O-24 End of life care and decision making: public knowledge, needs and preferences in wales
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Abstract:
Introduction
A prudent approach to provide quality end of life care (EoLC) advocates for active participations of the patients in designing the service (Wynne, n.d.). Patients and carers demand for improvements in decision-making at the EoLC (Sinuff et al, 2015). But there is a lack of evidence on understanding of people's attitudes towards EoLC and shared decision-making (Hajizadeh, Uhler, Herman, et al., 2016).Aim
To increase understanding of people's views, feelings and preferences around EoLC and decision making.Method
An online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results
2210 people (Age: Mean ±SD; 55±14 years) participated in the survey, 43% of those were members of the public, 29% were patients/carers, and 23% were health professionals. 49% of respondents thought that available EoLC and palliative care was inadequate and only 31% believed that people could access these facilities. More than 60% people did not know if cultural/religious/ spiritual needs were met during EoLC. 58% believed that end of life care for older people should have equal priority for the NHS. 43% of respondents did not know where to get the support if someone close to him/her were to die. Only 41% believed that people could take part in decision-making around EoLC though 85% of respondents felt confident to get involved in EoLC decision-making. 82% thought that their preference should take priority over wishes of others, 61% considered that involving others in the EoLC decision making of using life–supporting technology would place extra burden on them whereas 27% considered that this would limit their privacy.Conclusions
Understanding public attitudes is essential to understanding changing contexts of care. Developing a need-based EoLC model will be innovative and enhances an effective service delivery.Keywords:
Thematic Analysis
End-of-Life Care
Advance Care Planning
Since 2013, Kaiser Permanente Northern California has engaged in a systematic effort to elicit, document, and honor the care preferences of patients as they near the end of life. This is done through its Advanced Steps program, in which selected patients discuss their preferences for future medical care with their healthcare agent during a structured conversation with a trained advance care planning facilitator. The facilitator then translates the patient's wishes into an actionable medical order set using a Physician's Order for Life-Sustaining Treatment (POLST) form. We wanted to know whether these patients' recorded wishes were concordant with care received at the end of life. To evaluate, we conducted an in-depth chart review of 300 patients who died in 2015 and had participated in the program. We determined that 290 patients received concordant care, whereas three patients received care discordant with their wishes before death. Seven patients did not have sufficient information in their record to determine concordance. Interestingly, we found care preferences often changed over time; ∼20% of patients revised their end-of-life preferences after having the facilitated conversation, with most of those patients opting for less intensive care. Most changes to preferences were made verbally in the final setting of care. While advance care planning and the POLST form provide invaluable tools for recording patients' wishes, our study highlights a need to track patients' wishes as they evolve over time and a need for ongoing, real-time conversations about goals of care, even after a POLST is completed.
Facilitator
Advance Care Planning
End-of-Life Care
Concordance
Honor
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This Book reflects the interest in advance care planning based on shared decision making and the recommendation that it becomes an integral part of care for those nearing the end of their lives. as this is a topic that all nurses will encounter it is a subject worth considering.
Advance Care Planning
End-of-Life Care
Terminal care
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Background: Stroke is a leading cause of death; between 20% and 30% of people die within 30 days of a stroke. High-quality palliative and end-of-life care are advocated for patients not expected to recover from stroke. Aim: To explore the perspectives of health professionals regarding the provision of palliative and end-of-life care in UK stroke units. Design and setting: Qualitative focus groups and individual interviews were held with 66 health professionals working in UK specialist stroke units. Data were analysed thematically. Results: Three themes emerged from the data. Palliative care was recognised as an important component of stroke care; however, there was uncertainty when initiating transitions to palliative care in stroke, and issues were identified with the integration of acute stroke care and palliative care. Conclusions: The findings provide encouraging evidence that palliative and end-of-life care have been adopted as key components of specialist stroke care in UK stroke units. However, many patients stand to benefit from earlier identification of palliative care need and a consideration of quality-of-life approaches during active care. Encouraging collaboration and partnership when working with specialist palliative care services would optimise palliative care service delivery and may provide patients and their families with greater opportunities for documenting and achieving preferences for care and achieving a better quality of death.
End-of-Life Care
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Advance care planning discussions ensure patients’ values and goals of care, including the freedom to choose their place of death, are respected. The benefits of advance care planning and early end-of-life care discussions are often delayed, as these discussions are not initiated early in patients’ cancer trajectories. As a result, patients’ wishes often remain unknown until the last phase of their life. Evidence suggests that many patients inappropriately receive aggressive treatment near the end of life, which leads to higher resource utilization, decreased quality of life, and increased cost. The purpose of this article is to provide practical tips to the oncology advanced practitioner on initiating advance care planning and end-of-life care discussions with patients and their families or caregivers.
Advance Care Planning
End-of-Life Care
Terminal care
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Based on a comparison of studies of patient desires regarding end-of-life care and of the actual course of end-of-life care, this article concludes that there is a significant discrepancy in the United States between the kind of care most people want and the kind of care they in fact receive. The article offers a case example to illustrate one type of dilemma commonly encountered in end-of-life care. It then introduces and describes the practice of advance care planning. Use of advance care planning, it is argued, can prevent moral dilemmas and improve end-of-life care.
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Advance Care Planning
Terminal care
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Advance Care Planning
End-of-Life Care
Terminal care
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Thematic Analysis
Advance Care Planning
Taboo
Health Professionals
Qualitative property
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Research suggests that palliative care is poorly understood and often associated with imminent death (Canny, 2002). This, in turn, can negatively impact upon the transition to palliative care services. The aims of this three phase, multi-method study were to: (1) examine and compare the attitudes of health professionals toward palliative care; (2) examine and compare the attitudes and personal constructs of four key participant groups including patients receiving palliative care services, people living with cancer and the carers of both of these groups; and (3) to examine potential strategies for changing attitudes through education. Phase One involved a detailed assessment of health professionals’ attitudes toward, and understanding of, palliative care by means of a postal survey (182/700) and a small number of one-to-one interviews (n=5). Attitudes toward palliative care, as measured by the Health Professional Attitude Questionnaire (HPAQ), were explained by a number of key factors including: (1) knowledge of palliative care services; (2) relationship with the patient and family; and (3) personal reflection on mortality. Thematic analysis of the qualitative data further illuminated and developed this factorial model. Phase Two utilised one-to-one semi-structured interviews (n=30) and a battery of quantitative measures (n=75) to identify and compare attitudes toward, and experiences of, palliative care amongst patients receiving palliative care services (n=15), people living with cancer (n=25) and the carers of both of these groups (n=35). Repertory grids (n=12) were also used to explore and compare participants’ constructs of palliative care. Thematic analysis of the interview data revealed four key themes and associated subthemes that described patients’ and carers’ attitudes toward palliative care. Within each theme, different perspectives were adopted by each of the participant groups and these were explored and quantified by means of the repertory grid analysis. The findings from Phases One and Two were then used to inform the development of two health professional and patient interventions for Phase
Three that aimed to: (1) provide information about palliative care services; (2) utilise the patient ‘voice’ and story; (3) focus on the health promoting benefits of palliative care; and (4) demystify hospice, palliative care and the dying process. The study adds to the relatively small pool of evidence in this area and the use of the repertory grid technique, in particular, offers an interesting psychological tool for investigating palliative care research and practice.
Thematic Analysis
Health Professionals
Exploratory research
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Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.
Thematic Analysis
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Abstract Objectives This study aimed to describe insights from interviews about the experience of physiotherapists providing palliative care in Ontario and their perceptions of the role and value of physiotherapists' involvement in palliative care. Methods We conducted interviews with physiotherapists in Ontario, Canada ( n = 14), and received emailed submissions from two others (one physiotherapist and one physiotherapy student) with current or recent practice experience in palliative care. We conducted inductive thematic analysis of the interview data and emailed submissions. Results Participants' reflections were categorized into three major themes: perceived value of the contribution of physiotherapists in palliative care; the experience of providing physiotherapy in palliative care; and reflections on the palliative care system. Participants described their role in palliative care as diverse, driven by patient goals and focused on the experience of patients and families. Participants perceived a high value in collaborative networks for supporting them to fulfill their role in palliative care settings. Participants also recommended efforts to increase awareness of the potential for physiotherapists to contribute to palliative care. Conclusions The findings confirm those of research in other jurisdictions and extend our understanding of the value and meaningfulness of physiotherapy in palliative care, to patients, families, and physiotherapists themselves.
Thematic Analysis
Value (mathematics)
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