Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.

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.

BACKGROUND: While 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: This 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 and 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 . Registered on 27 September 2016.

Laycarers can confidently prepare and administer subcutaneous injections for palliative care patients at home: A randomized controlled trial.

BACKGROUND: Palliative care patients consistently nominate home as their preferred care environment. This is challenging without support from laycarers, especially if patients require subcutaneously administered symptom relief. Laycarers typically lack confidence with this task and request professional guidance. AIM: To explore differences in laycarers' confidence in administering subcutaneous injections depending upon whether a laycarer, registered nurse or pharmacist prepared injections for subsequent administration by laycarers. DESIGN: Prospective randomized controlled trial with three intervention arms: laycarer prepares, labels and stores injections; registered nurse prepares injections; and pharmacist prepares injections for later administration by laycarer. SETTING/PARTICIPANTS: In all, 93 laycarers, from 24 urban and rural community services, completed the study. RESULTS: The primary outcome of interest was laycarer confidence with injection administration; analysis of variance revealed no significant differences between the three intervention arms; mean values ranged from 5.9 to 6.1 out of 7 ( F(2, 90) = 0.50, p = 0.61). Comparison of confidence after laycarer preparation versus other (nurse or pharmacist) was not statistically significant ( t = 0.7, df = 90, p = 0.49). Averaged over intervention arms, confidence levels increase significantly with injecting experience, from 5.3 to 6.1 ( F(1, 75) = 47.6, p < 0.001). CONCLUSION: Upskilled laycarers can confidently administer subcutaneous injections for loved ones, regardless of who prepares injections. This finding can improve patient outcomes and potentially decrease unwanted admissions to inpatient facilities.

Home-based palliative care

BACKGROUND: While most people say they would prefer to be cared for and to die at home, this outcome is often not achieved. This represents a service gap that general practitioners (GPs) are optimally positioned to fill. OBJECTIVES: The aim of this paper is to synthesise existing evidence-based frameworks of palliative care together with other resources, to present a cohesive model of care that GPs can easily systematise to guide high-quality home-based palliative care. DISCUSSION: Key clinical processes include advance care planning and development of medical goals of patient care plans and terminal care plans. Three essential elements for high-quality palliative care incorporated into the model include a compassionate GP, the care team and various practical resources. Palliative care sits well within the GP specialist scope of practice. GPs have at their disposal many resources that effectively and efficiently support them in their palliative care practice.

End-of-life care: Proactive clinical management of older Australians in the community.

BACKGROUND: Due to the changing demographics of ageing and death in Australia, general practitioners (GPs) are caring for greater numbers of people with advanced chronic conditions that will soon lead to death. GPs play a pivotal role in proactively preparing these people for end of life. OBJECTIVE: This article introduces GPs to a framework of care, based on a palliative care approach, which supports proactive management of end-of-life care for older Australians living in the community. DISCUSSION: Embedding the above framework into routine practice can help GPs deliver care, aligned with patients' preferences, at the right time and in the right place. Experience has shown that implementing proactive management of end-of-life care can increase satisfaction with GP care and help GPs meet the clinical, legal and ethical challenges associated with caring for older patients with advanced progressive conditions.

Depression in palliative care patients: a survey of assessment and treatment practices of Australian and New Zealand palliative care specialists.

OBJECTIVE: To explore the practices of members of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) in assessing and treating depression in palliative care patients. METHODS: Semistructured questionnaires were forwarded to ANZSPM members in consecutive mail-outs to survey diagnostic and treatment practices for depression. RESULTS: The response rate was 62.3%. The median prevalence of depression, as perceived by respondents, in the present respondent patient populations was 20% (range 0%-90%); 57.1% of respondents always assessed for depression, whereas 42.9% assessed for depression sometimes. The majority (98.9%) of respondents relied on clinical interviews to assess depression; non-somatic symptoms of the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) criteria were more useful than somatic symptoms. The depression screening tools most frequently used were one- and two-item questions. Pharmacological and non-pharmacological methods were used to treat depression, with selective serotonin reuptake inhibitors the most frequently prescribed medications. Psycho-educational and supportive counselling were the most frequently used non-pharmacological interventions. Nominated measures to augment depression management included improving access to psychiatry, psychology and other allied health services, the development of a screening tool specific to palliative care patients and associated guidelines for depression management. CONCLUSIONS: This is the first Australasian study to explore the practice of medical practitioners regarding depression in palliative patients. Incorporation of screening tool questions into palliative care assessment interviews may warrant future research. WHAT IS KNOWN ABOUT THE TOPIC? Depression in palliative care patients has a negative impact on quality of life; however, little is known about how Australasian palliative care medical practitioners manage depression in this patient population. WHAT DOES THIS PAPER ADD? To the researchers' knowledge, this is the first Australasian study that explores the practices of local palliative care specialists in the management of depression in palliative patients. WHAT ARE THE IMPLICATIONS FOR PRACTITIONERS? Overall management of depression in palliative care populations by Australasian practitioners is similar to that of their European colleagues. Consensus is that for assessment of depression in palliative patients, non-somatic symptoms of DSM-IV criteria are more useful than somatic symptoms. Practitioners report the need for improved access to psychiatric, psychological and other support services, for a palliative care-specific depression screening tool and for depression management guidelines applicable to palliative care patients.

An educational package that supports laycarers to safely manage breakthrough subcutaneous injections for home-based palliative care patients: development and evaluation of a service quality improvement.

BACKGROUND: Palliative care services strive to support people to live and die well in their chosen environment, with optimal symptom control and a pattern of care supportive of laycarers. The likelihood of patients remaining at home often depends upon laycarers, who may be required to manage subcutaneous medications. AIM AND DESIGN: This study reports the development, trial and evaluation of a package that teaches laycarers to manage subcutaneous medications used for symptom control in home-based patients. The package was developed by palliative care stakeholders and comprises an educational session, delivered by nurses, and a range of demonstrative, audiovisual and written resources. SETTINGS/PARTICIPANTS: The package was trialled across 24 sites and was evaluated by 76 laycarers (pre- and post-use) and 53 nurses (at study completion). RESULTS: Outcomes of primary interest were perceived global usefulness of the package and rated relevance of components. Laycarers and nurses rated the usefulness and relevance of the package highly - all means were above 5 on a 7-point scale. Also, laycarers were invited to comment on the package, and three focus groups for 26 nurses explored post hoc issues following package implementation. CONCLUSIONS: In terms of the palliative patient's illness trajectory, consensus was that the time for package introduction depended upon each particular clinical situation and laycarer. Nursing opinion was divided concerning whether it is safe and appropriate for laycarers to manage subcutaneous injections. Nevertheless, this study demonstrates that the package supports laycarers to manage subcutaneous medications. This has important implications for families, services and health-care systems.

Lack of benefit from paracetamol (acetaminophen) for palliative cancer patients requiring high-dose strong opioids: a randomized, double-blind, placebo-controlled, crossover trial.

CONTEXT: The adjunctive use of paracetamol (acetaminophen) with strong opioids has become entrenched practice in palliative care pain management, despite little evidence to support its use. OBJECTIVE: The study aim was to investigate potential analgesic benefits of 4 g of paracetamol daily for palliative cancer patients requiring high-dose opioids. METHODS: Thirty-one patients, using at least 200mg of oral morphine equivalent daily, were recruited to a prospective, double-blinded, randomized, crossover trial. Patients received usual medications plus 4 g of paracetamol or placebo for five days each in random order. Primary outcome, effect on pain, was assessed using daily diaries, including a numerical rating scale (NRS) from zero (no pain) to 10 (unbearable) and recording numbers of breakthrough analgesics. Secondary outcomes-nausea, vomiting, cognitive impairment, constipation, and overall well-being--were assessed using the NRS. Data from the last four days of each treatment were analyzed. Patients also indicated in which part of the study their pain was better controlled. RESULTS: Twenty-two patients, requiring a median dose of 255 mg of oral morphine equivalent daily, completed the trial. There were no significant order or treatment-by-order interaction effects for any variable; paired t-tests were conducted to investigate change in mean levels on outcome variables with placebo vs. paracetamol. For none of the variables was there a statistically significant difference when assessed with placebo compared with paracetamol. No change approached clinically significant levels, with a mean difference in rated pain of 0.16, and mean difference of 0.42 for a number of breakthrough medications. Fifteen patients were undecided whether paracetamol improved pain. CONCLUSIONS: These data do not support the common practice of adding regular paracetamol daily as an adjunct to high-dose opioids for pain control in cancer patients receiving palliative care.

Lay caregivers' perspectives on injecting subcutaneous medications at home.

BACKGROUND: Most palliative care patients prefer to be cared for at home. While promoting quality of life for patients, this preference impacts on their caregivers. Lay caregivers in Australia can be required to deliver and adjust complex medication regimens.This study aimed to investigate caregivers' perceptions concerning the injection of subcutaneous medications. METHODS: Fourteen caregivers were interviewed on two occasions, once during the caregiving phase and two months after bereavement. RESULTS: In the first interview, caregivers expressed anxieties associated with their ability to undertake the task of administering injections, including fears of overdosing their family member. In the bereavement interview caregivers reflected they were pleased they had contributed to the symptom relief of a family member and that although they would not necessarily volunteer to inject family members again, they were generally empowered by the experience. It is important for health professionals to support lay caregivers to successfully achieve their extended caregiving role.

Relief of incident dyspnea in palliative cancer patients: a pilot, randomized, controlled trial comparing nebulized hydromorphone, systemic hydromorphone, and nebulized saline.

Acute episodic breathlessness in patients receiving palliative care is a distressing symptom with little evidence-base to inform management. This pilot, double-blind, controlled, crossover study compared the effects of nebulized hydromorphone, systemic hydromorphone and nebulized saline for the relief of episodic breathlessness in advanced cancer patients. On three occasions of acute breathlessness, patients randomly received either nebulized hydromorphone, a systemic breakthrough dose of hydromorphone or nebulized saline together with a blinding agent. Breathlessness was scored before and 10, 20, 30, and 60 minutes post-treatment completion using a 100 mm visual analog scale. Twenty patients completed the trial. Ratings did not differ significantly across pretest treatments. Change in ratings from pretest to 10 minutes after completion of nebulization (about 20 minutes after administration of systemic hydromorphone) indicated that each of the treatments resulted in statistically significant improvements in breathlessness, with no significant differences between treatments. Over time, breathlessness decreased significantly for all treatments, with no significant differences between treatments. Only nebulized hydromorphone produced a rapid improvement in breathlessness that reached a magnitude considered to be clinically important. Interpretation of these results is considered in relation to our definition of clinical significance, the dose of hydromorphone used and the possibility of a placebo effect. This study can serve to inform the design of future trials to investigate the management of incident breathlessness.

A strategy to increase the palliative care capacity of rural primary health care providers.

OBJECTIVE: To pilot and evaluate an intervention aimed at increasing the palliative care capacity of primary health care providers in rural and remote communities. DESIGN: Pre- and post-workshop, and three months follow-up questionnaires. SETTING: Four locations in Far North Queensland. SUBJECTS: One hundred and forty-nine primary health care providers ranging from personal care workers to general practitioners (GPs). INTERVENTIONS: Fourteen workshops were conducted. These were tailored to local palliative case loads facilitated by a specialist palliative care team from the Mt Olivet Hospice Service. Workshop content consisted of introductory didactic teaching based on participant-nominated topics, small group case management discussions and a session devoted to psychosocial and counselling inputs. MAIN OUTCOME MEASURES: Cost, GP reach, evaluation of educational and clinical objectives. RESULTS: Average cost per participant--excluding wages--was 271 dollars. Thirty-two per cent of local GPs attended the workshops and 93.2% of participants reported that the workshops had satisfied their educational learning objectives. Evaluation of GP clinical performance revealed significant improvements in confidence regarding palliative care knowledge and skill levels as well as the management of common palliative symptoms. Evaluation of other primary health care providers' clinical performance showed significant improvements in skills, management and rated knowledge. CONCLUSIONS: This intervention is relatively inexpensive, has reasonable reach and is effective as measured by educational and clinical outcomes.

The effect of dexamethasone on the longevity of syringe driver subcutaneous sites in palliative care patients.

OBJECTIVE: To assess the effect of adding 1 mg dexamethasone to syringe drivers on the viability time of subcutaneous cannulation sites in palliative care patients. DESIGN: Prospective, double-blind, randomised, controlled trial in which patients received half their daily infused medications plus 1 mg dexamethasone in 1 mL saline through one subcutaneous site (test site) and the other half of their medications plus 1 mL saline through another symmetrically placed site (control site). PARTICIPANTS AND SETTING: Palliative care patients from the inpatient units at two hospices, recruited between 1999 and 2002. MAIN OUTCOME MEASURE: Difference in time that the test and control sites remained viable. RESULTS: 38 patients consented and were randomised. Twenty did not complete the trial because their participation in the study finished before either site broke down. Eighteen patients either partially completed (at least one site broke down) or fully completed (both sites broke down) the trial. In these 18 patients, test sites lasted 3.6 days longer than control sites (95% CI, 1.5-5.8 days; P = 0.002). Twelve patients fully completed the trial. In this group, test sites lasted 3.9 days longer than control sites (95% CI, 0.6-7.2 days; P = 0.025). CONCLUSIONS: The addition of 1 mg dexamethasone to syringe drivers significantly extends the viability time of subcutaneous cannulation sites in palliative care patients.