Christina Faull

Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study

Background Non-invasive ventilation (NIV) is beneficial for respiratory failure in motor neurone disease (MND) but some patients may wish to stop the intervention. Guidance from the National Institute for Health and Care Excellence recommends that research is needed on NIV withdrawal. There is little in the literature focusing on the issues doctors face when withdrawing NIV in this group. Aim To identify issues and challenges that palliative medicine doctors encounter in relation to the withdrawal of NIV in MND patients. Method An electronic questionnaire was sent to members of the Association of Palliative Medicine of Great Britain and Ireland. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal. Results 76 doctors responding had been directly involved in withdrawal of NIV at the request of a patient with MND. A high percentage rated the practical, ethical and emotional challenges as 7 or more on a 0–10 scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest many palliative care doctors feel significant personal impact. Conclusions The withdrawal of NIV in patients with MND appears to pose considerable challenges to palliative medicine doctors; emotionally, practically and to a lesser extent ethically. Development of guidelines and a clear ethical statement of conduct may help but emotional issues appear more complex.

Influences on the decision to prescribe or administer anticholinergic drugs to treat death rattle: A focus group study

Background: The evidence supporting pharmacological treatment of death rattle is poor; yet, anticholinergic drugs feature in end-of-life care pathways and guidelines worldwide as a treatment option. Aim: This qualitative arm of a wider study aimed to explore important issues which health-care professionals associated with decision-making to prescribe or administer anticholinergics at the end of life. Design: After purposive sampling, five focus groups were conducted. Discussions were audiotaped and transcribed verbatim. Setting: Thirty medical and nursing personnel working in inpatient and community settings from two specialist palliative care units in the United Kingdom took part in the study. Results: Thematic analysis of transcripts from audiotapes revealed perceived pressures to prescribe and/or administer anticholinergics from colleagues and carers, and drugs were often prescribed or administered in order to be seen to ‘do something’, although the benefit in terms of therapeutic response was considered minimal. Familiarity with drug regimens and dosing was often based on personal experience. The monitoring of side effects of anticholinergics at the end of life was recognised as problematic and had little influence on prescribing and administration. There was also an indication that patients and carers in the community were more likely to receive timely verbal preparation and explanation around death rattle than those cared for in an inpatient setting. Conclusion: The study raises questions about the routine inclusion of anticholinergic treatment in UK end of life care pathways for the treatment of death rattle.

Acceptability and design of video-based research on healthcare communication: Evidence and recommendations

OBJECTIVES To contribute to understandings about acceptability and risks entailed in video-based research on healthcare communication. To generate recommendations for non-covert video-based research on healthcare communication - with a focus on maximising its acceptability to participants, and managing and reducing its risks. METHODS A literature review and synthesis of (a) empirical research on participant acceptability and risks of video recording; (b) regulations of professional and governmental bodies; (c) reviews and commentaries; (d) guidance and recommendations. These were gathered across several academic and professional fields (including medical, educational, and social scientific). RESULTS 36 publications were included in the review and synthesis (7 regulatory documents, 7 empirical, 4 reviews/commentaries, 18 guidance/recommendations). In the context of research aiming in some way to improve healthcare communication: CONCLUSION AND PRACTICE IMPLICATIONS The recommendations are designed to support deliberations and decisions about individual studies and to support ethical scrutiny of proposed research studies. Whilst preliminary, it is nevertheless the most comprehensive and detailed currently available.

Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter?

Background The prompt availability of medications to manage symptoms is key to high quality end-of-life care and anticipatory prescribing of these drugs is thought good practice. This study explored the challenges encountered by primary and community health professionals in Leicestershire and Rutland related to anticipatory prescribing when caring for terminally ill patients who wish to remain at home to die. Method A qualitative study was conducted using eight focus groups (54 participants) and nine individual interviews with a purposively sampled range of health professionals providing care for people who wished to die at home. Themes were identified iteratively via constant comparison. Results Challenges fell into four categories: resourcing concerns, professional expertise/experience, professionals’ relationships with patients, and professionals’ relationships with other professionals. The latter included the most serious perceived challenges. Links between community and hospital care providers and between ‘usual’ hours and ‘out-of-hours’ care providers were seen as particularly unstable. Conclusions These findings suggest that building and maintaining trusting, responsive, personal links between professionals, both within and between teams, is essential when implementing good practice guidelines about anticipatory end-of-life prescribing in the community. The need for good communication and relationships between patients and professionals and maintaining expertise and confidence in end-of-life care are also key factors in the effective use of anticipatory prescribing for symptom management for dying patients.

An analysis of knowledge and attitudes of hospice staff towards organ and tissue donation

Background Only a minority of hospice patients eligible to donate tissue and organs choose to do so. Hospice care staff play a key role in discussions about donation, but their willingness to engage in these discussions and their understanding of issues around tissue and organ donation is poorly understood. Aims To (i) identify factors associated with the wish of hospice doctors, nurses and healthcare assistants to donate their own organs after death; (ii) survey the experience of discussing the subject with patients; (iii) determine staff members’ knowledge of organ and tissue donation and (iv) identify factors associated with knowledge of organ and tissue donation. Design Cross-sectional questionnaire survey of hospice care staff. Setting/participants 76 of the 94 care staff of one large UK hospice completed and returned the questionnaire. Results Staff wishing to donate their organs after death (43/76 56.6%) were more likely to be doctors or nurses than healthcare assistants (p=0.011) and more likely to have discussed organ or tissue donation with their family (p<0.001). Staff reporting ever having discussed donation with patients had more years’ experience (p=0.045) and had similarly discussed donation with their own family (p=0.039). Those with greater knowledge were more likely to have discussed organ or tissue donation with a patient (p=0.042). Conclusions A reluctance to instigate discussions about organ and tissue donation may prevent palliative patients and their families being allowed the opportunity to donate. Suboptimal knowledge among hospice staff suggests the need for greater liaison between hospice staff, and the organ and tissue donation teams.

Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying

Objective To examine how palliative medicine doctors engage patients in end-of-life (hereon, EoL) talk. To examine whether the practice of “eliciting and responding to cues”, which has been widely advocated in the EoL care literature, promotes EoL talk. Design Conversation analysis of video- and audio-recorded consultations. Participants Unselected terminally ill patients and their companions in consultation with experienced palliative medicine doctors. Setting Outpatient clinic, day therapy clinic, and inpatient unit of a single English hospice. Results Doctors most commonly promoted EoL talk through open elaboration solicitations; these created opportunities for patients to introduce–then later further articulate–EoL considerations in such a way that doctors did not overtly ask about EoL matters. Importantly, the wording of elaboration solicitations avoided assuming that patients had EoL concerns. If a patient responded to open elaboration solicitations without introducing EoL considerations, doctors sometimes pursued EoL talk by switching to a less participatory and more presumptive type of solicitation, which suggested the patient might have EoL concerns. These more overt solicitations were used only later in consultations, which indicates that doctors give precedence to patients volunteering EoL considerations, and offer them opportunities to take the lead in initiating EoL talk. There is evidence that doctors treat elaboration of patients’ talk as a resource for engaging them in EoL conversations. However, there are limitations associated with labelling that talk as “cues” as is common in EoL communication contexts. We examine these limitations and propose “possible EoL considerations” as a descriptively more accurate term. Conclusions Through communicating–via open elaboration solicitations–in ways that create opportunities for patients to volunteer EoL considerations, doctors navigate a core dilemma in promoting EoL talk: giving patients opportunities to choose whether to engage in conversations about EoL whilst being sensitive to their communication needs, preferences and state of readiness for such dialogue.

Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK

Background Ventilatory support has benefits including prolonging survival for respiratory failure in motor neurone disease (MND). At some point some patients may wish to stop the intervention. The National Institute of Health and Care Excellence (NICE) guidance recommends research is needed on ventilation withdrawal. There is little literature focusing on the issues doctors encounter when withdrawing ventilation at the request of a patient. Aim To identify and explore with doctors the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND. Method A retrospective thematic analysis of interviews of 24 doctors (including palliative care, respiratory, neurology and general practice) regarding their experiences with withdrawal of ventilation support from patients with MND. Results Respondents found withdrawal of ventilation at the request of patients with MND to pose legal, ethical and moral challenges in five themes: ethical and legal rights to withdrawal from treatment; discussions with family; discussions with colleagues; experiences of legal advice; issues contributing to ethical complexity. Though clear about the legality of withdrawal of treatment in theory, the practice led to ethical and moral uncertainty and mixed feelings. Many respondents had experienced negative reactions from other healthcare professionals when these colleagues were unclear of the distinction between palliation of symptoms, withdrawal of treatment and assisted death. Conclusions Legal, ethical and practical guidance is needed for professionals who support a patient with MND who wishes to withdraw from ventilation. Open discussion of the ethical challenges is needed as well as education and support for professionals.

Experience with dipipanone elixir in the management of cancer related pain - case study

The synthetic opioid dipipanone is infrequently used in the UK in the management of malignant pain, principally because of the inflexibility of the Diconal combination preparation (dipipanone 10 mg with cyclizine 30 mg). We present three patients in which dipipanone elixir proved to be their own drug of choice in the management of opioid responsive cancer pain, and our experience with 15 other patients. Dipipanone elixir was formulated 10 mg/5 ml, in single strength chloroform water.

The impact on bereaved carers of being involved in medical student education.

Recently bereaved carers of patients who have died in the Leicestershire and Rutland Hospice (LOROS) are invited to be involved in the education of medical students from Leicester University in the care of the dying. The aim of this initiative is that the student’s education is grounded in real experience. The carers are contacted randomly approximately 9 months after their bereavement and offered the opportunity of being involved in the education programme. On average a third of the carers invited agree to be involved. They talk to a group of about 15 students with the support of a facilitator. Once they have told their ‘story’, the students have the opportunity to ask questions or discuss aspects of the story in more detail. The sessions provided by the carers have been very highly evaluated by the medical students and often reported to have had the greatest perceived impact on their learning. Concern has been expressed by some in the hospice, however, about the appropriateness of involving recently bereaved carers in this programme at a vulnerable time in their lives. Could reliving their experiences with the students be detrimental to the carers? With this study we wanted to explore the carers’ perspective and the impact the teaching has on them.

Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals.

The Association for Palliative Medicine of Great Britain and Ireland (APM) has recently published Guidance for Professionals to support their practice in a very challenging area of care.1 The Guidance has been endorsed by the Motor Neurone Disease Association, the Royal College of Nursing, the Royal College of Physicians of London, the Royal College of General Practitioners and Hospice UK, and is consistent with General Medical Council (GMC) standards of good practice,2 and is compatible with coronial law and principles. It has resulted from original research from Faull et al 3 in Leicester which explored the experiences of families and healthcare professionals and found that while there were examples of good practice, there was considerable variation in care and evidence of poor outcomes for patients, families and the professionals involved.4 ,5 Motor neurone disease (MND) is a fatal neurodegenerative disease. Although there is variation in the way MND first affects people and the pattern and speed of progression of muscle weakness, at some point almost all patients will have weakness of respiratory muscles. The most frequent cause of death is respiratory failure secondary to impairment of the respiratory musculature, usually within a few years of onset of the illness. Non-invasive-assisted ventilation (NIV) is a medical treatment that can improve quality of life, symptoms and survival in selected patients.6 The guidance from the National Institute for …