Ethical Issues in Older Patients
Abstract and Keywords
Ethical issues in older patients often arise in the context of physical and mental frailty. Professionals should be alert to the possibility that, on the grounds of frailty, the older patient’s personhood is undermined. It can often seem as if physical or mental dependence makes this inevitable and stigma results. But there are ways in which the person’s autonomy can be enhanced by those who provide care. Advance care planning is intended to preserve the person’s autonomy, but may not do so if care practices are poor. When it comes to consent, the issue of capacity is crucial. But evaluative judgements are required in assessments of capacity, as indeed they are when it comes to diagnoses of dementia or even of mild cognitive impairment. What we really need are broad judgements of best interests, which should be predicated on broad conceptions of the person as a situated embodied agent.
Almost the only generalization that can be made about older people is that they are ageing. Yet this is paradoxical because we are all ageing: to live is to age. So, what are the unique characteristics of ageing in older people that mark them out? I think when we worry about older people we are worrying about decline or loss. Now one important point, to be made immediately, is that old age is not all about decline and loss. In the Newcastle 85+ study, for instance, even though the cohort of men and women born in 1921 on average had between four and five diseases, there were low levels of disability and 77.6 percent rated their health compared with others of the same age as good, very good, or excellent (Collerton et al. 2009). So ageing, even in older people, is not all about decline and loss. Nevertheless, the notions of decline and loss are perhaps epitomized by the term “frailty.” Turning to ethical issues, then, I shall discuss them in connection with physical and mental frailty. However, having done so, I shall consider the broader notion of personhood and will end with some brief reflections relating to death and palliative care.
Physical frailty and ethical issues
Dependence, vulnerability, and stigma
Physical frailty produces both dependence and vulnerability. The process of ageing itself causes stigma. The ethical issues that result are both personal and societal. They are personal in that, once a person is marked (as “stigma” suggests), he or she carries a sign of disgrace. Ageing is, thus, conceived at some level as disgraceful. Older people consequently find themselves isolated and lonely. Some aspects of physical frailty, urinary incontinence for instance, are isolating because they are felt to be a disgrace. And many of us are disgusted by smells, (p. 256) by dribbling, and by other aspects of physical decline, which signify a lack of control. Our individual responses to older people are important; but the issue is one that calls for societal action and recognition too.
Perhaps this is best conveyed by the notion of solidarity, by the idea that the issues raised require a broader response than simply a personal one. After all, we are in the business of ageing together. Older patients, therefore, must not be marginalized. A recent report from the Nuffield Council on Bioethics characterized “solidarity” by saying that it signified “shared practices reflecting a collective commitment to carry ‘costs’ (financial, social, emotional, or otherwise) to assist others” (Prainsack and Buyx 2011, paragraph 5.3). The authors went on to emphasize that solidarity must be understood as a practice, which requires action; it is not simply an inner sentiment or a question of empathy (paragraph 5.4). As societies and as individuals we must be committed to action to sort out discrimination, to avoid ageism, to encourage meaningful participation and engagement.
In older psychiatric patients, even if a person’s physical appearance is upsetting, professional ethical principles apply: older people still require the same sort of concern and therapeutic effort as younger adults. There may be, for example, real difficulties in understanding the person whose speech, following a stroke, is markedly dysphasic. But, to accord the person appropriate respect and dignity, we should take steps to alleviate the difficulties (e.g. by involving a speech and language therapist).
Another common enough problem for physicians and psychiatrists dealing with older people is the situation where the person seems to have “given up.” This might be a natural reaction to the concrete circumstances of multiple or debilitating chronic conditions. The appropriate response might then be a palliative one. But “giving up” might reflect a depressive disorder. Deciding whether this is simply the end stage of a dementia, which requires palliation, or a reflection of a depression in the context of cognitive impairment, can require a good deal of clinical acumen. Where the person is neither eating nor drinking, it may well be reasonable to consider using electroconvulsive therapy (ECT). But relatives and other professionals might regard ECT in someone who is clearly frail and ill as inappropriate. Careful negotiation will be required, but this will often be in the context of limited time because of the possibility that the patient will deteriorate rapidly.
The physical frailty of older psychiatric patients also places them at risk of abuse, which may be physical, sexual, financial, or emotional (Hirsch and Vollhardt 2008). It may stem from the stress experienced by overburdened carers. Alternatively, it may arise in the context of bad practice in institutional settings. Vulnerability and abuse are also manifest whenever (p. 257) the older person suffers a loss of dignity, by being left exposed or helpless in situations which might range from mildly embarrassing to hugely shocking. In a variety of ways, then, physical frailty requires that practitioners demonstrate professional virtues, those inner dispositions—from fortitude to fidelity—which allow the clinician to ignore stigmatizing signs and treat the vulnerable with compassion and humanity (Radden and Sadler 2010).
Many aspects of physical frailty point towards the issue of dependence. Agich (2003) provides a nuanced account of dependence in the context of old age. There is a natural inclination to regard dependence as a bad thing, in particular because it represents an assault on autonomy. We need, however, to recognize that we are all dependent: none of us is fully autonomous. Rather, through our dependency we exercise our autonomy. I may now be dependent on a walking frame, but it is this that helps me get into the garden. Of course, such a line of thought could be pushed too far: some aspects of dependency will be experienced as truly upsetting and demeaning. However, the point is that it is not dependency as such that is the culprit. Dependency is the flip side of autonomy: “ … the concept of autonomy properly understood requires that individuals be seen in essential inter-relationship with others and the world” (Agich 2003, p. 174). The evils associated with dependency usually reflect bad care practices.
One aspect of good care is the proper use of medication. We know that older people are prone to polypharmacy, where multiple drugs have been dispensed over time without review and with the potential for interactions and adverse effects. It is possible, however, to take a rational approach to discontinuing medication in older people (Holmes et al. 2006). Psychotropic drugs, such as benzodiazepines, are not only over-prescribed, but can lead to a variety of problems in older people (Schmidt and Abou-Saleh 2011). So, too, with antipsychotic medication, which is particularly worrisome in the context of dementia (Ballard and Aarsland 2010), but can exacerbate physical frailty in all older people (Leon et al. 2010). At the level of principles, the ethical issues involve weighing up beneficence and nonmaleficence, but also taking account of the autonomous wishes of the older person, which are often ignored.
Treatments can occasionally be withheld from older people on the grounds of poorer efficacy. Arguments about resource allocation need to be carefully considered, because sometimes older people benefit more than younger people from particular treatments; but also because ageism—like any form of discrimination—should be resisted (Lesser 2012).
Many of the issues already mentioned are also relevant to mental frailty. Nevertheless, the main matter that has to be considered under this heading is the loss of capacity consequent (p. 258) upon cognitive impairment, particularly in dementia. The moral dilemmas that arise in connection with dementia have been discussed in some detail in the report of the Nuffield Council on Bioethics (2009). Dementia itself, however, is not an unproblematic notion and raises important issues involving values and diagnosis, to which we shall return.
Consent, capacity, and confidentiality
Whether we are talking about consent to treatment, to investigations, to participation in research or to a multitude of other matters (e.g. to receive clinical letters, to have third parties attending clinical meetings, to be fed, to be interviewed, to appoint an attorney, and so forth), capacity raises its head as an important clinical and ethical concern. From an ethical perspective, the issue of consent is straightforward: if the person does not consent, we cannot pursue the action or intervention. Capacity, however, is the potentially shifty component of consent.
First, it appears that capacity is not always assessed as rigorously as it could be, especially not in busy practice (Emmett et al. 2013). Secondly, however, it may be that this occurs, not only because people are busy, but also because there is an evaluative aspect to capacity assessments which makes them deceptively difficult (Greener et al. 2012).
A person with dementia has been admitted to a medical ward. There is then some doubt as to whether he or she will be able to cope if discharged home. This type of event is both ubiquitous and regarded as unexceptional. It is often simply accepted that a person should go into long-term care against their wishes because they can no longer cope at home, despite the implications for civil liberties. Professionals may be motivated by a strong sense of beneficence. But this leads them to assess the person’s capacity in terms of the potential outcome, rather than considering more closely whether or not the person has the functional ability to make the particular decision (Emmett et al. 2013). Meanwhile, since all definitions of decision-making capacity require some form of evaluation or weighing-up, the test of capacity will inevitably involve values and normative concerns (Charland 2001), which can be used uncritically to support professional judgments. Albeit for legal purposes a capacity assessment is assumed to be an objective test, it is not.
In England and Wales the relevant legislation is the Mental Capacity Act 2005 and, if the capacity test is failed, decisions must be made in the person’s “best interests.” This concept is not defined, but appears mostly to amount to a substituted decision with a little leeway to allow proxy decision-making. The exact provisions of different jurisdictions do not need to detain us; but the principle that decisions should consider matters from as broad a perspective as possible, if a proper judgment is to be made about what is best and right for the particular person under the specific circumstances that obtain, seems compelling. Thus, it might be that assessments of capacity should be kept quite legalistically tight, whilst judgments of best interests should more appropriately be broad in their scope (Greener et al. 2012). In other words, even if it is judged, according to a strict interpretation of the relevant criteria, that the person lacks capacity to make a decision about going home, it might none the less be the right thing to allow them to go home but to insist that appropriate supports are in place to make this feasible.
Although confidentiality is a separate topic, there is an important link with the issues of consent and capacity. Many carers of people with dementia complain that they are excluded from important decisions about their loved ones because doctors retreat behind (p. 259) the principle of confidentiality. This most often occurs in the early stages of dementia when the person may be unaware of the stress that they are imposing on their families and close friends. The principle of confidentiality is, of course, as important for people with dementia as it is for anyone else. One way for clinicians to proceed under these circumstances is to perform a careful assessment of the person’s capacity to decide on the involvement of others in his or her care (see Nuffield Council on Bioethics 2009, paragraphs 3.23–3.24). It may be that the person with dementia is just unaware of the stress being experienced by others, in which case it may be that the requisite capacity is lacking. It may be (but of course may not be) in the person’s best interests for his daughter to be kept informed, or for her husband to be involved in consultations.
There is a deeper issue too, which turns on the idea that we are situated as persons in the context of our relationships, which means that others must be involved in decisions about us (Hughes and Louw 2002). This idea can itself be predicated on the view of Kitwood that personhood, “is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being” (Kitwood 1997, p. 8).
Diagnosis, values, and MCI
Before discussing the notion of personhood further, it is worth noting that psychiatric diagnoses in old age are just as evaluative as at other times of life (Sadler 2004). When it comes to dementia, this may seem odd because of its standing as a condition with “organic” pathology. It is true that a diagnosis of dementia will have a pathological basis in the brain. But the evaluative aspects of these diagnoses is seen at the margins, where it is not possible to say for certain where normality ends and abnormality begins. This is true in neurocognitive terms: we can stipulate that a certain score on a cognitive test is abnormal, but this is itself an evaluative judgment. Furthermore, for any particular individual, the stipulated score may be wrong. For example, we know that people of high intelligence can continue to score above the cut-off on some cognitive tests despite showing obvious signs of dementia otherwise. It is also true pathologically, because a variety of studies have shown that brain lesions do not always correlate with functional disabilities (I have discussed this in more detail in Hughes 2011a). Again, we can stipulate that such and such an appearance down the microscope is in keeping with a diagnosis of some particular type of dementia (Alzheimer’s disease say), but we have to accept that the person with these brain changes may yet not show evidence of dementia (Snowdon 2003).
These considerations become much more controversial when Mild Cognitive Impairment (MCI) is discussed. MCI is a diagnosis of a pre-dementia state, but one which is believed to be useful in terms of predicting the emergence of dementia. However, the annual “conversion rate” of MCI to dementia is only between 10 to 15 percent (Hughes 2011b, pp. 32–34). Five years after a diagnosis of MCI, Fisk and Rockwood (2005) showed that 25 percent of people, in a population study (in contrast to clinical studies), had no cognitive impairment. The ethical and philosophical implications of the “diagnosis” of MCI were rehearsed in some detail in a special edition of Philosophy, Psychiatry, & Psychology (Hughes 2006). It looks as if this diagnosis, albeit intended to be helpful clinically, nevertheless reflects a variety of social and cultural pressures (Moreira et al. 2008), including pressure from the pharmaceutical industry.
The issue of MCI is linked to the drive to achieve earlier diagnoses of dementia. Again, the impetus behind the drive to early diagnosis is a good one. It stems from the real worry that (p. 260) many people with dementia do not receive a diagnosis until some way into the condition, by which time matters may be quite problematic for the person and for his or her family. So, we want an early diagnosis for the negative reason that we wish to avoid a late one! More positively, an early diagnosis allows planning in anticipation of problems and it gives people “a definitive answer to complaints that might be causing distress and anxiety” (Burns 2012). It is also what people with dementia and their carers want. But the benefits of early diagnosis have been questioned (Sharvill 2012). It seems better to argue for a “timely” diagnosis, “when the cognitive and other changes … begin to have a significant effect” on the lives of the people concerned and on the lives of those close to them (Nuffield Council on Bioethics 2009, paragraph 3.17). Of course, whether a diagnosis is timely also reflects what might be done in response. At present the treatments for Alzheimer’s dementia are only modestly effective at best and there are no specific treatments for other types of dementia. But some people take the view that an early diagnosis allows time for advance planning, i.e. for thought about future care and what the person might or might not wish to happen, not only with respect to medical treatments but also in connection with management of finances and decisions about place of care (advance care planning is further discussed in the next section). This is by no means straightforward and the benefits must be weighed against the risks of, for instance, social stigma.
The creation of the diagnostic category of “mild neurocognitive disorder” in the fifth edition of the Diagnostic and Statistical Manual (DSM-5) has helped to secure the standing of MCI as a diagnostic entity. The thought that there might be treatments available that could help to prevent full-blown dementia from developing if given in the pre-dementia phase obviously fuels the need for the category of MCI. If not all MCI presages dementia, however, this motivation is somewhat undermined; as it is by there being no effective treatments or preventative measures for the dementias that affect old age (such as Alzheimer’s, vascular dementia, or dementia with Lewy bodies). And there is the more general worry that MCI amounts to the pathologizing of normal ageing; indeed, the worry is that the whole push for early diagnosis amounts to a subtle (and not so subtle) medicalization of normal ageing. Conceptually, how is the boundary between normal and abnormal to be constructed or maintained (Hughes 2013a)?
MCI presents, therefore, a striking example of both the second and third principles of values-based medicine (VBM), namely, that values become noticeable when they are diverse or conflicting (second principle) and that scientific progress opens up choices and thereby brings broader values into play (third principle) (Fulford 2004). The evaluative decisions, about what counts as normal and what does not, demonstrate the different intuitions, exposing the different values, of the different constituents involved in these discussions. The suggestion that various biomarkers (from genetics to neuroimaging) might improve diagnostic accuracy in research (Dubois et al. 2007) shows how scientific advance simply fuels the debates around values, because the weight given to any particular biomarkers itself reflects value judgments.
Advance care planning
One of the key elements behind the push to early diagnosis is the thought that this will encourage advance care planning (ACP). This can take various forms, from advance refusals of treatment (as in an advance directive), to the appointment of proxies to manage health, (p. 261) social or financial decisions (in England and Wales called Lasting Powers of Attorney); alternatively the person might just write a statement of values to be considered in the future. Like early diagnosis, encouraging ACP is government policy in the UK and in other countries too. Yet there is surprisingly little evidence that it is effective (Robinson et al. 2012). There is some evidence that ACP reduces unnecessary hospital admissions; but there is also a good deal of uncertainty surrounding its use (Robinson et al. 2013). This uncertainty is then reflected in the continuing low uptake of ACP in the general population and particularly in the older population. This may be a purely practical matter requiring more guidance and support for people who would be inclined to undertake ACP if such help were available. It may reflect a cohort effect, that the present cohort of older people is more inclined to trust medical and other professionals to make decisions in their best interests. There is, however, at least the possibility that a deeper issue is lurking.
The belief in ACP may represent a commitment to the idea that everything can be sorted out in advance in such a way as to protect the person’s future autonomy. It is as if, through ACP, I should be able to control my future. Contrariwise, perhaps there is a deeper appreciation of the extent to which this cannot be achieved. Of course, some things can be controlled. The take-up of Lasting Powers of Attorney (LPA) to govern property and financial matters is much better than other aspects of ACP in England and Wales. It could similarly be argued that appointing someone you trust to make decisions about your health and welfare is a sensible provision, which is another aspect of ACP that could be encouraged (and would be covered in England and Wales by a welfare LPA). What is much more problematic, because more uncertain, is the use of advance refusals of treatment (Nuffield Council on Bioethics 2009, paragraph 5.41). The concern about this type of ACP is that it might act against the interests of the person at the time that the advance refusal of treatment is put into effect (e.g. because some circumstances were unforeseen when the advance refusal was created). ACP should be considered, therefore, more as an on-going conversation in the context of care, whereas it often seems to be regarded as a process of completing legally binding forms.
Whether in connection with physical or mental frailty or not, a central concern in old age is the notion of personhood. It would seem to underpin many of the other concerns that surround old age. The idea that the person should always come first is one that can be obscured both by physical and by mental frailty. Moreover, in the context of dementia, as in ageing generally, it becomes increasingly apparent that the older person cannot be regarded as an isolated atom. Instead, our mutual dependency means that the context of the person is all important. Thus, best interests must take into account the interests of others and advance care planning must be seen in the context of longer-standing relationships. If we characterize the person as a situated embodied agent (Hughes 2001, 2011a), we can also say that the individual’s whole history—their cultural, family, psychosocial, spiritual and personal embedding—must play a part in ethical decisions about them.
A specific example of this is seen in connection with behavior that challenges in the context of dementia. Also known as the behavioral and psychological symptoms of dementia (BPSD), this includes behaviors as diverse as depression, agitation and aggression, shouting (p. 262) and sexual disinhibition. Modern best practice guidelines normally emphasize the importance of pursuing psychosocial measures before resorting to drug treatments (Alzheimer’s Society 2011). The mantra that “challenging behavior” always signifies unmet need is another way of making the point that to understand the behavior requires that we understand the person (Hughes and Beatty 2013). Real person-centered care, therefore, which also pays attention to the embedded values and ethically pertinent aspects of a case, must take account of the situatedness of the person, which means knowing the person’s narrative along with the cultural and social context (Stokes 2008).
But a crucial issue for older people in general and people with dementia in particular is that their standing precisely as persons can be easily undermined. Kitwood (1997) talked of “malignant social psychology” and Sabat (2001) of “malignant positioning” whereby the individual’s selfhood is affected, not by the physical disease process, but by the surrounding psychosocial processes. The biggest issue for older people, therefore, is not loss per se, but that losses are thrust upon them even by those who love them; for instance, by treatment which positions them as incapable. This line of thought can extend to the argument that because of loss of cognitive function the individual with dementia has lost his or her personal identity (see Hughes et al. 2006 for fuller discussion). The situatedness that characterizes the person is intended to provide some defence against this line of thought, because personhood is held in place, inter alia, by the psychosocial and physical surroundings of the individual, as well as by his or her narrative. Ethical decision-making, therefore, whilst placing the person center-stage, must also always be open to the background context in which the individual is embedded.
The ultimate background against which we live and age is the reality of death. In old age, the proximity of death means that ethical decisions must be made according to this reality. At some point, the palliative approach becomes most appropriate. In dementia more specifically, there is a variety of circumstances where it is increasingly accepted that good practice involves withholding treatment and limiting interventions (van der Steen et al. 2013). These decisions can be supported by well-established ethical approaches and doctrines (Hughes 2013b), such as the doctrine of ordinary and extraordinary means. For psychiatrically ill older people the main issue is often that they must be seen as wholes, not as parts. Holism makes sense in terms of biomedicine, because we often cannot treat the depression if we have not treated the metabolic disturbance. Moreover, it makes sense philosophically and ethically too (Hughes 2011a). For older people are inevitably in the world and they cannot be considered correctly in ignorance of their concrete embedding circumstances.
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