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- Ethical challenges related to elder care. High level decision-makers' experiences

Several ethical dilemmas and ethical challenges confronted the HDMs associated with elder care. No differences could be seen between the politicians and the civil servants or between the municipality and county council levels, with the method used, regarding the phenomenon of ethical dilemma or the meaning of their experiences of being in ethically difficult situations.

Ethical dilemmas

The themes and sub-themes developed are presented in Table 1. Quotations that illuminate the themes and sub-themes are included in the text.

Lack of good care

Vulnerable patients in inappropriate care settings

The HDMs reflected on how the governments good intentions which are aimed at helping older adults remain in their private residences as long as possible have led to a lack of care and ethical dilemmas. They felt many of the older adults being cared for at home have illnesses that require extensive and at times advanced care that can be difficult to provide for there. According to them, ethical dilemmas have been accentuated with last decade's economic reductions and the decreased number of beds in sheltered housing facilities. An ethical dilemma that was mentioned was the lack of available residences causing patients with dementia to be placed in inappropriate settings. "It is difficult when persons with dementia disease live in mixed care settings with others that don't have it. It is difficult for everyone, but especially for those with dementia since they are so vulnerable".

Poor care and disrespectful interactions

The HDMs told of the ethical dilemmas associated with the strained conditions in elder care. They said that caregivers working in the homes worked in a hurried task oriented manner that did not address the individual patient's needs. According to them, the caregivers have been reported as being in such a hurry that they put meals in the refrigirator without noticing there were several still in there uneaten. Receiving information from mass media or upset relatives of insufficinet care due to poor and sometimes disrespectful interactions on the part of the caregivers, was also highlighted. This was distrubing since the HDMs expected health care professionals to know how to interact with patients.

Weaknesses in medical support

Ethical dilemmas related to the lack of good medical care was said to occur when the ill patients were poorly assessed or received poor medical service due to a continuous shortage of physicians. They spoke of the physician shortage in elder care causing unnecessary referrals of older adult patients to the hospitals and felt that daily caregivers often lacked the competence to make referral decisions. The Elder-reform of 1992 with its strong emphasis on the social aspects resulted in a weakening of the medical priorities in elder care, according to the HDMs.

Lack of agreement concerning care

Abandoned ideals vs. budget realities

The HDMs told of the ethical dilemmas related to the demands of maintaining a balanced budget with the ever-increasing needs in elder care. Short-term budget solutions, downsizing of sheltered housing facilities and relatives having to assume more responsibility, were named in association with such dilemmas. The HDMs experienced ethical dilemmas when they felt forced to abandon their vision of ideal elder care to budget realities.

Dissimilar focuses between the caring systems

The HDMs spoke of the ethical dilemmas associated with a care system they felt did not always meet the patients' needs. "We have built up a system that seems to mostly benefit the system itself, the employees or possibly those in power". They also said that the dissimilar focuses regarding elder care between the county council and municipal health care systems contributed to ethical dilemmas. "The needs of the whole person are not looked after, it's about all the levels of elder care focusing on the older adults' possibilities and strengthening them. If we all had the same focus we could get over a few of the hurdles. The established structure can contribute to ethical problems". They thought that a change would not occur until a new generation assumed its place in the profession, in politics, and in the administration.

Justness in the distribution of care and deficient information

Ethical dilemmas associated with the problems within the system that made it difficult to distribute resources in a just manner were described. The HDMs told of the old and chronically ill that should have priority, but as there are others i.e. the younger and less ill that also need access to health care, there were often conflicts and strong voices involved. HDMs found it difficult with incomplete information and a poor reporting system that did not give them a clear description of individual or organisational needs. They spoke of the ethical dilemmas encountered with a system that allows for insufficient input and inexplicit guidelines.

The meaning of being in ethically difficult situations

The themes and sub-themes developed are presented in Table 2. Quotations that illuminate the themes and sub-themes are included in the text.

To be in a high position

Aloneness and Loneliness

HDMs in their high positions with heavy responsibility experienced emotional distress especially in situations associated with budget cuts. "I have assumed the responsibility; that is part of the job. I get paid for it, but it still feels heavy. I often lay sleepless, I get frustrated, I feel alone, and we don't talk with each other that much about our frustrations. But this is a job that has to be done, if not by myself by someone else." They felt that aloneness is something that goes with the job. A lack of support could intensify their feeling of loneliness since they could not depend on anyone else when things got tough. "It's lonely at the top but that's how it is with the ultimate responsibility."


The HDMs stated that it was ethically challenging when they had to make decisions they were not certain of or when the consequences for the older patients were unforeseeable and unclear. Living with uncertainty was something they felt they could not escape from. "If I'm unable, then I have to resign". Receiving reports of insufficient patient care was also challenging since the HDMs felt uncertain they could actually trust the system.

Lack of confirmation

HDMs felt ethically challenged when there was a lack of confirmation and that their health pays a high price for it. They found it difficult when they often heard that things were not working out well and seldom received any positive feedback. The HDMs told of how they could get some confirmation at home but there were limits to that.


In their top positions where difficult decisions had to be made, the HDMs said they felt vulnerable and were easily targeted as a scapegoat. They told how many persons quit or got fired. Preserving a good relationship with the media was mentioned as being important but they found it difficult when they were hunted down by the mass media.

To be in an exposed position


The HDMs often felt exposed and bombarded by many different factions and found dealing with them all to be ethically challenging. They felt pressure from all sides, from the public, from the different health care professionals and the rules and regulations that have to be followed. The personal demands they place on themselves also bombarded them at times, they said. The HDMs felt that these ethical challenges could be met by finding positive aspects in their work. "The job gives me satisfaction and a person feels important. The driving force is that you want to improve health care".


The HDMs spoke of threats made by the public, which became most acute when they had made decisions that called for the closing of healthcare facilities. "Threats, in fact it's unpleasant being in this position, just standing there and taking it".

To be strategic

Avoiding difficult decisions

"It won't be long before the national politicians will be forced to take a stand on where the lines for elder care are to be drawn. A dialogue has been going on for a while with the professionals in which they have asked us to tell them what they should and should not do, but we haven't done that yet. This is a difficult area to address and it's only human to take up the most difficult issues last". According to the HDMs, the national allocation of resources between the different groups in the health care system has not been discussed in an open public debate. They said it was important to understand the processes involved when working in a socialised health care system.

Handling different opinions

The HDMs stated that they constantly had to deal with different opinions. Opinions could come from the different public interest groups or from different administrative entities within the health care system.

To live with divided feelings

Loyalty vs. own conviction

Making decisions that would have negative consequences for elder care were mentioned as being ethically challenging since it left them with divided feelings. The HDMs felt they had failed in their mission to provide good health care when their loyalty to their job forced them to make reductions. They also said that their position steers their actions since that is what is expected of them and that they are a part of a system with many actors involved.



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