scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

scholarly journals Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell.Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2019 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Patient Choice ◽  
Medicines Management ◽  
Dose Administration ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

scholarly journals Homecoming—Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals

2021 ◽  
pp. 104990912110178
Author(s):  
Fiona Cameron ◽  
Anna Janze ◽  
Anna Klarare
Keyword(s):  
Physical Activity ◽  
Palliative Care ◽  
Focus Group ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Main Theme ◽  
Difficult Situation ◽  
Qualitative Interview Study ◽  
Wide Range

Aim: To describe healthcare professionals’ and volunteers’ experiences of a pathway for movement on a hospice ward. Method: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis. Results: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: “A practical tool to facilitate physical activity” and “Companionship and goals give meaning to the day,” and 2 interpretative sub-themes: “Regaining control and having a choice” and “Feeling normal and alive” based on participants’ views of patient experiences. Significance of Results: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling “at home” for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

scholarly journals The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

scholarly journals General practitioners’ perceptions of best practice care at the end of life: a qualitative study

BJGP Open ◽  
2019 ◽  
Vol 3 (3) ◽  
pp. bjgpopen19X101660 ◽  
Author(s):  
Anne Herrmann ◽  
Mariko Carey ◽  
Alison Zucca ◽  
Lucy Boyd ◽  
Bernadette Roberts
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Best Practice ◽  
Qualitative Content Analysis ◽  
Care Delivery ◽  
Natural Extension ◽  
Family Needs ◽  
Qualitative Interview Study ◽  
Wide Range ◽  
Practice Care

BackgroundGPs can play a central role in palliative care delivery. However, little is known about their views on what constitutes best practice care at the end of life.AimTo explore, in a sample of Australian GPs, their perceptions of best practice palliative care and their ideal role in its delivery.Design & settingA qualitative interview study of 25 GPs practising in metropolitan and non-metropolitan locations in New South Wales, Australia.MethodSemi-structured telephone interviews were conducted. Data were analysed using qualitative content analysis.ResultsParticipants had a mean age of 51 years, and had practised between 3 and 38 years (mean 19 years). Best practice palliative care was perceived to be proactive and responsive to a wide range of patient and family needs. Many participants indicated a need for relational continuity, which involves GPs establishing a care pathway from diagnosis to palliation, coordinating care across the pathway, and collaborating with other healthcare providers. A number of participants perceived palliative care as a natural extension of primary care and indicated that best practice palliative care mainly requires experiential knowledge and good communication skills, rather than specialised medical knowledge. Participants listed a number of communication strategies to offer patients and their families choice and ongoing negotiation about the recommended treatments.ConclusionThis study provides novel in-depth insights into GPs’ perceptions of best practice palliative care. Future research should further investigate the identified features of care, and whether they can maximise the outcomes of patients and their families.

scholarly journals USE OF PALLIATIVE CARE CONSULTS AND END-OF-LIFE CULTURE CHANGE PRACTICES IN NURSING HOMES

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 392-392
Author(s):  
M L Schwartz ◽  
M A Clark ◽  
J C Lima ◽  
S C Miller
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Culture Change

Happiness at the End of Life: A Qualitative Study

2020 ◽  
pp. 104990912093985
Author(s):  
Anne O’Callaghan ◽  
Ben Bickford ◽  
Conor Rea ◽  
Antonio Fernando ◽  
Phillipa Malpas
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Hospice Care ◽  
Qualitative Interviews ◽  
Well Being ◽  
Natural World ◽  
The Internet ◽  
Present Moment ◽  
Hospice Patients ◽  
Health And Well Being

Background: Happiness is a core ingredient of health and well-being, yet relatively little is known about what happiness means for individuals near the end of life, and whether perceptions of happiness change as individuals approach the end of their lives. Aim: The aim of this study was to explore, through interviews, how individuals experiencing hospice care understood and conceptualized happiness. Design: Qualitative interviews with hospice patients were analyzed thematically. Setting/Participants: Adult patients (n = 20) in a New Zealand hospice who were receiving palliative care and who could give their informed consent were invited by hospice nurse coordinators to an interview. Results: Four themes emerged from analysis of the transcribed interviews. Participants defined happiness most frequently and in most depth in relation to connection with others. They identified being in the present moment, particularly in relation to nature, and that happiness had become less associated with money, status, or possessions. They had an attitude of determination to focus on what mattered now. Conclusion: Patients receiving palliative care were generally happy with their lives, appreciated the simpler aspects of life away from the material. There was a common exhortation to young people to avoid focusing too much on acquisition and the internet and to prioritize instead social connection and engagement with the natural world.

scholarly journals Ambulance staff and end-of-life hospital admissions: A qualitative interview study

2018 ◽  
Vol 32 (9) ◽  
pp. 1465-1473 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Larissa Prothero ◽  
Stephen Barclay
Keyword(s):  
End Of Life ◽  
Hospital Admissions ◽  
Qualitative Interviews ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Policy Problem ◽  
Dying Patients ◽  
Qualitative Interview Study ◽  
At Home

Background: Hospital admissions for end-of-life patients, particularly those who die shortly after being admitted, are recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. Aim: To understand the role of ambulance staff in the admission to hospital of patients close to the end of life. Design: Qualitative interviews, using particular patient cases as a basis for discussion, analysed thematically. Participants/setting: Ambulance staff ( n = 6) and other healthcare staff (total staff n = 30), involved in the transfer of patients (the case-patients) aged more than 65 years to a large English hospital who died within 3 days of admission with either cancer, chronic obstructive pulmonary disease or dementia. Results: Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care. Conclusion: Ambulance interviewees fulfilled an important role in the admission of end-of-life patients to hospital, frequently having to decide whether to leave a patient at home or to instigate transfer to hospital. Their difficulty in facilitating non-hospital care at the end of life challenges the negative view of near end-of-life hospital admissions as failures. Hospital provision was sought for dying patients in need of care which was inaccessible in the community.

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