Foundations and Essentials for the Doctor of Nursing Practice

Original Manuscript

Dignity at stake: Caring for persons with impaired autonomy

Åsa Rejnö University West, Sweden Skaraborg Hospital Skövde, Sweden

Britt-Marie Ternestedt, Lennart Nordenfelt and Gunilla Silfverberg Ersta Sköndal Bräcke University College, Sweden

Tove E Godskesen Ersta Sköndal Bräcke University College, Sweden Uppsala University, Sweden

Abstract Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point.

Keywords Caring, cognitive impairment, dignity, theoretical analysis, vignettes

Corresponding author: Åsa Rejnö, Department of Health Sciences, University West, 461 86 Trollhättan, Sweden.

Email: asa.rejno@hv.se

Nursing Ethics 2020, Vol. 27(1) 104–115

ª The Author(s) 2019 Article reuse guidelines:

sagepub.com/journals-permissions 10.1177/0969733019845128

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Background

We do not commonly use the word dignity in ordinary language and many healthcare professionals do not

grasp what dignity means. Despite this, dignity and the securing of dignity in healthcare are often mentioned

as important values in guiding documents.

In bioethics, the concept of human dignity has commonly been said to have two different and comple-

mentary roles.1 First, respecting human dignity is an overarching and central principle within the law and in

most regulations. Human dignity is said to have intrinsic value and to apply equally to all human beings.

Claims for human dignity to be recognised have been made in national (in our case, Swedish) legislation

relating to health,2,3 as well as in international governance documents.4,5 The International Council of

Nursing (ICN) states that recognising human dignity is fundamental to nursing: ‘Inherent in nursing is

respect for human rights, including cultural rights, the right to life and choice, to dignity and to be treated

with respect’.4 Human dignity is also recognised as an essential principle and value in the Declaration of

Human Rights.6 It is commonly understood that the protection of human dignity by focusing on respect for

identity, autonomy and integrity is of utmost importance and is an essential task for society.

Second, the concept of human dignity is used in daily clinical healthcare – as part of the standards of

patient care.1 The concept of dignity in the context of care is, however, not very clear7 and the word is used

in various ways in the literature. To ensure good quality care that is given with respect for human dignity,

healthcare professionals need to have a conceptual understanding of dignity (i.e. know what it is), put this

into a theoretical context (i.e. be able to relate aspects of dignity to other central nursing concepts) and have

empirically based knowledge of how it can be enhanced and respected in practice. Dignity used in the care

context has proven to be a rather complex, multifaceted concept.7 In the specific context of care for persons

with impaired autonomy (e.g. dementia, aphasia or unconsciousness), the preservation of dignity poses

further challenges since the possibility for these persons to influence their own care decreases or ceases

completely. Autonomy is commonly understood to refer to the capacity of a person to choose and act on the

basis of their own preferences regarding their life and their own body.8 This means that the concept of

autonomy includes two aspects, decisional autonomy and autonomy of execution.9 Autonomy can thus be

seen as the interaction between a person’s self-governance and their ability to perform the activities of daily

living.10 Lechowski et al.11 have described how cognitive impairment and age results in loss of autonomy,

and thus loss of ability to perform the activities of daily life.

When a person can no longer communicate their needs and will, the healthcare professionals involved

need to know how to respect their dignity in daily care. Many healthcare professionals have asked for

more knowledge and training about dignity in the care of older persons.12 This is what the present study

aims to address.

Objectives

The aim of this article was to investigate the application of two concepts of dignity, human dignity and

dignity of identity, to the care for persons with impaired autonomy so as to further the practice of respect and

protection from harm in a person-centred care.

Methods

Vignettes, that is short (hypothetical) scenarios, are sometimes used to illustrate and allow exploration of

sensitive topics.13,14 In this study, three vignettes of patients with mildly to severely impaired autonomy

including reduced consciousness, presented as narrative stories,14 were used as a starting point to deepen the

discussion about dignity (Boxes 1–3). The vignettes are typologies, that is, caricature cases with distinct

Rejnö et al. 105

features, constructed to illustrate the points we wish to address.15 The three vignettes include typical

important elements and focal points from several narratives originating from healthcare situations and

have the added advantage of avoiding identification of any particular case.14 They also contain several

perspectives, including those of the patient, a family member and/or healthcare professionals. The

development and the ethical analysis of the vignettes were carried out in several stages: (1) vignette

development; (2) conceptual and normative framework development and (3) re-contextualisation of the

framework to develop a caring practice outline through vignette analysis. All vignettes describe common

difficulties in making autonomous decisions and make manifest possible ethical issues with respect to the

patient’s dignity.

In the first step, data sources for the vignette construction were considered. The first author (ÅR) drew on

a wide range of examples from different sources, mainly from previous experiences working with clinical

stroke and dementia care, as well as data from her thesis project16 and drafted the vignettes. In their

Box 1. Vignette Anna, an 84-year-old woman with newly diagnosed dementia.

In an encounter with a community service representative, Anna and Anna’s daughter discuss Anna’s need for support in daily life

Anna’s story I don’t need any help at home. I can so easily scurry away to the shop, it’s just down the street, and buy what I need. It’s very close so I can shop as often as I like, so it is not heavy to carry home. And I cook; I do not need any help; I’ve done that all my life. I like cooking. I do something simple, like pancakes; it’s no problem. And I clean; I have such a small apartment and I do not make much mess either. It’s only me now so it’s no problem. I clean it so easily, just vacuuming a bit, wiping the floors and a little dusting. Showering I can handle myself too. I shower every morning, I really like that. No, I can say that I don’t need any help.

The daughter’s story

It has been so tough lately. Mum does not sleep as she should but is often up at night; she calls many, many times every day, yes and several times at night, so I rarely sleep a whole night either. There are things she can’t find or something she has to ask about and then she forgets she has called. It doesn’t help to write notes to her either because she doesn’t read them or she throws them away. She does not eat as she should either. The fridge is full of things, mostly milk and eggs since she thinks she’s going to make pancakes, so yes, she goes shopping, but I think she rarely cooks anything. Most things in the fridge are old and I have to throw old food away every time I’m there. I think she mostly eats bread and butter and drinks coffee. She has forgotten the stove a few times so we have put a timer on it, which she can’t really manage. She has lost several kilos of weight so there is probably no routine to her eating. She does not remember to take money when she goes to shop so they have to put it on her account and then they send me the bill. She does not clean either, and I do not think she showers very often either. Her hair always looks messy and she smells like she needs a shower. I have tried to help her but she gets angry with me. It hurts so much to see her like that. She has always been so careful about her home and her clothes, but now it is so messy at home and her clothes are always spotty and dirty. I don’t want her friends to see her like this. She would not have wanted that herself either. I simply cannot stand it anymore; I need to get help for my mother.

Concluding comments The vignette illustrates an ethical challenge for the decision about starting community service when there are two incompatible stories about the same situation from different perspectives. Anna claims that she is doing well on her own and that she can decide for herself about her own life but, according to her daughter’s story, she is faring badly. The daughter considers that Anna’s self-determination can no longer be allowed to lead since Anna at times does not manage to take care of her personal hygiene, and neglects her nutrition and home, which adversely affects her physical person. There is a clear conflict between Anna’s and her daughter’s views of what Anna can manage by herself and what support she needs. The boundary between what Anna herself can determine and what poses a risk of real physical damage seems to be close.

106 Nursing Ethics 27(1)

construction they are thus composite vignettes, that is, contrived and based on many authentic cases,

protecting confidentiality and anonymity, and avoiding identification of any particular cases.14 In the

second step, the format of the vignettes was considered. Starting from persons with relative or absolute

impairments in decisional capacity, we decided on three short narrative stories describing mildly to severely

impaired autonomy. In the third step, three of the authors (ÅR, BMT and TEG), experienced registered

nurses and researchers with competence in end-of-life care and ethics, reflected over whether the vignettes

created had captured reality and authenticity. The vignettes were discussed, revised and refined accord-

ingly. In the fourth step, an evaluation on how balance could be struck between complexity versus simpli-

city, ambiguity versus clarity, and colloquial versus formal language was performed. The vignettes should

be easy to relate to and understandable for all healthcare professionals working with persons with impaired

atuonomy and for persons with interest in ethical issues. The vignettes therefore do not present complex

medical or technical information, nor do they make use of medical terms or language that is unfamiliar to

people outside healthcare, which is in line with recommendations given by Bradbury-Jones et al.14

Box 2. Vignette James, a 78-year-old man who has suffered a stroke with right hemiparesis and aphasia.

Thoughts about James being discharged from hospital in the aftermath of stroke, from the perspective of James, his wife, the speech therapist and the nurse

James’ story Yes, ooouuuch . . . damn . . . home . . . no . . . yes, yeaaah . . . The wife’s story My husband and I met when we went to high school and got married as soon as he got his first

job. Of course, I see that he finds it hard not to be able to say what he wants and not to be able to read. He has always read so much. I try to be here with him every day since I see that it makes him feel better. I think I usually understand him; I see that he sometimes gets frustrated and angry, but it may be due to other things, such as the situation itself. He has always been so active and managed entirely on his own and gone for long walks, but it is not possible now that he has this weakness on his right side. His balance is also a bit affected and he needs a walker when walking. So he cannot take any longer walks. I think we’ll be fine at home, but it’s the speech that is the hard thing.

The speech therapist’s story

James has a grave aphasia; he almost lacks speech. He has some preserved understanding of speech and can sometimes answer yes and no to questions but it is not always the right word that comes. When he gets it wrong, he clearly shows it. He thus has a limited ability to express his needs. He also cannot read and has no use of image interpreters since he does not understand images.

The nurse’s story James is usually happy even though he has difficulties expressing himself and understanding. He needs some help with his hygiene but can handle a lot himself. He gets very frustrated when we do not understand him. He is so happy when his wife comes because she understands him better than we do, and she comes almost every day. She is a wonderful support for him and seems to understand just what he wants, but maybe that is how it gets when you’ve lived almost your whole life together. They have been married for 47 years and have three children. I think they can do well at home, maybe with a little support, if his wife can manage it.

Concluding comments The vignette illustrates ethical problems related to dignity and autonomy in a person with limited ability to express himself. James is frustrated by his situation and has great difficulty expressing his own will. His autonomy is clearly limited. The stories from James’ wife and the healthcare professionals do not oppose each other but partly overlap and complement the total picture. There is a risk that James’ dignity is being violated as his self-determination is difficult to express. His spouse believes that James can go home, with her support, without any help from outside. Can we know that this is in accordance with James’ will and, if so, that it will promote his dignity of identity? The situation creates a reliance on his spouse for James, which may interfere with his and his wife’s dignity of identity. It also creates a mutual dependency that could put their relationship to the test. The question is, how can healthcare professionals relate to the situation and take into consideration both James’ and his wife’s situations.

Rejnö et al. 107

Next, the concepts of dignity (human dignity and dignity of identity) in relation to the vignettes and

conceptual and normative issues were addressed and reflected upon in two seminars. The seminars were

part of a series within the ethic-network of the Ersta Sköndal Bräcke University College. Researchers and

lecturers (mainly registered nurses), with competences in theoretical ethics and empirical experience of this

kind of caring situations, participated. Here, GS and LN contributed with specialised ethical and philoso-

phical competence, respectively. Finally, the specific circumstances and settings of the vignettes were

discussed, and their central features were re-contextualised and evaluated from a caring perspective

(ÅR, BMT, TEG). The focus was on the contextual features of the vignettes and addressing how dignity

can be safeguarded in a framework of caring for patients with mildly to severely impaired autonomy.

Conceptual framework of dignity

There are many ways of conceptualising dignity. In this study, we used the concepts developed by the

philosopher Nordenfelt17,18 to explore dignity in the care of persons with impaired autonomy. Nordenfelt

described four notions of dignity: human dignity (Menschenwürde), dignity of merit, dignity of moral

stature and dignity of identity.17,18 However, this study focuses on human dignity and dignity of identity

since they are particularly relevant for care and caring.

Human dignity describes the dignity we have as human beings specifically because we are humans.17,18

This is a value that all humans have to the same degree. This notion of dignity can neither be lost nor taken

away but is preserved throughout life. This implies that all humans should be treated with equal respect

independently of sex, age, ethnicity, sexuality and function. This notion of dignity is used in the Universal

Declaration of Humans Rights.6

Dignity of identity is associated with our understanding of ourselves as integrated and autonomous

persons. Dignity of identity can vary over time and can thus be both promoted and reduced. Nordenfelt17,18

considered the central concepts of this notion of identity to be integrity, physical and cultural identity,

and autonomy. Respect for autonomy has been described as an ethical principle that deals with the right to

Box 3. Vignette David, a 47-year-old man who is unconscious and hanging between life and death after a car accident.

Giving care to an unconscious man at the intensive care unit following a car accident; the nurse’s thoughts

David’s story David is unconscious and cannot give any narrative about himself The nurse’s

story The patient was in his car and was hit by a truck at half past 7. We think he was on his way to work

because he had work clothes on; we have a probable identity from a driver’s licence but it has not been confirmed. He was unconscious when the ambulance arrived at the site of the accident. During the drive to the hospital he deteriorated and he now needs breathing support with a respirator and is sedated. We do not know much about him or his previous health conditions. We also don’t know if he has any relatives. We have tried to get hold of his colleagues to get his identity confirmed and to get to know more about him, but we do not know more than the company’s name. Meanwhile, we are providing good care based on his current medical condition and what we think is best for him. But we do not know how he would like to be treated.

Concluding comments

The vignette illustrates the difficulties that unconsciousness brings to the care situation with respect to human dignity and dignity of identity. This is a situation where autonomy has been removed. Since David cannot express himself and there are no relatives (available), his own needs and wishes are not available as a starting point for his care. Instead, the starting point for care depends on the staff’s perceptions of what good, dignified care means. This results in a risk that the care becomes instrumental when the healthcare professionals get no response from David on the care given. Here good care of his body becomes central as a way of showing respect to his human dignity.

108 Nursing Ethics 27(1)

self-determination, but it is also related to notions of human freedom, capacity and understanding.8 These

are all central concepts when describing our identities. Our identities are under constant change and

construction18,19 and can be limited, harmed or threatened by the conscious or unconscious actions of other

people. These actions can give rise to feelings of humiliation and loss of self-respect. Dignity of identity can

also be reduced by external factors such as ageing, injuries, or illnesses and diseases like stroke; these

factors can influence our self-respect and alter our view of ourselves.20 It is also possible to violate the

dignity of identity in persons who may not be aware that it is happening or in those who cannot express their

feelings. Nordenfelt17,18 also proposed that dignity of identity is the only form of dignity that is possible to

be violated after a person’s death.

Dignity in the care of older persons and persons with impaired autonomy

Nordenfelt’s conceptual framework of dignity has been applied in clinical research on what dignity of

identity means to people in different situations,21 and on how dignity for others can be preserved and

promoted.22 From the perspective of healthcare professionals, it was seen to be important to protect the

identity of older patients, to see them as unique persons and to acknowledge their life stories, in order to

preserve their dignity.21,22 Studies involving terminally ill and older people have shown that there is an

important link between self-image and identity; these are key factors in the promotion of dignity.21,23,24 The

studies also highlighted dependency on healthcare professionals and no longer being able to control one’s

bodily functions and movements as significant threats to dignity.

Dignity in persons with cognitive impairment, and thus impaired autonomy, as a result of dementia has

been the subject of some research.25–28 It has been shown that cognitive impairment, through impaired

autonomy, poses a significant threat to personal identity (described as a type of dignity that is subjectively

experienced by an individual and relates to a sense of worthiness).25 The support of others and being

confirmed as a human being are important factors in maintaining and upholding the dignity of identity.25,26

The way acute care is organised, lack of resources in nursing homes and task-oriented care were also seen as

threats to dignity of identity especially in cognitively impaired older patients.26,27 Preserving dignity of

identity and respecting human dignity have been described by healthcare professionals in nursing homes as

a balancing act between preserving autonomy and maintaining other aspects of dignity, where overriding

autonomy in persons with dementia is sometimes necessary.28

Studies of patients with aphasia (as a result of stroke) have identified dignity and respect as core

constituents of care.29,30 To be treated as the same person as you were before the stroke, as an autonomous

person, has been shown to influence a person’s self-respect. The importance of a functioning relationship

based on trust, where the healthcare professional treats the afflicted patient as an equal, has been described

as a way of respecting the patient’s human dignity and uniqueness.31 This can be achieved by the healthcare

professionals being committed and attentive to the patients’ needs and showing themselves to be vulnerable.

Patients with reduced consciousness are vulnerable and completely dependent on the care and concerns

of others. Unconsciousness as a result of acute stroke is a complicating factor in healthcare, and the next of

kin play an essential role in conveying a picture of the patient to the carers.32,33 Hospice nurses have

described how they try to maintain the dignity of unconscious patients by talking to them as if they were

conscious.34 Similarly, in anaesthesia (sedation), described as unconsciousness induced by care, the person

being sedated has to trust the healthcare professional to guard their dignity.35

Dignity (in various senses) and autonomy are pointed out as central concepts in person-centred care.36–39

Ternestedt et al.36 stress how patients’ narratives about themselves can be viewed as expressions of their

self-image and can be taken as the starting point of person-centred care. The experience of self is a part of

self, but not the entire self. However, self-image can also affect the self.18 The patient’s need for care must

be met as long as the care is in line with evidence, experienced knowledge and ethical principles, or does not

Rejnö et al. 109

exceed available resources. To take the patient’s needs and interpretations of the situation as starting point

should not mean that the healthcare professionals should ignore their professional knowledge but that they

should share their knowledge, resulting in care created by carers and patients together. From a life world

perspective, the encounter between patients and nurses should be based on dialogue and an understanding –

an agreement-oriented approach. This comes close to the description of person-centred care that Kitwood40

as well as Ekman et al.41 advocate. The latter indicate two essential prerequisites for person-centred care:

partnership with the patient and compliance/conformation to the patient’s narrative.

Vignettes

The three vignettes illustrate situations comprising issues concerning dignity in persons with impaired

autonomy. Vignette Anna is about an older woman with incipient dementia, Vignette James is about an

older man with aphasia following a stroke and Vignette David is about an unconscious middle-aged man

(Boxes 1–3).

Ethical reflections on the vignettes

We discuss the ethical difficulties and challenges in the vignettes, examining how the two concepts of

dignity (human dignity and dignity of identity) can be used to illustrate how to care for and promote the

dignity of persons with impaired autonomy such as in persons with dementia, aphasia or unconsciousness.

Reflections on human dignity

The fact that human dignity is considered as something associated with humans simply by virtue of their

humanity, a permanent and non-revocable feature,18 implies that it is not the relatives, the healthcare

professional or anyone else who confers value to Anna, James or David. All three possess permanent,

lifelong, equal worth regardless of their disease status, care needs or level of consciousness.42 Nevertheless,

human dignity can be disrespected in action or speech, and rights can be violated. This is illustrated in the

vignette about Anna, in which her daughter expressed the wish that Anna’s testimony be disregarded in the

decision-making about possible home support and assistance (possibly including assistive technology). In

the vignette with James, his difficulty to verbally express his thoughts because of aphasia results in the risk

that people who meet him are unable to perceive a person with a life plan of his own. Several Swedish laws

and guidelines state that healthcare should be carried out with respect for both the equal worth and dignity of

all humans, and patient integrity and autonomy.2,3 However, not much is said about how this should be

accomplished with regard to patients with impaired autonomy. For David, there is a risk that his dignity will

be disrespected if the healthcare professional loses perspective of David’s individuality, as he is uncon-

scious and unable to express his wishes. The risk is even higher in situations like David’s since the next of

kin is absent or might not exist. In such situations, a great deal of responsibility for safeguarding human

dignity falls upon the healthcare professional, as David can neither accept nor oppose the care given.43 The

protection of human dignity falls within the scope of the do-no-harm principle which thus ensures a

minimum level of ethically grounded care. This might, for example, include tending to the body by

administering mouth care and avoiding pressure ulcers. However, to aim higher and try to do good could

further imply that such efforts be carried out caringly with, for example, compassion and a soft touch.

Reflections on dignity of identity

In all three vignettes, there is a risk that the patient’s dignity of identity will be compromised by the disease/

injury or the actions of others. Importantly, our dignity of identity is not determined just by our own ability

110 Nursing Ethics 27(1)

to communicate and maintain our identity.18 In the vignette about Anna, she can no longer continue what

was previously important to her as part of her identity but, even so, she still has a dignity of identity to

protect. However, her dementia results in an inability to uphold a well-kept appearance and home, which

were previously important to her, and thus risks creating a violation of her dignity of identity. The daugh-

ter’s wish for Anna to receive assistance and home services can from this point of view be understood as an

attempt to strengthen Anna’s sense of the dignity of identity and to not harm and maybe assistive technology

such as a stove guard would have a place here. Studies have shown that allowing persons with dementia to

stay in their own homes promotes their dignity of identity25 and Anna states that she likes living by herself in

her own home. This is not clear-cut, however. On one hand, this might strengthen her dignity of identity, not

least her autonomy, but on the other hand, assistance and home services could be seen as disrespectful of her

desire to continue on her own. Anna has a reduced capacity for decision-making, has a compromised ability

to understand the ramifications of her actions and choices, and is seemingly only partly able to implement

decisions.10 If she is allowed to make all her own decisions but is not given the support needed to implement

them, she could easily fare poorly.25 Even so, her views should always be taken into consideration when

others are making decisions for her well-being. There is thus an apparent conflict between the ethical

principles of maintaining autonomy and doing good and no harm.8 Too much respect for her (decisional)

autonomy could harm both her and others, for example, allowing her to self-cater her cooking, without

assistive technology (stove guard) could lead to a fire in the apartment that could harm both her and her

neighbours. Support from community care services could be a reasonable way to simultaneously promote

Anna’s dignity and care for her. Research has shown that the dignity of people with dementia can be

promoted and maintained by providing support from other people, being able to stay at home and creating

a regular daily structure (e.g. through visits from homecare).25

For David, every care decision needs to be taken by someone who represents his interests. It is somewhat

unclear how dignity of identity can be preserved for David, when no one has personal knowledge of him.

It is possible to (mistakenly) imagine that David, being unconscious, has no known identity and thus lacks

the kind of dignity discussed here. However, as discussed above, it has been maintained that all persons have

an identity regardless of whether they can express it.18 In these kinds of situations, patients are entirely

dependent on the healthcare professional’s ability to maintain their dignity of identity.43 Because of his

illness, impaired autonomy and need for care, David is in a very vulnerable situation. To handle situations

like this, healthcare professionals can find support from basic ethical values, ethical guidelines such as those

provided by the ICN4 and from learning not to prejudge what the dignity of identity might be for David. It is

essential to protect the identity of every patient, viewing each as a unique person whose life stories are

acknowledged, in order to preserve their dignity.21,22,44 It is important to avoid humiliation and to do no

harm, according to Nordenfelt. For David, this could mean not exposing him unnecessarily when tending to

him, and protecting his privacy and integrity as far as possible.45 Giving good basic care, including being

attentive to signs of discomfort, pain or other disturbing symptoms, is thus a critical way of doing good

(beneficence) in such a situation.

In the vignette with James, it can be seen that his identity of dignity is also at risk of being violated as a

consequence of the hemiparesis from the stroke he has suffered. To live with an altered body in the

aftermath of a stroke, where control over the body and its functions have been changed or lost, affects a

person’s self-image in a negative direction.42 This has been shown from the perspective of older persons in

nursing homes where loss of bodily functions was described as a threat to the dignity of identity,21 and has

also been demonstrated in a study of terminally ill patients.23 To act in ways that strengthen James’ self-

image and self-respect is one key to upholding and preserving his dignity of identity. To live with aphasia, as

James does, in addition to having suffered a hemiparesis, becomes a double threat to his dignity of identity,

as he experiences strong difficulties in expressing himself and his own will. Even though James may not be

able to express himself in ways that can be easily understood, healthcare professionals should try hard to

Rejnö et al. 111

understand him and find clues in his communication. James’ wife is a valuable resource, as she has a good

understanding of the values that have been important to him during his life and can probably read his body

language well after their long life together. However, although deliverance of care to a loved one by the next

of kin is recognised to be of great importance,46 the inclusion of someone close to the person in this way can

be complicated. Needing help from someone close to you to perform activities you could previously achieve

independently could threaten your identity as an independent person.42 That James’ wife wants to help him

with his hygiene, maybe to live a life as similar to their previous life as possible, without support from any

third party, may be grounded in her will to do good and not to be dependent on anyone else. This could be

positive as long as it is what they both want, but it is conceivable that James would like to get help from

someone other than his wife for his intimate hygiene.

The same reasoning applies to the vignette about Anna. Anna’s daughter is very familiar with what has

been important to Anna through her life. Support from those knowing the person well is of great value for

preserving the dignity of identity, as long as it is done respectfully.25 However, it is necessary to take the

needs of the next of kin into account too. Because of the mutual dependency of the patients (Anna and

James) and their next of kin (Anna’s daughter and James’ wife), the potential needs of the next of kin must

be attended to as well as those of the patients.

Concluding reflections

In this article, we have examined how two concepts of dignity, human dignity and dignity of identity, can

contribute to a richer theoretical understanding of how to care for persons with impaired autonomy and

further a practice where they can be respected and protected from harm.

Although person-centred care is viewed as the ideal in care,41 it does not always provide answers on how

to relate to and interact with persons who are unable to share their stories. It is not clear how dignity can be

maintained and respected and who should be in charge of meeting the person’s individual and specific

needs. It is equally unclear what dignity remains attached to the person when the person cannot commu-

nicate it and how the unconscious patient’s dignity of identity can be promoted and human dignity can be

respected. In situations like this, the next of kin often come to act as proxies. However, although the next of

kin usually have good intentions, can healthcare professionals trust that they can convey what the person

would want and not their own wishes? What if the person’s mind has changed since imparting their wishes

or giving directives? Many healthcare professionals, according to research, have doubts about these

things.32 But will a departure from the healthcare professional’s perspective bring one closer to how a

person’s dignity should be respected?

From the analysis of the three vignettes, it is evident that ethical principles are at stake in the daily care of

persons with impaired autonomy. This investigation has provided some new insights into how the meaning

of dignity can be demonstrated through concrete cases14 as provided by the vignettes. Concretisation is a

strength when using vignettes as a method. However, one limitation with the method is that only a finite

number of situations are enlightened through the vignettes, even though they are composite vignettes. Even

if the vignettes in some ways are hypothetical, they comprise contextual information and are concrete

enough to allow readers to understand and reflect on them. The composite construction of the vignettes was

crucial since it ensured anonymity. As the first author (ÅR) has worked with stroke care and dementia in a

limited area of Sweden, anonymity was important and could be guaranteed through this.47

It is the moral duty of healthcare professionals to do no harm and it is particularly important that they

instead help and benefit patients in need. This applies not least to the care of vulnerable persons with

impaired autonomy or cognitive losses where dignity might be at risk of being disrespected and violated.

We have seen that the dignity and rights of patients with impaired autonomy call upon healthcare profes-

sionals to treat them respectfully and to act in their best interests without resorting to paternalism. Essential

112 Nursing Ethics 27(1)

for this is a respectful relationship with the persons and their family, through seeking to comprehend their

experiences. This type of authentic search for the identity of the person, to understand the needs and

preferences expressed, can be seen as a kind of jigsaw where everyone contributes their individual but

complementary pieces to accomplish the goal of person-centred care.

In summary, while we are well aware that Nordenfelt’s way of conceptualising dignity is far from the

only relevant interpretation in the context of healthcare,24,48,49 we nonetheless consider Nordenfelt’s

concepts to be particularly useful for those caring for persons with impaired autonomy. This analysis

indicates that the application of these two concepts, human dignity and dignity of identity, could be

useful as a theoretical guide for healthcare professionals in developing a theoretical understanding and

practical skills for ethically grounded, person-centred care – care where the patient’s needs and prefer-

ences are the starting point. Cultural aspects could also influence the view and expressions of dignity50

and these need to be taken into account. Using these concepts will contribute to a richer theoretical

understanding of how to care for persons with impaired autonomy and will further a practice where they

can be respected and protected from harm. Problems do arise when patients, for various reasons, are no

longer able to communicate their needs and wishes. To try to understand the person in need, taking the

time required, can result in care that is better suited for each individual. Making this a reality, however,

remains a challenge for the future.

Acknowledgements

We would like to thank the participants at the two seminars for valuable discussions contributing to the

development of the manuscript.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or

publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or

publication of this article: This study was supported by the Skaraborg Institute for Research and Develop-

ment (grant number 06-1045), the foundation for Gösta Svensson’s memory, and Agneta Prytz Folkes and

Gösta Folkes Foundation.

ORCID iD

Åsa Rejnö https://orcid.org/0000-0002-6454-9575

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