Care Pathway For the last days of life

NORTH EAST Care Pathway For the last days of life Patient Details Unit Number / NHS number August 2011 Review date: August 2013 1

Patient Details Unit Number/ NHS number CARE PATHWAY FOR THE LAST DAYS OF LIFE (formally EoLCP) The Care Pathway is intended as a guide to treatment and an aid to documenting patient care. This pathway is intended for use throughout primary and secondary care and is a transferable document. During the course of care giving, practitioners are free to exercise their own professional judgment; however, any alteration to the practice identified within this pathway must be noted on the variance analysis sheet. Consultant/ GP: Named Nurse: Care setting 1. Refer to Algorithm on next page INSTRUCTIONS FOR USE 2. Initial the goals completed. All goals are in a bold typeface. Interventions, which act as prompts to support the goals, are in normal type. 3. If a goal is not achieved (i.e. variance) then chart on the variance section. 4. At the end of the patient episode review the pathway. Any goals which are not signed off should be charted as variance. 5. The symptom management flowcharts are available in booklet format or on the North of England Cancer Network website.(www.cancernorth.nhs.uk) 6. If the patient has a surgical dressing or catheter please use multi-professional communication sheet to record. If appropriate record details on initial assessment sheet on p11 and continue to assess. 7. 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 versa. Seek a second opinion or Specialist Palliative Care support if needed. 8. Changes in care at this complex, uncertain time are made in the best interest of the patient and relative/ carer and will need to be reviewed regularly by the key health professionals. 9. The pathway does not preclude the use of clinically assisted nutrition, hydration or antibiotics. All clinical decisions must be made in the patient s best interests. 10. If you have any problems regarding the pathway, seek further advice from the Specialist Palliative Care Team (SPCT) JCUH ext 54787/54718; M,R & C Community 01287 639100 (out of hours Teesside Hospice 01642 819819); FHN/HR 01609 751313 (out of hours St Teresa s Hospice 01325 254321 11. Discontinue the patients usual nursing notes when commencing this Pathway. Confirm Do Not Attempt Cardiopulmonary Resuscitation form has been completed? Yes PREFERRED PLACE OF CARE Is the current location the patient s preferred place of care? Yes No If not, where would they prefer to be?.. Does the patient have an Advance Care Plan (ACP)? Yes No Does this patient have an Advance Decision to Refuse Treatment? Yes No Does this patient have capacity to make their own decisions on treatment? Yes No Does this patient need support from an IMCA (Independent Mental Capacity Advisor) Yes No Does the patient carry a donor card or on organ donor register for: Organs Yes No Eyes Yes No Whole body Yes No If yes contact organ donation team (see final page) August 2011 Review date: August 2013 2

Reassessment Management Communication Clinical Decision Assessment Algorithm for decision making in diagnosing dying, using the care pathway and supporting care in the last days or hours of life Deterioration in the patient s condition consider if the patient could be dying Multiprofessional Team Assessment Is there a potentially reversible cause for the patient s condition e.g. opioid toxicity, renal failure, hypercalcaemia, infection? Could the patient be in the last hours or days of life? Is specialist referral needed e.g. specialist palliative care team or second opinion? Patient is NOT diagnosed as dying (in the last hours or days of life) Patient is diagnosed as dying:- deteriorating conscious level; functional ability; oral intake (sips) Review the current plan of care Discussion with the patient and relative or carer to explain the new or revised plan of care Do not commence care pathway Patient, relative or carer communication is focused on recognition & understanding that the patient is dying Discussion with the patient, relative or carer (IMCA as required) to explain the current plan of care & use of the pathway The care pathway for the last days of life is commenced including ongoing regular assessments A full multiprofessional re-assessment & review of the current plan of care should be triggered when 1 or more of the following apply (as a minimum every three days) Improved:- conscious level; functional ability; oral intake 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 multiprofessional assessment August 2011 Review date: August 2013 3

Guidance on managing diabetes with patients during the last days of life Discuss changing the approach to diabetes management with patient and/or family if not already explored. If the patient remains on insulin ensure the Diabetes Specialist Nurses are involved and agree monitoring strategy. Type 2 diabetes Diet controlled Type 2 diabetes on tablets and / or insulin Type 1 diabetes Stop monitoring blood sugars Stop oral hypoglycaemic Consider stopping insulin depending on dose* EITHER Continue once daily long acting insulin analogue Glargine (Lantus ) with reduction in dose # If insulin stopped: Urinalysis for glucose daily If over 2+ positive check capillary blood glucose If glucose over 20mmols/l give 6 units Aspart insulin (Novorapid ) Recheck capillary blood glucose after 2 hours If insulin to continue: Prescribe once daily long acting insulin analogue Glargine (Lantus ) giving dose in morning with 25% reduction in total daily insulin dose Check blood sugar once a day at teatime: If below 8 mmols/l reduce insulin If above 20 mmols/l increase insulin to reduce risk of symptoms or ketosis Alter dose by 2 units if daily dose below 50 units Alter dose by 4 units if daily dose 50 units or more If require Aspart more than twice consider daily insulin Glargine (Lantus ) Keep invasive tests to a minimum. It is necessary to perform some tests to ensure unpleasant symptoms do not occur due to low or high blood sugars. It is very difficult to identify symptoms due to hypo or hyperglycaemia in a dying patient. If observed symptoms could be due to blood glucose levels a urine test should be performed, followed by a blood glucose check if necessary. * Patients on over 48 units of insulin daily are likely to develop symptoms without insulin # Reduce insulin Glargine dose by 25% as well as discontinuing short acting insulin Contact the diabetic nurses or specialist palliative care team if advice required Diabetes in Palliative Care Guidelines, November 2010. MacLeod, J. et al. North Tees and Hartlepool NHS Foundation Trust, Hartlepool Primary Care Trust, Stockton-on-Tees Teaching Primary Care Trust. Reproduced with permission from Dr Jean MacLeod. August 2011 Review date: August 2013 4

Patient Details Unit Number/ NHS number HEALTH CARE PROFESSIONAL DOCUMENTING THE DECISION TO USE THE PATHWAY Date pathway commenced.. Time commenced.. Name (print)... Signature.NMC/GMC This will vary according to circumstance and local governance arrangements. In general this should be the Senior Health Care Professional (named Nurse or Doctor) on duty. The decision must be endorsed by the Senior Healthcare Professional responsible for the patient s care at the earliest opportunity. The responsible GP/consultant/consultant on call should be advised as soon as practicable when this decision is made. Name (print)... Signature. NMC/GMC. ALL PERSONNEL COMPLETING THE PATHWAY PLEASE SIGN BELOW NAME PRINT SIGNATURE INITIALS TITLE/ GMC/ NMC number DATE Record all full multiprofessional reassessments here (including full formal multiprofessional reassessments every 3 days) Reassessment date..time.. Reassessment date..time.. Reassessment date..time.. If the pathway is discontinued please record here Date discontinued Time Name..NMC/GMC.. Reason(s) why the pathway was discontinued It is essential for good communication that the decision to discontinue the pathway is discussed. Confirm that the decision to discontinue the pathway was shared with the patient Yes Confirm that the decision to discontinue the pathway was shared with the relatives/carer Yes August 2011 Review date: August 2013 5

Patient Details INITIAL PATIENT ASSESSMENT Date.. Time DIAGNOSIS: PHYSICAL CONDITION Pain Yes No Catheterised Yes No Nausea Yes No Constipated Yes No Vomiting Yes No Diarrhoea Yes No Agitation/Restlessness Yes No Faecal incontinence Yes No Respiratory Tract Secretions Yes No Urinary incontinence Yes No Dyspnoea/Breathlessness Yes No Pressure Sore Yes No Unable to swallow Yes No Confused Yes No Other please state COMFORT MEASURES (A is Achieved. If you tick V please record this as a Variance) 1. Current medication assessed and non-essentials discontinued A V Appropriate oral drugs converted to subcutaneous route and syringe pump commenced if appropriate within 4 hours 2. Anticipatory prescribing of subcutaneous medications written up A as per symptom management flowcharts. Medicines for symptom control will only be given when needed, at the right time & just enough & no more than is needed to help the symptom. Prescribe for all symptoms even if they are not currently present. Pain Nausea/Vomiting Restlessness/Agitation Respiratory Tract Secretions Dyspnoea/Breathlessness A A A A A 3. Discontinuation of potentially futile interventions If you are at all uncertain please seek advice Blood Tests Antibiotics IV fluids/ Medications Artificial nutrition Blood product support Deactivate cardiac defibrillator (ICD) Monitoring vital signs Blood glucose monitoring A V A V A V N/A A V N/A A V N/A A V N/A A V N/A A V N/A 4. Assess skin integrity using appropriate assessment tool A V INITIAL PATIENT ASSESSMENT (continued) 5. Does the patient have an implanted defibrillator? Contact 01642-854607 (9:00am-5:00pm) to deactivate A V Signature Date NMC/GMC. August 2011 Review date: August 2013 6

Patient Details COMMUNICATION WITH FAMILY/ OTHER 6. Ability to communicate in English assessed as adequate with the Patient A V Family/other A V Have you provided a translator if English is not the first language? Other barriers to communication: hearing, dementia, learning disabilities please specify.... 7. Insight into condition identified The patient is aware that they are dying The relative/carer is able to take full and active part in communication The relative/carer is aware that the patient is dying 8. Identified how family/other are to be informed of patient s impending death? At any time Specified times A V A V A V A V A N/A 9. Identified how family/other are to be informed of patient s death? At any time Specified times.. A N/A 1st Contact Name: Relationship to patient: Tel. No.. 2nd Contact Name: Relationship to patient:..tel. No.. Next of kin if different from above Tel. No.. 10. Family/other given information on Health Care Setting Payphone, toilet facilities, and car parking A N/A 11. COMMUNICATION WITH HEALTH CARE PROFESSIONALS Consider which of the following to inform of the patient s condition GP GP Out of Hours Provider/Deputising Service Palliative Support at Home Macmillan Specialist Nurse Out of Hours Palliative Care Team District Nursing Service Community Matron Community Specialist Palliative Care Team Rapid Response Marie Curie Social Services Care Home Herriot Hospice Homecare Signature Date NMC/GMC. August 2011 Review date: August 2013 7

Patient Details VARIANCE ANALYSIS SHEET FOR SECTION 1-11 OF THE PATHWAY What variance occurred & why? Action taken Outcome (What was the issue?) (What did you do?) (Did this solve the issue?) Date/Time: Date/Time: Date/Time: Date/Time: Date/Time: Date/Time: Date/Time: Date/Time: August 2011 Review date: August 2013 8

Patient Details SPIRITUALITY 12. The patient is given the opportunity to discuss what is important to them at this time e.g. their wishes, feelings, faith, beliefs and values. A V Patient may be anxious for self or others. Consider specific religious and cultural needs Consider music, art, poetry, photographs, something that is important to the belief system or the well-being of the patient Did the patient take the opportunity to discuss the above A V Family/other A V 13. Formal religion identified, please specify. A V e.g. Differing Faiths leaflet available on STHFT Intranet or use leaflet applicable to your area 14. Support from the chaplaincy team offered A V 15. Name of person preferred: Telephone Number: Needs now Needs at death Needs after death 16. The RELATIVE OR CARER is given the opportunity to discuss what is important to them at this time e.g. their wishes feeling, faith and beliefs, A V Comments.. Did the relative/carer take the opportunity to discuss the above A V VARIANCE ANALYSIS SHEET FOR SECTION 12-16 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 9

Patient Details SECTION ONE INITIAL ASSESSMENT additional information INITIAL ASSESSMENT MDT PROGRESS NOTES DATE/TIME Additional Information: Plan of care to monitor skin integrity (Braden score), nutrition, hydration - include any specific information regarding this patient, relative or carer that has not been captured in the initial assessment that you believe needs to be highlighted. PLEASE SIGN HERE ON COMPLETION OF INITIAL ASSESSMENT Doctors name Nurses Name Signature Signature GMC NMC Date Date August 2011 Review date: August 2013 10

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 4. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 6. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 7. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 11

Patient Details VARIANCE ANALYSIS SHEET FOR SECTION 1-8 OF THE PATHWAY What VARIANCE occurred & why? ACTION taken OUTCOME (What was the issue?) (What did you do?) (Did this solve the issue?) August 2011 Review date: August 2013 12

10:0 0 22:0 0 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial What VARIANCE occurred & why? (What was the issue?) VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 13

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 5. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 8. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 9. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 14

10:00 22:00 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 16

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 6. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 10. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 11. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 17

10:00 22:00 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 19

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours Date: A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 7. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 12. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 13. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 20

10:00 22:00 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) GMC/NMC: GMC/NMC: GMC/NMC: GMC/NMC: August 2011 Review date: August 2013 22

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours A = Achieved V= Variance Date: Time (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 8. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 14. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 15. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 23

10:00 22:00 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 25

02:00 06:00 10:00 14:00 18:00 22:00 Patient Details DAILY ASSESSMENT one page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) ASSESS PAIN / COMFORT MEASURES 1. Pain Patient is pain free Verbalised by patient if conscious Pain free on movement Appears peaceful Consider need for positional change 2. Agitation / Restlessness Patient is not agitated Patient does not display signs of delirium, terminal anguish, restlessness (thrashing, plucking, twitching) Exclude retention of urine/faecal impaction as cause 3. Respiratory Tract Secretions Patient is not in distress due to respiratory tract secretions 9. Nausea and Vomiting Patient not nauseated/vomiting Patient verbalises if conscious 5. Breathlessness/ Dyspnoea Breathlessness not distressing patient Patient verbalises if conscious Consider need for positional change 16. Mouth Care Mouth is clean and moist, free from discomfort See mouth care policy if applicable Family / other involved in care given 17. Elimination Patient is comfortable Urinary catheter or pads if general weakness causes Incontinence or retention Faecal impaction may cause agitation/pain 8. Pressure Area Care Patient is comfortable and in a safe environment Clinical assessment of: Skin integrity Need for positional change Need for special mattress Personal hygiene / bed bath / eye care needs Initial August 2011 Review date: August 2013 26

10:00 22:00 Patient Details 12 HOURLY ASSESSMENT One page per 24 hours A = Achieved V= Variance Date: Time: (Time of community based assessments need to be flexible please use blank spaces to record time) 9.PSYCHOLOGICAL INSIGHT Patient Patient becomes aware of the situation as appropriate Patient is informed of procedures Touch and verbal communication is continued Family / Other Family / other are prepared for the patient s imminent death Check understanding - family / children / other Recognition of patient dying Inform of measures taken to maintain patient s comfort 10.RELIGIOUS / SPIRITUAL / CULTURAL SUPPORT Appropriate spiritual support has been given 11.CARE OF THE FAMILY / OTHERS The needs of those attending the patient / family are accommodated Consider health needs and social support Ensure awareness of ward facilities if relevant Initial VARIANCE ANALYSIS SHEET FOR SECTION 9-11 OF THE PATHWAY What VARIANCE occurred & why? (What was the issue?) ACTION TAKEN ((What did you do?) OUTCOME (Did this solve the issue?) August 2011 Review date: August 2013 28

Patient Details CARE AFTER DEATH Ensure the patient is treated with Dignity and respect whilst last offices are undertaken GOAL: The patients death is communicated to the appropriate services across the organisations District Nursing Team contacted re patient s death A V N/A Out of Hours Palliative Care Team A V N/A GP A V GP Deputising service A V N/A Specialist Palliative Care Team A V N/A Day care Team A V N/A Social Worker A V N/A Consultants (Specify) A V N/A Post Mortem discussed if appropriate. A V N/A Identified as possible donor (If yes refer to potential donor guidelines at the end of this document)a V Discuss need for removal of pacemaker/cardiac device if appropriate A V Special needs identified Universal precautions & local policy & procedures including infection risk adhered to A Spiritual, religious, cultural rituals/needs met A Relatives/other informed of appropriate necessary tasks following death Relatives/other informed to ring the ward/hospice/gp to arrange collection of death certificate A V Bereavement information booklet given to family/other A Belongings/valuables listed and put in safe storage A V N/A To prepare, inform and support the patient s family/other during final stages and immediately after death (not appropriate if patient died at home) Necessary documentation is given to the appropriate person Death certificate signed A V Name of Funeral director: Preference re: Burial Cremation Need for cremation certificate explained A V N/A Confirm understanding of need and where to register the death A V Valuables/belongings are signed for by identified person (not appropriate for death at home) Property form completed (Property stored and collected according to policy) A V N/A Care Quality Commission Registration (Hospice and care home only) A V Thinking of You booklet (Hospice and care home only) A V N/A Memory Book (Hospice and care home only) A V N/A Please record any variance overleaf Date Care after death - record below any significant issues not reflected above HEALTH CARE PROFESSIONAL SIGNATURE: DATE/TIME: August 2011 Review date: August 2013 29

Patient Details VARIOUS ANALYSIS SHEET FOR SECTION CARE AFTER DEATH OF THE PATHWAY What VARIANCE occurred & why? ACTION taken OUTCOME (What was the issue?) (What did you do?) (Did this solve the issue) August 2011 Review date: August 2013 30

Patient Details Date/Time MULTI-PROFESSIONAL COMMUNICATION SHEET Signature (NMC/GMC) August 2011 Review date: August 2013 31

Organ and Tissue Donation Organ Donor Register To check the Organ Donor Register (which we should with all patients going on EOLCP, please ring 01179 757580. They will ask for the patients basic biographical details. If the patient or family raise the question of organ donation: Monday to Friday 08:30-16:30 please contact Specialist Nurses-Organ Donation (SN-OD) on JCUH pager 07699 643640, leaving your hospital extension number. If no answer or out of hours please contact the on call SN-OD as below. New title for transplant co-ordinators is Specialist Nurse-Organ Donation (SN-OD), available 24 hours a day on 07659 146 757. Please leave name, hospital, ward, and phone number including dialling code. If no answer within 10 minutes please page again. Tissue Donation For advice or referral of a patient please contact the National Referral Centre (Tissue Services) in Liverpool on 0800 432 0559 or 07659 180 773 24 hours a day. Please leave name, hospital, ward, and phone number including dialling code. If no answer within 10 minutes please page again. Guidelines for caring for potential Eye Donors 1. If relatives agree to donation, take a family member s name, home telephone number and an appropriate time to call. 2. Once the patient has died, please refer to the National Referral Centre (Tissue Service) on 0800 432 0559 or 07659 180 773-24 hours a day. (All demographic and hospital details will be required). If no answer within 10 minutes, please page again. 3. Lay the patient out ensuring the head is placed on 2 pillows and the eyes are closed. Do not place pads on eyes or instil drops/ointment. For further advice please contact the on-call eye retrieval team member via JCUH Hospital switchboard August 2011 Review date: August 2013 32