Good Terminal Care Research Articles

Dying in the intensive care unit

Modern intensive care is responsible both for curative interventions in critical health situations and palliative terminal care for the dying ICU patient. By applying an integrated ethics approach, this article examines organizational and cultural factors shaping good terminal care in the ICU. Starting with a reflection on what it means to be human, ethical goals for care of the dying are formulated. Among them, the article focuses on practices ensuring a dignified dying process, on the structured engagement of patients' families, on respecting cultural and spiritual values, and on a clinical pathway for terminal care as an institutional framework. In conclusion, it becomes evident that good terminal care in the ICU not only depends on ethically sound decisions on withholding or withdrawing medical interventions but also on organizational and cultural aspects which must be acknowledged and shaped.

‘In solitary confinement’: Planning end-of-life well-being with people with advanced dementia, their family and professional carers

This study explored the opinions of people with advanced dementia, their family and professional carers, on promoting well-being during the last months of life and on good terminal care. It asked what wishes had already been expressed by or discussed with this group and examined the extent of communication between family and staff. Observations took place in hospital wards, residential and nursing homes and a hospice. Twelve patients (10 with advanced dementia) were interviewed, with one family carer and one professional carer each. Despite their advanced dementia, people in this study appeared to have, and were able to express, views on the end-of-life care. Some views may even have evolved since diagnosis, leading to a greater acceptance of death. This may suggest a general underestimation of the abilities of people with dementia to process abstract concepts and to discuss emotionally charged topics. It also highlighted a lack of communication both with patients about advanced directives and between family and staff about patients' wishes that had already been expressed. The study has significance for the way professionals perceive and react to people with advanced dementia, their end-of-life well-being and preparations for a death which would accord with their wishes.

Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards.

Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards Background and aim. The aim of the study was to explore the experiences of dying patients and nurses working in three elderly care wards focusing on the management of care for dying patients. The majority of patients who die in hospital are over the age of 65 and evidence suggests that three fifths are over the age of 75. Older patients pose tremendous problems and challenges to nurses and doctors regarding the provision of good terminal care, particularly in relation to developing effective communication. An ethnographic research design was chosen. The research sample consisted of 74 patients, 29 nurses and 8 physicians. The principle data collection methods were participant observation and semi-structured interviews. All respondents were interviewed following a period of observation on each of the ward areas. The data obtained from participant observation were then used to structure the interview questions. The purpose of asking questions about meanings associated with observational material was to evaluate the extent to which convergence or divergence of the data was taking place. The findings demonstrate that the care of older dying patients was defined by a lack of 'emotional engagement' with the patient and the institutionalized nondisclosure of information about death and dying. The study raises issues concerning the lack of effective communication about terminal diagnosis and the strategies used by nurses and doctors for disclosing information about death and dying. The findings suggest that although nurses provide individual care to dying patients, much of this was aimed at meeting patients' physical needs. Nurses reported psychosocial aspects including spiritual and emotional care to be important, although there was little evidence of them being orientated towards this in practice. The indicative conclusions from this study suggest that terminal care for some elderly patients remains hampered by a reluctance of nurses and doctors to be more open in their communication about death. It would appear that hospital culture and the mores, beliefs and ideologies that emanate from the biomedical model, significantly shape the experiences of older dying patients.

Stories about becoming a hospice nurse: Reasons, expectations, hopes, and concerns

Two months after the opening of Sweden's first purpose-built free-standing hospice, 19 nurses were asked to narrate their reasons, expectations, hopes, and concerns about their future work as hospice nurses. The stories were analyzed using a phenomenological-hermeneutic approach inspired by the philosophy of Ricoeur. The tension between endurance and enjoyment seems to be the essential feature of the nurses' stories. The nurses who were experienced in terminal care hope and expect to enjoy being hospice nurses, provided they are able to give good terminal care, that is, nursing care that is experienced as being meaningful. Those nurses who are inexperienced in terminal care hope and expect that they will be able to give and to grow as people and to develop as professionals, but do not yet know what to make of their experiences. Possible implications of the nurses' reasons, expectations, hopes, and concerns are discussed, and an understanding of the tension between endurance and enjoyment of being a hospice nurse is presented.

Euthanasia: can be part of good terminal care

It makes no sense to discuss euthanasia in terms of being for or against it. The basic question is whether we accept the right of human beings to decide for themselves how their lives will end. The backbone of ethics is respect for human life, and many doctors have interpreted their duty as being to keep patients alive at all costs and for as long as possible. Patients are sometimes treated even when the chances of success are slight, which the recent explosion in medical knowledge has made more likely.1 The request for euthanasia is in many respects a response to this. People now understand that treatment can lengthen not only life but also the suffering that may accompany treatment. They have a choice where once they had none: they can opt for treatment or, if they find …

Rehabilitation in terminal cancer patients.

Good terminal care may be described as rehabilitation of the dying, and is exemplified in the modern hospice. The aim is to help the individual patient to do his best, given his illness, his symptoms, and his cultural, familial and personal background and beliefs. Comfort is the primary objective, not prolongation of life. The patient and his family should be regarded as the unit of care. Sixty per cent of patients with far-advanced cancer experience pain. In the majority of patients it is not difficult to control pain provided certain basic principles are adhered to: 1. Careful evaluation of cause(s) of pain. 2. Realization that pain is a somatopsychic experience. 3. Use of an appropriate analgesic on a time-contingent basis. 4. Recognition that the effective dose of a narcotic analgesic varies widely. 5. Use of both non-drug and drug treatments. 6. Continuing surveillance of all patients, particularly those receiving a narcotic analgesic. A comparable analytical and systematic approach is necessary also in the management of other symptoms. Patients need professional friendship and support if they are to adjust to declining physical health and a poor prognosis. Gentle openness in matters of communication is fundamental; evasion and deceit are essentially destructive. Thed family too need much help if they and the patient are to become mutually supportive. Terminal care cannot be done by individuals, only by individuals working together as a team.