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North Derbyshire Care Pathway for the Last Days of Life NAME NHS No ___________________ ___________________ DoB Start Date ___________________ ___________________ This Care Pathway has been developed to assist clinicians with caring for patients in the terminal phase of their disease. It consists of a series of questions, which may be answered by any of the multi-disciplinary team attending the patient. It is intended as a guide based on knowledge of the terminal phase and the symptoms likely to develop. The pathway sets out standard practice for all carers on one document. Variations in clinical judgement are perfectly acceptable. These should be documented on the variance form and appropriate action taken if needed which will ultimately improve care. The pathway is a legal document and is part of the patient’s health care record. Throughout the care pathway the term ‘Organisation’ refers to all NHS Trusts, PCT’s Independent and Private establishments and Acute Hospitals and their successors in North Derbyshire. Community Hospital District Nurse/Nurse Practitioner Name Phone no. General Practitioner Name Phone no. Consultant Ward OTHER USEFUL NUMBERS NAME NUMBER ORGANISATION INSTRUCTIONS FOR USE 1. All goals are in heavy typeface. Interventions, which act as prompts to support the goals are in normal type. Things to consider are in italics. 2. If a goal is not achieved (i.e. variance) then record on the variance section of the back page. 3. The Palliative Care Symptom Guidelines are printed on the pages at the end of the pathway. Please make reference as necessary. 4. The Pathway cannot be acted upon until Section 1 is completed and signed by a Doctor and a Registered Nurse. 5. To contact the Specialist Palliative Care Team – at the Royal Hospital via Ext 2693 – In Community settings ring 01246 568801 – out of hours Medical on call via Royal Hospital switchboard 01246 277271. CRITERIA FOR USING THE CARE PATHWAY The multidisciplinary team must agree that the patient has an incurable life limiting illness and an expected prognosis of less than one week. In addition, 2 of the following criteria should apply. The patient is: Essentially bed bound Increasingly drowsy Finding it difficult to swallow (Oxford textbook of Palliative Medicine 1995 Twycross R & Lichter I. P651) NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE -1- NAME DoB NHS No. Or Patient Identification Label ALL PERSONNEL COMPLETING THE CARE PATHWAY PLEASE SIGN BELOW Name (Print) Full Signature Initials -2- Professional Title Date NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB NHS No. Or Patient Identification Label SECTION 1 PATIENT ASSESSMENT COMFORT MEASURES If ‘No’ chart as variance on the back page GOAL 1: MEDICAL TREATMENT AIMED AT SHORT TERM COMFORT YES NO A: Is the patient taking only medication which is aimed at maintaining or improving short-term comfort? YES NO If ‘No’, can any of these be stopped? E.g. Anticoagulants; antibiotics; anti-arrhythmics; anti-hypertensives; hypoglycaemics; replacement hormones; statins. OUTCOME: THE PATIENT IS NOT TROUBLED BY TAKING NON-ESSENTIAL MEDICATION YES NO YES NO B: Is the patient’s medication reliably or comfortably taken by the best route? If ‘No’ has the prescriber looked at alternatives? E.g. liquid form, S/C medication, rectal, transdermal, nebulised, via feeding tube, sublingual? OUTCOME: THE PATIENTS SYMPTOMS ARE MANAGED WITH MINIMAL DISTRESS TO THE PATIENT. C: The patient is at risk of developing symptoms. YES Do they have access to as required medication by an appropriate route? E.g. s/c diamorphine/oxycodone – for pain s/c haloperidol – for nausea/agitation s/c hyoscine butylbromide – for retained secretions Consider conversion to a Palliative Care Prescription Card Consider conversion to a syringe driver NO OUTCOME: THE PATIENTS SYMPTOMS ARE MANAGED WITHOUT DELAY CLINICAL INTERVENTION GOAL 2: CLINICAL INTERVENTION AIMED AT PATIENT COMFORT A: Is the patient receiving any intervention which is not aimed at patient comfort? E.g. Routine blood tests Gastrostomy feeds Nasogastric tube TPR/BP/O2 sats IV (fluid/medications) Subcut fluids YES NO Would stopping/removing these reduce distress? OUTCOME: PATIENT COMFORT IS MAXIMISED WITH MINIMAL DISTRESS PSYCHOLOGICAL INSIGHT GOAL 3: INTERVENTIONS AIMED AT MAXIMISING PATIENT/CARER UNDERSTANDING OF THE TERMINAL PHASE, WHILST MINIMISING FEAR AND DISTRESS YES NO A: Have you reviewed the patient/carer’s understanding of disease progression? Provide time to discuss patient’s understanding, fears, expectations and wishes Nutrition Consider notifiable diseases Consider industrial disease Prepare carers for retained secretions; Cheyne Stokes breathing; fluctuating coma; maintained awareness during comatose periods. OUTCOME: THE PATIENT/CARER HAS HAD AN OPPORTUNITY TO DISCUSS THE SITUATION AND PLAN OF CARE -3- NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB Or Patient Identification Label SECTION 1 PSYCHOLOGICAL INSIGHT (Continued) NHS No. PATIENT ASSESSMENT YES NO B: Have you checked whether there are people the patient wishes to see or to be with? This allows the patient the opportunity to deal with unfinished business. Provides time to discuss issues – family, friends, religious representatives, legal representatives. OUTCOME: THE PATIENT FEELS AT PEACE AND IS ABLE TO DEAL WITH UNFINISHED BUSINESS YES NO C: Are you clear about the patient’s wishes regarding their care leading up to and following death? Provide time to discuss specific wishes e.g. visiting needs; preferred place of care; cultural needs; spiritual needs; care of the deceased person; organ donation; funeral request. Document specific wishes below OUTCOME: THE PATIENTS WISHES ARE REALISED AND CAN BE BUILT INTO THE CARE PLAN. D: Have you provided the family/carers* with the YES NO necessary information regarding who to contact following death? E.g. In community – GP, In hospital – Bereavement Service Pathway explained and discussed with a) Patient b) Family c) Carers d) Not discussed Family/Carer express understanding of Pathway YES NO N/ A OUTCOME: THE FAMILY ARE AWARE WHO TO CONTACT FOLLOWING DEATH RESUSCITATION For Primary and Secondary care settings Agreed NOT to resuscitate – according to Organisational Guidelines Complete the appropriate Organisational documentation This patient is imminently dying. Attempts at CPR would not benefit them therefore DO NOT ATTEMPT CARDIOPULMONARY RESUSCITATION. Doctor’s signature Contact or Bleep No. Doctors Name (please print) Date If a decision to resuscitate is made, then discontinue the pathway, and complete the variance. If the patient moves to another care setting this decision must be discussed with the new responsible doctor, reviewed as soon as possible, and this section must be completed again. OUTCOME: THE PATIENT IS NOT SUBJECTED TO INAPPROPRIATE PROCEDURES COMMUNICATION WITH OUT OF HOURS SERVICES IN COMMUNITY GOAL 4: OUT OF HOURS AND EMERGENCY SERVICES ARE INFORMED OF THE PATIENT’S CONDITION Handover/Critical Care/Summary sheet faxed to YES NO Derbyshire Healthcare/NHS Direct/EMAS/Other Agencies as relevant? OUTCOME – THE PATIENT AND CARERS RECEIVE PROMPT AND APPROPRIATE OUT OF HOURS CARE COMPLETION Doctor’s signature SECTION ONE COMPLETED Date Print Name Nurse’s signature Date Print Name * Family/Carers refers to all important relationships with the patient. -4- NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB NHS No. Or Patient Identification Label Codes (Please enter in columns) A = Achieved or V = Variance and Initial each box. In Inpatient areas this must be completed at least 4 hourly e.g. 0800, 1200, 1600, 2000, midnight and 0400 hours. In Home settings complete at regular intervals as appropriate. Section 2 FOCUS OF PATIENT CARE Date Time ASSESSMENT OF PAIN/COMFORT MEASURES PAIN Goal 5: Patient is pain free - Verbalised by patient if conscious Pain free on movement Appears peaceful Move only for comfort AGITATION Goal 6: Patient is not agitated - Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) - Exclude retention of urine as cause RESPIRATORY TRACT SECRETIONS Goal 7: Patient’s breathing is not made difficult by excessive secretions NAUSEA & VOMITING Goal 8: Patient does not feel nauseated or vomits - Verbalises if conscious OTHER SYMPTONS (e.g dyspnoea) a) b) ESSENTIAL CARE PERSONAL HYGIENE Goal 9: Patient feels (or appears) fresh & comfortable - Hygiene needs are addressed regularly Take into account personal dignity and privacy MICTURITION DIFFICULTIES Goal 10: Patient is comfortable, clean and dry - Urinary catheter if in retention as per policy Continence Management if general weakness creates incontinence. BOWEL CARE Goal 11: Patient is not agitated or distressed due to constipation or diarrhoea Constipation can lead to retention of urine and diarrhoea (see Goal 10) MOUTH CARE Goal 12: The patient has a moist comfortable mouth - Use a small soft headed toothbrush and paste. If not tolerated or gums damaged use foam stick Dentures removed and cleaned Mouthwashes/oral treatments as prescribed Apply white paraffin to lips IMMOBILITY Goal 13: Patient is comfortable, in safe environment - Change position as appropriate - Use appropriate equipment, consider pressure relief MEDICATION Goal 14: All medication is given safely and accurately according to Organisational Policy If syringe driver in progress check & change according to Organisational Policy -5- Date Time Date Time Date Time Date Time Date Time NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB NHS No. Or Patient Identification Label This section to be completed as appropriate – at least once to twice daily (Please enter in columns) A = Achieved or V = Variance and Initial each box PSYCHOLOGICAL / INSIGHT / SUPPORT Date Time Date Time Date Time Date Time PATIENT Goal 15: Patient is aware of the situation as appropriate - Patient is informed of procedures - Touch and verbal communication are important FAMILY / CARERS* Goal 16: Family/Carers* are prepared for the patient’s imminent death with the aim of achieving peace of mind and acceptance - Check understanding Recognition of patient dying Inform of measures taken to maintain patient’s comfort Explain possibility of physical symptoms e.g fatigue Psychological symptoms such as anxiety/depression Social issues such as financial implications Goal 17: The needs of those attending the patient in hospital/nursing/residential homes are accommodated The family/carers* are informed of available facilities, including carer’s room if appropriate RELIGIOUS / SPIRITUAL SUPPORT Goal 18: Appropriate religious / spiritual support has been offered COMMUNICATION Goal 19: Update other services / out of hours services of any changes relevant to them. IF YOU HAVE CHARTED “V” AGAINST ANY GOAL SO FAR, PLEASE COMPLETE VARIANCE SHEET AT THE BACK OF THE PATHWAY BEFORE INITIALLING ABOVE Repeat this page as needed MULTIDISCIPLINARY PROGRESS NOTES * Family / Carers refers to all important relationships with the patient -6- NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB NHS No. Or Patient Identification Label VERIFICATION OF DEATH Date of death: __________________________________ Time of death ___________ Persons Present _____________________________________________________________ Additional Information _____________________________________________________________ ___________________________________________________________________________________ SECTION 3 CARE AFTER DEATH Goal 20: GP Practice contacted re patients death Date YES NO YES NO YES NO YES NO YES NO YES NO YES NO YES NO YES NO Goal 21: Other agencies contacted regarding patients death e.g District Nurse Marie Curie Nurse Community Macmillan Nurse Social Services Acute / Other Hospital Medical Records Funding Nursing Care Team Goal 22: Procedures following death discussed or carried out as per patient wishes (see section 1, Goal 3C) In Hospital - Procedures for laying out followed according to Organisational Policy - Dealing with deceased checklist completed Goal 23: Necessary documentation and advice is given to appropriate person e.g In Community Contact funeral director Registration of death Bereavement Support Information What to do After Death Booklet (D49) Contact Mediquip/Supplier to arrange collection of equipment Return all medication to Chemist (Except care homes) In Hospital Family/Carer* given Bereavement Service Card and Trust Bereavement Booklet Trust Policy followed for Patients valuables and belongings Bereavement Service Information Leaflet Completed Property and Completed Leaflet collected by Bereavement Service IF YOU HAVE CHARTED ‘NO’ AGAINST ANY GOAL SO FAR, PLEASE COMPLETE VARIANCE SHEET AT THE BACK OF THE PATHWAY BEFORE SIGNING BELOW Nurses Signature _____________________________________________ Date _____________________________________________ *Family / Carers refers to all important relationships with the patient -7- NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAME DoB NHS No. Or Patient Identification Label VARIANCE ANALYSIS FOR LAST DAYS OF LIFE G.P ____________________________________ DATE OF DEATH ____________________________________ If a variance is noted please ensure that it is reviewed within 24 hours DATE WHAT VARIANCE OCCURRED? WHY DID VARIANCE OCCUR? -8- ACTION TAKEN INITIALS TITLE SYMPTOM MANAGEMENT GUIDELINES FOR THE NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE PAIN YES Is the patient already taking morphine or other strong opioids? Continuous s/c diamorphine Calculate the 24 hour dose of oral morphine, divide the total dose by 3, which is the equivalent dose of diamorphine over 24 hours s/c via syringe driver – e.g patient on 90mg Zomorph BD = 180mg oral morphine over 24 hours, which equals 60mg diamorphine s/c over 24 hour infusion. Transdermal Fentanyl If the patient is using transdermal fentanyl but now has uncontrolled pain, continue the fentanyl and use appropriate dose s/c diamorphine as required in addition. See guidelines. Breakthrough Analgesia To calculate the breakthrough dose of diamorphine divide the 24-hour dose of diamorphine in the syringe driver by 6. e.g if the patient is receiving 60mg diamorphine s/c over 24 hours the breakthrough dose of diamorphine is 10mg s/c p.r.n Alternatively Morphine oral liquid may be used if the patient is taking sips of fluid. To calculate the equivalent oral morphine breakthrough dose, multiply the s/c breakthrough dose by 3 e.g. s/c diamorphine 10mg for breakthrough up to hourly = 30mg oral morphine for breakthrough. NO Has the patient got pain? YES NO As required medication 1. Diamorphine 2.5mg s/c p.r.n 2. Morphine sulphate 5mg orally p.r.n 1. Diamorphine 2.5mg stat 2. Diamorphine 10mg/24 hours via s/c infusion. 3. Diamorphine 2.5mg s/c p.r.n To calculate the subsequent doses of diamorphine over 24 hours Review the doses of p.r.n analgesia given in the previous 24-hour period. If more than one dose has been required, other than to pre-empt during care (e.g before a dressing etc) then consider a 30% to 50% increase in the daily subcutaneous dose. If this is not controlling the pain, or doses need escalating on a daily basis seek specialist advice. If diamorphine is unavailable or the patient has previously been on oral oxycodone use the same calculation format as above using Oxycodone. Diamorphine 1mg:Oxycodone 1mg For further information see the additional conversion sheet attached IF SYMPTOMS PERSIST SEEK SPECIALIST ADVICE -9- SYMPTOM MANAGEMENT GUIDELINES FOR THE NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE RETAINED SECRETIONS Present Absent 1. Explain to relatives that for the patient retained secretions are not bothersome due to decreased sensitivity of pharynx. IF the relatives are concerned or the patient appears distressed: 2. Hyoscine butylbromide 20mg s/c stat. 3. Hyoscine butylbromide 60mg / 24 hours via s/c infusion. 4. Hyoscine butylbromide 20mg s/c hourly p.r.n. As required medication Hyoscine butylbromide 20mg s/c IF SYMPTOMS PERSIST SEEK SPECIALIST ADVICE - 10 - SYMPTOM MANAGEMENT GUIDELINES FOR THE NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE TERMINAL RESTLESSNESS AND AGITATION Present Absent As required medication 1. Exclude treatable causes Pain Retention of urine or faeces Hypercalcaemia if would be appropriate to treat 2a Delirium 2b Anxiety/Dyspnoea 1. Haloperidol 2.5mg stat 2. Haloperidol 5mg/24hrs via s/c infusion 3. Haloperidol 2.5mg s/c p.r.n 1. Midazolam 2.5mg s/c stat 2. Midazolam 10mg/24hrs via s/c infusion 3. Midazolam 2.5mg s/c p.r.n Review every 24 hours Increase the dose of Haloperidol to 10mg/24 hours via s/c infusion if necessary. N.B A total dose of 15mg/24hours – including stat dose, continuous dose and p.r.n. doses should not be exceeded. Haloperidol 2.5mg s/c p.r.n Review in 24 hours Review every 24 hours Increase the 24 hour dosage according to the total dose of Midazolam given on a p.r.n basis up to a total dose of 10mg. IF SYMPTOMS PERSIST SEEK SPECIALIST ADVICE - 11 - SYMPTOM MANAGEMENT GUIDELINES FOR THE NORTH DERBYSHIRE CARE PATHWAY FOR THE LAST DAYS OF LIFE NAUSEA YES Previously on anti emetic Convert to s/c as appropriate NO YES Nausea present 1. Haloperidol 1.5 – 2.5mg s/c stat 2. Haloperidol 5mg via s/c infusion 3. Haloperidol 1.5 – 2.5mg s/c p.r.n NB A total of 15mg / 24 hours – including stat doses, continuous s/c doses and p.r.n. doses – should not be exceeded Review in 24 hours Increase to 10mg/24 hours s/c if nausea persists For persistent nausea switch to: 1. Levomepromazine (Nozinzn) 6.25mg/via s/c infusion 2. Levomepromazine 6.25mg p.r.n s/c N.B A total of 50mg/24 hours – including continuous and p.r.n doses – should not be exceeded - 12 - NO Prescribe So available if needed Haloperidol 1.5 – 2.5mg s/c p.r.n (up to a total of 15mg/24 hours) PALLIATIVE CARE DOSE CONVERSION CHART Morphine 4 hourly Zomorph or MST b.d. MXL o.d. Oxynorm 4 hourly Oxycontin b.d. Oxycodone SC in 24 hours Diamorphine or Oxynorm s/c 4 hourly Diamorphine s/c in 24 hours Fentanyl patch 72 hourly 10 mg 30mg 60mg 5mg 15mg 20mg 5mg 20mg 25mcg 20mg 60mg 120mg 10mg 30mg 40mg 5mg 40mg 25-50mcg 30mg 90mg 180mg 10mg 40mg 60mg 10mg 60mg 50mcg 40mg 120mg 240mg 20mg 60mg 80mg 15mg 80mg 50-75mcg 50mg 150mg 300mg 20mg 70mg 100mg 20mg 100mg 75-100mcg 60mg 70mg 80mg 180mg 200mg 240mg 360mg 400mg 480mg 30mg 30mg 40mg 90mg 100mg 120mg 120mg 140mg 160mg 20mg 20mg 30mg 120mg 140mg 160mg 90mg 100mg 260mg 300mg 540mg 600mg 40mg 50mg 130mg 150mg 180mg 200mg 30mg 30mg 180mg 200mg 110mg 120mg 140mg 330mg 360mg 420mg 660mg 720mg 840mg 50mg 60mg 70mg 160mg 180mg 200mg 220mg 240mg 300mg 40mg 40mg 50mg 220mg 240mg 300mg 160mg 480mg 960mg 80mg 240mg 320mg 60mg 330mg 180mg 540mg 1080mg 90mg 250mg 360mg 60mg 360mg 100mcg 125mcg 125150mcg 150mcg 150175mcg 175mcg 200mcg 225275mcg 250275mcg 300mcg - 13 - Buprenorphine patch 72 hourly 35 - 52.5 mcg 52.5-70 mcg 87.5 – 105 mcg 105122.5 mcg 122.5140 mcg Hydromorphone 4 Hourly Hydromorphone SR b.d. 1.3mg 4mg 2.6mg 8mg 3.9mg 12mg 5.2mg 16mg 6.5mg 20mg 7.8mg 9.1mg 10.4mg 24mg 28mg 32mg 11.7mg 13mg 36mg 40mg 14.3mg 15.6mg 18.2mg 44mg 48mg 56mg 20.8mg 64mg 23.4mg 72mg