Entering a World with No Future: A phenomenological study describing the embodied experience of time when living with severe incurable disease

Scand J Caring Sci; 2013; 27; 165–174 A phenomenological study describing the embodied experience of time when living with severe incurable disease This article presents findings from a phenomenological study exploring experience of time by patients living close to death. The empirical data consist of 26 open‐ended interviews from 23 patients living with severe incurable disease receiving palliative care in Norway. Three aspects of experience of time were revealed as prominent: (i) Entering a world with no future; living close to death alters perception of and relationship to time. (ii) Listening to the rhythm of my body, not looking at the clock; embodied with severe illness, it is the body not the clock that structures and controls the activities of the day. (iii). Receiving time, taking time; being offered – not asked for – help is like receiving time that confirms humanity, in contrast to having to ask for help which is like taking others time and thereby revealing own helplessness. Experience of time close to death is discussed as an embodied experience of inner, contextual, relational dimensions in harmony and disharmony with the rhythm of nature, environment and others. Rhythms in harmony provide relief, while rhythms in disharmony confer weakness and limit time.     

A comprehensive picture of palliative care at home from the people involved

The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.     

Predictive factors for home deaths among cancer patients in Swedish palliative home care

Five palliative home care teams participated in a prospective Swedish study that included 221 palliative cancer patients. All patients with incurable malignant disease that were admitted and died during 1999 were included. On admission, demographic data were recorded. When patients, despite ongoing home care, were referred to institutional care, doctors and nurses involved were interviewed about the reasons for this. After the patients' death next of kin involved in the care were interviewed according to a questionnaire. Approximately half of the patients died at home. The reasons for referral showed a wide diversity and included both social and psychosocial factors, medical emergencies and problems related to symptom control. A preference for dying at home and not living alone were shown to be the strongest predictors of home death (p = 0.001). However, 35% of patients living alone died at home. Interestingly enough, Karnofsky performance index (KPI) at admission was significantly lower for those dying at home, despite similar mean time of care. The understanding of impending death was significantly more common among the families of those patients dying at home.     

Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study

BACKGROUND: Old people's life situation when receiving municipal help and care in their last period of life is sparsely investigated from their own perspective. OBJECTIVE: The aim of this study was to investigate the experiences of aspects that bring about a good life in the last phase of life among people (75+ years) receiving municipal care. PARTICIPANTS: Older people living in a municipality in Southern Sweden being 75 years or older, receiving help and/or care from the municipality, and having a life-threatening disease and/or receiving palliative care were asked to participate. In all 17 people, 10 women and 7 men, aged 78-100 years were included. METHODS: Qualitative interviews, with the emphasis on their present life situation especially what brought about a good life, were performed. The interviews were analysed using qualitative content analysis. RESULTS: The experience was interpreted to be Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life: Maintaining dignity, Enjoying small things, Feelings of "being at home", Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death. CONCLUSION: This study confirm theories suggesting that the last phase of life in old age meant focusing inwards, reflecting on the entire life as a way of completing it as well as enjoying small things and also viewing oneself in the perspective of contributing to the future. It also indicated that this phase of life meant being trapped by health complaints and functional limitations. The struggle to maintaining dignity as opposed to being in the hands of others implies that the concept of palliative care may be useful as a framework for providing nursing care to very old people, especially at the end of life.     

The meaning of the lived experience of hope in patients with cancer in palliative home care

The aim of this study was to illuminate the meaning of the lived experience of hope in patients with cancer in palliative home care. Narrative interviews with 11 patients were interpreted using a phenomenological-hermeneutic method, inspired by Ricoeur. The findings revealed a tension between hoping for something, that is a hope of getting cured, and living in hope, that is reconciliation and comfort with life and death. This tension is highlighted, according to the views of the French philosopher Gabriel Marcel, as a state of 'recollection'. The interviewees told of the hope of living as normally as possible and of the experience of confirmative relationships as dimensions of their lived experience of hope. These findings show that hope is a dynamic experience, important to both a meaningful life and a dignified death, for those patients suffering from incurable cancer.     

Essence of caring for a person dying

The present paper aims to illustrate the essence of caring through the philosophical lens of palliative care gained from one family's experience within a home environment. The narrative used provided a vehicle through which a family member recalled the experience of caring for her mother, who was dying. The essence of caring is portrayed by the use of exemplars gained from the narrative situated within a palliative context depicting both the person dying and the carer's perspective. The narrative offers the opportunity to better understand cultural knowledge, history and social practices from the perspective of the family unit, and to understand how families might be best supported by health professionals engaged in care delivery. The commitment demonstrated by family members in caring for a family member dying is significant and needs to be more valued as a contribution to our understanding of this life event. From the analysis of this family's experience, health professionals are afforded an insight into the diversity of needs that encompass the essence of care being provided in the home. This opportunity allows health professionals to gain further insight into this significant life event, leading to an enhancement of their practice and enabling them to be better equipped to meet the individual needs of family units.     

Japanese people's preference for place of end-of-life care and death: a population-based nationwide survey

Context

Japanese people's preferred place of end-of-life care may be affected by their experiences, perceptions, and knowledge related to the end of life.

Objectives

The aims of this study were to clarify the Japanese population's preferences for the place of end-of-life care and death and to identify the determinants of each choice of preferred place of end-of-life care within their experiences, perceptions, and knowledge.

Methods

A total of 2000 Japanese people aged 40–79 years participated in a cross-sectional nationwide survey.

Results

Fifty-five percent (n = 1042) responded. Regarding place of end-of-life care, approximately 44% of the general population preferred home, 15% preferred hospital, 19% preferred palliative care unit, 10% preferred public nursing home, 2% preferred private nursing home, and the remaining 11% was unsure. Multinomial logistic regression analysis revealed that the following factors affect people’s preferences regarding place of care: 1) experiences, such as “visiting hospital regularly” and “experiencing home death of relatives,” 2) perceptions, such as “giving due thought to their own death on a daily basis” and “perceiving lower home palliative care costs to be appropriate after comparing hospital admission fees,” and 3) knowledge of “home care nursing” and “24-hour home palliative system by physicians and nurses using insurance.” These factors correlated with preference for hospital, palliative care unit, or public nursing home, when compared with the preference of home.

Conclusion

The present findings may help to develop an effective end-of-life care system in Japan, in line with people’s various preferred locations for such care.     

Transition towards end of life in palliative care: an exploration of its meaning for advanced cancer patients in Europe

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.     

Being in a lived retreat--embodied meaning of alleviated suffering

Meanings of alleviated suffering in persons living with life-threatening cancer are explored in this life-world phenomenologic study. In repeated conversations, 16 patients with cancer who were receiving palliative care shared their embodied experiences in personal narratives. When interpreting the narratives, the following meanings of experiencing alleviation of suffering were disclosed: an endurable body being independent and feeling at home, feelings of connectedness, taking a long view of the suffering, being lifted out of the suffering, and an inner peace. Movements that were found in alleviation were dampening the suffering, arousing a zest for life, and focusing on both the present and the patient's dignity. As an interpreted whole, alleviation of suffering was found to be an embodied experience of "being in a lived retreat." This is a symbolic place owned by the person and is experienced in either the company of others or solitude. This lived retreat can provide a feeling of being at home, creating peace, rest, confidence, and breathing space in the person's suffering. It means coping with the altered lived body and feeling dignified. This is a personal experience that is both intersubjectively created and dependent. The importance of openness and responsibility in palliative care is emphasized in the findings and the notion of control of suffering in palliative care is accordingly rejected.     

Quality of life of cancer patients receiving inpatient and home-based palliative care

AIMS: This paper reports a comparative study of the symptom experience, physical and psychological health, perceived control of the effects of cancer and quality of life of terminally ill cancer patients receiving inpatient and home-based palliative care, and the factors that predict quality of life. BACKGROUND: Quality of life is a major goal in the care of patients with terminal cancer. In addition to symptom management, psychological care and provision of support, being cared for at home is considered an important determinant of patient well-being. A more comprehensive understanding of the impact of cancer on patients and their families will inform the delivery of palliative care services. METHODS: Fifty-eight patients with terminal cancer (32 inpatients, 26 home-based) were recruited from major palliative care centres in Australia in 1999. A structured questionnaire designed to obtain sociodemographic information, medical details and standard measures of symptoms, physical and psychological health, personal control and quality of life was administered by personal interview. RESULTS: The two groups were similar on most demographic measures, although more home-care patients were married, of Australian descent and had private health insurance cover. The most prevalent symptoms reported were weakness, fatigue, sleeping during the day and pain. Patients receiving home-based services had statistically significantly less symptom severity and distress, lower depression scores, and better physical health and quality of life than those receiving inpatient care. Home-care patients also reported statistically significantly more control over the effects of their illness, medical care and treatment received, and the course of the disease. Multiple regression analyses showed that better global physical health, greater control over the effects of cancer and lower depression scores were statistically significant predictors of higher quality of life. CONCLUSIONS: The main issues arising from the findings for nurses are the early detection and management of both physical and psychological symptoms, particularly fatigue, pain, anxiety and depression, and the need to use strategies that will empower patients to have a greater sense of control over their illness and treatment. Research is needed to identify other factors that may impact on quality of life, and to establish the extent to which inpatient and home-based care meets the needs of both the patient with terminal cancer and their family.     

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners

Scand J Caring Sci; 2012; 26; 587–597 ‘Mastering an unpredictable everyday life after stroke’– older women’s experiences of caring and living with their partners Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce. Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications. Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67–83), participated in four focus group discussions, which each met once for not more than 2 hours. Findings: The discussions resulted in one comprehensive theme; ‘Mastering an uncertain and unpredictable everyday life’. Three subthemes emerged from the material: ‘Living with another man’ where the carers discussed not only the marked change in their partner’s personality, but also the loss of a life‐companion and their mutual intellectual contact; ‘Fear of it happening again’, comprising the carers’ experiences of fear and confinement, of always having to be ready to help and of being trapped at home; ‘Ongoing negotiation’, referring to the carers’ struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves. Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers’ need for time to themselves, a greater knowledge of stroke and continuous support from formal care.     

Determinants of the Place of Death in the Brussels Metropolitan Region

The place where people die is not only considered an indicator of quality of death, but also has implications for health care costs and the organization of end-of-life care. Advancing urbanization, combined with social fragmentation, poor social conditions, and concentration of inpatient care in large cities make it relevant to study the place of death in a metropolitan context. The objective of this article is to examine determinants of place of death (home, care home, hospital) in a Belgian metropolitan region (Brussels) for patients suffering from chronic diseases eligible for palliative care. Using death certificate data, we describe place of death and associated factors for all deaths after chronic diseases in 2003 in Brussels (n = 3672). Of all chronically ill patients, 15.1% died at home, 63.0% in hospital, and 21.6% in a care home. Of those residing in care homes, 23.8% died in hospital. Noncancer patients and residents of districts with higher socioeconomic status had a higher chance of dying at home or in a care home if they resided in one. Home death was also more likely for patients not living alone. Care home death was more likely with increasing age. Compared with other parts of Belgium and other big cities worldwide, few patients eligible for palliative care in Brussels died at home. Both the overall low proportion of people dying in familiar surroundings and the inequality between different districts in Brussels imply that a health policy aiming at facilitating dying in the place of choice might also need to develop specific approaches for metropolitan cities.     

Symptoms in patients receiving palliative care: a study on patient-physician encounters in general practice

Most people with an incurable disease prefer to stay and die at home, cared for by their general practitioner (GP). This paper aims at describing the prevalence of symptoms in patients receiving palliative care at home. Within the framework of a nation wide survey of general practice in the Netherlands, GPs received a questionnaire for all patients who died within the 1-year survey period to determine whether patients received palliative care (n = 2,194). The response rate was 73% (n = 1,608), and 38% of these patients received palliative care until death. Information regarding encounters during the last 3 months of life was derived from the records kept by the GPs. Digestive symptoms (59%) and pain (56%) were the most prevalent. The total number of symptoms per patient was higher in cancer patients (11.99) than in non-cancer patients (7.62). Not reported in previous studies were musculoskeletal symptoms (20%) and chronic ulcer (18%). Concluding, this showed that Dutch GPs encounter a diversity and wide range of symptoms in palliative care. To face these complex challenges in patients receiving palliative care at home, GPs have to be trained as well as supported by specialized palliative care consultants.     

Palliative care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.     

Quality of death: a dimensional analysis of palliative care in the nursing home

Palliative care in nursing homes is increasingly discussed, investigated, and implemented, yet the term lacks conceptual clarity and definition. Furthermore, the components, process, and outcomes of palliative care as it is delivered in the nursing home have not been clearly articulated. This paper provides a dimensional analysis of palliative care in the nursing home to elucidate the concept and its context and consequences, as portrayed through available literature. As a method, dimensional analysis is rooted in symbolic interaction and grounded theory. As such, it provides a useful tool with which to analyze existing literature on palliative care in the nursing home. In this dimensional analysis, communication is the dominant perspective of palliative care in the nursing home. This analysis demonstrates that the consequences of palliative care in the nursing home are personhood and identity, and quality of death rather than quality of life. These consequences suggest that the focus of palliative care should be on the nursing home resident and the dying experience, rather than quality of life and issues around living that exclude the dying experience and do not acknowledge the personhood and identity of the resident. These elements represent a shift in focus away from one that does not include death, toward the dying experience, and that such a change in focus is necessary to achieve palliative care in the nursing home. Finally, the analysis elucidates potential outcome measures for the study of palliative care in nursing homes and outlines possibilities for further research.     

Living with severe chronic heart failure in palliative advanced home care.

BACKGROUND: Living with severe chronic heart failure (CHF) in palliative care has been little studied. AIM: The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives. METHODS: Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. RESULTS: Meaning of living with severe CHF in palliative advanced home care emerged as 'knocking on death's door' although surviving. The course of the illness forces one to live a 'roller coaster life,' with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the 'roller coaster' by the palliative advanced home care team evokes feelings of security. CONCLUSIONS: Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.