scholarly journals CARer-ADministration of as-needed subcutaneous medication for breakthrough symptoms in homebased dying patients (CARiAD): study protocol for a UK-based open randomised pilot trial

2018 ◽  
Author(s):  
Marlise Poolman ◽  
Jessica Roberts ◽  
Anthony Byrne ◽  
Paul Perkins ◽  
Zoe Hoare ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Controlled Trial ◽  
Symptom Relief ◽  
Symptom Control ◽  
Pilot Trial ◽  
Life Care ◽  
Dying Patients ◽  
Wish To Die ◽  
The Uk ◽  
At Home

Abstract Background: Whilst the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. Methods: The paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life, wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. Discussion: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial, and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). Trial registration: ISRCTN, ISRCTN 11211024. Assigned 27 September 2016, http://www.isrctn.com/ISRCTN11211024. Keywords: End-of-life care, Care of the dying, Palliative care, Symptom control, Carer administration, Randomised pilot trial

scholarly journals CARer-ADministration of as-needed subcutaneous medication for breakthrough symptoms in homebased dying patients (CARiAD): study protocol for a UK-based open randomised pilot trial

2019 ◽  
Author(s):  
Marlise Poolman ◽  
Jessica Roberts ◽  
Anthony Byrne ◽  
Paul Perkins ◽  
Zoe Hoare ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Controlled Trial ◽  
Symptom Relief ◽  
Symptom Control ◽  
Pilot Trial ◽  
Life Care ◽  
Dying Patients ◽  
Wish To Die ◽  
The Uk ◽  
At Home

Abstract Background: Whilst the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. Methods: The paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life, wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. Discussion: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial, and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). Trial registration: ISRCTN, ISRCTN 11211024. Assigned 27 September 2016, http://www.isrctn.com/ISRCTN11211024. Keywords: End-of-life care, Care of the dying, Palliative care, Symptom control, Carer administration, Randomised pilot trial

scholarly journals Nasal fentanyl and buccal midazolam carer administration ‘as needed’ for breakthrough symptom control in a specialist palliative care unit: a nested qualitative study

2021 ◽  
Vol 11 (4) ◽  
pp. 440-443
Author(s):  
Paul Perkins ◽  
Anne Parkinson ◽  
Vanessa Taylor ◽  
Emma Husbands
Keyword(s):  
Healthcare Professionals ◽  
Controlled Trial ◽  
Symptom Relief ◽  
Symptom Control ◽  
Drug Efficacy ◽  
Ease Of Use ◽  
Symptom Intensity ◽  
Dying At Home ◽  
Randomised Controlled ◽  
At Home

IntroductionWhen people are dying and unable to take oral medication, injectable medication is commonly used, usually administered by healthcare professionals. There may be delays to symptom relief due to travel to the person’s home. In a randomised controlled trial (RCT) previously reported, nasal fentanyl (NF) or buccal midazolam (BM) were administered by lay carers in a hospice.Objective(1) To report experiences of lay carers who administered NF and BM for symptom control and (2) To use feedback to develop guidance informing a future definitive RCT to determine whether NF and BM administered by lay carers can lead to timely, improved symptom control for people dying at home and fewer ‘emergency’ community nursing visits than standard breakthrough medication administered by healthcare professionals.Material and methodsSemistructured interviews with lay carers who gave trial medication were conducted. Interview data were analysed using a stage by stage method to code and categorise transcripts.FindingsThe six themes were: (1) Participation—lay carers welcomed the opportunity to administer medication; (2) Ease of use—lay carers found preparations easy to use; (3) How things could have been done differently—lay carers would have liked access to trial drugs at home; (4) Training—lay carers were happy with the training they received; (5) Timing—lay carers liked the immediacy of trial drugs and (6) Evaluation—assessing symptom intensity and drug efficacy.ConclusionsParticipation was acceptable to patients and lay carers, and beneficial for symptom relief. The findings will inform planning for a future community-based study.

Managing End-of-Life Care

2012 ◽  
Author(s):  
John W. Albarran ◽  
Marika Hills
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Symptom Relief ◽  
Death And Dying ◽  
Past Century ◽  
Life Care ◽  
Care Needs ◽  
Definition Of ◽  
The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

scholarly journals Good participatory practice for coronavirus disease 2019 (COVID-19) research: the case of a COVID-19 prevention study

2021 ◽  
Vol 6 ◽  
pp. 216
Author(s):  
Carlo Perrone ◽  
William Schilling ◽  
James J. Callery ◽  
Elizabeth A. Ashley ◽  
Mary Chambers ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Controlled Trial ◽  
Double Blind ◽  
Balance Study ◽  
Healthcare Facilities ◽  
The Social ◽  
Information Materials ◽  
Context Specific ◽  
The Uk ◽  
Fine Tune

Background: The COPCOV study (chloroquine/ hydroxychloroquine prevention of coronavirus disease), which started recruitment in April 2020, is a multi-country double-blind, randomised, placebo-controlled trial which is being conducted in healthcare facilities involved in COVID-19 case management. COPCOV aims to recruit healthcare workers and other staff employed in facilities managing people with proven or suspected COVID-19. Methods: We conducted a series of engagement sessions, each involving a short presentation of the study, a section where attendees were asked to express if they would be interested in participating in such a study and which information they would need to change their view and an open Q&A section. Answers were transcribed and coded into themes by two independent investigators. Themes were derived from the data. The aims were to assess the feasibility of the study at the respective sites, to identify context-specific ethical issues, to understand concerns potential participants might have, to fine tune research procedures and to refine COPCOV information materials. They complemented other site-specific engagement, communication and public relation activities such as press releases and websites. Results: From 16th March 2020 to 20th January 2021, 12 engagement sessions were conducted in Thailand, Laos, Vietnam, Nepal and the UK involving 213 attendees in total. The sessions were designed to encourage potential participants and research professionals not directly involved in the project to interact with those who planned the study and those conducting it. Many attendees were keen to join the study while others had concerns. Questions raised revolved around the social value and study rationale; safety of trial medications and risk-benefit balance; study design and commitments. Conclusions: These sessions helped us refine information materials, identify misunderstandings about the study as well as complement site feasibility assessments. Our experience strongly supports the use of participatory practices prior to conducting clinical trials.

scholarly journals Good participatory practice for coronavirus disease 2019 (COVID-19) research: the case of a COVID-19 prevention study

2021 ◽  
Vol 6 ◽  
pp. 216
Author(s):  
Carlo Perrone ◽  
William Schilling ◽  
James J. Callery ◽  
Elizabeth A. Ashley ◽  
Mary Chambers ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Controlled Trial ◽  
Double Blind ◽  
Balance Study ◽  
Healthcare Facilities ◽  
The Social ◽  
Information Materials ◽  
Context Specific ◽  
The Uk ◽  
Fine Tune

Background: The COPCOV study (chloroquine/ hydroxychloroquine prevention of coronavirus disease), which started recruitment in April 2020, is a multi-country double-blind, randomised, placebo-controlled trial which is being conducted in healthcare facilities involved in coronavirus disease 2019 (COVID-19) case management. COPCOV aims to recruit healthcare workers and other staff employed in facilities managing people with proven or suspected COVID-19. Methods: We conducted a series of engagement sessions, each involving a short presentation of the study, a section where attendees were asked to express if they would be interested in participating in such a study and which information they would need to change their view and an open Q&A section. Answers were transcribed and coded into themes by two independent investigators. Themes were derived from the data. The aims were to assess the feasibility of the study at the respective sites, to identify context-specific ethical issues, to understand concerns potential participants might have, to fine tune research procedures and to refine COPCOV information materials. They complemented other site-specific engagement, communication and public relation activities such as press releases and websites. Results: From 16th March 2020 to 20th January 2021, 12 engagement sessions were conducted in Thailand, Laos, Vietnam, Nepal and the UK involving 213 attendees in total. The sessions were designed to encourage potential participants and research professionals not directly involved in the project to interact with those who planned the study and those conducting it. Many attendees were keen to join the study while others had concerns. Questions raised revolved around the social value and study rationale; safety of trial medications and risk-benefit balance; study design and commitments. Conclusions: These sessions helped us refine information materials, identify misunderstandings about the study as well as complement site feasibility assessments. Our experience strongly supports the use of participatory practices prior to conducting clinical trials.

scholarly journals Palliative care at home: Carers and medication management

2008 ◽  
Vol 6 (4) ◽  
pp. 349-356 ◽  
Author(s):  
Barbara A. Anderson ◽  
Debbie Kralik
Keyword(s):  
Palliative Care ◽  
Medication Management ◽  
Symptom Relief ◽  
Symptom Control ◽  
Subcutaneous Administration ◽  
Care Practice ◽  
Home Based ◽  
Palliative Care Setting ◽  
Care At Home ◽  
At Home

ABSTRACTObjective:The decision to receive palliative care at home brings with it the complexity of managing a medication regime. Effective symptom control is often directly linked to medication management and relies on access to medications at all times. In home-based palliative care practice, polypropylene syringes of medications may be drawn up and left in clients' domestic refrigerators for subcutaneous administration by carers to provide immediate relief for symptoms such as pain and nausea. However, although there has been some discussion in the literature about the need for ready access to medications for symptom control of clients receiving care in the community, the feasibility of this practice has received scant attention. The aim of this article is to present the carers' experiences of administering medications in this manner.Methods:Semistructured interviews with 14 carers, who were administering medication in a home-based palliative care setting, were analyzed using qualitative methods to develop meaning units and themes.Results:Interviews revealed that this practice was highly valued. The carers willingly assumed the responsibility of medication administration, as it allowed the clients to remain at home where they desired to be. They could provide immediate symptom relief, which was of utmost importance to both the client and carer. The carers were empowered in their caring role, being able to participate in the care provided, rather than standing on the sidelines as helpless observers. Carers acknowledged the security and ethical issues associated with the presence of certain medications in the home and valued the 24-h telephone support that was available to them. After clients had died, the carers reflected on their involvement in care and felt a sense of pride and achievement from administering medications in this way because they had been able to care for their loved ones at home and fulfill their wish to die there.Significance of results:These interviews confirm the feasibility of this practice, which is a component of quality end-of-life care.

scholarly journals Exploring various models of hospice care worldwide that can be used and adapted to the context of Qatar: A review of the literature

2020 ◽  
Vol 6 (2) ◽  
pp. 1
Author(s):  
Aisha Noor Mohammad​ Khan ◽  
Jessie Johnson ◽  
Asma Al Bulushi
Keyword(s):  
Literature Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Care Staff ◽  
Life Care ◽  
Care Services ◽  
Wish To Die ◽  
Home Hospice Care ◽  
At Home

Background: Hospice care is an alternative for those patients who wish to die at home. Most clients who have a terminal illness would rather choose the services provided by healthcare workers who deliver hospice care in the client’s home. For some, it is important to have the ability to spend time with friends, family and to die with dignity and respect at their preferable place of death. Qatar has established end of life care services for patients with advanced stages of cancer, however these services are delivered on palliative care units housed within the National Center for Cancer Care and Research (NCCCR). Having the ability to provide at home hospice care is a necessity in order to carry out the wish of clients who wish to die at home, fulfil the gap in these facilities, and achieve the goal of Qatar’s national health strategy, which is to improve cancer services.Aim: To explore the literature for different models of at-home hospice care worldwide then find a model that can be adapted to the context of Qatar.Methods: A literature review approach was used. Nine scholarly articles were found that focused on and evaluated different at-home hospice models of care worldwide published between 2007 and 2018. Articles were critically appraised using the Mixed Method Appraisal Tool. The data were analysed by categorizing the included articles in a spreadsheet based on study design.Results: The most significant components of at-home models of hospice care were multidimensional care, staff competent in delivering end of life care services, and the ability to provide twenty-four-hour care in the home. These components had a positive impact on providing safe effective end of life care services at home.Conclusions: Taken together, all the necessary components identified in this literature review will go a long way in the successful development of hospice care in Qatar.

scholarly journals British laypeople’s attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0247193 ◽  
Author(s):  
Antony Takla ◽  
Julian Savulescu ◽  
Andreas Kappes ◽  
Dominic J. C. Wilkinson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Demographic Characteristics ◽  
Life Care ◽  
Policy And Practice ◽  
Online Surveys ◽  
Dying Patients ◽  
Relieve Pain ◽  
The Uk ◽  
Dying Patient

Background Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called “terminal anaesthesia”, TA). However, the general public’s views about sedation in EOLC are not known. We sought to investigate the general public’s views to inform policy and practice in the UK. Methods We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia. Findings Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were. Interpretation These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

scholarly journals Emotion regulation-enhanced group treatment for gambling disorder: a non-randomized pilot trial

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Viktor Månsson ◽  
Olof Molander ◽  
Per Carlbring ◽  
Ingvar Rosendahl ◽  
Anne H. Berman
Keyword(s):  
Emotion Regulation ◽  
Group Treatment ◽  
Mental Health Treatment ◽  
Gambling Disorder ◽  
Ethical Issues ◽  
Controlled Trial ◽  
Pilot Trial ◽  
Poor Mental Health ◽  
Pre Treatment

Abstract Background Despite the association of Gambling Disorder (GD) with poor mental health, treatment options generally lack components targeting emotional difficulties. This study investigated the feasibility and acceptability of adding strategies of emotion regulation to an eight-session weekly group treatment. Method This non-randomized pilot study recruited 21 treatment-seeking adults with GD, (mean age = 36.3, 19% females) from addiction care. In a mixed methods design, measures of within-group changes in self-reported symptoms of GD were complemented with thematic analysis of post-treatment interviews regarding the feasibility of the treatment. Results Within-group scores on the Gambling Symptoms Assessment Scale (G-SAS) showed a 47% decrease (β: -0.1599, 95% CI: − 0.2526 to − 0.0500) from pre-treatment to 12-month follow-up, with Hedges’ g = 1.07 (CI: 0.57–1.60). The number of GD-symptoms according to the Structured Clinical Interview for Gambling Disorder (SCI-GD) decreased from 7.0 (SD = 1.60) at pre-treatment to 2.1 (SD = 2.36) at 12-month follow-up. Participants completed an average of 6.3 sessions and rated the intervention high in satisfaction and acceptability. Feasibility interviews showed no noticeable negative effects or ethical issues. Furthermore, helpful components in the treatment were: increased awareness of emotional processes and strategies to deal with difficult emotions. Conclusions Adding emotion regulation strategies in the treatment of GD is feasible and acceptable and warrants further investigation in a controlled trial. Trial registration This study was registered with ClinicalTrials.gov (Identifier NCT03725735).

Principlism in paramedicine: an examination of applied healthcare ethics

2020 ◽  
Vol 12 (8) ◽  
pp. 1-6 ◽  
Author(s):  
Phillip Ebbs ◽  
Hamish Carver ◽  
Dominique Moritz
Keyword(s):  
End Of Life Care ◽  
Ethical Issues ◽  
Theory And Practice ◽  
Ethical Framework ◽  
Life Care ◽  
Healthcare Ethics ◽  
Ethical Considerations ◽  
Practical Guidance ◽  
The Uk ◽  
Vulnerable Persons

Principlism is arguably the dominant recognised ethical framework used within medicine and other Western health professions today, including the UK paramedic profession. It concerns the application of four principles: autonomy, beneficence, non-maleficence and justice. This article examines the theory and practice of principlism, and shows how it is used in daily paramedic practice and decision-making. Practical guidance on applying ethics in paramedicine, illustrated with scenarios, is also provided. This is the first in a series of three articles on paramedic ethics. This series complements the Journal of Paramedic Practice's concurrent CPD˚series on paramedic law in the UK. Later articles in this series will examine the complex ethical issues that can accompany end-of-life care, and ethical considerations relating to treatment of vulnerable persons including children.

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