Concepts of health in long-term home care: An empirical-ethical exploration

Health as an attitude

According to most of the care recipients and informal caregivers, health is a matter of attitude. It is constituted by an optimistic attitude, not only towards life in general but also towards disease and impairment. As such, health is closely linked with satisfaction. They stress that feeling healthy is independent of suffering from multiple chronic diseases because he or she does not complain but, instead, accepts the disease to make the best out of his or her situation to live a good life: ‘Should I stand up now and say, oh God, now I am ill, yes, then I would soon be ill. Then I would sit there and have depression’ (CR2).

One family caregiver describes,

‘What doesn’t kill me makes me stronger. That’s why when I sometimes wake up in the morning and think, ah, nothing works today, I deliberately ignore it. And that’s just a nice feeling. And then in the evening, my stomach hurts or maybe it does not hurt at all, yes. If you’re satisfied somehow and, yes, you still feel really good and have done something nice all day long’. (IC4)

Health as a feeling

Non-professionals regard themselves as healthy when they are feeling healthy: therefore, ‘If you are not feeling ill, then you are healthy’ (CR2). Health does not refer to a certain condition that can be diagnosed with biomedical parameters but, instead, to an individual’s experience of health, for example, through the ‘absence of pathological symptoms’ (IC2).

Health as normal functioning

Health in this way is perceived as the presence of ‘performance capability’ (CR6). It is to function ‘normally’ regarding physical, mental and social (role) aspects. One is healthy if he or she ‘is not handicapped by one’s own body’ (IC4).

Health as destiny

With one exception, all care recipients perceive health as an unpredictable destiny beyond their control. Religious beliefs also played a role in the perception of and attitude towards health. Thus, health is a God-given task because ‘I firmly believe that everything that happens is God’s will […]. Everything has its time. If God wants me to be healthy, I stay healthy, if not, then not, then I cannot change it’ (IC2).

Health as well-being

Seven professionals see health as a state where their physical and mental condition is in harmony with their social environment: ‘Health is for me, well-being’ (PC3). Health is evident through ‘The general condition, no infections or anything else. So that you feel good. Work, social/interpersonal relationships, everything in harmony’ (PC7). The family and ‘that you have a harmonious family life at home’ (PC8) are of paramount importance for this equilibrium. Some interviewees even add happiness to this state of well-being and conclude that ‘If you feel happy, then you are healthy’ (PC10).

Health as implicitness

Professionals describe that they do not think a lot about health as they are usually in good health. As they ‘feel healthy each and every day’ (PC5), they consider health a natural matter which is simply there: ‘Well, I’m actually less concerned about my own health. I’m feeling good’ (PC6). They express a sense of serenity and confidence in their own health.

Health as the absence of disease

The professionals link health primarily to the fact that they do not suffer currently from any diagnosed disease: ‘I am healthy because I do not have any disease’ (PC3). The interviewees also outline conditions under which they describe themselves as neither healthy nor ill. This includes states of dissatisfaction and discomfort, and feelings of stress and overload accompanied by the presence of symptoms such as tiredness, headache, back pain and poor concentration. In these cases, the diagnosis of a physician clarifies their state of being healthy or not.

Health as potential

All interviewees highlight that they understand health as a potential. It is a capability that enables them to do the things they want to do. Thus, health is ‘If you can participate in everything. If you don’t need to relinquish anything’ (CR8). Health is not predominantly the absence of disease but, instead, a condition that is good enough to meet the demands of daily life. With such health, they can ‘Live just a normal life like others’ (IC3). It is also a resource for coping with challenges and adapting to changing circumstances. Health allows them to get through the day and meet daily demands. It, furthermore, enables them to live their own lives independently: ‘Health is for me […] when I can do everything independently, that is already health’ (PC3). As self-reliance is an important goal in life for the interviewees, they wish ‘That I’ll stay fit to death, that I won’t need any care. That I can do everything to the end alone’ (PC3). Health is the prerequisite for employment and well-being and, as such, has an instrumental function (self-fulfilment) in their lives.

Health as personal responsibility

According to the interviewees, health is a goal that can be achieved through one’s own actions. Professionals and most of the informal caregivers perceive health as a result of a (health-)conscious lifestyle. They are convinced that health lies in the responsibility of the individuals. They emphasise health promotion, for example, through nutrition and sports, no alcohol and no smoking. Some of them limited the extent to which control over health can be gained, while others did not. One CR, who has been practicing as a physician her whole life, even describes it as her duty to encourage her social environment to live a healthy and proper lifestyle. The notion of health as a destiny is, thus, replaced by the idea of power over health preservation. They therefore want to do things better than they see it in their environment in order to avoid, for example, work-related burnout or diseases caused by alcohol consumption.

Health as the highest good

Health is described as ‘the highest good’ (CR6), as ‘everything’ (CR13, CR9), ‘the most important thing’ (PP1) and something ‘that stands first and foremost’ (IC10). What makes health the highest good is that ‘we cannot buy it and because without health nothing works’ (IC2) and ‘money can’t make up for health’ (CR6). It is simply ‘irreplaceable’ (IC10). Moreover, the professionals described impressively how nursing practice transformed the way in which they look not only at health but also at life in general. Due to their professional practice, they appreciate their own and others’ health to an even greater extent:

‘You just learn to appreciate your life more […] that you should simply be satisfied with what you have and really enjoy each and every day, because you often see that it can be over from one day to the next’. (PC9)

Non-professionals’ responsibility for their health

There is an extensive discussion about the moral obligations to maintain one’s own health and the impact this could or should have on healthcare policy ^35,36 and individuals’ decisions regarding diagnostics and therapy. ³⁷ Only a few documents, however, address the – quantitatively significant – field of LTHC. Nevertheless, individuals in need of LTHC also have certain moral duties to fulfil in their role as care recipients. Some ethicists discuss such duties particularly concerning the boundaries of care. This could mean refusing care if they notice that the relatives providing care themselves are harmed as a result of the overloading burden due to taking care. ³⁸ The European Charter of rights and responsibilities of older people in need of long-term care and assistance – as one relevant ethical guideline – declares the obligations to think about and plan one’s future and take responsibility for the impact of one’s acts and omissions on the caregivers (p. 24f). ³⁹ It does not, however, refer to a responsibility concerning the care recipients’ engagement to actively participate in their own health preservation. The Charter, instead, encourages them to ‘Respect the rights and needs of other people living and working within your environment’ (p. 24). ³⁹ This can be understood as an appeal to care recipients to contribute to the preservation of the others’ health. However, there is no direct reference to a responsibility for maintaining one’s own health in order to support caregivers’ work.

Against the background of our empirical results, the question arises whether there can or should be a responsibility to contribute to one’s own health, as understood by the non-professionals, and what such a responsibility would mean concretely for healthcare practice. In the light of our findings on the non-professionals’ concepts of health as destiny, for example, a responsibility for health could be problematic, since one can only be held morally responsible for those things over which one has control. ⁴⁰ To interpret health as fate and, thus, the health-related status as being susceptible does not allow such a responsibility for at least two reasons: from a normative standpoint, we must respect subjective concepts to prevent epistemic injustice (‘forms of unfair treatment that relate to issues of knowledge, understanding, and participation in communicative practices’). ⁴¹ From a pragmatic perspective, it can be concluded that if people think they cannot influence their health, they will do nothing in that direction, which is a serious problem for secondary and tertiary prevention.

On the one hand, emphasising responsibility and power over one’s own health can foster empowerment and support health behaviour. On the other hand, it might provoke feelings of stigma and induce anger and frustration, as not all diseases can be explained by health-related behaviour. Considering the situation in LTHC, it does not seem very fruitful to blame the care recipients for past behaviour that might have contributed to the development of their restrictions. ⁴² This would also be contrary to nurses’ professional code of ethics. Instead, the concepts of ‘prudential responsibility’ or ‘prospective responsibility’ might be helpful. ‘Prudential responsibility’ (p. 4) ⁴³ acknowledges the efforts made to change behaviour in favour of health regardless of its success and, thus, should always be facilitated and appreciated. ‘Prospective responsibility’, which means ‘enabling individuals to take responsibility for their behaviour under controlled conditions’ (p. 60), ⁴⁴ stresses that those affected should get ‘the golden opportunity’ (p. 60), ⁴⁴ which is the fair chance to act responsibly. If they decide not to act in a manner that complies with this, they might be held responsible for the (negative) results.

Professionals’ responsibility to maintain their own health

The ethical obligations of professionals can typically be found in professional codes of ethics. These codes often particularly address the duty to maintain one’s own health as a professional and ethical obligation. ⁴⁵ The Code of Ethics for Nurses by the International Council of Nurses (ICN) represents the internationally accepted consensus concerning moral guidance for nurses. It formulates four responsibilities which must be met by any nurse: ‘to promote health, to prevent illness, to restore health and to alleviate suffering’. ⁴⁶ The German Nursing Council (umbrella organisation of all German nursing associations) refers to the ICN Code of Ethics. Unlike other countries (e.g. Poland, Ireland), ⁴⁷ German nurses do not have a national code of ethics.

The ICN Code prompts nurses to take care of their own health in order to remain able to work: ‘The nurse maintains a standard of personal health such that the ability to provide care is not compromised’ (p. 3). ⁴⁶ The obligation to ensure one’s own health is, thus, placed on nurses regarding their professional role. The concern over their health, therefore, seems to have an instrumental rather than an intrinsic value, as it is linked directly to the ability to provide care.

Concerning the empirical results of our study, it seems especially interesting that professionals perceive health as a key value in life which is gaining even more importance throughout life due to their professional practice. In addition, they see health as a result of a (health-)conscious lifestyle. Thus, health for them is more than just an instrumental good which they must preserve for their professional practice. The tremendous importance of health for personal and professional life probably results in the nurses’ motivation to maintain their own health beyond the nursing context. Against this backdrop, the ICN Code reflects a more restricted representation of professionals’ health that does not completely fit with the nurses’ concepts. Furthermore, it also seems to reduce nurses to professional agents. It could be an objection that the code only refers to the professional context and, thus, does not address carers as private persons. However, it is difficult to make a distinction between professional and private life regarding one’s own health, since it plays a key role both in enabling the one and in realising the other. Such an instrumentalisation that treats nurses as agents serving certain purposes runs the danger of undermining their rights as autonomous individuals. The recognition of professionals’ right to personal health should also be reflected in their code of ethics. Other national codes set a good example here and (recently again) emphasise the nurses’ ‘duties to self’. ⁴⁸

Non-professionals’ right to health

The moral rights of non-professionals in LTHC are documented in charters which, for example, address the right to the best possible health and high-quality healthcare services. The European Network of National Human Rights Institutions highlights that ‘The Right to the Highest Attainable Standard of Health’ ⁵⁰ for care recipients should be protected and promoted. The European Charter of rights and responsibilities of older people in need of long-term care and assistance also claims the right to ‘respect for and protection of your physical well-being’ (p. 6). ³⁹ There are no guidelines in Germany that address the rights of informal carers; instead, there are numerous petitions directed towards politicians and society in which they are struggling to make their rights heard.

The non-professionals represented in our empirical sample hold a very comprehensive concept of health that prioritises social participation. As a result, for them, the right to health includes social inclusion above all. Consequently, health promotion must consider the specific conditions in LTHC – particularly older people’s needs for mobility and social participation. While awareness of health promotion in institutions is increasing, the home setting is still primarily concerned with the compensation of impairments leading to ‘disuse of existing skills, and loss of function and autonomy’ (p. 780). ⁵¹ Nevertheless, everyday decisions about ‘necessary’ and ‘additional’ aids are made in LTHC that are based on (implicit) presuppositions about what is beneficial for each individual’s health. The knowledge about the value of social inclusion for health provides hints for actions: the improvement of participation opportunities can, in turn, contribute to an increased subjective feeling of health. However, social participation – in our and other studies – is proven to be a remarkably underserved area, with loneliness being a serious problem.

Professionals’ right to health

Nurses’ subjective concepts of health are usually considered regarding the extent to which their ideas influence their professional actions in relation to the patient. There has been little ethical discussion so far regarding professionals’ right to health in LTHC. As described above, the ICN Code of Ethics does not mention a personal right to health for nurses beyond their professional role. In view of the nurses’ concepts emerging from our interviews (e.g. health as well-being), such a right to personal health which exceeds the boundaries of professional work could be formulated as an individual support to flourish. This would mean that a right to health could entail supporting nurses’ self-fulfilment, for example, with interventions to balance work and private life. Workplace health promotion should, therefore, represent an approach that can be understood as an instrument to realise the professionals’ right to health as an individual. Regarding ethical codes, this would mean including categorically that nurses have the right to work under conditions that do not cause them permanent harm.