September 2018
Contents Introduction...3 Headlines...3 Approach...4 Findings...4 Which guideline are used...4 How and where the guidelines are used...6 Alternative sources of information...7 Use of the guidelines in practice...9
Introduction The purpose of the Scottish Palliative Care Guidelines is to provide in a readily usable format, practical, evidence-based or best-practice guidance on a range of common clinical issues. These Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with life limiting illnesses. They have been developed by a multidisciplinary group of professionals working in the community, hospital and specialist palliative care services. In order to assess the impact of the guidelines on patient care, a survey was circulated to palliative care networks and published on the guidelines website. The survey asked five questions to establish which guidelines are most used, how they are used in practice and what alternative sources of information practitioners use. This report provides an overview of the findings and provides an insight into the use of the guidelines in practice. Headlines Responses 44 Completed responses Most popular guidelines top five: Anticipatory Prescribing Care in the Last Days of Life Choosing and Changing Opioids Nausea and Vomiting Syringe Pumps 3
Approach A survey aimed at practicing clinicians was promoted online and through social media asking: Which guideline or guidelines did you use? (Select as many as appropriate) Describe briefly what the situation was (i.e. location of care, nature of symptoms) What did you do as a result of using the guidelines? (e.g. action taken or not taken, drug prescribed) What would you have done if the guidelines had not been available? How did use of the guideline impact on your patient or their family? How we have analysed and presented the results: Data from the survey responses is presented to give an overview of respondents use of the guidelines and alternative information sources Specific responses to some of the questions have been collated to present as case studies of how the guidelines are used in practice. Findings Which guideline are used Q1: Which guideline or guidelines did you use? (Select as many as appropriate) 42 responses to this question. Listed from most to least used: Anticipatory Prescribing 28 Choosing and Changing Opioids 28 Syringe Pumps (Subcutaneous medication & compatibility charts) 28 Care in the Last Days of Life 26 Nausea and Vomiting 25 Bowel Obstruction 19 Alfentanil 18 Breathlessness 18 Fentanyl Patches 16 Levomepromazine 16 Midazolam 16 Pain Management 16 Mouth Care 15 Constipation 14 Seizures 14 Delirium 13 Hiccups 13 4
Ketamine 13 Neuropathic Pain 13 Fentanyl Sublingual (Abstral) 12 Hypercalcaemia 11 Malignant spinal cord compression 11 Oxycodone 11 Renal Disease in the Last Days of Life 11 Bleeding 10 Pain Assessment 10 Weakness / Fatigue 10 Cough 9 Severe uncontrolled distress 9 Anorexia/Cachexia 8 Fentanyl Nasal Spray (Pecfent) 8 Lidocaine 8 Pain Assessment - Cognitive Impairment 8 Pruritis 8 Methadone 7 Naloxone 7 Octreotide 7 Subcutaneous Fluids 7 Depression 6 Fentanyl Buccal (Effentora) 6 Out of Hours Handover 6 Phenobarbital (Phenobarbitone) 6 Superior Vena Cava Obstruction 6 Sweating 6 Diarrhoea 4 Methylnaltrexone 4 Rapid Transfer Home in the Last Days of Life 4 5
How and where the guidelines are used Q2: Describe briefly what the situation was (i.e. location of care, nature of symptoms) 38 responses to this question Location of care: Acute: 17 Community / Primary: 10 Unknown / Mixed: 9 Medicines Info: 2 Uses these common themes emerged in the answers to question two: Teaching Prescribing Symptom management Confirm own knowledge Supplement own knowledge 6
Regularity of use, some quotes: "I use the guidelines to underpin all of my teaching" "I use the guidelines on a daily to weekly basis. " "I use the palliative care guidelines on a weekly basis (on average)." " I frequently refer to the guidelines - and also encourage others to use them." "...on daily basis" Alternative sources of information Q4: What would you have done if the guidelines had not been available? 42 responses: Consulted another information source (please describe) 66.7% Other (please describe) 0.0% Used my own clinical knowledge and judgement 45.2% Consulted a colleague 69.0% 7
Alternative information sources: Web tools, guidelines, journals, books etc. BNF, EMC, CKS, Pallcare.info (PANG), Martindale, SPC, Drugdex, AHFS, palliativedrugs.com (PCF) Local formulary or guidance, Intranet, Local health board pharmaceutical update, Guidelines from other health boards Syringe driver book Embase, Medline Oxford handbook of palliative care / of oncology Internet search Palliative care research and other expert texts, recent medical and nursing articles Colleagues consulted MDT OOH GP Hospice / hospice consultant Pharmacists Palliative care nurse / team / ward colleagues Consultant Palliative Care Specialist Pharmacist Medicines Information Other comments I may use other resources in addition to the Scottish Palliative Care guidelines to answer enquiries. However, they are a very valuable resource that I often direct enquirers to. Very easy to read, laid out very well, reliable information Would have looked for other resources but would have struggled to find the same detailed information. I am afraid I did not know that there were National Palliative Care Guidelines. I have never accessed them because I did not know about them. I generally make an assessment about symptom relief and start treatment and ask for support from the Palliative Care team, knowing that their input will be invaluable both in terms of symptom control but also in focusing on person-centred care for the patient and family. 8
Use of the guidelines in practice To illustrate the use of the palliative care guidelines, answers to questions two, three and five are collated below to build a picture of how the guidelines are used in practice and the impact this has on patients and families. Some responses have been edited slightly for brevity and clarity. Q2: Describe briefly what the situation was (i.e. location of care, nature of symptoms) Q3: What did you do as a result of using the guidelines? (e.g. action taken or not taken, drug prescribed) Q5: How did use of the guideline impact on your patient or their family? Case studies Patient with gastric cancer admitted to a surgical ward after frequent hospital admissions for gastric drainage. On this admission, they were referred to the hospital palliative care team due to a complete bowel obstruction and the team wanted advice on nausea and vomiting as the patient was too frail to operate. As the absorption of medications was unclear and the acute nature of the obstruction, I suggested converting MST dose to an appropriate Morphine dose to be given subcutaneously via a syringe driver. I advised against the previously used PRN medication, which was Metoclopramide, this was discontinued and Cyclizine added to the syringe driver, 50mg initially with additional PR doses available. The patient was quite frail so I suggested that anticipatory medications be prescribed and recommended as per the guidelines. I was able to explain to the patient and family that these treatment choices are suggested by the national guidelines and why they were appropriate for this particular condition and situation. The patient died a couple of days later with anticipatory medications available, pain well managed, able to take sips of fluid as preferred until the last stages of their life. The nausea settled itself once the bowel was rested. Patient was at home and had alfentanil in a syringe pump. I used the guidelines to compare opioid doses. Provided advice on use of another analgesia for breakthrough pain and appropriate dose. Appropriate drugs were prescribed if needed for breakthrough pain 9
Community hospital setting. The last time I used the guidelines was yesterday to look up bleeding; the midazolam had been prescribed as sub cut and I felt it may be better via IM. Using the bleeding guidelines I felt confident to change the as required dose to IM. I changed the sub cut to IM Ensured appropriate 'just in case' meds prescribed in case of a large bleed event. Patient approaching end of life with terminal distress and agitation, at home being looked after by family. Suggested Levomepromazine for agitation and midazolam for distress in end of life via CSCI with PRN levomepromazine and midazolam prescribed over and above this. Patient settled very quickly and ultimately had a peaceful death. As a rotational pharmacist covering a general medical ward I recently relied upon the Guidelines for reviewing medicines for a patient with end stage renal failure who was being discharged home for end of life care and required management of pain, SOB, agitation and nausea; respiratory secretions were also anticipated to occur. The patient also had PMH of epilepsy and family were keen for an emergency medicine to be available in case of seizures. I was able to check drug compatibility and appropriateness. The palliative care nurse suggested supplying midazolam in case of seizures and the guidelines allowed us to confirm the available formulation and doses for buccal midazolam to allow the family to administer a dose while awaiting medical assistance, as well as sub-cut midazolam (for DN to administer). The patient continued on the combination of medicines via syringe driver that were controlling their symptoms at that time and was discharged home with appropriate PRN doses. The family felt more reassured knowing that they could at least administer the buccal midazolam were the patient to have a seizure. Patient receiving morphine, midazolam and ketamine by pump in community setting. District nurses administering. Pain management was difficult until both ketamine and morphine doses increased - checked guideline for pump combinations, diluents etc. We were able to set up two syringe drivers for patient having read the guidelines - quality of life dramatically increased as a result. Information was available in a concise and easy to understand format allowing the patient to receive treatment quickly and effectively. 10
Hospital ward, older adults mental health. Physical deterioration, severe difficulty with swallowing. Due to cognitive impairment was unable to verbally communicate any specific problems example acute pain / discomfort. Was able to put into practice the guidelines for palliative mouth care. Importance of accurate assessment with the aim to provide appropriate treatment management of any identified problems. With on-going assessments carried out as often as the patient s needs required, the patient was comfortable with no sign of discomfort. Priority was also given at all times to respect the patient s dignity during delivering oral care. 11