Living with terminal illness: patient and family experiences of hospital end-of-life care

AIM: The study explored terminally ill patients' and their families' experiences of hospital end-of-life care. DESIGN: A qualitative approach--interpretive phenomenology--was applied prospectively. Sample and setting. Ten patients and their closest family members were recruited in one Swiss university hospital. METHODS: Data collection included repeated observations, conversations with patients, and interviews with family members. FINDINGS: People led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients' and families' sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life. CONCLUSIONS: The experience of being in the hospital cannot be separated from patients' and families' life stories.     

Impediments to communication in transition to terminal illness

Viewing themselves in two hypothetical roles—as terminal patients and as family members related to a terminal patient—48 adults were surveyed on their expectations and preferences about how information should be communicated when a terminal illness is first diagnosed. Identifying with the patient role, respondents believed patients should be told the truth immediately and unconditionally. In contrast, respondents indentifying with family members perceived conditions under which the rights of patients should be abridged. In this latter role, male respondents were significantly less likely than males to imagine themselves as able to inform a loved one about a terminal illness. Nevertheless, for both sexes, early childhood experiences communicating about death and dying were found to be a better predictor of the ease with which respondents can imagine communicating with a terminally ill loved one than are current adult attitudes and experiences. Regardless of personal ease in discussing death, however, most respondents thought the physician, not family members or other health care professionals, should decide when and how the terminally ill adult should be informed—a noteworthy finding in light of the fact that 83 percent of all respondents consider physicians poorly equipped for this role.     

The many roles of families in family-centered care--part V. Interview by Deborah Dokken

This article, the fifth of six in a series on roles for family members in family-centered care, focuses on the role of parents as educators of clinicians in the health care system. Two interviews highlight this role. The director of family services at a pediatric hospital, a parent of a child who suffered with a chronic illness, offers suggestions for institutions wanting to further develop this key role. This includes involving patient and family advisors at the "front end" of any initiative or new project; identifying champions (clinical staff, administrators, and patients/family members) for these roles within the institution; preparing family members for the educator role; following-up with thanks and feedback; and tracking successes of projects in which patient and family advisors participate. The father interviewed in this article describes the sense of fulfillment he experiences from teaching health care providers about child and family needs and the emotional side of care. He urges all parents to recognize the important education they can offer professionals when they both ask questions and share about their own child and family.     

Fathers struggling for relevance in the care of their terminally ill child

Children with terminal illness receive substantial amounts of care from their parents within their home, a palliative care facility or general hospital. Whilst there is a long history of research exploring child and family experiences and coping styles within these settings, the focus has not been on fathers' participation in care-giving. This phenomenon can be explained by traditional sex-role socialisations whereby men are ostensibly conditioned as breadwinners and mothers remain embedded as the primary carers for children, particularly when illness arises. Nevertheless, nurses report that men do provide direct care-giving or seek to be more involved in caring for their child. This literature review offers opportunities for health professionals to reflect on the significance of gender in parenting the terminally ill child and to develop empathy for men experiencing difficulties in their role as care-givers. As there is little literature available on this topic, this paper portrays men's experiences and importantly the barriers they encounter in meeting their desire to care. The approach provides a suitable basis for developing a research agenda to promote competencies and relevance for fathers in their role as care-giver.     

A multicase study of prolonged critical illness in the intensive care unit: Families’ experiences

BackgroundIt is widely acknowledged a critical illness is a stressful life event for not only the patient but also their family members; when an illness becomes prolonged, the impact is profound. It is suggested that as medical technologies advance, the number of days patients stay in an intensive care unit will increase. Therefore, it is important nurses understand how families experience a prolonged critical illness of their family member in an intensive care unit.ObjectiveTo explore the trajectory of a prolonged critical illness in the intensive care unit from the experiences of family.MethodsA qualitative, longitudinal, multi-case design consisting of six cases from New Zealand intensive care units. Findings presented in this article only relate to the family’s experiences, although patients and healthcare professionals formed part of each case. Data collection methods included observation, conversations, interviews and document review. Analysis was undertaken using thematic analysis, vignette development and trajectory mapping.FindingsRelentless uncertainty dominated all phases of the trajectory for the family during a family member’s prolonged critical illness in the intensive care unit. When faced with a critical illness, family shifted rapidly into a world of unknowns. Family worked hard to navigate their way through the many uncertainties that dominated each phase of their family member’s illness.ConclusionsNurses need to understand the levels of uncertainty families endure in order to provide care that meets the philosophical underpinnings of family centred care.     

家属参与老年癌症患者住院护理的活动及影响因素

目的探讨中国文化背景下家属参与老年癌症患者住院护理的各种活动、意愿及影响因素.方法运用描述性和定性的研究方法,通过访谈和观察的方式收集资料.收集到的资料采用定性分析方法分析.结果①家属参与老年癌症患者的住院护理活动表现在对患者的心理情绪支持、饮食营养护理、舒适护理、活动和安全护理、治疗相关的护理、经济及过渡期护理六个方面.②家属的参与使患者获得安全感和归属感,得到更细心、耐心和周到的照顾,并在一定程度上保护了自尊和隐私.家属在参与护理中表达自己的爱与关怀,满足了亲近患者的需要以及使患者获得舒适和安慰的需要.结论①家属参与住院护理是患者和家属的共同意愿,应重视家属在住院护理中的作用.②护理人员应该考虑患者及其家属的感受和期望,满足多元需求,为家属提供参与护理的机会.     

健康教育减轻肝癌病人家属焦虑的研究

目的 :探讨健康教育减轻肝癌病人家属焦虑的效果。方法 :将首次住院的肝癌病人的家属181例 ,随机分为健康教育组 94例 ,对照组 87例 ,在入院时进行SAS量表和EPQ量表评分。护士按医院例行方式与对照组家属接触 ,健康教育组则由护士给予肝癌相关知识、家庭护理常识等健康教育 ,出院前对两组家属再次进行SAS评分。结果 :健康教育组出院前焦虑程度明显低于入院时 (P <0 .0 1) ,且焦虑减轻程度明显大于对照组 (P <0 .0 1) ;健康教育组中女性家属 ,对肝癌了解程度较低的家属和具有不稳定型人格特征的家属出院前焦虑减轻程度分别大于男性家属(P <0 .0 1)、对肝癌了解程度较高的家属 (P <0 .0 1)和具有稳定型人格特征的家属 (P <0 .0 1)。结论 :健康教育能不同程度地减轻肝癌病人家属的焦虑 (尤其是女性 )以及对肝癌了解程度较低和具有不稳定型人格特征家属的焦虑 ,提高他们对肝癌的认识和家庭照料水平 ,有利于家属的身心健康和病人的康复     

Music in human terminality: the family members' conceptions

This qualitative study was performed using the multiple case study method and Heidegger's existential phenomenology for data analysis. The objective was to understand how family members perceive the influence of musical experiences on the physical and mental health of a relative living with a terminal illness. Participants were seven individuals belonging to two families. Data collection was performed through interviews and observation from May to June 2009. Results showed that using music while providing care to beings living with cancer can provide well-being to patients as well as their caregivers. Considering the deficit of leisure and the monotony of the home environment, using music contemplates the philosophical and humanitarian precepts of palliative care, thus being characterized as a complementary resource to nursing care, as besides being a communication resource, it improves the interpersonal relationship between patients and their families.     

A model to help nurses caring for patients who are terminally ill

In an age when people are no longer automatically dying from serious illnesses such as cancer or heart disease, patients, families and health-care staff may find coping with a terminal illness difficult. A multidisciplinary team in one hospital used Moos' transitional model, which describes adaptive and coping techniques, in their care of a dying man and his family.     

The method of nursing support in hospital and patients' and family members' experiences of the effectiveness of the support

Nurses are an important source of support for patients and family members during hospitalization. It is unclear, however, what kinds of support methods are used in hospitals and how the support affects the patient and family member(s). This study describes methods of nursing support in hospital and adult patients' and their family members' experiences of this support. The data were collected in spring 2009 through essays written by and group interviews with nurses (n = 11) working at a Finnish university hospital. The data from patients (n = 9) and family members (n = 7) were collected in individual and group interviews. The material was interpreted by inductive content analysis. In their interaction with patients and family members, the hospital nurses used the methods of emotional and informational support. Patients' and family members' experiences of the effectiveness of this support were related to the establishment of a care relationship, their future outlook, mental well‐being and experiences of getting well. The evidence from this research will be useful in developing methods of nursing support for patients and family members and family‐oriented care in hospital.     

Unidentified communication challenges in the intensive care unit: A qualitative study using multiple triangulations

BackgroundCommunication in the intensive care unit is challenged by patients’ inability to speak owing to intubation, treatment, and illness. Research has focused on the use of communication tools or techniques, characteristics of the communication between patients and clinicians, and their experiences of communication challenges. However, few studies have combined the perspectives of patients, family members, and clinicians. We explored communication from different angles and investigated challenges that cannot be explained by ineffective use of aids and communication techniques.ObjectivesThe aim of this study was to explore communication between patients, family members, and nurses and to investigate previously unidentified communication challenges.MethodsThis study used a case-oriented design with multiple triangulations. It was conducted in two general intensive care units at a Norwegian university hospital. Participant observations were conducted on nine mechanically ventilated patients while communicating with family members and healthcare personnel. Following the observations, individual interviews were conducted with six patients, six family members, and nine healthcare personnel.FindingsCommunication often seemed uncomplicated at the time of observations, but information from the interviews revealed another picture. We demonstrate what participants emphasised differently when they discussed their experiences, revealing a discrepancy in perceived importance in the situation. Family members had an important role in interpreting signs from the patient, uncovering challenges that would have been unknown to the nurses otherwise.ConclusionsThis study illustrates how communication challenges in the intensive care unit may not be perceptible to an observer or to all of the participants involved at the time of the communication. Nurses need to be aware of these communication challenges and realise that the patient might face issues that cannot be easily solved without extensive involvement of the patient, family, and nurses, and perhaps not even until a later stage in the patient's recovery process.     

Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea

Goals of work This study examined cancer patient and family member preferences—and the reasons for the preferences—regarding place of terminal care and of death.Patients and methods We constructed a questionnaire that included demographic, clinical, and support network data for 371 patients who were treated at any of the seven university hospitals or the National Cancer Center in Korea and 281 of their family members.Main results About half of the interviewed patients and half of the family members expressed a preference for the patient being cared for and dying at home. The preference reflected a wish for patients to live out their lives in privacy and to be with their family when their life ended. Those who expressed a preference to be cared for or to die in a hospital wanted to get medical treatment during the last days of life and to relieve their families of the burden of caring for them. Of the variables examined, support network factors and some sociodemographic factors (sex, family members age, and place of residence) were strongly predictive of preferences.Conclusion A majority of cancer patients preferred to receive terminal care at home. Cancer patients and family members with strong support groups were more likely to prefer the home as the place of terminal care and dying. Hence, improving support networks might increase the proportion of patients receiving home care and dying at home.     

Resisting vulnerability: the experiences of families who have kin in hospital-a feminist ethnography

Health care restructuring, in an effort to control costs, has resulted in marked organizational change with concomitant influences on nursing practice in the hospital and community contexts. Such changes have resulted in increased levels of acuity among patients and shorter hospital stays. As a consequence, families are being asked to assume greater roles in illness care of family members. At the same time societies and therefore patient populations are becoming increasingly culturally and linguistically diverse. Yet, little is known about hospitalization and help-seeking practices of family caregivers in an ethnoculturally diverse context and the nature of support they require from the health care system. This paper addresses this gap in knowledge. Here we draw upon data gathered in two ethnographic studies of illness care and help-seeking practices in an enthoculturally diverse community. Analysis of family data identified 'resisting vulnerability' as a process central to the families' experiences. This paper examines the process of resisting vulnerability and how it was influenced by the practices of health care professionals and structures of the health system. Implications for practice are discussed.     

Being in the hospital: An interpretive phenomenological study of terminally ill cancer patients’ experiences

This article describes a study exploring terminally ill cancer patients’ experiences of being in hospital and the meanings patients assigned to the hospital as their temporary residence. Ten patients and their closest family members participated in this interpretive phenomenological study during the patients’ hospitalization. Data were collected in a public tertiary hospital in Switzerland. Patients’ care was observed and participants were interviewed repeatedly. Data analysis included thematic analysis as well as searching for paradigm cases and exemplars. Patients described their existence in the hospital on a continuum from “prison” to “heaven.” For most of their stay, patients occupied some place between these extremes and could be called “guests of necessity” who accepted the hospital as necessity but were longing for home. The quality of hospital life was not constant rather, patients’ experiences were transitory and some faded away. The study revealed an aspect hitherto undescribed in the literature: patients’ experiences of the hospital as a temporary residence. Its findings can heighten health care professionals’ awareness of patients’ experiences. Recognizing patients’ perspectives regarding the hospital as their temporary living place will allow professionals to individualize patient care.     

The shift to early palliative care: a typology of illness journeys and the role of nursing

For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.     

Loss and terminal illness

The experience of terminal illness can best be viewed as a situation of multiple losses involving the dying person, family members and friends, and the health care providers engaged in offering services to them. It is a major transition during which the central participants must cope with the personal meanings of the forthcoming death as well as other losses brought about by the disease process, medical treatments, and the need to provide care for the dying person. How families adapt to the stresses and changes imposed by the experience of living with dying depends on their previous experiences with death, their established patterns of communication about serious matters, and their decision-making practices. Some individuals and families are at greater risk than others for developing maladaptive responses and behaviors during and after the experience of terminal illness. Risk factors to be considered in making hypotheses about the potential for maladaptive reactions include the strength of the attachment to the dying person, uncontrollable and distressing symptoms, and coping limitations associated with age and other factors contributing to increased vulnerability to the demands of continuous change. Working effectively with different kinds of families during the transition of terminal illness can best be accomplished within a conceptual framework built upon knowledge about people undergoing change. The concept of safe conduct can serve as an overall guide for the creation of nursing services designed to offer personalized care and accessibility of professional help at times of maximum need by the family. Assisting dying patients and their families toward the achievement of their personal goals is fundamental to the idea of safe conduct. The delivery of nursing care in terminal illness requires an orientation to assessment as an ongoing process that makes use of knowledge about disease processes, medical treatments, individual and group adaptations to loss, risk factors suggestive of maladaptive responses, and family dynamics in relation to crisis and change. Although nurses bring expert knowledge about available treatments and resources, the process of assessment and decision-making about what needs to be done can be best accomplished through a process of contracting with the patient and family. These mutual agreements need to be concerned with the establishment of specific goals, plans for achieving them, available resources within the family, division of responsibility, time limits on the achievement of objectives, and mutual evaluation of the process and the outcomes.(ABSTRACT TRUNCATED AT 400 WORDS)     

Coronary heart disease in Asian Indians: perspectives of family members

Despite the high prevalence rate and significant mortality and morbidity from coronary heart disease in Asian Indians (irrespective of their religious background), very few studies have reported on family members' experiences of caring for a person with coronary heart disease. This paper reports on family members' experiences of coronary heart disease in Asian Indians residing in Australia, and is part of a larger study that explored the experiences and/or understanding of coronary heart disease in Asian Indians from the perspective of patients, family members and 'healthy' participants. Using a constructivist approach semi-structured in-depth interviews were conducted with five family members. Findings are represented under the following main categories: 1. A period of complexity for family members; 2. Indian Culture: Its influence on health/health behaviour & illness experience; 3. Impact of migration and societal discrimination; 4. Disappointment with health care services and the health system; and 5. Strategies to prevent cardiac illness and attain optimal health. Cultural factors had both positive and negative influences not only on the illness experience but also on health behaviour and attitude. The impact of Indian culture in relation to coronary heart disease needs to be understood not only at the cultural level by providing culturally sensitive health care, but also by educating Asian Indians to change their health attitude and behaviour and improve their lifestyle. Asian Indians need education and advice to become more resilient and adaptable to a Western society and also to become aware of the acculturative effects of a Western lifestyle.     

Putting the ‘patient’ back into patient-centred care: An education perspective

Patient-centred care is a value espoused by most healthcare systems and a concept taught in nursing education programs as a fundamental concept of patient care. In this study, we focused on the patient's experience of patient-centredness, interviewing eighteen patients and eight family members about their experiences as patients on an in-patient acute care medical unit in a large hospital in Canada. Approximately half of the patients expressed satisfaction with their experiences and their involvement in decisions about their healthcare. The remainder expressed concerns about their care that jeopardized their experiences of patient-centredness. These areas concerned issues of communication with and among healthcare professionals, relationships with these care providers, trust and respect in the professional relationships, and general satisfaction with care. Participants provided advice to professional students about ways to interact more effectively with their patients to establish caring, empathetic, patient-centred relationships as the basis for care. We address patient recommendations to support learner understanding of the patient experience both in classrooms and clinical experiences throughout educational programs as a means to enhance their patient-centredness.     

Does palliative care improve quality? A survey of bereaved family members

Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.