The contribution of the work presented in this thesis to scientific knowledge is in explaining that ethical challenges in nursing homes include both big ethical issues and everyday ethical challenges for all stakeholders, including residents, relatives and staff. One main conclusion is the need to talk together about everyday ethical challenges, decision-making and end-of-life care in nursing homes. This includes residents, relatives and nursing home staff members, such as nurses and physicians. Advance care planning and preparatory conversations can help residents to be as autonomous and self-determinant as possible, may reduce the burden of decision-making without knowing the true wishes of the residents for relatives and staff, and may thus help to reduce conflict, especially conflict about decision-making in end-of-life care.
The overall aims of this thesis were to study ethical challenges in nursing homes and the current practice of ethics discussions and decision-making in nursing homes. Major aims were to explore the views of nursing home residents and relatives on ethical challenges, decision-making and end-of-life care in nursing homes, and also to document which ethical challenges were discussed in nursing home ethics discussion arenas, what experience the staff had with systematic ethics work, and whether ethics discussions contribute to reaching consensus.
The following conclusions are answers to the four main research questions raised in the thesis:
1. What do nursing home residents, relatives and staff members perceive as ethical problems in nursing homes?
Everyday ethical issues are most important for the residents and relatives. They frequently mentioned autonomy and a lack of time to get help and social contact (lack of resources).
None of the residents mentioned ethical issues in end-of-life care. Important factors for a good life, from the residents perspectives, were social contact, participation in daily life and self-determination (Paper I).
Most staff members experienced ethical challenges in daily work. The most commonly described ethical challenges were a lack of resources, end-of-life issues, coercion,
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communication, lack of professional competence and issues about resident autonomy.
Everyday ethical issues are important in nursing homes, including from the staff perspective (Paper III). ACP, PEG-insertion or ethical challenges associated with PEG use, hospitalisation and end-of-life decision-making were the most important topics in the 105 documented ethics meetings (Paper IV). About a third of the meetings focused mainly on everyday ethical challenges.
2. How do nursing home residents and relatives think decisions should be made for the residents?
Differing views about decision-making and advance care planning between residents and relatives, was one of the main findings. Most residents trust relatives and staff to make important decisions for them, and believe that they would know their wishes. The majority of the residents had not participated in advance care planning. They seem to be satisfied with decision-making and nursing home end-of-life care in general. Many residents want their relatives to make decisions for them, and appreciated shared decision-making by relatives, nurses and physicians if unable to decide for themselves. In contrast, many relatives are insecure about a resident’s wishes, and experience decision-making as a burden (Paper II).
Most relatives prefer shared decision-making with physicians and nurses (Paper II).
3. What are the most frequent ethical challenges discussed in ethics meetings in nursing homes in Norway, Germany and Austria?
Lack of resources, end-of-life issues and coercion were the ethical challenges most often reported by nursing home staff from Norway. Although everyday ethical issues play an important role in the daily work, topics discussed in resident ethics meetings mostly involve ACP, the withholding or withdrawing of life-prolonging treatment and other big ethical issues.
Everyday ethical issues are often hidden under the surface as illustrated by the ethics iceberg (Paper III).
Of the 105 documented ethics meetings in Norway, Germany and Austria, the main topics were advance care planning, ethical challenges associated with artificial nutrition,
hospitalisation, and end-of-life decision-making. About a third of all meetings focused mainly on everyday ethical challenges.
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Agreement about a solution was reached in ¾ of prospective case discussions. Unfortunately in about a third of these, no residents or relatives participated (Paper IV).
4. What are the staff experiences with systematic ethics work and ethics discussions in nursing homes in Norway, Germany and Austria?
Nursing home staff members appreciate systematic ethics work to aid decision-making.
Resident ethics meetings helped to reach consensus in all documented prospective ethics discussions (Paper III) Relatives participated in most ethics discussions, whereas participation of residents was totally absent. The results of the study support the value of a systematic approach to resolving ethical dilemmas in nursing homes (Paper III).
The advantages of systematic ethics work described by the staff were enhanced openness and dialogue, overall, and a greater ethical awareness. Many voiced a need for structure and support from the administration (Paper IV).
Systematic ethics work is greatly appreciated by the staff and helps to reach a consensus in the majority of case discussions. Attention to everyday ethical challenges is important. The participation of relatives and physicians could be improved (Paper IV).
The implementation of systematic ethics work leads to a change of the focus in ethics discussions from end-of-life themes to everyday ethical challenges,, such as dignity, resident autonomy and self-determination (Paper IV). This is illustrated by the tipping ethics iceberg.
For the staff, systematic ethics work and ethics discussion arenas may help to reduce the burden of ethical challenges, and serve as tool to aid decision-making for residents without the capacity to decide.
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