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

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.

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“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

BMC Palliative Care ◽

10.1186/s12904-021-00832-0 ◽

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.

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Happiness at the End of Life: A Qualitative Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120939857 ◽

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.

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Timing and nature of palliative care discussions are patient-specific according to clinicians: a qualitative study

10.1101/2019.12.28.19013417 ◽

2019 ◽

Author(s):

Nuno Tavares ◽

Tom Wilkinson ◽

Nikki Jarrett ◽

Katherine Hunt

Keyword(s):

Palliative Care ◽

End Of Life ◽

Complex Disease ◽

Qualitative Interviews ◽

Direct Care ◽

Patient Specific ◽

Chronic Obstructive ◽

Usual Practice ◽

Disease Trajectory ◽

Future Care

Background: Chronic obstructive pulmonary disease (COPD) is associated with an unpredictable and complex disease trajectory. Consequently, most patients are not involved in advance care planning and do not receive palliative care until the end of life. Aim: To explore clinicians experiences, opinions and recommendations for the timing and nature of palliative care discussions in COPD. Design: Qualitative interviews with nurses and doctors that provide direct care to COPD patients. Setting/Participants: 14 clinicians working across primary and secondary care in the UK were interviewed. Results: Participants suggested that those with the appropriate expertise and an established relationship with patients were best placed to initiate discussions about palliative and future care. Early, gradual and informed palliative and future care discussions were considered best practice, however they uncommon occurrence due to service, patient and clinician-related barriers. The unpredictable disease trajectory and fine balance between providing acute care and discussing palliative care options were suggested as key greatest barriers for discussions. However, damaging patient hope was a concern for clinicians and reduced their inclination to discuss palliative care. Clinicians did not seem to think that patients were ready for discussions, therefore they avoided broaching the subject leading early in the disease trajectory. Conclusion: Stand-alone conversations about and near the end of life was described as current usual practice by clinicians, however individualised early, regular and gradual discussions with patients about immediate and long-term future plans may make such discussions feel less negative and ordinary for patients and clinicians.

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Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

American Journal of Speech-Language Pathology ◽

10.1044/2019_ajslp-18-0207 ◽

2019 ◽

Vol 28 (3) ◽

pp. 1356-1362

Author(s):

Laurence Tan Lean Chin ◽

Yu Jun Lim ◽

Wan Ling Choo

Keyword(s):

Palliative Care ◽

End Of Life ◽

Multidisciplinary Team ◽

Biopsychosocial Model ◽

Family Members ◽

Clinical Decisions ◽

Goals Of Care ◽

Complex Needs ◽

Aspiration Risk ◽

Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

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