time an extension of the existing families of the spouses. It is accepted by both the older-larger and newer-smaller families that they owe each other mutual support and reciprocity plays a substantial role. According to a Nigerian proverb, the child who does not say ‘thank you’ is a witch. Witchcraft is generally associated with ingratitude, and a thank-you for Nigerians does not end in mere words; it is active, expressed in reciprocal gestures for kind acts received. Although no one compels another to reciprocate any kind gesture, it is deemed a responsibility that one should embrace. Thus, in African communities generally, the care of elderly parents remains in essence a responsibility of their children and other relatives.

There are strong parallels between African approaches to family belonging and the Maori culture. As a visitor to New Zealand, it strikes me that Maori values of care and respect for the elderly could usefully inform broader attitudes within New Zealand society. I have also become aware that New Zealand’s laws are particularly sensitive to parents’ duty to care for their children. The challenge I see is to develop a greater societal awareness of adult-children’s duty to care for their indigent elderly parents. Many contemporary societal factors work against this, including the challenges of smaller families and the reality that children often live far away from their parents. The change that is required is a deeper attitudinal one; it is, of course, not as simple as passing a law because no law can possibly effect such a change if is not accompanied by a shift in cultural attitudes.

At the same time, great thought needs to be given to the impact any new laws might have on people’s broader attitudes towards the place and value of the elderly. I have followed with interest the discussions about legalising euthanasia and it occurs to me that one of the questions not being discussed is whether such a law change will make New Zealand a more inclusive and more welcoming place for the elderly and those who are at the end of their life, or a less inclusive and less welcoming place; will this enhance filial responsibility or further undermine it?

The virtue of gratitude as reciprocity demands that the care of elderly parents not be left solely to the responsibility of care-providers. We all have a responsibility – perhaps even a moral obligation – to be actively involved in the care of our parents and grandparents. Residential care services can sustain the dignity of elderly persons only if the people who are part of their lives remain actively and continuously involved. In light of this Lee’s tripartite approach may be worth considering: the state, the voluntary sector and the family, each giving the kind of support that it is best able to provide.[8]

The provision of social services by the state must be seen as a way of enhancing families’ ability to maintain the social and emotional bonds with elderly family members but there is a need for real vigilance to ensure that it does not unwittingly contribute to their greater social and emotional isolation.   

______________________________________________________

Samuel J Ujewe (BA Hons., MHealSc – Bioethics) is from Nigeria and a visiting scholar at The Nathaniel Centre. He recently completed his Masters degree at the University of Otago Bioethics Centre and is about to begin his PhD studies at the University of Central Lancashire, United Kingdom.

From ageism to elder abuse to euthanasia?

Kilian de Lacy

An old man sits in his chair in the rest home, staring at the wall, wishing he were dead. The home has changed hands a few months ago and he is desperately unhappy. He has asked to be moved somewhere else but the proprietor, backed up by the health and government authorities, has told him he has to stay till he dies. His power of attorney is held by his sister, herself dying of cancer and unable to stand up for him. What else is there to look forward to but death?

When he first came into the rest home, he needed quite a lot of care. A diabetic, he had not been taking his medication, he was confused and required a high degree of supervision. The woman then in charge had looked after him, attended to his physical and psychological needs, and he had started to take control of his life again. But with the arrival of a new owner, things changed. He was bullied; his friends were denied access to the facility; his phone calls to his sister were monitored; his bank account was being accessed by the owner of the rest home without his permission and without any accountability for the money taken; his visits to his sister had strict conditions imposed on them. Understandably, his morale had dropped to zero, and his situation looked hopeless. He told his sister he just wanted to end it all.

This true story is a classic case of elder abuse and illustrates how lack of care and, worse, abuse, leads to a state of mind in which death appears as an obvious answer to an elderly person’s problems. For someone looking in from the outside not fully aware of the circumstances, the old man’s wish to die might seem a fair request. Surely, it might be asked, the kindest thing to do would be to accede to his wish to die? Give him some extra sleeping pills or a lethal injection and let him drift off, away from the harassment and bullying, no longer a burden to anyone, no longer having to suffer intolerably.

Unfortunately, the case illustrated above is not an isolated one. Elder abuse, (defined as a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person[1]) is a global problem. Age Concern New Zealand note that older people are particularly vulnerable to abuse because they are dependent on others and there is often an imbalance of power. A large community based study in the United Kingdom reported that 2.6% of older people experience some form of abuse or neglect each year.

The New Zealand experience, we are told, mirrors the international figures. 2.6% is equivalent to two older people in New Zealand being abused every hour of every day.[2] It is also said that only 16% of all abuse incidents reach service agencies. Part of the reason for this is that older people may fear a complaint will result in more abuse or poorer care. This means that abuse, once it starts, is likely to continue to happen.”^[3] Age Concern New Zealand report that they deal with 1,000-1,500 new referrals a year, or four per working day of which approximately 1,000 are substantiated. If this figure represents only 16% of incidents, then the total number of cases is in the vicinity of 6,250 per year or 17 cases per day. It is not absurd to say that getting old in New Zealand is fast becoming a dangerous pastime.

In addition, it is reported that almost 80% of abuse is committed by family members. It is also known that family members continue to abuse their older relatives even when they are in residential care. Furthermore, over 40% of abusers are adult children.[4] As Baroness Ilora Finlay recently remarked: Parents love their children but children do not always love their parents.

Our elderly people deserve better. They have worked hard to build up our country, both in population terms and financially. While there is no denying that there are increased health and care costs for older people as they grow more frail, and while there are hard decisions to be made around the fair allocation of healthcare resources, we must resist viewing and speaking of the elderly primarily as financial (as well as emotional and social) liabilities. This is, in itself, a form of abuse, given that it will affect the way in which they come to see themselves – as burdens rather than as persons deserving the best of care and entitled to a sense of well-being and security. It would be grossly unjust for the elderly to bear a disproportionate burden of responsibility for solving a problem that affects all of society.

What is called for is a degree of soul-searching at the individual and societal level. Where are our priorities? Is it people or money which is the more important? The Maori certainly have an answer to that question: he tangata, he tangata, he tangata – it is the people, it is the people, it is the people.

For those inclined to consider the life of the old man highlighted above as worthless, of low quality, and generally not worth living, there is a happier ending. Following an eventual change of residence to a more supportive and caring environment, he is back to his old self, cheerful, participating in activities with other residents, happy and not in the least interested in wanting his life to be ended.

The subject of elder abuse is about to come under more scrutiny. If Maryan Street’s End of Life Choice Bill were to be picked out of the ballot and passed by parliament, it would become legal, and quite easy, for an elderly person to request assistance to die. Putting aside one’s views about the morality of euthanasia, one of the strongest reasons for opposing the legalisation of state-sanctioned assisted suicide is that there would be elderly people who would feel pressured, subtly or not so subtly, into asking for assistance to die.

The elder abuse statistics illustrate that this scenario would likely become commonplace. Chances are, were euthanasia legal, the elderly person in this story would not now be alive and enjoying life. That would represent a gross injustice and ultimately a failure on the part of all of us to protect a vulnerable person and to address the real issue of ageism and elder abuse. But of course none of us would know – we would, instead, be sitting back comforted by, and even proud of, the fact that we had allowed him to exercise his choice. And each of us is capable of putting a face to this scenario because the abused elderly person asking for euthanasia or assisted suicide could be our grandparent, our mother or father, our brother or sister or the old lady next door who gives the children sweets when they visit … or even ourselves.

In the current ageist climate legalising euthanasia would be nothing other than downright dangerous for the elderly. What is urgently needed is a concerted drive to terminate elder abuse and to work towards a more inclusive, more caring and less ageist society.

• For about half of the older people supported by Age Concern over the last ten years, their health was significantly affected by the abuse they experienced.
• Two out of every five abused people experienced significant reduction in their independence, loss of confidence and self-esteem, and reported feeling very frightened or anxious and emotionally distressed.
• About a quarter experienced long-term consequences.

Source: Age Concern: http://www.ageconcern.org.nz/safety/elder-abuse/key-statistics-about-eanp

Kilian de Lacy is a writer and a nurse (now retired) who specialised in the care of the elderly and dying. She continues to work with the elderly through Grey Power. She also provides budgeting advice for vulnerable individuals and families through Agape Budgeting Service. She is an active member of Holy Family Parish, Porirua.

A comment on the Liverpool Care Pathway

Professor David Albert Jones

The Liverpool Care Pathway for the Dying Patient (LCP) was developed in 1997 by the specialist palliative care team at the Royal Liverpool and Broadgreen University Hospital Trust together with the Marie Curie Hospice in Liverpool. The Marie Curie Palliative Care Institute Liverpool (MCPCIL) has led the dissemination of the LCP nationally and internationally as a continuous quality improvement programme to support care in the last hours or days of life. The generic core document of the LCP (MCPCIL 2009) can be found on the MCPCIL website (www.mcpcil.org.uk) along with other supporting material. The core document does not stand on its own but needs to be used within a system of training and audit. The LCP has been developed by and should be understood in relation to the Marie Curie Palliative Care Institute Liverpool and the hospice movement and palliative care profession more generally. The document should be interpreted in this context and also in the light of guidance from the General Medical Council on treatment and care towards the end of life (GMC 2010). This context is acknowledged explicitly on the MCPCIL website, for example, “the LCP prompts clinicians to consider the need for CANH [clinically assisted nutrition and hydration]. All clinical decisions must be made in the patient’s best interest and tailored to the patient’s individual needs. The GMC guidance provides specific information regarding this issue” (MCPCIL 2012).

The main principles behind the Liverpool Care Pathway are those of good palliative care and are fully in accordance with Catholic moral theology and with a Catholic understanding of a good death. Nevertheless, in practice it is clear that there is scope for patients to suffer if the LCP is misunderstood and used inappropriately, and the LCP may need to be improved in order to reduce the scope for such misunderstandings. There are a number of pressures that might subvert the proper implementation of the LCP. These might include:

• the subjective character of judgments about how soon someone is going to die, and the lack of explicit evidence-based criteria for this judgment in the case of the imminently dying;
• the fact that the LCP may be initiated by people who are not senior clinicians, or are not familiar with the individual patient’s case, or who have not consulted with palliative care physicians;
• the influence of managerial pressures to reduce bed occupancy or meet targets of one kind or another;
• reluctance to face the problems of continuing care of certain difficult patients;
• the euthanasiast outlook of some clinicians;
• the possibility of doctors or nurses regarding the LCP as a set of “tick boxes” (which is part of a larger cultural problem in the health service);
• that rather than assessing, and regularly re-assessing, the needs of the patient, fluids might be withdrawn automatically, where they could, for example, have been useful in alleviating thirst, (in some cases patients have been deprived even of sips of water or of the moistening of their dry mouth);
• Other NHS organizational/ staffing procedures or constraints that may prevent an essential step or dimension of the LCP from being properly applied.
• Lack of discussion with patients (if they are competent) and relatives or carers.

The hospice movement, which is widely admired and supported, is often successful in meeting the needs of dying people for adequate symptom relief, for human support, and for spiritual care. However, most of us in Great Britain and Ireland do not die in a hospice, nor do most of us die at home. We die in hospitals which have as their main aim to get people better, to cure, or at least improve people’s state of health. In the context of a system that focuses on cure it is difficult both for clinicians and for relatives to admit that a patient is dying and might need care appropriate to the dying. Research shows that care of the dying is poorest in the hospital setting.

The LCP may be regarded as an uneasy compromise because it seeks to deliver what would be better delivered, but cannot (within realistic resource constraints) be delivered, by universal availability of hospice care. It is for this reason that the MCPCIL website acknowledges that the LCP “is not the answer to all our needs for care of the dying but is a step in the right direction”.

The LCP is not the only approach to improving the quality of end of life care but it has been recommended by the Department of Health, the End of Life Care Programme and by the NICE Quality Standard for End of Life Care. It has also been taken up by a number of other countries (including majority-Catholic countries) and is the focus of international research and collaboration with the aim of improving standards of care.

As with palliative care more generally, the LCP when properly implemented does not aim to hasten death but aims to support doctors and nurses to give the treatment and care that is appropriate for a dying patient and to withdraw any treatments or forms of care that are futile, burdensome, or counterproductive.

The Catechism of the Catholic Church is very clear that medical treatment can sometimes be withdrawn:

“Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome can be legitimate: it is the refusal of ‘over-zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted. The decision should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected” (paragraph 2278).

The view of the Catholic Church, as expressed by Pope John Paul II and by the Congregation for the Doctrine of the Faith, is that food and drink, even when provided by tube (CANH), should not be regarded as medical treatment but rather, as ordinary care, which is, in principle, obligatory. Nevertheless, when death is imminent, this form of care may no longer be needed. Thus Bishop Anthony Fisher OP (who delivered the Anscombe Memorial Lecture in 2012 on discrimination against older patients), states that, “it will sometimes be appropriate to withhold, reduce or withdraw assisted nutrition and hydration” (Fisher 2012, p. 232).

From a traditional Catholic perspective it is not always mandatory to institute clinically assisted hydration (CAH) in an imminently dying patient. The question, therefore, is whether a particular patient might benefit from CAH in regard to sustaining life or relief of adverse symptoms. From a traditional Hippocratic perspective it is absolutely clear that CAH should never be withheld or withdrawn in order to hasten death. On the other hand it is not clear that most patients who are entering the last phase of dying would benefit from CAH. Physicians in different countries have adopted different practices and the evidence is mixed. Within the hospice movement in the United Kingdom it is relatively rare to institute CAH. Nevertheless, good practice (as reflected in the GMC guidance and in the LCP) is not to have a blanket policy but for each patient to be regularly assessed as to how best to address nutritional and hydration needs (“You must assess their needs for nutrition and hydration separately and consider what forms of clinically assisted nutrition or hydration may be required to meet their needs” GMC 2010, paragraph 111). A good summary of the current evidence in relation to the benefits and burdens of instituting CAH at the end of life is provided in a recent paper by Anna Nowarska (2011, see also Dalal, Del Fabbro and Bruera 2009, Keeler 2010). 

The Church has also made clear that pain relief and sedatives may be given where they are needed, even if this reduces lucidity and even if it were to shorten life, though the evidence is that opiates titrated for symptom relief do not shorten life (Sykes and Thorns 2003a; 2003b; Maltoni et al. 2009).

“Human and Christian prudence suggest for the majority of sick people the use of medicines capable of alleviating or suppressing pain, even though these may cause as a secondary effect semi-consciousness and reduced lucidity… [and even] if one foresees that the use of narcotics will shorten life... In this case, of course, death is in no way intended or sought, even if the risk of it is reasonably taken; the intention is simply to relieve pain effectively” (SCDF 1980).

The LCP encourages a system of anticipatory prescribing, so that pain relief is available as soon as it is needed, but both pain relief and sedatives should be given only as necessary to bring symptoms under control. In the United Kingdom and the Republic of Ireland it is not considered good practice in palliative care to aim at producing continuous deep sedation. While sedatives might sometimes be given in excess of what is needed, audit evidence shows that levels of sedation on the LCP have generally been relatively modest and there has been no evidence of continuous deep sedation (Gambles et al 2011). The contrast between the aim and typical outcome of sedative practice on the LCP, and the practice of continuous deep sedation, as used in the Netherlands as an alternative to active euthanasia, is best illustrated by a comparison of the doses used and recommended. This is helpfully set out by Dr Jeff Stephenson, a Consultant in Palliative Medicine based in the UK.

“The second national audit [of the LCP] found that drugs prescribed for agitation and restlessness were given in only 37% of cases, and the median dose of midazolam, the most frequently used drug for this indication, was 10mg/24hrs. This contrasts markedly with guidance on continuous deep sedation from the Royal Dutch Medical Association which recommends a starting dose of 1.5 – 2.5 mg per hour, with progressive escalation until unconsciousness is achieved, up to a maximum of 20mg per hour. Interestingly, the use of the LCP in the Netherlands has been reported to reduce the extent to which physicians use medication that might hasten death” (Stephenson 2012 citing NCDAH 2012 and KNMG 2009, emphasis in the original).

Thus, the LCP is an approach to improving standards of end of life care and is not either in intention or in practice, when properly implemented, a form of euthanasia. The LCP is a means to promote palliative care and research has shown that, among doctors, palliative care physicians are the least likely to hasten death and the least likely to intend to hasten death (Seale 2006, Seale 2009). According to the MCPCIL, “the LCP exists to support good decision making in the last hours or days of life which will focus on ensuring good quality of care. The provision or withdrawal of interventions with the direct aim of hastening death is contrary to the rationale of the LCP, contrary to GMC guidance, and illegal” (MCPCIL 2012).

As patients or relatives of patients, we may sometimes resist the recognition that we or our loved one is dying and may push for unnecessary treatments or procedures which are burdensome or harmful and which do not improve the quality of the person’s life. On the other hand, we all wish to know that proper care is given until the end, and that a person who dies has not been deprived of treatments that would have been beneficial or even deprived of further weeks or months of life. The Catholic perspective on this will show concern both to avoid the danger of overtreatment and to avoid the danger of under treatment. This understanding of virtue as lying between opposite vices was clearly set out in the bishops’ conference document on the Spiritual Care of the Dying:

“There are two things that need to be kept in mind in end of life care: respecting life and accepting death. Respecting life means that every person must be valued for as long as they live. One implication of this is that death should never be the aim of our action or of our inaction. We should never try to bring about or to hasten death. On the other hand, accepting death means that we should prepare properly for death. One implication of this is that we should not deny the reality of the situation or flee from the inevitable by seeking every possible treatment.” (CBCEW 2010, paragraph 2.1)

There is a danger that media reporting of claims of abuse may not always present a true and balanced view of the LCP and its purpose, although all such claims should be taken seriously. Understanding of current practice should also be informed by evidence from national audits and from empirical research published in peer review journals (for example, National Audit Office 2008, NCEPOD 2009, NCDAH 2012, Veerbeek et al. 2008). The principles behind the LCP are compatible with a Catholic understanding of morality and of the meaning of life and death. Nevertheless, as the LCP has been used more extensively there may well have been increasing occasions where someone supported by the LCP has not been provided with adequate care, or where someone has been referred to the pathway inappropriately. Examples of these cases, reported in the media or not, should be used to improve the pathway in future iterations. In the meantime, Catholic doctors, nurses, relatives and patients should continue to take care that the Liverpool Care Pathway, or indeed any other integrated care pathway, is used correctly, to identify and address the patient’s actual needs (Atkins 2012). In some situations, this may involve being aware of and seeking to address some of the pressures (described above) that have the potential to subvert proper implementation of the LCP.

There are different levels of ethical analysis of an integrated pathway for the care of the dying: its fundamental rationale; the precise wording of its documentation; the possibility of using it ethically in the best case; the possibility of its ethical use in the typical case (in general or for the most part); the actual pattern of use of the pathway; the possibility of abuse; the possibility that flaws in the pathway might make some kinds of abuse more likely; the further ethical guidance that might be necessary for healthcare professionals in applying the pathway; and the ethical guidance that may be necessary for patients and relatives to mitigate the chance of abuse on the pathway.

This comment has focused on the rationale of the pathway and thus the very possibility of good use. It suggests that the LCP can be used ethically when applied by skilled and ethically committed professionals. Used correctly, the LCP can and does help support the kind of good death for which Catholics pray, a peaceful death that is not hastened but is accepted consciously with faith in God and hope of everlasting life in the world to come.

In regard to the wording of the core documents, while the LCP is already in its twelfth iteration, there are ways in which this wording could be improved further, for example by making use of the wording of the GMC guidance in relation to CANH, and no doubt in other respects. There is more work to be done here.

In regard to actual use, there is certainly evidence of abuse and failures of care of people on the LCP, but such evidence does not show that its use in general or for the most part is unethical. There is more to be learned about how the LCP is being applied in general and how this may be improved and failures avoided. It is to be hoped that the current Department of Health review of individual cases and of systematic data will shed some light on this.

There is thus more work that needs to be done in relation to ethical analysis of the LCP. This comment is intended to help clarify some of the key ethical and clinical questions raised by the pathway in the hope of contributing to the eventual resolution of this complex and important area.

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David Albert Jones is Director of the Anscombe Bioethics Centre, Research Fellow at Blackfriars Hall, Oxford, and Visiting Professor at St Mary’s University College, Twickenham. He is a member of the National Reference Group of the Liverpool Care Pathway.

This comment is the Director's personal view and is not intended to represent the position of the Anscombe Bioethics Centre.  

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