Posthumous reproduction and palliative care

Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction.     

A model long-term care hospice unit: care, community, and compassion

The purpose of this study was to investigate the factors that influenced the quality of care of terminally ill nursing home residents on a hospice unit in a city and county long-term care facility. The findings disclosed that the hospice team had created a cultural environment in which care, community, and compassion were the predominant components of their philosophy of palliative care. Communication at all levels-among staff, family, friends, and residents-was found to be a core hospice value, essential to community development. The results of this study illustrate that exemplary palliative care can be provided when an interdisciplinary team is dedicated to creating an environment where the principles of palliative care can be fully implemented. The authors conclude that there is a developing role for geriatric nurses to participate in further defining and providing palliative care for older people in their homes, hospitals, nursing homes, and residential care.     

Ethical issues in the neonatal intensive care unit

The case of Baby Y presented a difficult and complex ethical dilemma for the family and the staff involved. The issues of religious beliefs and law, up-holding these beliefs in the center of a religious community, financial concerns, and health care workers disagreeing about carrying out treatments made this case one that few will forget. When asked after Baby Y died how they felt, many members of the staff answered that it should not have gone on as long as it did and that they learned a lot from the family and the experience. Palliative care has been well associated with the adult cancer population in the form of hospice care. It is the hope that this well-integrated aspect of care crosses over to the NICU population. Many of the patients in the types of cases mentioned previously stay in the NICU for extended periods of time until a decision is made clear or the infant expires on his own time. The hustle and bustle of a busy, open, and not-so-private NICU is not the place for this to take place. The NICU should have a designated place where these infants can be cared for better in a more family-centered and staff-friendly environment. Pain management is another important aspect of palliative care. Comfort of the infant is of utmost importance, as it helps the family believe the suffering is under control. During the last few days or weeks of life, the family should have time that is peaceful and restful, and, eventually, the infant should have a pain-free death.Lastly, a part of the palliative care philosophy and approach includes providing treatments that may ap-pear to prolong the inevitable but in fact help the process along to resolution. In the case of Baby Y, surgery to repair some of the defects may have allowed her to go home with her family and spend her short life with them. This was the wish of the mother,especially, and it never happened. It may well be the"what if" she continues to ask for the rest of her life.     

Developing a bereavement services component for an urban teaching hospital's new palliative care program: a four-target survey approach

As more patients die in the hospital under the supervision of palliative care teams, there is a growing interest in hospital-based bereavement services. As part of the palliative care program development at our 463-bed community-based teaching hospital, we conducted a survey of top national palliative care programs, local hospice programs, local funeral homes, and the original staff of the hospital's prior program. The significance of certain data stood out in terms of the planning of delivery of services at our hospital. Three issues were of primary concern to the study team: providing families with services beyond the "minimal" of a single card or telephone call; the position of a bereavement coordinator would be necessary to manage or oversee the delivery of these services; and community volunteer aid was needed to ensure the program's financial viability.     

癌症病人的临终关怀与护理

简要阐明了临终关怀护理的发展及其服务机构的形式 ,综述了癌症病人临终关怀护理的重点是控制症状、给予病人及其家属心理支持 ,提出护理人员有责任开展和宣传临终关怀的意义 ,提高临终关怀的护理质量。     

Prison hospice and pastoral care services in California

Hospice at the California Medical Facility (CMF) Vacaville dates back to the mid-1980s, when the acquired immune deficiency syndrome (AIDS) epidemic began to be felt throughout California's Department of Corrections. Vacaville has served for decades as the principal location for delivering health services to California's incarcerated men. Informal hospice-like services were inspired by Elisabeth Kubler-Ross and through inmate and community calls for more humane care for dying inmates. By 1990, efforts to formally establish a hospice were under way. In 1996, a 17-bed, state-licensed hospice began caring for dying inmates. An interdisciplinary team plans and delivers the care, meeting weekly to admit and review patients. The Pastoral Care Services (PCS) inmate volunteer program, with more than 50 trained participants, provides care and comfort to dying patients in hospice and to ill patients on the general medicine service. PCS volunteers perform many duties, including sitting vigil with actively dying inmates. Inmates enrolling in hospice have to forgo further curative therapy, consent to the program in writing, and have a 6-month or less survival prognosis; patients are not required to have a do-not-resuscitate (DNR) order, but are encouraged to consider one. Training for physicians, staff and PCS volunteers is provided by the University of California, Davis faculty of the West Coast Center for Palliative Education. Bereavement services are provided for PCS volunteers, other inmate "family" and staff. Family and friends of the deceased in the free community are followed by phone, mail, and primarily through referral to resources in their local area.     

Providing pediatric palliative care through a pediatric supportive care team

We expect children to live to adulthood; however, children do die. Some die from diseases they are born with, others from accidents or illnesses. The devastating effects associated with the death of a child can be lessened by providing palliative, hospice, and bereavement care. At St. John Hospital (SJH) in Detroit, MI, the services that provide care for children chartered the Pediatric Palliative Care Committee. The committee brought together staff from the inpatient pediatric unit, cancer center, home care, and hospice care services within the St. John Health System. Utilizing established staff and services, this group began to provide care for children with potentially life limiting illnesses in a coordinated, multidisciplinary team approach. The positive outcomes of this approach include an overall increase in patient and family satisfaction with care, a decrease in the number of emergency room visits and inpatient hospital stays, and an increase in patient and family informed decision making and goal setting. Positive outcomes for the staff include support in caring for children with life limiting illnesses and an increase in satisfaction with the care they provide.     

Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care

The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.     

Proactive palliative care choices for haematology day unit patients

End stage haematology patients may require transfusion of blood, or blood products, regularly throughout the week. One regional haematology day unit sister identified difficulties that these hospital services dependent patients were experiencing in establishing contact with local community specialist palliative care services. As a consequence, some patients were unable to access specialist palliative care services in the community when they were too unwell to attend the day unit, resulting in acute admission to hospital for terminal care. Discussion of this issue with nursing colleagues from the hospital and community palliative care teams led to the development of an alternative model of palliative care delivery for these patients. The new model increased patient choice. Evaluation of this model of care demonstrated an increase in planned hospice/community deaths, avoiding unnecessary emergency hospital admissions in the last days of life. All regional patients accessed some palliative care services/treatment locally and there was opportunity for patient-initiated palliative care review.     

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.     

Developmentally supportive care in the newborn intensive care unit: early intervention in the community

The traditional focus of hospital nurses on the medical concerns of infants and toddlers is expanding to encompass the more global view that integrates the developmental level of each infant/toddler into the nursing care plan. Research on early brain development has supported the focus on developmentally supportive care in the NICU. Nursing support of the early relationship between infant and parent that will influence the infant's future development is part of this process. The integration of developmental care concepts including family-centered care that begins on admission to the NICU may continue into the process of discharge and transition to home. The nurse is in an excellent position to support the family in naming their concerns, their strengths, and the hopes and dreams they have for their infant. Nurses in the NICU, home care, community, and public health increasingly focus on a developmental perspective in their work but will be continually challenged to increase their knowledge and understanding of developmental milestones, neurodevelopmental assessment, and their role in collaborating with the wider world of early intervention. This collaboration includes the health care system, the educational system, and the social service system as equal players. For some nurses, this will be a new experience whereby the responsibility for the child is shared among members of an interdisciplinary team that includes the parents. Nurses are key to providing developmentally supportive care and working collaboratively on behalf of the infants and toddlers and their families.     

Patient-held records in cancer and palliative care: a randomized,prospective trialt

OBJECTIVES: To evaluate prospectively the introduction of a patient-held record (PHR) in the management of patients with advanced cancer and palliative care needs. DESIGN: a) A prospective, parallel group, randomized controlled trial. b) A postal survey of the opinions of health professionals whose patients had a PHR. SETTING: Out-patient oncology centres in Glasgow and Edinburgh, hospice home-care services across the central belt in Scotland. PARTICIPANTS: A total of 244 patients with advanced cancer recruited either from oncology outpatient clinics or hospice home-care services. The baseline interview was completed by 231 patients and 117 were randomized to receive the PHR. Between 4 and 6 months later, 80 patients with the PHR and 97 without were interviewed. Of the 83 health professionals caring for patients known to have received the PHR 63 replied to a postal questionnaire. MAIN OUTCOME MEASURES: Subjective views of patient satisfaction with communication and perception of communication between patient and health care professionals as determined by structured interview at baseline and after 4-6 months. RESULTS: We could identify no improvement in the provision of information to patients, or patients' satisfaction with information provided by outpatient doctors, GPs, practice and community nurses and hospice or palliative home care staff. Overall, patients' perception of communication between all staff involved in their care with and without PHRs was excellent in 24% and 21 %, respectively, or very good in 56% and 58% (P=0.89). The PHR made no difference to information passing between health professionals, or to the degree of family involvement. Most of those who had a record found it of some use and benefit. CONCLUSION: This study provides no evidence on which to base the widespread promotion of PHRs, although local projects with committed clinicians and patients may well prove popular and effective.     

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.     

Developing a successful palliative care service in an acute care setting

Hospitalized patients with chronic illness require the same aggressive symptom management as those of hospice patients. Unfortunately, many individuals with chronic conditions require aggressive symptom management but they are not candidates for hospice admission. The authors discuss a palliative care service developed in a 371-bed community hospital to address this need. This consult service has improved patient care without draining hospital resources.     

A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.     

社区护士临终关怀知识和态度情况调查及其影响因素研究

目的:了解社区护士临终关怀知识和态度的情况,研究不同背景护士临终关怀知识与态度的差异。方法:通过问卷对6所社区卫生服务中心的211名护士进行调查。结果 :仅19.0%的社区护士对临终关怀知识的掌握程度达到良好;社区护士临终关怀态度的得分处于中等水平。社区护士临终关怀知识的掌握情况与其学历、职称、工作年限有关(P<0.05),而临终关怀态度则与其学历、工作年限、收入、宗教信仰、民族、职称有关(P<0.05)。结论:通过加强社区护士临终关怀基础教育及继续教育,可帮助其具备更专业的临终关怀知识、技能及良好的心理素质,以促进我国临终关怀的发展。     

Goal setting as a measure of outcome in palliative care

Setting goals and assessing outcomes are essential elements in palliative care. This paper describes a multiprofessional project, conducted under the auspices of clinical audit, which attempted to evaluate important outcomes of care. Over a six-month period there were 123 consecutive admissions to the hospice. These patients and their carers, as well as the staff, were encouraged to set explicit goals for, and evaluate outcomes of, their care. As anticipated, we encountered many difficulties in this, but there were benefits. We were able to record goals of admission from the patient in 97 cases (79%), their main carer in 74 cases (63%) and from hospice staff in 120 cases (98%). Patient and carer goals were often more functional and specific whereas the staff goals tended to be more problem or symptom focused. The achievement of these goals was evaluated by patients, carers and staff at discharge or death (where possible) with the majority being fully or partially met. Only 15 patients and 9 carers thought that some or all of their goals had not been achieved with just 4 recording that their goals had changed. Overall, it was a worthwhile (although time-consuming) exercise and, as a result of the 'audit', clear goals and outcomes from patient, carer and staff perspectives are now routinely recorded for all admissions to the hospice and are used to focus multiprofessional patient review. Having analysed the process as well as the results of the 'audit', we would encourage others not to be daunted from undertaking similar projects.     

Listening to the parent voice to inform person-centred neonatal care

Family integrated care (FIC), where parents are an integral part of their baby's care and decision-making can enhance parental involvement and empowerment, contributing to decreased parental separation and stress. It follows that parents can also be a central part of neonatal education for staff in the neonatal speciality. This paper focuses on what students and staff can learn from parents about what they feel is important to make their experience better. A narrative, interpretive approach was undertaken to collect and analyse parent interview narratives. A specific question was posed to a purposive sample of parents who have had premature babies about what health professionals can learn from them. Thematic analysis revealed five key themes relating to the importance of: communicating; listening; empathising; acknowledging (the parent's role); realising (what matters to parents). These elements were incorporated into a framework named by the mnemonic, ‘CLEAR’. This highlights what parents want staff to be cognisant of when caring for them and their babies. Learning from the parents in our care enables a greater understanding of their experiences at difficult and challenging times. Having a deeper understanding of parents' experiences can contribute to enhanced empathic learning.