Autonomy is also identified with the qualities of intentional actions and being free from controlling influences. In medical ethics respect for autonomy is considered a fundamental principle [ 2 ]. Autonomy is a challenging issue in dementia care that needs to be understood in the context of caring for dependent persons [ 1 , 3 ]. For most older people, autonomy is important for good quality of life [ 4 , 5 ] as well as being able to live independently in their own homes unless limited by very poor health [ 6 — 8 ]. Even when institutionalized, participation in their own care is important [ 9 — 11 ].
Enabling people with dementia to remain involved in decision making is central to their self-determination and feelings of worth [ 12 ], in addition to promoting dignity, integrity and personhood [ 13 — 15 ]. Promoting autonomy is therefore considered an important aspect of person-centred dementia care [ 16 ].
According to Dworkin, respect for the right to autonomy is meant to protect the ability to act out of genuine preference or character or conviction or a sense of self [ 19 ]. This integrity view of autonomy allows people with dementia to construct their lives in accordance with their values and personality. The person can live true to his or her self, allowing life to continue to develop in ways congruent with their identity.
Preserving those aspects of life that are of vital importance to the person needs to be emphasised for as long as possible. A crucial question raised by Dworkin is whether persons with dementia have critical interests i. Critical interests are different from experiential interests, which are more immediate and fluctuating experiences.
New critical interests are difficult to form for persons with dementia because they have lost the grip on the narrative of their lives as a whole and the sense of continuity between past, present and future [ 20 ]. This is apparent if the person has consistent values and has the ability to rank them. Values are the basis for selecting from available choices and without values choices are difficult to make.
Therefore, respect for autonomy of the person with dementia means that family carers and professional caregivers need to help them express their values and realize their critical interests. This can mean supporting choice autonomy i. Agich uses the term actual autonomy in order to understand what it means to respect patient autonomy, especially in long term care [ 1 ].
Actual autonomy is not primarily equated with independence and rational decision making, but with identification. What people identify with is largely unreflective yet an integral part of the decision making process. This understanding of autonomy implies that helpers need to be aware of identification as the basis for decision making and that persons with dementia to a large extent are dependent on their helpers to carry out their decisions. Actual autonomy is less a state than a process of being in the world with others. With increasing severity of dementia, decision making capacity decreases [ 23 — 25 ].
This is a threat to autonomy and persons with dementia need help to compensate for declining abilities. In dementia care as in all health care, the principle of beneficence is the primary obligation. It entails a moral obligation to act for the benefit of others and prevent harm [ 2 ].
Case studies in nursing ethics ? 4th 11
Non-maleficence, on the other hand, means not inflicting harm [ 2 ]. Restricting autonomous actions can therefore be justified on grounds of beneficence and non-maleficence. Paternalism is thus a relevant issue in dementia care and may involve soft paternalism where helpers interfere by gently persuading or acting in such a manner that they do not let persons make poor choices or they protect them against the potentially harmful consequences of their own stated preferences or actions [ 2 ].
Helpers strive to respect their autonomous wishes by influencing decisions that lead to choosing the least restrictive alternative. The question of autonomy in dementia care is especially challenging in light of how vulnerable people with dementia are when living at home [ 26 — 28 ].
They are perceived to be at risk for problems with nutrition, falls, personal hygiene, drug management, fire hazards, getting lost, financial fraud [ 29 — 31 ] and social isolation [ 32 — 34 ]. These risks threaten autonomy.
De Witt et al. They wished to postpone the time for moving to an institution for as long as possible.
A Case Study Approach to Health Care Ethics
Family carers and professional caregivers are confronted with the need to minimalize harm non-maleficence and actively promote their wellbeing beneficence. Caring for people with dementia living at home can create ethical dilemmas of how to balance autonomy with their safety and wellbeing [ 27 , 36 , 37 ]. The research on ethics in the care of older people has received insufficient attention and ageist attitudes are believed to be a main reason for this [ 39 ]. In a literature review by Suhonen et al.
Rees et al. Helgesen et al. This led the authors to ask whether patient participation is a losing principle in institutional care of persons with dementia. Research studies have also addressed clinical situations such as nutritional and feeding problems [ 43 ] and use of restraints [ 44 ]. In their literature review Suhonen et al. Ethical issues concerning people with mental disorders including dementia living in the community have been neglected [ 45 ]. This is a concern at a time when the older population and the number of people with dementia increases and more older people will be cared for in their own homes [ 46 ].
In Norway, for example, more than half of those with dementia live at home and the public policy is to reduce institutional care in favour of providing more home care and day care centres [ 47 ]. In conclusion from our review of the literature, there is no strong tradition of research in ethical dilemmas related to autonomy in dementia care and in particular related to persons with dementia living at home [ 48 — 50 ]. This study contributes by illuminating the ethical dilemmas involved when persons with dementia wish to live at home and adds new insights because as far as we know no comparable in-depth studies have been conducted.
Empirical cases were analyzed within a theoretical framework consisting of the concepts of autonomy, beneficence, non-maleficence, paternalism and perspectives from the ethics of care. This Norwegian study had a qualitative, hermeneutic design [ 51 , 52 ] and was based on nine cases.
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Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. In all there were 27 participants. Inclusion criteria for the persons with dementia were: 1 67 years or older 2 diagnosed with dementia 3 Clinical Dementia Rating score 2, i. Age 67 was chosen because this is the common retirement age in Norway.
Twenty-six older persons were asked to participate in the study and the main reasons for not being included were: no diagnosis, did not wish to participate or their family carer thought it would be too stressful. Diversity was promoted through purposive sampling.oranlamer.ga
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Nine persons with dementia participated; two were men. Three persons lived independently, two lived with family carers and three had moved to sheltered housing. One person was in a nursing home but strongly wished to move home again and therefore met the inclusion criteria. Their age varied from 82 to 88 years, the mean age was The main family carers and professional caregivers registered in the records of the person with dementia were included in the study.
The group of family carers consisted of three spouses, two siblings, two adult children, a daughter-in-law and a niece.
Three family caregivers were men. The professional caregivers consisted of two registered nurses, six enrolled nurses and a nurse aid, all women Table 1.
A semi-structured interview guide with open-ended questions was used in interviews to enable family carers and professional caregivers to answer more freely [ 53 ]. They were asked to express how they felt about their relationships with the person with dementia, how they influenced decisions about health care and their experiences of collaboration and coordination of services. They were asked to expand on any ethical dilemmas they experienced. The interviews lasted approximately one hour and were audio-recorded and transcribed verbatim. Field notes were written as soon as possible after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre.
Sensitizing concepts from the theoretical framework gave direction to the observations and gave contextual understanding of each case [ 53 ]. Reflections on what had been observed were also registered. Because of the dementia trajectory, all data in each case were collected in the course of 1—2 days. Data were collected from October to January Staff in three municipalities were informed about the study and asked to identify persons meeting the inclusion criteria. Persons with dementia were asked to participate after receiving information which could be reread to compensate for deficits in short-term memory.
They were informed that participation was voluntary, that they could withdraw at any time and their anonymity was assured. Caregivers then asked them if they were willing to participate in the study and written consent was obtained. Even though they might have felt obliged to consent when asked by a caregiver on whom they were dependent, it was better that they were asked by a known and trusted person as this reduced anxiety [ 54 ].
Family carers were asked to consent to the participation of the person with dementia and their own participation.