Hospice care.

Hospice care is a philosophy and system of care for the terminally ill patient that accepts death in an affirmative way and provides palliative care and emotional support to dying patients and their families. The primary care physician needs to better understand the hospice concepts, the reasons for and growth of hospice care, and the depth of resources that can assist in equality management of the terminally ill.     

Palliative care professionals' perceptions of nutrition and hydration at the end of life

The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue.     

Nurse-patient relationships in palliative care

AIM: The aim of this paper is to report a study exploring aspects of nurse-patient relationships in the context of palliative care. BACKGROUND: Although there are numerous studies addressing nurse-patient relationships, little research has focused on these in the context of palliative are. Furthermore, no previous study has examined the relationship in the Chinese context. METHODS: Qualitative data were collected from 10 hospice nurses and 10 terminally ill patients by means of open ended unstructured interviews. Respondents were asked to reflect on practices and incidents that would allow an understanding of the meaning of nurse-patient relationships in palliative care. RESULTS: Four major categories emerged from the perspectives of patients and nurses: (1) forming a relationship of trust; (2) being part of the family; (3) refilling with fuel along the journey of living and dying; and (4) enriched experiences. Responses revealed that a relationship of trust is formed, and that nurses are not only regarded as health professionals, but also become part of the family or a good friend. Nurses who develop trusting relationships demonstrate a holistic approach to caring, show their understanding of patients' suffering, are aware of their unvoiced needs, provide comfort without actually being asked, and are reliable, proficient, competent and dedicated in their care. CONCLUSION: Trust, the achievement of the goals of patients and nurses, caring and reciprocity are important elements of nurse-patient relationships in palliative care. Such relationships not only improve patients' physical and emotional state, but also facilitate their adjustment to their illness, ease pain and can ultimately lead to a good death experience. It is nurses' personal qualities and skills, which are embedded in these relationships, that constitute excellence in nursing care. Nurses also derive satisfaction and are enriched through the relationships.     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

Pilot of a pathway to improve the care of imminently dying oncology inpatients in a Veterans Affairs Medical Center

We report on the implementation of a previously developed clinical pathway for terminally ill patients, Palliative Care for Advanced Disease (PCAD), on a Veterans Administration (VA) acute care oncology unit, comparing processes of care and outcomes for patients on and off the pathway. The PCAD pathway is designed to identify imminently dying patients, review care goals, respect patients' wishes, assess and manage symptoms, address spirituality, and support family members. Retrospective chart reviews from 15 patients who died on PCAD, 14 patients who died on general wards during the same time, and 10 oncology unit patients who died prior to PCAD revealed that PCAD patients were more likely to have documentation of care goals and plans of comfort care (P = 0.0001), fewer interventions, and more symptoms assessed (P = 0.004), and more symptoms managed according to PCAD guidelines (P = 0.02). Implementation of PCAD improved care of dying inpatients by increasing documentation of goals and plans of care, improving symptom assessment and management, and decreasing interventions at the end of life.     

The perceptions and experiences of nurses and bereaved families towards bereavement care in an oncology unit

Background

Existing bereavement literature focuses on the care provided in palliative care units or community settings. However, nurses in oncology units are in a unique position to provide bereavement care, which is care extended to the families after the death of cancer patients. This study aimed to explore the perceptions and experiences of bereavement care among nurses and bereaved family members in an oncology unit in Hong Kong.

Method

Semi-structured qualitative interviews were carried out in one oncology unit in Hong Kong with 15 nurses and ten bereaved family members. All interviews were audiotaped, transcribed verbatim and analysed by using qualitative content analysis.

Results

Among the bereaved family members, three themes emerged: being informed, being supported and being with the patient before and after the patient’s death. Among the oncology nurses, however, the three identified themes were: elements of good bereavement care, emotional response in providing bereavement care and educational needs in the provision of bereavement care. Comparatively, the experiences of and the opinions on bereavement care identified by the bereaved were more specific than those identified by the nurses.

Conclusion

The findings revealed that there is room for improvement in current bereavement care. Family members were committed to patient care and they expressed their need for more involvement in the patient care, which could result in a positive impact on their grief and loss experience. Nurses were committed to quality care, and they expressed their need for more training on knowledge, skills and attitudes to improve their readiness and competencies in the provision of bereavement care.     

Nursing the dying: essential elements in the care of terminally ill patients

AIM: To verify those aspects of care that nurses view as important when assisting patients beyond therapeutic possibilities and who are not under intensive care. OBJECTIVES: (1) To find out how nurses cope with daily confrontation with the death and suffering of dying patients, (2) To identify whether nurses feel it is important to have communication skills in order to assist the terminally ill patient, (3) To estimate nurses' degree of work satisfaction, and (4) To explore the humane aspects of nursing assistance to the dying. METHOD: Data were collected in January and February of 2002 by means of individual semistructured interviews with 14 nurses from the unit of haematology at a general hospital in the city of Sao Paulo, Brazil. Interviews were recorded, transcribed, and further analysed according to the qualitative method proposed by Bardin (1977). RESULTS: We found that Brazilian nurses caring for dying patients should be receiving psychological and emotional support. Results also highlighted different individual approaches in the endeavour to communicate with terminally ill patients, as well as the avoidance patterns developed by some nurses. The latter appeared to be as a result of personal difficulties in coping with the reality of human suffering and death. Finally, there is a need for better preparation in communication skills for nurses caring for terminally ill patients. CONCLUSION: Although the number of interviewed nurses in our study was small, the results corroborated the findings of other studies on the subject.     

A support group programme for relatives during the late palliative phase

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.     

Communication with dying patients--perception of intensive care units nurses in Brazil

Aims and objectives. This study aimed to assess whether nurses working in intensive care units view the establishment of communication with patients beyond therapeutic possibilities as an effective palliative therapeutic resource, and which aspects of this communication they valued most. Method. Data were collected in November 2002, by semi‐structured interviews with 10 nurses of both clinical and surgical intensive care unit at a school hospital in Sao Paulo city, Brazil. Interviews were recorded and transcribed to be further analysed according to the qualitative methodology of content analysis. Results. Four categories of thematic order raised from the collected statements, which clarify (i) the value of communication with terminal patients; (ii) the obstacles found during this process; (iii) the need to identify the individual demands of each patient, (iv) be able to use communication as a tool in the palliative care of the dying patient. Conclusion. In conclusion, we found that the nurses working at the intensive care unit do consider communication with dying patients an effective therapeutic resource, in spite of their own difficulties in communicating with dying patients, viewing themselves as ill prepared to the task, and often, distancing themselves from the dying patients because of their inability to deal with their own feelings, which were brought forth by the confrontation with the imminence of death. Relevance to clinical practice. Although the number of interviewed nurses in our study was small, the results corroborated the findings of other studies and revealed an educational aspect in nursing training that deserves serious consideration.     

End-of-life care in UK critical care units--a literature review

Aim: To appraise literature concerning end‐of‐life care (ELC) in adult critical care units in the UK in order to improve clinical practice. Objective: To understand the interplay between legal and ethical, political, societal aspects of ELC for sustainable quality care. Background: Significant changes in health care policy for the critically ill patient have occurred since 1999. Simultaneously, the government is committed to improving care for the dying by integrating the palliative care ethos across the National Institutes of Health (NHS) to include non‐cancer sufferers. Death continues to be a feature of critical illness, particularly following the decision to withhold/withdraw life‐prolonging treatments. Search strategy: A search of MEDLINE, BNI, CINAHL and PSYCinfo using key words revealed very few results; consequently, the search was broadened to include ASSIA, King’s Fund, TRIP, Healthstar, NHS Economic Evaluation Data, Cochrane, professional journals and government documents. Conclusions: The literature reveals a paradigm shift from critical to palliative care, in other words, from a reductionist approach to a more humanistic approach in the acute setting. When treatment is deemed futile, quality ELC involving the assessment, ongoing assessment and care after death becomes the new goal for the critical care team. To practice ELC competently, nurses require organizational and educational support at local and national levels. Relevance to clinical practice: Although medico‐legal decision‐making is not part of their professional role, critical care nurses have an extraordinary opportunity to make a difference to the dying patient and their family and their acceptance of death.     

Wound care at end of life

Nurses are in a unique and privileged position with regard to both end-of-life care and wound care. Expert wound care can greatly contribute to the relief of physiologic stress on the human organism and psychosocial and physical distress at the end of life. Using what is known from both domains,nurses apply critical thinking to assist patients, families, and other caregivers in maintaining the maximum possible integrity of the physical body of the dying person. The manner in which nurses approach wound care with dying patients and the ability to preserve patient dignity and family respect while doing necessary palliative interventions also can serve the healing of emotional wounds in the dying process.     

Factors That Affect Quality of Dying and Death in Terminal Cancer Patients on Inpatient Palliative Care Units: Perspectives of Bereaved Family Caregivers

ContextThere is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dying and death in PCUs.ObjectivesThe aim of this study was to identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs.MethodsData were collected from 570 bereaved family caregivers of terminally ill cancer patients. All patients were registered and died in one of the 40 inpatient PCUs designated by the Korean Ministry of Health and Welfare. We assessed the perceived timing of referral to a PCU; the quality of end-of-life cancer care with the Care Evaluation Scale; and the quality of dying and death with the Good Death Inventory.ResultsThe perception of appropriate timing of referral, use of a community-based PCU, and higher quality of cancer care as assessed by the Care Evaluation Scale were associated with good dying and death in all domains of the Good Death Inventory.ConclusionThe good quality of end-of-life care in a PCU improves the quality of dying in terminally ill cancer patients. The data have the potential to guide the development of interventions aimed at achieving a good quality of dying for patients with terminal cancer.     

The dying patient in the ICU: role of the interdisciplinary team

Expert opinion supports the application of broad interdisciplinary team approaches to the care of the dying patient in the intensive care unit (ICU). Current literature contains many suggestions about how core team members-physicians, nurses, and patients/family members-could systematically enhance interdisciplinary collaboration in the care of the dying patient. In the few studies of ICU interdisciplinary collaborative care of the dying patient, investigator shave demonstrated improvement in care. In addition, ethics consultants and interdisciplinary palliative care teams, working with the core team members, have improved care for the dying.Further studies are needed to document alternative interdisciplinary models for achieving improved and durable patient, family,and provider outcomes in the care of the dying ICU patient.     

Spirituality,psychotherapy and music in palliative cancer care: research projects in psycho-oncology at an oncology center in Switzerland

It is recognized as increasingly important in palliative care that spiritual needs of terminally ill patients should be acknowledged and addressed. Two research projects investigated the feasibility of psychotherapeutic and music therapeutic assistance offered to advanced cancer patients. The first project (1998-2000) sought to improve the understanding of the effect of therapeutic support given to 80 patients and the characteristics of the dying process. The second project (2000-2003) assessed the significance of spiritual experiences in illness and affliction. Empathic therapeutic assistance, observations and systematic record keeping were combined with statistical assessment in an interdisciplinary approach. A respectful attitude and spiritual care were taken to perceive and analyse changes in border areas of life. The first project studied the rules and methods of terminal communication and described three stages in the dying process. After a 'passing through,' the dying often had a spiritual opening leading in a state beyond all pain. The second project concentrated on spiritual experiences. Of 251 treated patients, 135 had such experiences. Spiritual experiences can have a great impact on physical and emotional well-being (alleviate pain, release from anxiety and despair, engender feelings of serenity and wholeness) and facilitate dying. Music therapy, psychotherapy and spiritual assistance offer essential methods for psycho-oncology and palliative care. A holistic and interdisciplinary approach is needed to assist patients in their complex suffering. Our findings on spiritual experience and terminal communication should stimulate further research in a still unexplored territory of clinical research.