Suicides in Japan and God’s gentleness

The struggle caused by the premature death of a person through suicide is addressed in a sobering piece of writing by Columban missionary Barry Cairns. "Itsukushimi" is a word in Japanese which is a combination of gentleness, understanding, love, mercy, compassion, warmth and the wonderful ability to feel with a person.

Available online at: http://www.misyononline.com/new/nov-dec2013/reflection-suicides-japan-and-gods-gentleness

Making a difference in aged care: a geriatrician speaks

 

Dr Janet Turnbull was recently interviewed by Michael McCabe and John Kleinsman. In this article she shares her personal insights on the challenges of caring for the elderly as well as the challenges faced by the elderly.  

Changing trends

It is clear that many people are living longer. When I first started out in this field we mostly dealt with the 70 and 80 year olds. The 90 year olds were rare. Now I often work with people in their 90’s. We are dealing with a much older group of people, they are frail, and often have multiple problems which cause a significant disability but we can help them keep going for a long time, often years.

 The elderly don’t live in the community in the way they used to. Older people may have for generations moved from their home to another place. They used to move in with a younger relative or live in a ‘granny flat’. That does still happen, particularly in the Pacifica cultures. Some of those families are just brilliant; they can give better care than almost anybody because they have big families and they often do it in relatively frugal circumstances, (I am generalising here but that is my personal experience from home visiting). Increasingly today, many families may find themselves reaching their limit because a lot of the younger generation are now working or studying. They have invested in education and then get jobs that they cannot just drop and pick up again, or if they do they have to put their careers on hold.

Sometimes we do a home visit and note that, while the patient is being looked after, the care is not being done in the way we would do it. We sometimes feel like we are walking a tight line. However, if the patient seems to accept it, and the family is comfortable with the care, we provide more visits or get more respite – it is a matter of balancing things out.

I think a lot of societal forces now are encouraging the elderly to downsize their houses and to move to another place where there is a lot more social activity. The policy of ‘ageing in place’ can mean that elderly people can become socially isolated as they gradually become more disabled, particularly if they do not drive. The move to develop retirement villages is a relatively new concept from the last twenty years; people move into a villa with a view to then moving on into an apartment and eventually into a rest home – you have to have some money to do that, also a degree of financial nous.

 

Older people’s attitudes

Some older people are very conscious of the fact that they may be a ‘burden’, which is what they don’t want. Physical disability often requires help. There is a real reluctance amongst the older people I work with to ask for help because they are generally very independent minded. Many of them were young people in the depression so they know about deprivation. They have also lived through and survived the Second World War. I think it is a genuine feeling of not wanting to put pressure on people. They are generally a more self-effacing generation, although there is very often a mixture of pride in their stance.

It is also, at least partly, a knee-jerk reaction to the loss of their independence; if you see that your physical needs put pressure on other people it makes you realise that you are not independent. A lot of people are aware of the stresses that their families are under these days. So it is about concern for their families as well.

Euthanasia is an issue people come up with and talk about a bit because they feel they are a burden on their families. But they don’t talk so much about being a burden on the State. 

 

Dementia

As people live longer, the number of older people with dementia will increase. This is a big issue. The big ‘problem’ 30 or 40 years ago was heart disease. We deal with that much better now through diet and managing blood pressure. But people who survive heart disease in their 60’s have an increased chance of developing vascular dementia because of their vascular risk factors.

Dementia is a cruel illness because it involves the actual disintegration of a personality and there is not a lot that can be done with medication. It is critically important to support the person and their family so that they understand what is happening – that is where we can make a real difference to quality of life.

We see many instances of a spouse looking after someone with dementia. The ‘well’ spouse will often try to cover up and compensate for the spouse with dementia. It can often appear to health professionals that some people have become unwell very suddenly, but when we look more closely we discover that they have been unwell and cognitively impaired for a long time. They come to our attention because the partner or spouse caring for them has suddenly died.

With the right kind of support, many people with dementia can remain out of institutional care for a good part of their illness . We need to develop the kind of understanding towards dementia that we have for people with heart failure or cancer. They can manage their own money with some assistance, and some manage to live at home for many years. Some of them still drive their cars at the start of their illness. It is a matter of getting more information to the public so that people can understand dementia. The community need is for education.

 

Societal attitudes to the elderly

We hear a lot about the onrush of the grey tide, a tsunami which these days is associated with horrifying imagery. It is generally described as a financial problem because the changing situation is mostly analysed from an economic or monetary perspective – as if people are to be valued by how much money they earn or how much tax they pay or the businesses they had.

We talk about all older people as if they are a threat to us. I don’t see the fact that we are ageing as a big problem because we could choose to see elderly people as a resource. The unpaid or non-monetised functions of old age don’t always get raised in the media. We could see people as useful in themselves. Experience is also valuable. The elderly are too easily judged as a potential financial risk on the health system and the fact that most of a person’s health care resources are spent in the last year of their life is sometimes mentioned in a pejorative sense. I ask: Why not spend money when it’s needed?

Even if we take an economic perspective, it should be remembered that people are still a resource because many can and still work into their 60’s and 70’s. They can still contribute financially (if that is how we judge people), they can still support people. Consider the volunteer base and the number of grandparents looking after grandchildren. We can still be an important part of society when we are older. Surely we don’t need to be seen as a problem simply because we need a bit of money from the State? If we are driving a car, if we are fixing our houses, if we are looking after grandchildren, if we are doing a bit of volunteering, we may not be earning lots of money but we are still making an important contribution.

In fact, the cost to the State that people argue about is that of a certain proportion of people who actually go into care. While a lot more people are going into care, they are staying a shorter time because we are getting better at keeping people at home. When they do go into care, they often die quickly. In fact, the elderly are not demanding more and more resources as they age.

To date anyway, we are actually managing it. It is only a small proportion of the elderly who are very disabled and who require lots of resources. We need to remember that many people who own their own house and have retirement savings actually pay for their care themselves. With improvements in health care, many of us will remain healthier for longer. Yes, we will need to access health care in the last year of life but we may also have contributed another 10 to 20 years of life while doing lots of other useful things. 

 

Provision of aged care services

The work with the elderly is largely undervalued. It is seen by many as little more than ‘wiping people’s bottoms’. I don’t think we spend huge amounts on the older adult, but if you see it as money you should be spending on other things, then you will see it as expensive. Many of the work force that I see in aged care facilities are immigrants which leads me to wonder: Do we as New Zealanders not value this type of work? Is it because some of it is poorly paid?

The bigger care facilities are striving to be professional in terms of providing education for their workers.  It appears to me that some parts of the elder care industry don’t keep staff because they don’t pay them a lot. If you have a high turnover of staff, you lose experience and initiative in organisations. Being low paid, this sort of work is not seen as attractive to many people who want a career. What happens when you have a poorly paid work force? It undermines good care. Education and stability will deliver better care. Nevertheless, there are some fantastic workers who stay in the industry.

We would actually prefer to manage people at home if possible (although institutional care is very important for some). Most of home based care, in fact 90% of it, is provided by primary health care providers; the GP working with  nurses, engaging with the elderly person and discussing issues with family.

There are the providers who deliver care in the home. These workers often don’t get paid appropriate wages for caring for patients with significant health problems – such as cognitive impairment and multiple medical problems – who struggle with even the basic activities of daily living. I suspect people assume that wiping bottoms is seen as something anyone can do.  In fact, encouraging someone to dress themselves, take their pills, and eat their meals and be set up for the day often takes a great deal of patience and skill. Organisations often allocate an hour per visit, but we also stack up the number of people they need to see in a day. Like many parts of the health system, it is under severe strain; the fat is being squeezed.

 

Racial differences in health outcomes and access to care

We very rarely see Pacifica or Maori in their 90’s. It happens occasionally. While it is more common for them to live into their 80’s now, many die in their 70’s. I vividly recall Don Brash talking ten years ago about ‘a society for everybody’. If you are pakeha, you tend to have a stroke in your 70’s and die sometime after that. On the other hand, persons of Polynesian descent who are living in Porirua are having strokes in their 50’s and 60’s. How can anyone say that is equitable? How can we possibly live with a system which delivers that sort of inequitable outcome?

Part of the problem is access to health care. Often enough the health care is available, but it is not delivered in a way that allows people to easily access it. There is also a cost associated with receiving care which can also act as a barrier for some. Older adults generally do well if they can establish contact with a regular GP or health practitioner. A good general practice can provide excellent support provided people are able to access it. The issues with the really old relate to their increasing disability. The question is always: have we offered people support when they needed it and how they needed it? Do we do it in the right way? Is it culturally appropriate and safe for the patient?

 

Elder abuse

When I encounter elder abuse, it is often related to the stress of caring – someone handled roughly because the carer just can’t cope any longer. It is unacceptable, but it is understandable. It happens mostly at home and with the person’s own family.

But it does happen in institutions. Sometimes it is because the wrong people have been chosen to work in that institution or because of poor management.

The instances of abuse that come out in the media are often the consequence of poor management in care facilities; less than ideal practice, not reviewing things. They are often related to a lack of knowledge, which is why facilities are now required to have strategies in place to deal with problems that arise.

It is always very difficult for families to put a family member into care. No matter how good it may be, individual care is replaced by the institution. The loss of one to one attention, which may have put the carer under a huge amount of stress, is still a change - things will never be the same.

 

Vision for the future

I see the Geriatrician’s role as making a difference in the lives of the elderly and their families. There is always something that can be done to make that difference even if it seems to be a small event. It’s about paying attention to people as individuals no matter how difficult that becomes.

There has been a huge explosion in the professional care industry in the last twenty years and I believe there will be yet more retirement villages being built because they represent a ‘good investment’. Back in the nineteenth century there were the poor houses and various other institutions. I sometimes wonder whether we are just revisiting institutionalism in a different way. I also wonder about how we will be able to support those who aren’t part of the upper or middle class – those people, for example, who used to live in council flats? How can we get affordable housing for these people? Do they just go into care somewhere or do we put personal health care resources into supporting them where they have always been living?

We have to work on reconnecting families. Children and grandchildren need to know that being family does not mean it is always going to be their sole responsibility to care for an elderly family member. I think people know that deep down, but all that ever seems to come out of the media is sensationalist reporting about the grey tsunami and the poor young people who are going to have to support their elders. Of course, in some ways that is true, because caring for our elders is what families have always done. But, we will be doing it in ways that are radically different, and in ways that are still to emerge. This does make it difficult for many people to understand what is going on right now.

The other important thing is the sense of history and continuity which dies with our old people if we don’t tap into it. Our society is the poorer for ignoring the stories which our elders can tell.

Something I think a lot about is that it would be nice if we took the fear out of being old and accepted it as a part of reality. It can be awful getting old. It can be really difficult getting old. But it isn’t always like that. We have to get away from all the generalisations and engage with the reality of life. We need to see old age as a possibility for growth and handing on knowledge.

 

Dr Janet Turnbull is a Consultant Geriatrician and a Fellow of the Royal Australasian College of Physicians. She has more recently trained as a Palliative Care Physician. She works primarily in the public health sector and for a community hospice.

 

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.  

Short Bibliography

Atkins, M. 2012. “Care or Neglect? Underneath the LCP” Catholic Medical Quarterly 62(3): 23-26.

Catechism of the Catholic Church. 1999. London: Geoffrey Chapman.

CBCEW, 2010. Catholic Bishops’ Conference of England & Wales Dept. for Christian Responsibility & Citizenship. A Practical Guide to The Spiritual Care of the Dying Person. London: CTS.

Costantini, M., Ottonelli, S., Canavacci, L., Pellegrini, F., Beccaro, M. 2011. “The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial’ BMC Health Serv Res. 11: 13.

Dalal S., Del Fabbro E., Bruera B. 2009. “Is there a role for hydration at the end of life?” Curr. Opin. Support Palliat. Care 3: 72–78.

Fisher, A. 2012. Catholic Bioethics for the New Millennium (Cambridge: Cambridge University Press)

Gambles M, McGlinchey T, Aldridge J, Murphy D, Ellershaw J. 2009. “Continuous Quality Improvement in Care of the Dying with the Liverpool Care Pathway for the Dying Patient”. International Journal of Care Pathways, vol 13: 51–56.

GMC (General Medical Council), 2010. Treatment and care towards the end of life: good practice in decision making (London: GMC).

Keeler, A. 2010. “Artificial Hydration in Pediatric End-of-Life Care” Virtual Mentor. 12.7: 558-563.

KNMG, 2009. Guideline for Palliative Sedation (Royal Dutch Medical Association).

MCPCIL (Marie Curie Palliative Care Institute Liverpool), 2009. Liverpool Care Pathway Generic Version 12 http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/documentation-lcp/ (accessed 17 January 2013).

MCPCIL, 2012 “Liverpool Care Pathway for the Dying Patient (LCP) ‐ FAQ” http://www.liv.ac.uk/media/livacuk/mcpcil/documents/LCP%20FAQ%20August%202012.pdf (accessed 17 January 2013).

Maltoni, M., Pittureri, C., Scarpi, E., Piccinini, L., Martini, F., Turci, P., Montanari, L., Nanni, O. and Amadori, D. 2009. “Palliative sedation therapy does not hasten death: results from a prospective multicenter study”. Annals of Oncology 20: 1163–1169.

National Audit Office. 2008. End of Life Care. Stationery Office London.

NCDAH, 2012. National Care of the Dying Audit – Hospitals. Rounds 1 (2006-7), 2 (2008-9) and 3 (2011-12). Marie Curie Palliative Care Institute Liverpool-Royal College of Physicians. http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/national-care-of-dying-audit/ (accessed 17 January 2013).

NCEPOD (National Confidential Enquiry into Patient Outcome and Death). 2009. Caring to the End? A review of the care of patients who died in hospital within four days of admission

Nowarska  A. 2009. “To feed or not to feed? Clinical aspects of withholding and withdrawing food and fluids at the end of life”, Advances in Palliative Medicine 10: 3–10.

SCDF (Sacred Congregation for the Doctrine of the Faith) 1980. Declaration on Euthanasia

Seale, C. 2009. “End-of-life decisions in the UK involving medical practitioners”. Palliat Med 23: 198–204.

Seale, C. 2006. “National survey of end-of-life decisions made by UK medical practitioners”. Palliat Med 2006; 20: 1–8.

Stephenson, J.  2012. “The Liverpool Care Pathway” Triple Helix Winter 2012: 14-15.

Sykes, N. and Thorns, A. 2003a. “The use of opioids and sedatives at the end of life”. The Lancet Oncology 4 (5): 312-318.

Sykes, N. and Thorns, A. 2003b. “Sedative Use in the Last Week of Life and the Implications for End-of-Life Decision Making”. Arch Intern Med. 163: 341-344.

Veerbeek L, van Zuylen L, Swart SJ, van der Maas PJ, de Vogel-Voogt E, van der Rijt CC, van der Heide A. 2008. “The effect of the Liverpool Care Pathway for the dying: a multi-centre study”. Palliat Med 22(2): 145-51.

 

 

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.

Elder Abuse: Who is involved?

  • 65% to 70% of abused are women. Even taking account of the fact that there are six women over the age of 65 for every five men, women are over-represented as victims of elder abuse.
  • 40% to 46% of abused live alone.
  • Up to 80% of abuse is committed by family members. Family members continue to abuse their older relatives even when that person is in residential care.
  • Up to 50% of abusers are adult children.
  • Unlike other forms of family violence, abusers are as likely to be female as male.
  • Up to 35% of abusers are primary caregivers. This could be a family member or support worker if the person is living in the community, or a staff member if the person is living in residential care.

Elder Abuse: The impact on older people

  • 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.



[1]World Health Organisation. (2002). Toronto Declaration on the Global Prevention of Elder Abuse. Geneva: WHO
[2]Age Concern New Zealand Ltd. (2012) http://www.ageconcern.org.nz/safety/elder-abuse/key-statistics-about-eanp, accessed 30 August 2012.
[3]Age Concern New Zealand Ltd. (2012) http://www.ageconcern.org.nz/safety/elder-abuse/key-statistics-about-eanp, accessed 30 August 2012.
[4]Ibid.

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.



[1] Devichand, Mukul. (2012)“China: Growing Old Before it can Grow Rich?”  The BBC News. http://www.bbc.co.uk/news/world-asia-china-18091107
[2]Ageism in America, International Longevity Center, USA, Introduction, Robert N. Butler (2006)
[3]Department for Works and Pensions (UK) – Attitudes to age in Britain 2004-08
[4] Maintenance of Parents Act. (1996) Revised Edition. http://statutes.agc.gov.sg.
[5] Lee, Art. 1995. “Singapore’s Maintenance of Parents Act: A Lesson to be Learned from the United States”. Loyola of Los Angeles International and Comparative Law Review. 17:671.  P.673
[6] Ibid, p.686
[7] Ibid, p.693
[8] Lee, A., p.699

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.

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