Abbreviations used in Care Pathway. CNS Clinical Nurse C Chaplain / clergy / religious adviser

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Patient's Name: D.O.B: Patient GP: Named Nurse: Name: Adapted LCP Version 12 PALLIATIVE CARE PATHWAY (End Stage) PRIMARY CARE DO NOT PUT PATIENT ON THIS PATHWAY UNLESS The Multi-professional Team have agreed life expectancy is estimated to be a small number of days. AND the patient has two of the following: Is bedridden Only able to take sips of fluids No longer able to take tablets Is weak and drowsy for extended periods of time Has decreasing/fluctuating levels of consciousness This Care Pathway has been developed by a multidisciplinary team. It is intended as a GUIDE to care and treatment, and an aid to documenting patient and family care. All healthcare professionals are of course free to exercise their own professional judgement when using this Pathway. However if the Care Pathway is varied from for any reason, the reason for variation and subsequent action taken must be documented on the variance sheet. Any comments regarding this care pathway should be sent to Annette Villis Suffolk EOL Lead Facilitator 07584705758 or e-mail: avgsf@stelizabethhospice.org.uk If you have any problems completing the pathway, please contact your local Hospice: St Elizabeth Hospice 0800 56 70 111 or St Nicholas Hospice Care 01284 766133 Guidelines referred to when developing this Care Pathway 1. East of England Towards the best Together A clinical Vision for our NHS now & for the next decade 2008 2. Guidelines for the Use of Drugs in Symptom Control Mid Anglia Palliative Care Network Guidelines 3. DOH End of Life Strategy 2008 4. Royal Liverpool and Broadgreen University Hospitals NHS Trust. Integrated Care Pathway for the Terminal/Dying Phase. 1998 5. Adapted from South Worcestershire PCT Palliative Care Pathway Abbreviations used in Care Pathway DN District Nurse Dr Doctor CNS Clinical Nurse Specialist/H@H C Chaplain / clergy / religious adviser SEH St Elizabeth Hospice Team CM Community Matron SNHC St Nicholas Hospice Care Soc Social Worker RN Registered Nurse T Any member of the above Version 3 Apr 11 ASV Page 1 of 22

Clinical Decision Name: Algorithm Decision making in: diagnosing dying & use of the LCP supporting care in the last hours or days of life Assessment Clinical Decision Deterioration in the patient s condition suggests that the patient could be dying Multidisciplinary team (MDT) assessment Could the patient be in the last hours or days of life? Is there a potentially reversible cause for the patient s condition and is it appropriate to attempt reversal? e.g. exclude opioid toxicity, hypercalcaemia, infection. Is Specialist referral needed? e.g. oncology opinion, respiratory team Patient is NOT diagnosed as dying (in the last hours or days of life) Patient IS diagnosed as dying (in the last hours or days of life) Communication Management Review the current plan of care Discussion with the patient and relative or carer to explain the new or revised plan of care Patient, relative or carer communication is focused on recognition & understanding that the patient is dying Discussion with the patient, relative or carer to explain the current plan of care & use of the LCP. Best interest decision made if patient is incompetent. The Liverpool Care Pathway for the Dying Patient (LCP) is commenced including ongoing regular assessments Reassessment A full multidisciplinary team (MDT) reassessment & review of the current plan of care should be triggered when 1 or more of the following apply: Improved conscious level, functional ability, oral intake, mobility, ability to perform self-care and or Concerns expressed regarding management plan from patient, relative or carer or team member and or It is 3 days since the last full Multidisciplinary team (MDT) assessment Suffolk Always Community remember Healthcare that the Specialist Palliative Care Team are there for advice and support, especially if: Palliative Symptom Care Pathway control (End is difficult stage) Version and/or 12 if there are difficult communication issues or you need advice or support Version 3 Apr 11 ASV regarding your care delivery supported by the LCP. Phone your local Page Hospice 2 of 22

Location: Care Home/Community etc: ----------------------------------------------------------- Following a full MDT assessment and a decision to use the LCP: Name: Date LCP Commenced: Time LCP Commenced: Name DR (Print) ---------------------------------- Signature -------------------------------- Name RN (Print) ----------------------------------- Signature -------------------------------- This will vary in according to circumstances and local governance arrangements. In general this should be the most senior healthcare professional responsible for the patient s care at the earliest opportunity if different from above. Name (print) -------------------------------------- Signature ---------------------------------- Liverpool Care Pathway for the Dying Patient (LCP) supporting care in the last days or hours of life The LCP generic document guides and enables healthcare professionals to focus on care in the last days or hours of life. This provides high quality care tailored to the patient s individual needs, when their death is expected. Using the LCP in any environment requires regular assessment and involves regular reflection, challenge, critical senior decision-making and clinical skill, in the best interest of the patient. A robust continuous learning and teaching programme must underpin the use of the LCP. The recognition and diagnosis of dying is always complex; irrespective of previous diagnosis or history. Uncertainty is an integral part of dying. There are occasions when a patient who is thought to be dying lives longer than expected and vice verse. Seek a second opinion or specialist palliative care support as required. Changes in care at this complex, uncertain time are made in the best interest of the patient and relative or carer and needs to be reviewed regularly by the multidisciplinary team (MDT) Good comprehensive clear communication is pivotal and all decisions leading to a change in care delivery should be communicated to the patient where appropriate and to the relatives or carer. The views of all concerned must be listened to and documented. If a goal on the LCP is not achieved this should be coded as a variance. This is not a negative process but demonstrates the individual nature of the patient s condition based on their particular needs, your clinical judgement and the needs of the relative or carer. The LCP does not preclude the use of clinically assisted nutrition or hydration or antibiotics. All clinical decisions must be made in the patient s best interest. A blanket policy of clinically assisted (artificial ) nutrition or hydration, or of no clinically assisted (artificial) hydration is ethically indefensible and in the case of patients lacking capacity prohibited under the Mental Capacity Act (2005) For the purposes of this LCP generic version 12 document- The term best interest includes medical, physical, emotional, social and spiritual and all other factors relevant to the patient s welfare. The patient will be assessed regularly and formal full MDT review must be undertaken every 3 days Version 3 Apr 11 ASV Page 3 of 22

Name: SIGNATURES OF THE MULTIDISCIPLINARY TEAM All staff completing any part of this Care Pathway must enter their details below (once only) Name (please print) Designation Contact No: Signature to be used throughout the patient record Record all full MDT assessments here (including full formal MDT assessment) every 3 days Reassessment date: Reassessment date: Reassessment date: Reassessment date: Reassessment time: Reassessment time: Reassessment time: Reassessment time: If the LCP is discontinued please record here: Date: Time: Reasons why LCP discontinued Decision to discontinue LCP shared with patient YES NO Decision to discontinue LCP shared with relative/carer YES NO Version 3 Apr 11 ASV Page 4 of 22

Name: Desig INITIAL PATIENT ASSESSMENT Sign/Desig Date/Time Dr Or RN DIAGNOSIS Primary Secondary Date of commencement on Care Pathway. / / Dr or RN PHYSICAL CONDITION Unable to swallow Nausea Vomiting Bowel problems Confused Agitation Dyspnoea Distressed Aware Conscious Urinary problems Pain Respiratory tract secretions Restless Other... Yes No Other comments COMFORT MEASURES No. Desig INTERVENTION If an intervention is not carried out for any reason, please tick No and document intervention number, reason and action taken in multidisciplinary progress notes (P.15) Y N Sign/Desig Date/Time 1a Dr Current medication assessed/non-essentials discontinued 1b Dr Appropriate oral drugs converted to subcutaneous route and syringe driver commenced if needed 2 Dr PRN medication written up for any of the below by appropriate route See Guideline ref. 2. Pain - Analgesia Nausea & Vomiting - Anti-emetic Agitation - Sedative Respiratory Tract secretions - Anti-cholinergic 3 Dr Discontinue inappropriate interventions: (if not receiving any of below treatments please tick N/A) Blood tests N/A Antibiotics N/A Blood sugar monitoring N/A Oxygen therapy N/A Recording vital signs N/A Version 3 Apr 11 ASV Page 5 of 22

Name: No. Desig INTERVENTION If an intervention is not carried out for any reason, please tick No and document intervention number, reason and action taken in multidisciplinary progress notes Y N Sign/Desig Date/Time 4 Dr Has the decision/explanation re: DNACPR Been written in patient notes and form completed, family been offered a DNACPR information leaflet? Support a Natural and Dignified Death Resuscitation status has been communicated to: Patient/family if appropriate Patient/family is aware patient is dying Deactivate cardiac defibrillators (ICD S) Contact patients Cardiologist or Heart Failure Nurse Specialist Refer to local policies and procedures Information leaflet given to patient/carer if appropriate Doctors signature Date 5 RN Decisions taken to discontinue inappropriate nursing interventions Position for comfort only 6 RN Syringe Driver set up within 4 hours of Doctors order Syringe Driver not appropriate 6b DR RN The need for clinically assisted (artificial) hydration is reviewed by the MDT If clinically assisted (artificial) hydration is in place please record route: IV S/C PEG/PE NG Is clinically assisted (artificial) hydration Not Required Discontinued Continued Commenced Version 3 Apr 11 ASV Page 6 of 22

Name: PSYCHOLOGICAL ASSESSMENT INTERVENTION No. Desig If an intervention is not carried out for any reason, please tick No and document intervention number, reason and action taken in multidisciplinary progress notes Y N Sign/Desig Date/Time 7a T Insight into condition identified Patient aware of diagnosis Family aware of diagnosis Other (please specify)...... aware of diagnosis 7b T Recognition of dying: Patient Family Other (please specify)....... 7c Identify how family/other are to be informed of patient s impending death At any time Not at time Primary Contact Name Relationship to Patient Tel No.. Secondary Contact... Tel No.. 8 T Patient and family able to communicate effectively 9 T Patient in their chosen place of dying 10 T Spiritual/Religious/Cultural Needs Identified Discussed with Patient Discussed with Family Discussed with other (please specify).... Formal religion identified Support identified Name:.Tel no:. Version 3 Apr 11 ASV Page 7 of 22

No. Desig INTERVENTION If an intervention is not carried out for any reason, please tick No and document intervention number, reason and action taken in multidisciplinary progress notes 11 T Bereavement Planning Discussed Name: Y N Sign/Desig Date/Time 12 T Communication with other team members 13 T Plan of Care explained and discussed with: Patient Family Other (please specify)... Please record information given in multi disciplinary notes P.15. Version 3 Apr 11 ASV Page 8 of 22

ONGOING ASSESSMENT DAY 1 - Date..././ Name: OUTCOMES No. Desig If an outcome is not achieved for any reason, please tick No and document outcome number, reason and action taken in multidisciplinary progress notes Assessment times Y N Signed/ Designation / Time 14 T PAIN Outcome: Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Move only for comfort 15 T AGITATION Outcome: Patient is calm & settled Patient does not show signs of delirium, terminal anguish, restlessness, twitching. Exclude retention of urine as a cause 16 T RESPIRATORY TRACT SECRETIONS Outcome: Noisy breathing is minimised Symptoms discussed with family/other Medication to be given as soon as symptoms arise Patient positioned appropriately 17 T NAUSEA & VOMITING Outcome: Patient is free from nausea/vomiting Patient verbalises if conscious 18 T OTHER SYMPTOMS e.g. dyspnoea/itch a).. b).. c).. Version 3 Apr 11 ASV Page 9 of 22

OUTCOMES Name: No. Desig If an outcome is not achieved for any reason, please tick No and document outcome number, reason and action taken in multidisciplinary progress notes (P.15) Assessment times Y N Signed/ Designation/Time 19 T MOUTH / EYE CARE Outcome: Oral and eye care given Family other involved in care given 20 T MICTURITION 21 21b T Outcome: Patient is comfortable Urinary catheter if in retention Urinary catheter, conveen or pads if general weakness creates incontinence Passed urine BOWEL CARE Outcome: Patient is comfortable Bowels opened 22 RN MEDICATION Outcome: All appropriate medications given via an appropriate route safely & accurately Progress of syringe driver recorded 4 hourly Syringe/tubing checked for signs of clouding 23 T MOBILITY/PRESSURE AREA CARE Outcome: Patient is comfortable and in a safe environment Supervision required Comfort maintained with pressure relieving aids as appropriate Hygiene needs addressed 24 T PSYCHOLOGICAL SUPPORT Outcome: Patient aware of his/her situation Patient is informed of procedures Touch, verbal communication is continued 25 T SPIRITUAL/ RELIGIOUS/ CULTURAL SUPPORT Outcome: The need identified on page 4, has been addressed AM PM AM PM a.m. p.m. a.m. p.m. Daily 26 T FAMILY/OTHER Outcome: Family are prepared for the patient's imminent death with the aim of achieving peace of mind and understanding Check understanding Recognition of the patient dying Inform of measures taken to maintain comfort Family members have clarified whether they wish to be present when the patient dies Version 3 Apr 11 ASV Page 10 of 22 a.m. p.m.

ONGOING ASSESSMENT Name: DAY. Date..././ OUTCOMES No. Desig If an outcome is not achieved for any reason, please tick No and document outcome number, reason and action taken in multidisciplinary progress notes (P.15) Assessment times Y N Signed/ Designation/ Time 14 T PAIN Outcome: Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Move only for comfort 15 T AGITATION Outcome: Patient is calm & settled Patient does not show signs of delirium, terminal anguish, restlessness, twitching. Exclude retention of urine as a cause 16 T RESPIRATORY TRACT SECRETIONS Outcome: Noisy breathing is minimised Symptoms discussed with family/other Medication to be given as soon as symptoms arise Patient positioned appropriately 17 T NAUSEA & VOMITING Outcome: Patient is free from nausea/vomiting Patient verbalises if conscious 18 T OTHER SYMPTOMS e.g. dyspnoea/itch d).. e).. f).. Version 3 Apr 11 ASV Page 11 of 22

DAY. Continued. Name: OUTCOMES No. Desig If an outcome is not achieved for any reason, please tick No and document outcome number, reason and action taken in multidisciplinary progress notes Assessment times Y N Signed/ Designation/Time 19 T MOUTH / EYE CARE Outcome: Oral and eye care given 20 T MICTURITION Outcome: Patient is comfortable 21 T BOWEL CARE Urinary catheter if in retention Urinary catheter, conveen or pads if general weakness creates incontinence Outcome: Patient is comfortable 22 RN MEDICATION Outcome: All appropriate medications given via an appropriate route safely & accurately. Progress of syringe driver recorded Syringe/tubing checked for signs of clouding 23 T MOBILITY/PRESSURE AREA CARE Outcome: Patient is comfortable and in a safe environment Supervision required Comfort maintained with pressure relieving aids as appropriate Hygiene needs addressed 24 T PSYCHOLOGICAL SUPPORT Outcome: Patient aware of his/her situation Patient is informed of procedures Touch, verbal communication is continued a.m. p.m. a.m. p.m. 25 T SPIRITUAL/ RELIGIOUS/ CULTURAL SUPPORT Outcome: The need identified on page 4, has been addressed 26 T FAMILY/OTHER Outcome: Family are prepared for the patient's imminent death with the aim of achieving peace a.m. of mind and acceptance Check understanding Recognition of the patient dying Inform of measures taken to maintain comfort p.m. Needs of those attending the patient are accommodated Version 3 Apr 11 ASV Page 12 of 22 Daily

MULTI-DISCIPLINARY PROGRESS NOTES Please use this sheet to document any additional information required to ensure appropriate care for patient Name: No Sign/Desig Date/Time Version 3 Apr 11 ASV Page 13 of 22

Name: MULTI-DISCIPLINARY PROGRESS NOTES Please use this sheet to document any additional information required to ensure appropriate care for patient No Sign/Desig Date/Time Version 3 Apr 11 ASV Page 14 of 22

Name: Variance Analysis What Variance Occurred & why? Action Taken Outcome Version 3 Apr 11 ASV Page 15 of 22

Name: Name:.... NHS No: Date:. VERIFICATION OF DEATH Date of Death:. Time of Death:. Persons present:.. Notes:. Signature:... Time Verified: Care After Death GP Practice contacted re: patient s death Date:.. If out of hours contact on next working day Message can be left with Receptionist Yes No Procedures for laying out followed according to local policy Carry out specific religious/spiritual/cultural needs - requests Yes No Procedure following death discussed or carried out Check for following: Explain Chapel of Rest viewing by contacting Funeral Director Family aware of cardiac devices (ICD s) or pacemaker must be remove prior to cremation Post mortem discussed as appropriate if required Family/Other given information on community procedures Information booklet given to family/other about necessary legal tasks Relatives/other informed to ring Registrars Office to make an appointment Yes Yes No No Necessary documentation and advice is given to the appropriate person What to do after death booklet given (DHSS) or local equivalent Yes No Bereavement leaflet given Information leaflet on grieving and local support given Yes No If you have charted No against any of the above, please complete variance sheet at the back of the pathway before signing below Health Professional Signature: Date:.. HAVE YOU COMPLETED THE LAST OBSERVATION? Version 3 Apr 11 ASV Page 16 of 22

Name: Use of Fentanyl Patches + Diamorphine for pain control Leave fentanyl patch in place and continue to replace every 3 days Prescribe breakthrough medication as described below And commence syringe driver using Diamorphine Start at a dose of: the patch strength divided by 3. Round dose up to nearest 5mg e.g. patient using 50mcg patch: diamorphine dose = 50 divided by 3 = 16.67mg. Commence syringe driver at 20mg in 24hrs Prescribe as required breakthrough doses as described below Breakthrough doses:- Remember that patients may be pain controlled with both Fentanyl patch and syringe driver. Both of these must be considered and added together when calculating an appropriate breakthrough analgesic Use of Fentanyl Patches + Diamorphine For pain control at END OF LIFE Fentanyl patch dose (mcg/hr) Diamorphine s/c breakthrough dose SUPPORTIVE INFORMATION: 25 5mg 50 10mg 75 15mg 100 20mg If symptoms persist, contact the Community Specialist Palliative Care Team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care: 01284 766133 Version 3 Apr 11 ASV Page 17 of 22

Name: Symptom Control Guidelines for pain using s/c DIAMORPHINE - Oxycodone Patient is in pain Patient s pain is controlled Is patient already taking oral morphine? Is patient already taking oral morphine? YES NO YES NO 1. Convert to a Syringe Driver accordingly 1. DIAMORPHINE 2.5mg - 5mg s/c prn OR 2 Oxycodone 2mg-5mg S/C PRN 2. After 24hrs review medication, if three or more doses required prn then consider a syringe driver over 24hrs 1.To convert a patient from oral morphine to a 24hr s/c infusion of DIAMORPHINE divide the total daily dose of morphine by 3 e.g. MST 30mg bd orally = DIAMORPHINE 20mg via s/c syringe driver OR For Oxycodone divide the total daily of Morphine by 4 EG MST 60mg BD Orally = Oxycodone 15mg S/C via S/Driver 2. Prescribe PRN dose of DIAMORPHINE which should be 1/6 of 24hr dose in driver e.g. DIAMORPHINE 20mg s/c via driver will require 2.5-5mg DIAMORPHINE s/c prn Oxycodone 15mg S/C via S/D will require 2-5/5mg Oxycodone S/C PRN 1. DIAMORPHINE 2.5mg- 5mg s/c prn OR 2 Oxycodone 2mg -5mg S/C PRN 2. After 24hrs review medication, if three or more doses required prn then consider a syringe driver over 24hrs SUPPORTIVE INFORMATION: To convert from other strong opioids or if symptoms persist contact the Community Specialist Palliative Care Team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care: 01284 766133 Anticipatory prescribing in this manner will ensure that in the last hours/days of life there is no delay responding to a symptom if it occurs. These guidelines are produced according to local policy and procedure. Version 3 Apr 11 ASV Page 18 of 22

Symptom Control Guidelines for Restlessness/Agitation Name: Patient is restless, agitated or distressed with no easily removable cause YES NO 1. MIDAZOLAM 2.5 5mg s/c prn 1. MIDAZOLAM 2.5 5mg s/c prn 2. Review the required medication after 24 hrs, if three or more prn doses have been required then consider a syringe driver over 24 hrs 2. If three or more doses required prn, consider use of a syringe driver over 24 hrs 3. Continue to give pm dosage accordingly. SUPPORTIVE INFORMATION: If symptoms persist contact Community Specialist Palliative Care Team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care: 01284 766133 Anticipatory prescribing in this manner will ensure that in the last hours/days of life there is no delay responding to a symptom if it occurs. These guidelines are produced according to local policy and procedure. Version 3 Apr 11 ASV Page 19 of 22

Name: Symptom Control Guidelines for Respiratory tract secretions Patient has excessive respiratory tract secretions YES NO Reposition Patient 1. HYOSCINE BUTYLBROMIDE 20mg s/c prn 1. HYOSCINE BUTYLBROMIDE 20mg s/c bolus injections. Consider syringe driver 60mg/80mz over 24 hours 2. If two or more doses of prn HYOSCINE BUTYLBROMIDE required then consider a syringe driver s/c over 24 hrs 2. Continue to give pm dosage accordingly. 3. Increase total 24hr dose to 100mg after 24 hrs if symptoms persist SUPPORTIVE INFORMATION: If symptoms persist contact Community Specialist Palliative Care team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care: 01284 766133 Hyoscine Hydrobromide 0.4-0.6mg s/c prn may be used as an alternative Anticipatory prescribing in this manner will ensure that in the last hours/days of life there is no delay responding to a symptom if it occurs. These guidelines are produced according to local policy and procedure. Version 3 Apr 11 ASV Page 20 of 22

Symptom Control Guidelines for Dyspnoea Name: YES NO Is patient already taking oral morphine for breathlessness? 1. DIAMORPHINE 2.5mg-5mg s/c prn OR YES NO Convert to DIAMORPHINE OR Oxycodone and give 4 hourly or via a syringe driver for further advice & support liaise with Palliative Care Team / Pharmacy 1. DIAMORPHINE 2.5 mg-5mg s/c prn OR Oxycodone 2mg-5mg s/c prn 2. After 24 hrs review medication, if three or more doses required prn then consider a syringe driver over 24 hrs SUPPORTIVE INFORMATION: If symptoms persist contact Community Specialist Palliative Care Team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care:01284 766133 Anticipatory prescribing in this manner will ensure that in the last hours/days of life there is no delay responding to a symptom if it occurs. These guidelines are produced according to local policy and procedure. Version 3 Apr 11 ASV Page 21 of 22

Name: Symptom Control Guidelines for Nausea and vomiting YES NO 1. CYCLIZINE 50mg s/c bolus injection CYCLIZINE 50mg s/c 8hrly prn 2. Review dosage after 24 hours. If two or more pm doses given, then consider use of a syringe driver. 3. CYCLIZINE 100 150mg s/c via syringe driver over 24hours SUPPORTIVE INFORMATION: NB: Always use water for injection when making up Cyclizine to correct volume. Cyclizine is not recommended in patients with heart failure. Alternative anti-emetics according to local policy & procedure may be prescribed e.g.: Haloperidol s/c 2.5 5mg prn (5-10mg via a s/c syringe driver over 24 hrs) Levomepromazine s/c 6.25mg prn (6.25 12.5 mg via a s/c syringe driver over 24 hrs) SUPPORTIVE INFORMATION: If symptoms persist contact Community Specialist Palliative Care Team or your local Hospice: St Elizabeth Hospice: OneCall 0800 56 70 111 or St Nicholas Hospice Care: 01284 766133 Anticipatory prescribing in this manner will ensure that in the last hours/days of life there is no delay responding to a symptom if it occurs. These guidelines are produced according to local policy and procedure. Version 3 Apr 11 ASV Page 22 of 22