How should realism and hope be combined in physician-patient communication at the end of life? An online focus-group study among participants with and without a Muslim background

Objective: Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician-patient communications at the end of life. Method: During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: Patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis. Results: Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from hope for a cure to hope for a good death. Muslims specified the way they wished to receive realistic information: First from a relative, and not by using the term incurable illness, but rather by informing the patient that they had no remaining curative treatments available. Significance of results: Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication

Relating cause of death with place of care and healthcare costs in the last year of life for patients who died from cancer, chronic obstructive pulmonary disease, heart failure and dementia: A descriptive study using registry data

Background: The four main diagnostic groups for palliative care provision are cancer, chronic obstructive pulmonary disease, heart failure and dementia. But comparisons of costs and care in the last year of life are mainly directed at cancer versus non-cancer or within cancer patients. Aim: Our aim is to compare the care and expenditures in their last year of life for Dutch patients with cancer, chronic obstructive pulmonary disease, heart failure or dementia. Design: Data from insurance company Achmea (2009-2010) were linked to information on long-term care at home or in an institution, the National Hospital Registration and Causes of Death-Registry from Statistics Netherlands. For patients who died of cancer (n = 8658), chronic obstructive pulmonary disease (n = 1637), heart failure (n = 1505) or dementia (n = 3586), frequencies and means were calculated, Lorenz curves were drawn up and logistic regression was used to compare patients with high versus low expenditures. Results: For decedents with cancer and chronic obstructive pulmonary disease, the highest costs were for hospital admissions. For decedents with heart failure, the highest costs were for the care home (last 360 days) and hospital admissions (last 30 days). For decedents with dementia, the highest costs were for the nursing home. Conclusion: Patients with dementia had the highest expenditures due to nursing home care. The number of dementia patients will double by the year 2030, resulting in even higher economic burdens than presently. Policy regarding patients with chronic conditions should be informed by research on expenditures within the context of preferences and needs of patients and carers

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data

BACKGROUND: Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care. OBJECTIVES: To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge. METHODS: Health insurance data were combined with data from Statistics Netherlands on patients who mainly received care at home in the last 4 months of life. Patients who died from cancer (n = 3014), chronic obstructive pulmonary disease (COPD, n = 195) or heart failure (n = 171) were compared. RESULTS: First contact after hospital discharge was within 2 days for 51.7% of patients and within a week for 77.8% of patients. Patients who died from COPD or heart failure had contact less often than patients with cancer. Characteristics related to having contact within 2 days after discharge were older age, cause of death cancer, home death, timing of last hospitalization closer to death and contact with a locum in the week after discharge. CONCLUSION: Results may indicate that the GP is likely to visit patients with more care needs sooner. This would be in accordance with the finding that contact with the GP was more likely after a hospitalization closer to death and that contact within 2 days was related to contact with a locum within a week after discharge. Proactive care is necessary. This is a joint responsibility of GPs and medical specialists

How do treatment aims in the last phase of life relate to hospitalizations and hospital mortality? A mortality follow-back study of Dutch patients with five types of cancer

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Changes in the personal dignity of nursing home residents: a longitudinal qualitative interview study

Most nursing home residents spend the remainder of their life, until death, within a nursing home. As preserving dignity is an important aim of the care given here, insight into the way residents experience their dignity throughout their entire admission period is valuable. To investigate if and how nursing home residents' personal dignity changes over the course of time, and what contributes to this. A longitudinal qualitative study. Multiple in-depth interviews, with an interval of six months, were carried out with 22 purposively sampled nursing home residents of the general medical wards of four nursing homes in The Netherlands. Transcripts were analyzed following the principles of thematic analysis. From admission onwards, some residents experienced an improved sense of dignity, while others experienced a downward trend, a fluctuating one or no change at all. Two mechanisms were especially important for a nursing home resident to maintain or regain personal dignity: the feeling that one is in control of his life and the feeling that one is regarded as a worthwhile person. The acquirement of both feelings could be supported by 1) finding a way to cope with one's situation; 2) getting acquainted with the new living structures in the nursing home and therefore feeling more at ease; 3) physical improvement (with or without an electric wheelchair); 4) being socially involved with nursing home staff, other residents and relatives; and 5) being amongst disabled others and therefore less prone to exposures of disrespect from the outer world. Although the direction in which a resident's personal dignity develops is also dependent on one's character and coping capacities, nursing home staff can contribute to dignity by creating optimal conditions to help a nursing home resident recover feelings of control and of being regarded as a worthwhile perso

Nursing home staff's views on residents' dignity: a qualitative interview study

Maintaining dignity is an important element of end-of-life care and also of the care given in nursing homes. Factors influencing personal dignity have been studied from both nursing home residents' and staff's perspective. Little is however known about the way nursing home staff perceive and promote the personal dignity of individual residents in daily practice, or about staff's experiences with preserving dignity within the nursing home. The aim of this study is to gain more insight in this. A qualitative descriptive interview study was designed, in which in-depth interviews were performed with 13 physicians and 15 nurses. They expressed their views on the personal dignity of 30 recently admitted nursing home residents on the general medical wards of four nursing homes in The Netherlands. Interviews were transcribed and analyzed following the principles of thematic analysis. According to both physicians and nurses, physical impairment and being dependent on others threatened the residents' dignity. Whether or not this led to a violation of an individual resident's dignity, depended--in staff's opinion--on the resident's ability to show resilience and to keep his/her individuality. Staff mentioned treating residents with respect and taking care of their privacy as most important elements of dignity-conserving care and strived to treat the residents as they would like to be treated themselves. They could often mention aspects that were important for a particular resident's dignity. But, when asked what they could contribute to a particular resident's dignity, they often mentioned general aspects of dignity-conserving care, which could apply to most nursing home residents. By attempting to give dignity-conserving care, physicians and nurses often experienced conflicting values in daily care and barriers caused by the lack of resources. Tailoring dignity-conserving care to an individual nursing home resident appears hard to bring about in daily practice. Both attention to solve contextual barriers within the nursing home as well as more awareness of staff members for their own values, which they take as a reference point in treating residents, is needed to promote personal dignity in the nursing home settin

Dynamics in the sense of dignity over the course of illness: A longitudinal study into the perspectives of seriously ill patients

Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients' sense of dignity during the progression of illness. This longitudinal qualitative study investigates patients' experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses). Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis. Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances. While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignit

How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals With Mild to Moderate Dementia

This article examines how dementia affects personal dignity in individuals with mild to moderate dementia from their perspective. In this qualitative cross-sectional study, in-depth interviews were carried out with 14 individuals, aged 50-94, with mild to moderate dementia who lived at home. Verbatim transcripts were analyzed making use of the principles of thematic analysis. Although mild to moderate dementia resulted in a diminished sense of personal dignity, in general participants still felt reasonably dignified. The decline in personal dignity was generally caused by cognitive impairments resulting in diminished autonomy and changes to the individual's former identity. However, the intensity with which the decline in personal dignity was experienced depended to a large degree on the social context of the individual, with a marked difference between the private sphere of the home and the external, social environment. The study gives recommendations how others can help to sustain personal dignity in people with mild to moderate dementia. Given the considerable impact the social environment has on the personal dignity of people with mild to moderate dementia, it is important in caregiving not to confine attention to health-related or even any individual aspects alone, but also to take interpersonal aspects into consideratio