41 research outputs found
Clinical essentialising: a qualitative study of doctors’ medical and moral practice
While certain substantial moral dilemmas in health care have been given much attention, like abortion, euthanasia or gene testing, doctors rarely reflect on the moral implications of their daily clinical work. Yet, with its aim to help patients and relieve suffering, medicine is replete with moral decisions. In this qualitative study we analyse how doctors handle the moral aspects of everyday clinical practice. About one hundred consultations were observed, and interviews conducted with fifteen clinical doctors from different practices. It turned out that the doctors’ approach to clinical cases followed a rather strict pattern across specialities, which implied transforming patients’ diverse concerns into specific medical questions through a process of ‘essentialising’: Doctors broke the patient’s story down, concretised the patient’s complaints and categorised the symptoms into a medical sense. Patients’ existential meanings were removed, and the focus placed on the patients’ functioning. By essentialising, doctors were able to handle a complex and ambiguous reality, and establish a medically relevant problem. However, the process involved a moral as well as a practical simplification. Overlooking existential meanings and focusing on purely functional aspects of patients was an integral part of clinical practice and not an individual flaw. The study thus questions the value of addressing doctors’ conscious moral evaluations. Yet doctors should be aware that their daily clinical work systematically emphasises beneficence at the expense of others—that might be more important to the patient
Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care
BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised
Older adults' beliefs about physician-estimated life expectancy: a cross-sectional survey
BACKGROUND: Estimates of life expectancy assist physicians and patients in medical decision-making. The time-delayed benefits for many medical treatments make an older adult's life expectancy estimate particularly important for physicians. The purpose of this study is to assess older adults' beliefs about physician-estimated life expectancy. METHODS: We performed a mixed qualitative-quantitative cross-sectional study in which 116 healthy adults aged 70+ were recruited from two local retirement communities. We interviewed them regarding their beliefs about physician-estimated life expectancy in the context of a larger study on cancer screening beliefs. Semi-structured interviews of 80 minutes average duration were performed in private locations convenient to participants. Demographic characteristics as well as cancer screening beliefs and beliefs about life expectancy were measured. Two independent researchers reviewed the open-ended responses and recorded the most common themes. The research team resolved disagreements by consensus. RESULTS: This article reports the life-expectancy results portion of the larger study. The study group (n = 116) was comprised of healthy, well-educated older adults, with almost a third over 85 years old, and none meeting criteria for dementia. Sixty-four percent (n = 73) felt that their physicians could not correctly estimate their life expectancy. Sixty-six percent (n = 75) wanted their physicians to talk with them about their life expectancy. The themes that emerged from our study indicate that discussions of life expectancy could help older adults plan for the future, maintain open communication with their physicians, and provide them knowledge about their medical conditions. CONCLUSION: The majority of the healthy older adults in this study were open to discussions about life expectancy in the context of discussing cancer screening tests, despite awareness that their physicians' estimates could be inaccurate. Since about a third of participants perceived these discussions as not useful or even harmful, physicians should first ascertain patients' preferences before discussing their life expectancies
What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care
Background: Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers. Methods: In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer. They were recruited from general practices and hospice day care, when the responsible health professional answered no to the question, of whether they would be surprised if the patient died within twelve months. Twenty participants lived alone. Interviews were recorded and transcribed and the data analysed using a Framework approach, focussing on the differences and commonalities between the two groups. Results: Many experiences were common to all participants, but had broader consequences for people who lived alone. Five themes are presented from the data: a perception that it is a disadvantage to live alone as a patient, the importance of relational continuity with health professionals, informal appraisal of care, place of care and future plans. People who lived alone perceived emotional and practical barriers to accessing care, and many shared an anxiety that they would have to move into a care home. Participants were concerned with remaining life, and all who lived alone had made plans for death but not for dying. Uncertainty of timescales and a desire to wait until they knew that death was imminent were some of the reasons given for not planning for future care needs. Conclusions: Older people who live alone with cancer have emotional and practical concerns that are overlooked by their professional carers. Discussion and planning for the future, along with continuity in primary care may hold the key to enhancing end-of-life care for this group of patients
Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study
Abstract Background The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population. Methods Cognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies. Results Thirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and ‘undiagnosed’. Social and community frameworks were essential for supporting their well-being. Conclusions Multidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death
Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital
Objective: To understand how, on medical wards, judgements about capacity and best interests with respect to going home are made – in line with the Mental Capacity Act 2005 – for people with dementia and how decision-making around hospital discharge for people with dementia and their families might be improved.
Design: Ward-based ethnography. Observational data were captured through: detailed fieldnotes, in-depth interviews, medical-record review and focus groups. Themes and key issues identified using constant comparative analysis of 29 cases.
Participants: Theoretical sampling of key stakeholders, including patients with dementia (with and without residence capacity), their relatives and a range of practitioners from the multi-disciplinary teams providing health and social care.
Setting: Three hospital wards (acute and rehabilitation) in two hospitals within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009.
Results: Analysis highlights the complexity of judgements about capacity and best interests, along with the workings of the MCA, in relation to decisions about place of residence for people with dementia facing discharge from hospital. Five key themes emerged from data: the complexity of borderline decisions; the requirement for better understanding of assessment approaches in relation to residence capacity; the need for better documentation; the importance of narrative; and the crucial relevance of time and timing in making these decisions.
Conclusions: We need: more support and training for practitioners, as well as support for patients and families; clarity about the information to be imparted to the person with dementia; more advocacy for people with dementia; appropriate assessments embedded in routine clinical practice; the patient with dementia to be centre-stage in this decision-making; and properly resourced step-down or rehabilitation units to facilitate timely and good decision-making about place of residence