Paul Perkins

Does the Use of a Handheld Fan Improve Chronic Dyspnea? A Randomized, Controlled, Crossover Trial

CONTEXT Dyspnea is a disabling distressing symptom that is common in advanced disease affecting millions of people worldwide. Current palliative strategies are partially effective in managing this symptom; facial cooling has been shown to reduce the sensation of breathlessness when induced in volunteers but has not been formally investigated in dyspnea associated with disease. OBJECTIVE The objective of this study was to investigate whether a handheld fan reduces the sensation of breathlessness in such patients, enhancing palliative approaches. METHODS The effectiveness of a handheld fan (blowing air across the nose and mouth) in reducing the sensation of breathlessness was assessed in patients with advanced disease. Fifty participants were randomized to use a handheld fan for five minutes directed to their face or leg first and then crossed over to the other treatment. The primary outcome measure was a decrease of greater than 1cm in breathlessness recorded on a 10 cm visual analog scale (VAS). RESULTS There was a significant difference in the VAS scores between the two treatments, with a reduction in breathlessness when the fan was directed to the face (P=0.003). CONCLUSION This study supports the hypothesis that a handheld fan directed to the face reduces the sensation of breathlessness. The fan was acceptable to participants: it is inexpensive, portable, enhances self-efficacy, and available internationally. It should be recommended as part of a palliative management strategy for reducing breathlessness associated with advanced disease.

What are patients' priorities for palliative care research? Focus group study

To elucidate the research priorities of palliative care patients we conducted focus groups with day therapy and hospice in-patients with cancer with an estimated prognosis of 6 months or less. Patients were positive about taking part in this research project identifying five main priorities for future research — talking with patients; help for patients and families; oncology; symptoms; medication/treatments. Patients gave great emphasis to communication issues and little to symptom control. A patient questionnaire was created with these themes which is currently being used in five hospices across East Anglia. This paper describes the qualitative component of the study. Palliative Medicine 2007; 21: 219—225

Working with the Mental Capacity Act: findings from specialist palliative and neurological care settings

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users.

How do nurses assess and manage breakthrough pain in specialist palliative care inpatient units? A multicentre study

The aim of this qualitative study was to gain a better understanding of how nurses working on inpatient specialist palliative care units assess and manage breakthrough pain. Thematic analysis of semi-structured interviews with fifteen nurses from five different specialist palliative care units in the UK was undertaken. Themes identified have been broadly categorized into four main areas: defining breakthrough pain, assessing breakthrough pain, managing breakthrough pain, and attitudes/teamwork. Nurses had difficulty defining breakthrough pain as a distinct pain subtype and were often unable to differentiate it from poorly controlled background pain. This study highlights significant training needs and suggests that the theoretical work and recently published consensus recommendations around breakthrough pain now need to be translated into day-to-day clinical practice.

What are patients' priorities for palliative care research? — a questionnaire study

This paper describes the questionnaire component of a two-stage study to examine the research priorities of palliative care patients. In the first stage focus groups were conducted to determine a list of priorities for future research: a questionnaire created from these themes was then used in five hospices across East Anglia. Patients thought that the focus group priorities were important and scored research into emergency care, pain control and helping doctors to understand what patients were saying as most important. Differences in priority were associated with gender, age and in-patient versus day therapy patients. Palliative Medicine 2008; 22: 7—12

Does acupressure help reduce nausea and vomiting in palliative care patients? Pilot study.

There is little evidence of for the anti-emetics used in palliative medicine.1 Cochrane reviews examined stimulation of the acupuncture point P6 (Pericardium 6) for emesis in pregnancy2 and surgery.3 There are two published trials examining acupoint stimulation for nausea and vomiting in palliative care.4,5 One enrolled six patients in a crossover design comparing acupressure, placebo wrist band and no band. Results presented for four patients with follow-up between 16 hours and four days were interpreted as revealing that acupressure did not help. The second observational study (33 patients) had no comparator and a median follow-up of 45 minutes (range 15 minutes to one week); 29/33 patients responded. We wished to evaluate acupressure at the P6 site for terminal cancer patients with nausea and vomiting. Approval was obtained from the Bedfordshire Local Research Ethics Committee. The study was conducted in a specialist palliative care unit. Pairs of active or sham wristbands (Sea-Band Ltd) were placed in sealed, numbered envelopes according to a random allocation derived from a randomization programme. Active bands have a bead to stimulate the acupressure point, sham bands appear identical but have no bead. Inclusion criteria:

The experiences of patients with ascites secondary to cancer: A qualitative study

Background: Ascites secondary to cancer has a dramatic effect on all aspects of patients’ lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites. Aim: To explore patients’ experiences of living with ascites and its management. Design: Qualitative research study using digitally recorded semi-structured interviews. Setting/participants: Twelve adult patients with ascites who, between them, had undergone 47 paracentesis procedures in hospitals and/or specialist palliative care units in Southern England. Results: Symptoms were pain, discomfort and effects on appetite, digestion, breathing and mobility. All participants had experienced paracentesis in hospital or a specialist palliative care unit, and these experiences differed. They had views on what constituted a good procedure: setting, competence and pain control. They reported rapid improvement of symptoms after paracentesis. While some did not like the idea of a semi-permanent drain, those with them appreciated the convenience and not having to wait for repeated admissions or the recurrence of symptoms. The interval between ascitic taps was seen as a useful guide as to when a semi-permanent drain should be offered. Participants had mixed views on participation in a hypothetical randomised controlled trial of repeated ascitic taps versus semi-permanent drains. Conclusion: Patients’ experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.

Pain from myelofibrosis treated with regular pamidronate

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The role of specialist palliative care in managing patients with multimorbidity

This case report describes a patient with multiple morbidity resulting from complicated type 2 diabetes, psoriatic arthritis and abdominal surgery. It highlights the importance of specialist palliative care services in meeting his complex holistic care needs. We acknowledge the growing number of patients living with multiple morbidity and the challenges this group can present. There is then a debate around when to involve specialist palliative care services in the management of multiple morbidity given that there is often an uncertain disease trajectory.

‘Was it worth it?’ Intrathecal analgesia for cancer pain: A qualitative study exploring the views of family carers:

Background: Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. Aim: Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer. Design: Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres. Setting: A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded. Results: In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal – relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best – an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? – the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life. Conclusion: Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals ‘to be themselves’. Under these circumstances, the carers judged significant side effects to be acceptable.