Care Plan for End of Life

Insert organisational logo here Care Plan for End of Life Name NHS No Date of Birth Ward/Place of Care GP/Consultant Contact details District Nurse/ Clinical Nurse Specialist Contact Details Date of commencement: Time: Doctors name Signature Nurses name Signature Where to get further advice and support: In Hours Advice Out of Hours Advice Macmillan Specialist Palliative Care Team (Mon-Fri 9-5) Tel insert relevant number for organisation Macmillan Lung Cancer Team (Mon-Fri 9-5) Tel insert relevant number for organisation End of Life Care Team 01625 666996 + Partnership number East Cheshire Hospice Helpline (24 hour advice available) Tel 01625 666999 St Luke s Hospice Helpline (24 hour advice available) Tel Others may be added specific to care setting Also refer to: NHS England- Principles of Care & Support for the Dying Patient The Cheshire EPAIGE : www.cheshire-epaige.nhs.uk GMC Guidance for Care Towards the End of Life Draft 1.1 Review April 2014

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ALL STAFF Before commencing this care plan please refer to the CRITERIA below: Team agree deterioration in the person s condition suggests they have the potential to die in hours/days or they are imminently dying. 1. Exclude reversible cause s 2. Is specialist opinion needed from consultant with experience in person s condition &/or palliative care team? 3. Is there an Advance care plan or Advance Decision to Refuse Treatment? MULTIDISCIPLINARY TEAM ASSESSMENT AGREES Person is potentially imminently dying and no likely reversible causes identified All personnel completing the care plan please sign below: Name (print) Full signature Initials Professional title Date 3

DOCTORS & NURSES MEDICAL & NURSING TEAM REASSESSMENT & REVIEW Improved conscious level, functional ability, oral intake, mobility, ability to perform self- care and/o r Concern expressed regarding plan of care from the individual, relative/carer, or a team member and/o r It has been no more than 3 days since the last assessment discussion with the team caring for the Reassessment Discussion Dates: Date: Time: Name (print) Signature..Role Name (print). Signature..Role Date: Time: Name (print). Signature..Role Name (print). Signature..Role Date: Time: Name (print). Signature..Role Name (print). Signature..Role Date: Time: Name (print).. Signature..Role Name (print). Signature..Role. If this care plan is discontinued please record below: (this could be completed by a doctor or senior nurse following reassessment) Date: Time: Name (print)..signature..role Name (print). Signature..Role. Reason why this care plan has been discontinued: (please give details) Has the decision to discontinue this care plan been discussed with the patient? Yes No Has the decision to discontinue this care plan been discussed with the family/significant others? Yes No Name (print) Signature Role.. Date Names of family/significant others involved:..... Name (print) Signature. Role Date 4

DOCTORS & NURSES Section 1- Assessment & Communication Where the Doctor (ST3 or above) has identified that a patient under their care is dying or has the potential to die, they must discuss and agree a care plan with the patient (where possible) and with the patient s family/carer. Wherever possible this should be done in-hours and by the team that know the person best. The agreed plan of care should clarify the following: Recognition of dying or potential for dying and the rationale for this The person s understanding and wishes for treatment and care Proposed plan of care including discussion about; o Ceiling of care/cpr status o Risks and benefits of nutrition and hydration o Discontinuation of routine observations Names and roles of those involved in making the decision that this person could be in the last o Symptom control and medications prescribed for pain, nausea and vomiting, days/hours: dyspnoea, agitation and chest secretions including the need to commence a syringe pump if required Consider the needs of people with communication difficulties e.g. refer to patient passport Respond to the individual s, and/or their family/carer questions/concerns For those who lack capacity and have no-one else to support them (other than paid staff), please consider consulting an Independent Mental Capacity Advocate (IMCA). Date/Time Notes: Signature/Role 5

Date/Time Notes: Signature/Role 6

DOCTORS ONLY Section 2- Management Plan To be completed by a Doctor The decision to allow a natural death/do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) THIS has been made. Please record communication below, including the names of family members involved in the decision: (NB: a DNACPR form is still required) those who lack capacity and have no-one else to support them (other than paid staff),.date/time please consult with the IMCA service. of discussion.. This person is expected to die from natural causes and therefore would be a suitable patient for Nurse Verification of expected death, if a suitably qualified nurse trained in Nurse Verification of Expected Death is available Yes No Doctors Name (Print).Signature Date. Does this person have an Implantable Cardioverter Defibrillator (ICD) in situ? If yes, refer to local policy concerning deactivation. Alternatively, contact the patient s cardiology team Yes No Insert details of medical and nursing interventions to be discontinued: e.g. bloods, observations Date/Time Notes: Signature Insert details of medical and nursing interventions to be continued: e.g oxygen Date/Time Notes: Signature 7

DOCTORS ONLY PLEASE NOTE: Food and drink should be continued for as long as the dying person can tolerate this Are there any specific instructions concerning the maintenance of adequate hydration and nutrition for the person? e.g. continuation or discontinuation of artificial fluids. If there are, please detail below: Date/Time Notes: Signature Section 2 Continuation notes Date/Time Notes: Signature/Role 8

MULTIDISCIPLINARY TEAM Section 3- Preferences and Choices Where the person is able, they should be given the opportunity to discuss what is important to them. Examples of things the dying person may choose to discuss include: Where they would like to die (preferred place of death) Religious and/or spiritual requests capacity Consider and for the have person no-one who else lacks to capacity support or them is unconscious, (other than whether paid staff), they please have previously consult with the expressed IMCA service. a preference pertaining to their end of life care. This information may be contained within: An Advance Statement of Wishes/ Care Plan An Advanced Decision to Refuse Treatment (ADRT) Through a legally appointed Lasting Power of Attorney for Health & Welfare Patient Passport/ Person Centred Plan For all dying persons who are assessed to be lacking capacity and have no-one else to support them (other than paid staff), please consider consulting with the IMCA service What is the most important thing to this person at this time? (Continue overleaf if required) Date/Time Notes: Signature/Role Details of any Advance Statement of Wishes or expressed preferences e.g. Preferred Priorities for Care Date/Time Notes: Signature/Role Details of any ADRT or Lasting Power of Attorney for Health & Welfare: Date/Time Notes: Signature/Role 9

MULTIDISCIPLINARY TEAM Please Indicate Preferred Place of Death: Not established Usual Place of Residence Hospital Hospice Other (specify) Has the dying person and/or their family indicated any cultural/religious traditions that should be followed now or after death? Date/Time Notes Religious tradition (if applicable): Detail any expressed preferences concerning the support of the Chaplain or other religious or spiritual advisor: Where applicable, contact details of religious or spiritual advisor: Where applicable, identified cultural, spiritual, or religious needs immediate or after death: Signature/role Section 3- Continuation notes Date/Time Notes: Signature/Role 10

MULTIDISCIPLINARY TEAM Section 4- Family/Significant Others IDENTIFY THE SUPPORT NEEDS OF FAMILY/SIGNIFICANT OTHERS Ensure contact numbers updated for key family members Explain facilities available e.g. parking permits, folding beds for relatives Consider side room/ privacy of the environment Early referral to bereavement services if appropriate Address any concerns or information needs expressed by the family/significant others whilst observing patient confidentiality and consent What to expect during the last days and hours leaflet given to the family/significant others? Yes No offered but declined Are there any specific communication needs to consider for family members/significant others? E.g. interpreter required, deafness, anxiety. If yes please detail below Date/Time Notes: Signature/Role Next of Kin Details Name Relationship Contact details (address & tel) Conditions of contact Contact anytime do not contact during the night ONLY Contact 1 st contact detailed below Other instructions: 1 st Contact (if different from next of kin) 2 nd contact Name: Name: Address: Address: Tel: Contact: Anytime Not during the Night Tel: Contact: Anytime Not during the Night 11

MULTIDISCIPLINARY TEAM With whom have conversations taken place? Date/Time List all the names of family members/ significant others involved in conversations Signature/role Please use this space to record details of specific conversations held with family members /significant others. Date/Time Notes: Signature/Role 12

DOCTORS & NURSES Section 5- Symptom Control REVIEW CURRENT MEDICATION: Discuss and negotiate the management of symptoms Discontinuation of non-essential medications Anticipatory prescribing for the common symptoms that may occur at the end of life Consider the most appropriate route for medication to be given Optimise the control of symptoms, seeking Specialist Palliative Care advice where needed CONSIDER THE HOLISTIC MANAGEMENT OF SYMPTOMS i.e. psychological, spiritual, social, physical Consult with, and involve the wider multi-disciplinary team in the management of symptoms Seek Specialist Palliative Care Advice where appropriate Refer to local guidelines available via EPAIGE or on the intranet PLEASE ENSURE THAT ANTICIPATORY MEDICATIONS ARE PRESCRIBED FOR ALL 5 OF THE MOST COMMONLY EXPERIENCED SYMPTOMS: PAIN AGITATION RESPIRATORY TRACT SECRETIONS NAUSEA & VOMITING BREATHLESSNESS Please tick Not all patients will require a Syringe Driver However, staff should ensure that a syringe driver is readily available should this be required. Conversations with both the person and their family/significant others should also include information about when a syringe driver may or may not be indicated Details of conversations held with the person and their relative/ significant others concerning the management of symptoms at the end of life: Date/Time Notes: Signature/Role 13

Section 5 Continuation notes Date/Time Notes: Signature/Role 14

MULTIDISCIPLINARY TEAM Pain Section 6- Daily Assessment Day 1 Principles of Care & Support Observe for verbal and non-verbal signs of pain Person should appear comfortable on movement Reposition only for comfort measures DATE: DATE: DATE: DATE: DATE: TIME: TIME: TIME: TIME: TIME: Agitation Does not display signs of distress due to agitation Exclude reversible causes pain, urine retention, constipation, opioid toxicity, positional change If smoker consider need for nicotine patch Moist noisy breathing/respiratory tract secretions Consider need for positional change Explanation of symptoms to attending relatives If appropriate give medication for comfort (NOTE: medication will not clear existing secretions. If an individual is uncomfortable with a dry mouth it can dry this further) Nausea and/or vomiting Administer anti-emetic as indicated Consider other reversible causes for nausea/vomiting- smells, medication/chemical, Breathlessness Observe for verbal and non-verbal signs Consider comfort measures- positional change, use of fan, 02 Urinary and bowel function Consider urinary catheter for retention and/or comfort Provide pads if weakness causes incontinence Monitor & support skin integrity If distresses by constipation consider bowel intervention Safe administration of medication (mark N/A if no medication) If syringe driver is in place monitor during each review Medications administered in line with prescription and policy Clear written communication available to others that may need to administer medication Hydration Continue to support oral fluids if appropriate/tolerated Monitor for signs of distress or aspiration Continually review the appropriateness of any artificial fluids Mouth Care Assess and support mouth care during each review including support & advice to the family 15

MULTIDISCIPLINARY TEAM Skin integrity Where appropriate assess during each review Consider the use of aids Advise and support positioning based on comfort/safety needs only Personal hygiene Advice and support hygiene needs based upon comfort Environment of care Consider issues of privacy and dignity- side room, noise levels Other individual care need (give details below) Full signature & role of person completing assessment Compassionate and person centred communication with the dying individual (where possible) Consider issues of privacy and dignity- side room, noise levels Address any concerns, preferences, information needs Date/time notes Signature/Role Compassionate and person centred communication with the dying individual s family/significant others Address any concerns, preferences, information needs Ensure frequent updating concerning the condition of the dying person Date/time notes Signature/Role 16

Verification of death Section 7: After Death Care Date of death... Time of death... Persons present at time of death & relationship to the deceased...... Notes/Comments... If not present, has the patient s relative/carer been informed: Name of relative informed: Yes No No relative/carer Name of professional verifying death... Signature... Role... Time of verifying... Is discussion with, or review by, the coroner required Yes No If a Doctor has agreed to Nurse Verification of expected death (see page 7) and a trained nurse is verifying death, this section needs to be completed by the nurse (as per the NVoED policy). Vital signs checked: No response to painful stimuli (sternal rub) Yes No Carotid pulse absent for one minute Yes No Heart sounds absent for one minute Yes No Respirations absent for one minute Yes No Pupils fixed Yes No Care after death notes: record relevant issues/communications (including feedback from relatives) Date Name (print), signature & role 23

Organisation Information Relative /Carer/ Information Patient Care Dignity Communication & support after death Initial care after death is undertaken in accordance with policy Signature/date Consider: Patient is treated with respect & dignity if any care is provided after death Universal precautions & local policy & procedures including infection risk adhered to If CSCI/Syringe Driver in use, following verification of death, it is removed & drug contents disposed of in accordance with policy. Spiritual, religious, cultural rituals needs met The relative/carer understands what is required to do next & given relevant written information Consider relative/carer information needs relating to the next steps, where appropriate: Contacting a funeral director, how a death certificate will be issued, registering the death Acting on patient s wishes regarding tissue/organ donation Discuss as appropriate, the need for a post mortem, or removal of cardiac devices or when discussion with the coroner required Bereavement support/services, including child bereavement services Disposal of drugs & equipment Provision of supportive leaflet/booklets: Local bereavement booklet/services contacts/other bereavement information DWP1027 (England & Wales) What to do after a death booklet or equivalent The Primary Care Team/ GP Practice is notified of the patient s death Other services involved notified of patient s death Out of hour services (i.e. GPs, Nursing, other services) Yes No N/A Hospice Yes No N/A Macmillan Yes No N/A Other Specialist Nurse Yes No N/A Hospital Yes No N/A Out Patient Services e.g. Chemotherapy, endoscopy Yes No N/A Community Matron Yes No N/A Allied Health Professionals (i.e. Physio, OT, Dietician) Yes No N/A Social Services Yes No N/A Continuing Health Yes No N/A Other care agencies (i.e. Crossroads, Marie Curie) Yes No N/A Continence Yes No N/A Hospital Care at Home Yes No N/A Community equipment Yes No N/A Other, please state... Yes No N/A When this section is complete. Healthcare professional name (print)... Signature Role... Date... 24

Appendix 1: Symptom Control Guides GUIDELINES FOR CONTINUED USE OF TRANSDERMAL FENTANYL IN DYING PATIENTS When a person is no longer able to take oral breakthrough medication the fentanyl patch should continue to be changed every 72 hours as was prescribed unless there are toxic opioid side effects. A subcutaneous opioid should be given if the person experiences breakthrough pain. The breakthrough (4 hourly equivalent) dose of diamorphine, for example, is calculated by the following formula Fentanyl patch strength (mcg/hour) = 4 hourly dose of diamorphine 5 subcutaneously (mgs) *If subcutaneous morphine is used, the accepted conversion from subcutaneous morphine to subcutaneous diamorphine is 3:2 Table: Breakthrough doses of subcutaneous Diamorphine and Morphine for patients on Transdermal Fentanyl. Transdermal Fentanyl patch microgrammes per hour/72hours 4 hourly dose of Diamorphine subcutaneously (mgs) 4 hourly dose of Morphine subcutaneously (mgs) (*when diamorphine not available) 25 5 7.5 50 10 15 75 15 25 100 20 30 150 30 45 200 40 60 300 60 90 consider as 2 separate injections as large volume will likely cause discomfort for patient If the person requires 2 or 3 doses of an opioid for breakthrough pain over a 24-hour period, consider commencing a continuous subcutaneous infusion of diamorphine/morphine in a syringe driver over 24 hours in addition to continuation of their fentanyl patch as prescribed. Example: Patient on 200mcg/hr fentanyl patch. The breakthrough (4 hourly equivalent) dose of subcutaneous diamorphine = 40mgs. Times that by 6 (lots of 4 hours) = the 24 hour equivalent. This is 240mgs. If x 3 breakthrough doses of diamorphine at 40mgs were required in the previous 24 hours. This equates to 120mgs total extra in 24 hours. Dose of diamorphine via syringe driver over 24 hours would be the additional 120 mgs. The 200mcg/hr fentanyl patch continues to be changed every 72 hours. NB: The breakthrough requirements need to be amended o Diamorphine equivalent of fentanyl patch = 240mgs o Plus diamorphine in syringe driver/24hours = 120mgs o Total diamorphine equivalent = 360mgs o 4 hourly equivalent diamorphine = 60mgs Needs to be reassessed at least every 24 hours. 25

For some people experiencing breakthrough pain, circumstances may prevent administration and titration of analgesic increase over that 24-hour period. It is reasonable to increase the total 24- hour analgesia by 1/3 Example: Person on 200mcg/hr fentanyl patch. The breakthrough (4 hourly equivalent) dose of subcutaneous diamorphine = 40mgs. Times that by 6 (lots of 4 hours) = the 24 hour equivalent. This is 240mgs. 1/3 of this = 80mgs. Dose of diamorphine via the syringe driver over 24 hours would be the additional 80mgs. The 200mcg/hr fentanyl patch continues to be changed every 72 hours. The breakthrough pain requirements need to be amended. i.e: o Diamorphine equivalent of fentanyl patch = 240mgs o Plus diamorphine in syringe driver/24hours = 80mgs o Total diamorphine equivalent = 320mgs o 4 hourly equivalent diamorphine = 53mgs o NB: round this up to the nearest 5 mgs for breakthrough (4 hrly equivalent) dose = 55mgs Needs to be reassessed at least every 24 hours. If a fentanyl patch needs to be discontinued, note that fentanyl plasma levels fall gradually due to continued absorption from the skin. Plasma fentanyl concentrations reduce by approximately 50% in 17 hours (range 12-24 hours). If possible, it is advisable to use subcutaneous opioid stat injections for the initial 24 hours while the fentanyl plasma level is falling and start the syringe driver after 24 hours. Note: For further support or advice contact your Specialist Palliative Care Teams - see Reviewed 2011 by: Dr C G Smith, Medical Director, St Lukes (Cheshire) Hospice, Winsford Dr Trevor Rimmer, Macmillan Consultant in Palliative Medicine, Macclesfield DGH, 26

Insert organisational logo here BREATHLESSNESSES PRESENT ABSENT Is patient already on medium/strong oral opioid? Is patient already on medium/ strong oral opioid? YES Convert to CSCI*. Calculate equivalent dose of Diamorphine (see conversion chart in blue drug booklet) and increase by 30-50%. Also prescribe as required doses of Diamorphine (1/6th of total 24h dose), SC, 2 hrly. If distress of symptom persists, consider adding Midazolam by CSCI* 10-20mg/24h. Also prescribe as required doses of Midazolam NO Prescribe as required Diamorphine 2.5-5mg SC 2 hrly. And/Or as required Midazolam 2.5-5mg SC or buccal, 3 hrly. Review daily. If 2 or more as required doses given, consider CSCI* starting with either Diamorphine 10mg/24h Midazolam10mg/24h NO Prescribe as required Diamorphine 2.5-5mg SC,2 hrly. And/Or as required Midazolam 2.5-5mg SC or buccal, 3 hrly. If symptoms persist or further advice required contact the Specialist Palliative care team or local Hospice see front of Care Plan for contact details - if Diamorphine not available, use equivalent dose of Morphine Sulphate for injection. *CSCI continuous subcutaneous infusion via syringe driver Draft 1.1 Review April 2014

Insert organisational logo here MOIST NOISY BREATHING/RESPIRATORY TRACT SECRETIONS PRESENT ABSENT Prescribe stat dose of Glycopyronnium, 200 micrograms SC, repeated after 30mins if necessary Prescribe as required doses of Glycopyronnium 200 micrograms SC, 3 hrly (max 1200 micrograms/24h ) Or Prescribe stat dose of Hyoscine Butylbromide (buscopan) 20mgs, SC. Prescribe as required doses of Hyoscine Butylbromide 20mgs SC, 3 hrly (max 120mgs/24h ). Prescribe as required doses of Glycopyronnium 200 micrograms SC, 3 hrly (max 1200 micrograms/24h ) Or Prescribe as required doses of Hyoscine Butylbromide 20mgs SC, 3 hrly (max 120mgs/24h ). If 2 or more doses of as required are needed consider use of CSCI* Glycopyrronium 1200micrograms/24h by CSCI* Or Hyoscine Butylbromide 60-120mgs/24h by CSCI*Note: Drugs will not necessarily clear existing secretions. Treatment effective in 50-60% - more likely if noisy secretions due to unswallowed saliva, less likely if respiratory tract secretions. Many carers satisfied by explanation alone. A conscious patient treated with these drugs will be aware of an uncomfortably dry mouth If symptoms persist or further advice required contact the Specialist Palliative care team or local Hospice see front of Care Plan for contact details. Draft 1.1 Review April 2014

NAUSEA & VOMITING PRESENT ABSENT Give Cyclizine 50mgs SC as stat dose and start Cyclizine 100-150mgs/24h by CSCI* Or Give Haloperidol 1.5-5mgs as stat dose and start Haloperidol 2.5-10mgs/24h by CSCI* Prescribe Cyclizine 50mgs SC, 4-6 hrly (max200mgs/24h ) as required Or Haloperidol 1.5-5mgs SC, 4-6 hrly (max 15mgs/24h ) as required. Prescribe as required doses: Cyclizine 50mgs SC, 4-6 hrly (max 200mgs/24h ) Haloperidol 1.5-5mgs SC, 4-6 hrly (max 15mgs/24h ) If symptoms persist, see box below Review daily. If 2 or more as required doses given, consider converting to CSCI* If symptoms persist Cyclizine and Haloperidol can be used together by CSCI*. Or Convert to Levomepromazine, 6.25-25mgs/24h by CSCI* Prescribe as required Levomepromazine 6.25-12.5mgs SC, 3 hrly (max 75mgs/24h ) If symptoms persist, further advice required or patient has bowel obstruction, contact the Specialist Palliative care team or local Hospice see front of Care Plan for contact details. *CSCI continuous subcutaneous infusion via syringe driver. - maximums given as a guide. Seek Specialist palliative advice for further information if symptoms persist 29

PAIN PATIENT IS IN PAIN PATIENT S PAIN IS CONTROLLED Is patient already on medium/strong Is patient already on medium/ strong oral opioid? YES NO YES NO Convert to CSCI*. Calculate equivalent dose of Diamorphine (see conversion chart in blue drug booklet) and increase by 30-50%. Also give stat dose (1/6 th of total 24h dose). Also prescribe as required doses of Diamorphine (1/6th of total 24h dose), 2 hrly SC. Prescribe Diamorphine 2.5-5mg SC for as required 2 hrly and give 1st dose stat. Start CSCI* with Diamorphine 10mg/24h. Review daily. If required, increase 24h and as required dosages by 30-50% (more if as required doses given indicate). Convert to CSCI*. Calculate equivalent dose of Diamorphine (see conversion chart in blue drug booklet) Also prescribe as required doses of Diamorphine (1/6th ot total 24h dose), 2 hrly SC. Prescribe Diamorphine 2.5-5mg SC for as required 2 hrly. Review daily. If 2 or more as required doses given, consider CSCI* with Diamorphine 10mg/24h. NB:If on fentanyl patches, see NB:If on fentanyl patches, separate guidance sheet. see separate guidance sheet. If symptoms persist or further advice required contact the Specialist Palliative 30 care team or local Hospice see front of Care Plan for contact details. - if Diamorphine not available, use equivalent dose of Morphine Sulphate for injection (see blue drug booklet).

RESTLESSNESS & AGITATION PRESENT ABSENT Prescribe Midazolam 2.5-5mg SC stat dose, repeated after 30 mins if necessary And prescribe Midazolam 10-20mg/24h by CSCI* Prescribe as required doses of Midazolam 2.5-10mg SC, 3 hrly (max 60mg/24h ) Review daily. If 2 or more as required doses given, consider converting to CSCI* Prescribe as required doses of Midazolam If symptoms persist Prescribe Levomepromazine 12.5-25mg SC to give as a stat dose and for as required doses, 3 hrly.(max 150mg/24h ). If effective, consider adding Levomepromazine 25-50mg\24h to the Midazolam in the CSCI*. If symptoms persist or further advice required contact the Specialist Palliative care team or local Hospice see front of ICP or blue drug form for contact details. *CSCI continuous subcutaneous infusion via syringe driver. - maximums given as a guide. Seek Specialist palliative advice for further information if symptoms persist 31

Appendix 2-CPEOL Guideline (to be developed separately) To locally develop and to add more context and guidance for the specific sections of the care plan particularly for those less familiar with eolc. This can also include signposting to other guidance and resources that the National Leadership Alliance produces. Will also give us an opportunity to make anything that comes out from the leadership alliance explicit for example requirement for training. 32