Feeding nursing home patients with severe dementia: a qualitative study

AIM: To describe the nature of problems nurses face when feeding nursing home patients with severe dementia, and how they deal with these problems. BACKGROUND: In our study on starting or withholding artificial nutrition and hydration for nursing home patients with dementia, we found that many problems in feeding arose (long) before any decision was made about artificial feeding, namely from the first moment a patient needed help with meals. Because 'ordinary feeding' was experienced as a daily recurring problem for nurses, we decided to investigate this within the study. METHODS: Participant observation by two researchers in two Dutch nursing homes. FINDINGS: Nurses interpreted the aversive behaviour of patients differently, and a link between interpretation and responses (stop or continue feeding) was observed. Differences in interpretation with regard to the same patient were observed in nurses in five of the seven units. Only in three units did nurses discuss their different interpretations in an attempt to find out why a patient avoided food and fluids and how to deal with these problems. CONCLUSIONS: Nurses' interpretations of aversive behaviour of patients differ. No definite conclusions can be drawn about the causes of the aversive behaviour observed, because they cannot be verified. We recommend that interpretations of the behaviour of particular patients should be discussed by nurses with physicians, other disciplines and the patient's family to obtain more insight into all its possible causes and to determine together the most likely interpretation and appropriate way in which to deal with the aversive behaviour. This would give nurses more confidence and improve the quality and continuity of care provided. To structure the search for possible causes of aversive behaviour, we developed a framework of causes of aversive behaviour and domains of functioning.     

Ethical reasoning associated with the feeding of terminally ill elderly cancer patients. An international perspective

An international nursing research study examined the ethical decision-making of "good and experienced" registered nurses in eight countries. The subjects were asked about their decision to feed or not to feed a hypothetical terminally ill, mentally alert, elderly cancer patient who refuses to eat. Cultural variations were demonstrated in the decisions as well as differences in ethical justification. The majority of nurses who would not feed appeared to use the principle of autonomy, whereas nurses who would feed the patient used beneficence as justification. Conditions under which nurses would change their decision to either feed or not feed the patient against her will included doctor's orders and lack of peer support for the decision. The majority of nurses clearly experienced a dilemma.     

Caregivers' attitudes to and interpretations of the behaviour of severely demented patients during feeding in a patient assignment care system

The feeding of six severely demented patients was changed from a task assignment to a patient assignment care system. Four caregivers participated in the study. Each caregiver fed her patient during 14 meals. Interviews with the caregivers after meal Nos 1, 7 and 14 revealed that this system made them feel more certain about how to interpret the eating behaviour of the patients. They also experienced a more positive attitude to the patient as well as more satisfaction with their work as feeders.     

Caregivers' perceptions and interpretations of severely demented patients during feeding in a task assignment system

Ninety-one focused interviews concerning the feeding of 23 severely demented patients were performed with 62 caregivers who fed the patients in a task assignment system. The aim was to increase the understanding about how caregivers perceive and interpret severely demented patients' behaviour and experiences during feeding. Content analysis showed that the caregivers' commitment or lack of commitment constituted a superior level that determined whether the patient was seen as a subject or as an object. Subcategories that were found were knowledge of the patient's disease and personal history, intuition, identification, empathy, generalisation and routinisation.     

Issues involved in promoting patient autonomy in health care

Respecting patient autonomy is a central part of the Royal College of Nursing's definition of nursing (RCN, 2003). Although autonomy is a fundamental ethical principle in health care, it stands alongside the principles of beneficence, non-maleficence and justice (Wilmot, 2003), and these principles may be interpreted differently by individuals and professional groups. In seeking to promote patient autonomy, it is therefore necessary for nurses to consider how these principles interlink, and to understand the potentially differing interpretations that they may encounter in practice. This article sets out to address these issues and suggests that facilitating patient autonomy includes engaging in debates which include uncertainties, considering the resource implications of patient autonomy and the responsibilities that patients have themselves. It also identifies that nurses who aim to promote patient autonomy and holistic decision making need to be able to facilitate discussion that may include questioning the dominant biomedical view of health. This will be problematic if nurses do not themselves feel empowered or autonomous.     

Initiating and terminating verbal interaction between nurses and severely demented patients regarded as vocally disruptive

Initiating and terminating verbal interaction between nurses and severely demented patients regarded as vocally disruptive.
The care of demented patients requires clear communication during care procedures. Earlier studies have shown that nurses were often vague in their verbal communication and unpublished observations indicated that in some cases demented patients continued to be verbally active after the nurses had left. This study aimed at exploring further the initiating and terminating phases of verbal interaction episodes between nurses and severely demented patients, to explore any relationship between nurses' communication style and vocally disruptive patients. Nine severely demented patients identified as vocally disruptive were tape-recorded between 07.00 h and 13.00 h. Any nurse–patient interaction episode lasting more than 30 s ( n = 58) during care procedures was transcribed verbatim and its verbal communication activity was analysed for content and meta communication, and a communication index was calculated. The results showed strong task orientation and decreased verbal interaction during the course of the interaction. The data supported the assumption that the nurses' communication style increases or decreases patients' vocal activity. Vocal activity after the actual interaction episode seemed to coincide with the parties' communication on various levels, with a different focus of content, and with several nurses being involved in the same procedure. Nurses may become impatient and stressed by their patients' severe communication problems and therefore need to be relieved of this stress and supported so that they can remain close to the patient and be able to interpret his/her communication.     

Assisting demented patients with feeding: problems in a ward environment. A review of the literature

A critical review of the literature on assisting demented patients with feeding difficulties identifies that care at mealtimes is often task-centred, causing stress in both patients and staff and inadequate patient care. Nurses may even be inducing dependency in this vulnerable patient group. The staff to whom this care is most often delegated do not receive sufficient education or training to enable them to achieve a sufficient degree of empathy with the patient although there is evidence in the literature to suggest that this is a necessary requirement. It is also apparent that nurses use inadequate assessment criteria, perhaps due to the fact that there is an element of commonality in the feeding behaviour of demented patients which nurses feel they have seen many times and are able to deal with. The introduction of primary nursing, increased education of nursing assistants and improved assessment procedures to combat these problems are recommended. The process of change is briefly outlined and in conclusion some areas for future research are stated.     

Nursing ethics in a developing country

Nursing is a true profession, distinguished by its philosophy of care, its full-time commitment to human wellbeing, its particular blend of knowledge and skills and its valuable service to the community (Curtin & Flaherty, 1982:92). Ethics is vital to nursing. Being a professional implies ethical behaviour and knowledge of what it means to be ethical (Pera & Van Tonder, 1996:v). Ethics is the foundation of committed service to humankind. When nurses practice is an ethical manner they should adhere to ethical principles like autonomy, beneficence, justice, veracity, fidelity, confidentiality and privacy. From this conceptual framework two questions can be asked, namely: Does the behaviour of nurses in health services in South Africa comply with the principles of ethics? How can ethical behaviour be facilitated in nurses in South Africa? The first question was answered by doing a critical analysis of thirty-two case studies of recent ethical phenomena in health services. The ethical principles will be used as criteria for this analysis. Some of the ethical case studies will be presented in this paper to indicate the problems in relation to autonomy, beneficence, justice, veracity and fidelity. It will be demonstrated that from deontological ethical theories nurses are not doing their duty as advocates for the vulnerable patient and from utilitarianism the poor and uneducated patients are being exploited. To empower patients in developing countries it is of vital importance for nurses to behave in an ethical manner. From a literature study a program for rational interaction for moral sensitivity (Rossouw, 1995) and virtue-based ethics in Nursing Education is identified to facilitate moral behaviour amongst nurses in developing countries.     

An ethical analysis of double bind conflicts as experienced by care workers feeding severely demented patients

When patients with incurable dementia diseases no longer take food or fluid voluntarily, the care workers experience distress and anxiety. Thirty-nine care workers were interviewed about their thoughts, feelings and attitudes towards feeding severely demented patients. A phenomenological approach was used and the interviews were developed, attention paid to Bateson's double bind theory, Kohlberg's theory of moral development and ethical theories. Ethical theories, principles and rules, containing messages at different logical levels and the lack of empirical knowledge of the demented patients' inner world, led to the care worker's difficult double bind situations. To solve the conflicts the care workers need insight in all aspects of the problem. In order to understand all the components in a double bind situation it is important to redefine it from outside.     

Principle-based ethics and nurses' attitudes towards artificial feeding

Nurses often institute artificial feeding for patients who would otherwise starve Recently, the courts in the United States have favoured withholding or withdrawing feedings from patients who currently refuse or previously gave some indication they would refuse artificial nutrition and hydration This paper investigates under what circumstances nurses feel justified in withholding artificial nutrition and hydration Structured interviews were conducted with 40 cancer care nurses from two sites, and 40 dementia care nurses from two sites The interviews were based on two vignettes, one involving an alert patient with terminal cancer, the other a patient suffering end-stage Alzheimer's dementia, and were analysed for themes coinciding with principles of deontological ethics Investigators found that autonomy, beneficence and non-maleficence most often guided nurses' decisions to withhold or implement artificial feeding     

Unwillingness to be violated: carers' experiences of caring for a person acting in a disturbing manner. An interview study

? Carers working in psychiatric care are sometimes exposed to insane, unpredictable and violent actions. In rare cases a patient appears to be resistant to all forms of pharmacological treatment. ? Fifteen carers (four registered nurses, 11 enrolled nurses) on a psychiatric ward in Sweden were interviewed about their experiences when caring for a person who acted in a disturbing manner. Narrative interviews were conducted and interpreted using a method inspired by Ricoeur. ? Four themes were formulated which describe the carers’ uncertainty about the future, their inability to interpret the patient’s disturbing behaviour and their own overall feeling of meaninglessness. ? The carers were of the opinion that the patient had the power and ruled the ward, which led to them feeling they were subjugated victims. The interviews also revealed the carers’ recognition of forbidden feelings and actions and unknown negative sides. ? These results were interpreted and reflected on in the light of an ethical framework in order to achieve a deeper understanding of the text. ? This paper shows that an ethical perspective is important when searching for the meaning of caring for patients acting in a disturbing manner. The study raises the question: ‘Is it possible to establish good when evil has dominion?’.     

Weight of practical,conceptual and ethical problems related to spoon feeding of aged patients with diminished mental capacity

This qualitative study is based on twenty observations. Problems with spoon feeding of hospitalized, elder, demented patients are rarely considered. This study aims at analyzing their practical, conceptual and ethical specificities. Ten patients were directly observed and their ten nurses of reference responded to structured interviews. We established three significant observations: 1. The use of spoon feeding appeared inoperative as it did not help resolve the problems that were invoked to justify its implementation. 2. Three months after the observations six patients were deceased, three were able to feed themselves and one did not improve. 3. In all observed cases, spoon feeding was initiated as a tacit evolution, with no formal decision process. To avoid this dead end we consider it indispensable to evolve this feeding practice from its current state of unchallengeable humane duty to the conceptual level of patient care, and to develop evaluation tools which will enable its integration into a structured strategy of nursing interventions.     

Food refusal amongst nursing home patients as conceptualized by nurses'' aids and enrolled nurses: an interview study

One hundred and forty-three nurses' aids and 48 enrolled nurses at nursing homes in Sweden were interviewed about food refusal among patients. It became evident that their concepts of 'food refusal' and 'forced feeding' were very vague. This could partly be explained by the lack of knowledge among staff of how to interpret the frequent ambiguous eating behaviours among demented patients. It has been suggested that concept clarification and ethical analysis might reduce anxiety among staff caring for patients with severe eating problems.     

Neonatal death and parents' grief. Experience, behaviour and attitudes of Swedish nurses

The aim of the present study was to survey the experience, behaviour and attitudes of nurses in Swedish neonatal wards towards parents who refuse or are reluctant to see, touch or hold their dying or dead baby. A questionnaire was distributed to 173 nurses, of whom 144 responded. The questionnaire contained questions about the nurses' own experience of such situations, their behaviour, and their attitude towards influencing the parents. Seventy-four percent answered that they had experience of such situations, 59% that they often tried to persuade or in other ways influence the parents to change their mind, and 60% were of the opinion that the parents mourning-process is always facilitated when they touch or hold their dead baby. Most nurses (83%) were of the opinion that the conflict between beneficence and autonomy was difficult but not impossible to solve. A majority of the nurses were inclined to give priority to the principle of beneficence. But is this inclination ethically justified? A well-founded answer to this question requires more knowledge about the experiences of parents who have lived through such traumatic situations.     

Ethical dilemmas and moral distress in oncology nursing practice

Although ethical values and principles guide oncology nursing practice, nurses often are challenged to fulfill every professional core duty and responsibility in their everyday practice. Nurses commonly encounter clinical situations that have ethical conflicts, and they often have difficulty recognizing and articulating them. Unresolved conflicts can cause feelings of frustration and powerlessness, which can lead to compromises in patient care, job dissatisfaction, disagreements among those in the healthcare team, and burnout. This article reviews the ethical principles and values individual nurses bring to their practice as well as those basic to the profession of nursing. This article also discusses ethical conflicts in oncology practice and describes how nurses, especially students and novice nurses, may react to such situations with moral uncertainty or distress. In addition, a process for analyzing and resolving ethical problems in clinical situations is outlined. Increasing awareness and dialogue about ethical issues is an important first step in the process. Additional resources in the clinical setting may encourage nurses to actively participate in ethical decision making and take deliberate action as moral agents.     

Feeding problems in severely demented patients seen from task and relationship aspects

This study aimed at increasing the understanding of feeding problems in severely demented patients cared for in a task assignment system. Twenty-three video-recordings made during the feeding of 15 severely demented patients and 55 focused interviews with 45 caregivers, who fed the 15 patients during that period were analysed regarding the feeding problems seen from a task aspect and from a relationship aspect. The result indicated that the problems were partly of a more constant nature and partly fluctuated from meal to meal. Feeding problems regarding the task aspect were mentioned first by the caregivers in the interviews in spite of the fact that the patients had severe communication problems which could be expected to cause great problems in the relationship between the patient and his caregiver. Reasons for these findings are suggested.     

Ethical problems experienced by school nurses.

This study explored school nurses' experience of ethical conflict in school nursing through interviews with six school nurses. The study examined how school nurses resolved ethical problems and the rationale used to resolve them. Emergent themes of ethical problems were professional relationship conflicts, delegation to and supervision of health assistants, child protection reporting, maintaining confidentiality, Do Not Resuscitate policy, and pressure to work outside of nursing practice standards. School nurses did not use ethical decision-making models in resolving conflict but demonstrated the use of professional standards, ethical principles, and personal values as rationale to resolve ethical problems. Results of this study suggested that school nurses would benefit from additional knowledge about ethical decision-making models. School nurses would also profit from hearing each other's voices through dialogue about ethical problems and decision making.     

Should a ventilator be removed at a patient's request? An ethical analysis

The request of a ventilator-dependent quadriplegic person to be removed from the ventilator presents the health care team with an ethical dilemma. Application of ethical principles to case facts guides the decision maker. The ethical principle of autonomy requires that persons be respected and free to determine their course in life. The ethical principle of beneficence requires the health care team to actively benefit or do good for the patient. The ethical principle of nonmaleficence requires the health care team to refrain from harming a patient. The ethical duty of fidelity requires the nurse to be faithful to commitments made to patients. Ethical principles and duties are clear and straightforward. The decision of how they apply to a given case is not. However, applying them to a case, while not providing definitive answers, will provide the certainty that the decision was the best possible in a particular set of circumstances. An increasing number of cases similar to Joe's is being resolved in favor of discontinuing the ventilator. Emotional havoc could be the result to nurses who care for these patients. Individuals and institutions must begin planning strategies to deal with these and similar ethical dilemmas. Strategies might include anticipatory counseling, ethical decision making education programs and utilization of a nurse trained in ethics as a staff resource person. Nurses should attend and be involved in discussions of institutional ethics committees.(ABSTRACT TRUNCATED AT 250 WORDS)     

Humility and its practice in nursing

Following a personal experience of transformation as a result of washing the feet of a terminally ill patient, an exploratory study was undertaken to investigate nurses' experience of washing patients' feet. Seven postregistration student nurses participated in the study by washing the feet of as many patients as they could over a defined period of time. They were then interviewed about the experience. The transcribed interviews were analysed using the heuristic enquiry approach. Symbolically, washing feet is an act of humility. In washing feet in the manner required for this study I suggest that the nurses were practising beyond role definition of duty of care. As a result of this they experienced interconnectedness and changes in their relationship with the patients whose feet they had washed that could be interpreted as a response to humility.