Trust Policy and Procedure Document Ref. No: PP(15)310 End of Life Care For use in: For use by: For use for: Document owner: Status: All clinical areas of the Trust All clinical Trust staff All adults with limited prognosis Palliative care team Approved Purpose of this document The aim of this policy is To set a high standard for the care of patients coming towards the end of their lives as recommended in the National End of Life Care Strategy (2008) and the NICE quality standard QS13, End of life care for Adults (2017). For patients in the hospital to be identified, assessed and treated appropriately by having their problems and issues addressed through an individualised care plan. To support carers or family of those who are at the end of life and ensure their needs are addressed and met To support staff confidence and skills through provision of education and partnership working To establish clear communication with GP s and other appropriate agencies/health care professionals on discharge Contents Page 1. Background 2 2. Definitions 2 3. End of Life Care 3 3.2 Recognise 3.3 Communication 3.4 Involve and Support 3.5 Plan and Do 3 4 4 4 4. EPARS 5 5. My Care Wishes (Yellow) Folders 5 6.Discharge Planning 5 7. Implantable Cardiac Defibrillators 6 8. Care of the Dying in Hospital 6 Resources 7 References 7 Review and Monitoring 7 Appendices 8 Source: End of Life Operational Group Status: Approved Page 1 of 13
1 Background The End of Life Care (EOLC) Strategy (Department of Health, 2008) was a blueprint for improving the care of all dying people over the next ten years, regardless of diagnosis. Over half a million people die in England each year and almost two thirds are aged over 75. Around 1000 individuals die each year at the hospital. The large majority of deaths follow a period of chronic illness, such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia. The End of Life Strategy emphasises improving the end of life care provision in acute hospitals, as well as calling for improved discharge arrangements and better co-ordination, with a range of community services, so that more people can die in the location of their choosing. This has been reinforced in the more recent Priorities for the care of the Dying Person, Ambitions for End of Life Care and the NICE Quality Standard on End of life care. This policy translates the national documents into the standard of care that patients at the end of life should receive in West Suffolk Hospital. It acts as the overarching policy for end of life care, supported by specific guidelines and resources available elsewhere. The West Suffolk Hospital End of Life Operational Group meets quarterly to oversee care delivered within the hospital. They report to the Patient Experience Committee, who are ultimately responsible to the Board. 2. Definitions End of life care This refers to the care delivered to those identified as being in their last 12 months of life. Last days of Life Care This refers to the care delivered to those identified as being in their last hours to days of life. My Care Wishes (Yellow) Folder This is a Suffolk wide patient held record which includes advance care planning documents, key contact information and, in some cases, a community Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) form. Advance Care Planning (ACP) Advance care planning is something individuals can undertake to document their wishes around future care needs, ceilings of treatment and places of care. This can be written down or just noted in conversation with health care professionals or family. Advance Decision to Refuse Treatment (ADRT) This is a formal written document that states which treatments a patient would wish to refuse and in which circumstances. For it to be legally binding it must be signed, situation specific and there be no evidence that the individual has changed their mind. If the treatment they are refusing is lifesaving, then the document must also state that they are aware of this and the consequences of refusing it. EPARS An Escalation Plan and Resuscitation Status (EPARS) is completed for every inpatient in the hospital. As stated it not only includes their resuscitation status but also their agreed ceiling of treatment which can be for full escalation to ITU, for maximal ward based care or for best supportive care only. Source: End of Life Operational Group Status: Approved Page 2 of 13
3. End of Life Care End of life care is applicable for anyone suspected as being in their last 12 months of life. Research has shown that, at any time, a third of those in adult hospital beds are likely to be in their last year of life (Clark et al 2014). Good end of life care is therefore everybody s responsibility. The Priorities for Care of the Dying Person were developed in 2014. They are predominantly aimed at those in their last days of life, but the principles are applicable to anyone suitable for end of life care. Recognise Communicate Involve Identify patients who are likely to be in their last year of life through either: Already known on admission (may have a patient held My Care wishes (Yellow Folder) or an end of life care plan alert on e-care) Identified during hospital stay as having a progressive, incurable, deteriorating condition Sensitive communication needs to take place between healthcare staff, the patient and those identified as being important to them. EPARS should be part of these discussions. Give patient and family the information they need to take a full part in deciding priorities for their care. Support This applies to both the patient and those identified as important to them. Plan and Do On and during admission a full medical, nursing and allied healthcare professional assessment involving patient s family and carers as appropriate. Address physical, social, psychological, spiritual and information needs. An individual care plan is then agreed, coordinated and delivered. Initiate patient held records if appropriate (See Yellow Folder) On discharge: e-care discharge letter - A detailed discharge summary including information on patient s diagnosis, prognosis, patient s understanding of condition and preferences for their care sent to relevant health care professionals. Using EOLC alert on e-care Single Point of Access referral to District Nurses for palliative assessment. Patient held record My Care Wishes (Yellow) Folder Table 1: 5 Priorities of Care Summary 3.2 Recognise Source: End of Life Operational Group Status: Approved Page 3 of 13
Early confirmation that a patient is thought to be entering the last year of life i.e. has a terminal illness, is a key element in quality end of life care especially when it is accompanied by skilled communication with the individual and their family. All clinicians within the hospital will have to work together to identify those nearing the end of life. Tools for identifying patients nearing the end of life: Does the patient have advanced disease (advanced cancer, neurological conditions, heart, renal or respiratory failure)? Is there evidence of progression of a chronic condition? Has there been a sudden life threatening event and the patient is not responding to treatment? Is there information from primary care indicating a patient is on the Gold Standards Framework/Palliative Care Register? Would you be surprised if the patient died in the next few months, weeks, days? Frailty score Recurrent admissions within a short period of time 3.3 Communication Skilled communication with patients and carers will enable them to make decisions in advance about future care and treatment. Documenting the patient and carers preferences regarding their care and sharing this information with all professionals involved in their care, forms a basis for advance care planning. The aim is to minimise inappropriate admissions and interventions. Information obtained during the patient s stay should be passed on to other health care professionals with the aim of providing seamless care. Patients should be given the opportunity to complete Shared care and support plan found in the My Care Wishes (Yellow) Folder. With the patient s permission, the family and carers should be included in assessments as appropriate. 3.4 Involve and Support Recognising the importance of key family, friends and carers is important in delivering good end of life care. Support is available for carers, through organisations such as Suffolk Family Carers, St Nicholas Hospice, St Elizabeth Hospice and others. 3.5 Plan & Do Patients who have been identified will need a holistic needs assessment, incorporating physical, social, psychological, spiritual and information needs. These assessments do not need to take place all together, nor does one professional need to undertake them all. However, there should be someone who takes responsibility for these assessments during the admission. Source: End of Life Operational Group Status: Approved Page 4 of 13
Those identified as having complex needs, be they physical, psychological or social can be referred to the specialist Palliative Care team through e-care. Once identified and with the patients consent an end of life care plan alert should be created in their e-care record. Any significant changes or discussions should be communicated with their GP and other involved health care professionals on discharge. A Single Point of Access form should be completed for referral to the District Nursing team if needed for a palliative care assessment. 4. EPARS All adult patients that are admitted to the West Suffolk Hospital should have an Escalation Plan and Resuscitation Status (EPARS) completed. The EPARS should contain information regarding the patients diagnosis, if they are for active treatment and if they are for escalation or whether they are for best supportive care. In addition, the EPARS also contains decisions relating to cardiopulmonary resuscitation. Please refer to policy no. PP(14)305. If the patient has agreed that resuscitation would not be appropriate then a community DNACPR form should be completed on discharge. The patient should then keep this with them in a My Care Wishes (Yellow) Folder and this should be communicated with the GP on discharge from hospital. 5. My Care Wishes (Yellow) Folders It is important that patient information is always available to the patient, staff and carers on transfer/discharge from hospital. Therefore, establishing patient held records as a solution is an initiative that is used in Suffolk. The My Care Wishes folder is a patient held record which may contain current information on discussions that the patient has had about their condition and what is important to them in terms of care; this could include a community Do not attempt resuscitation document (see PP (14)305- EPARS Policy) On admission, if the patient brings in their folder, information contained within should be acknowledged and discussed with the patient and family as appropriate. The My Care Wishes Folder and contents should remain with the patient and any new information from the admission added on discharge. On discharge, if a new advanced care planning discussion has taken place during admission, it may be appropriate to issue a My Care Wishes Folder. Please contact the hospital Palliative Care Team for advice, or ask the GP to consider issuing a Yellow Folder after discharge. Outside of normal working hours My Care Wishes folders are available from F7 ward. See Appendix 2 6. Discharge Planning Patients reaching the end of their lives will often require special attention to their discharge planning and clear communication is essential for good co-ordination of care. Patients Source: End of Life Operational Group Status: Approved Page 5 of 13
(and carers) will need to be involved in discharge planning which should consider medications (required now and Just in Case ), on-going care and equipment. For some patients who have a short prognosis of days to short weeks and are rapidly deteriorating, there may not be time to go through the normal continuing care health needs assessment. These patients may be suitable for Fast Track Continuing Care funding and this can be facilitated through the Discharge Planning Team and the Palliative Care Team. The table below is a guide Prognosis Routine discharge Complex discharge Months Ward Discharge Planning Team Weeks Days Discharge Planning Team/Palliative Care Team Discharge Planning Team and Palliative Care Team Discharge Planning team and Palliative Care Team Discharge Planning Team and Palliative Care Team For all end of life care discharges, always refer to district nurses using single point of access to request a palliative care assessment and complete a comprehensive hospital discharge letter, (including patients diagnosis, prognosis, understanding of condition and care arranged). For those suspected to be in their last days to short weeks the patients GP should be called the day before discharge and updated with any significant changes of condition or medication. It should also be suggested that the GP enters the patient on their GP GSF/palliative care register, Summary Care Record and inform their Out of Hours provider as appropriate. 7. Implantable Cardiac Defibrillators Implantable cardiac defibrillators are used in patients with a significant risk of sudden death from an arrhythmia. However, when it becomes apparent that someone is dying from other co-morbidities a discussion about turning the defibrillator off needs to be had. Firing of an internal defibrillator in the last moments of life is not usually effective, however, in some circumstances it may still revert the patient s heart rhythm back to that which is compatible with an output. This can be painful and distressing for both patients and relatives, as well as creating a situation where the patient s quality of life and condition have deteriorated dramatically. Ideally discussions about this should be had at an early stage so the defibrillator can be deactivated in a planned manner. However, in an emergency a ring magnet can be used to deactivate the device. These can be found in ED and CCU. 8. Care of the Dying in Hospital Although many patients wish to die at home their condition and care needs may mean this is not possible and such patients (in the hospital) should be cared for using the principles of good palliative care and the Last days Of Life- Care of the Dying Adult Guideline (CG10057). The Healthcare team should follow these principles: -Assess the patient regularly and frequently so that the plan of care can be made or adjusted, taking into account the patient s wishes (where known) and families views. - Ensure that any decisions regarding plan of care is made only by the most senior healthcare professional responsible for the patient, following a face to face assessment, in Source: End of Life Operational Group Status: Approved Page 6 of 13
consultation with the patient (wherever possible) and family/carers, and other members of the multi-professional team. - Communicate with the patient (wherever possible) and family/carers regularly to address questions or concerns about any aspect of care. In particular, families need to be warned if the patient is likely to die in the next few days or hours, so that they can to begin preparing themselves. -Address, symptom control and comfort measures (including offering oral fluids, if able and good mouth care), and provision of psychological, social and spiritual care. Refer those who share any spiritual needs or concerns to one of our hospital chaplains on staff. High quality care of the dying is essential for not only patients but their families and carers as well as for our worth as healthcare providers. Resources Care of the Dying pages are available on the Pink Book and are an education resource for staff implementing this policy. Last Days of Life/Care of the Dying Adult CG10057 Bereavement Policy PP(16)252 Discharge Planning Policy PP (15) 062 References Clark et al. published online 17 March 2014 Palliative Medicine http://pmj.sagepub.com/content/28/6/474 National Palliative and End of Life Care Partnership: Ambitions for Palliative and End of Life Care (2015) Leadership Alliance for Care of Dying People: One Chance to Get It Right (2014) NICE: QS13 End of Life Care for Adults (2017) Department of Health: End of Life Strategy (2008) NICE: Supportive and Palliative Care improving outcomes guidance (2004) GMC: Treatment and care towards the end of life: good practice in decision making. (2010) NHS: National End of Life Care Programme. The route to success in end of life care achieving quality in acute hospitals (2010) Review and Monitoring This End of Life Care Policy will be reviewed through the End of Life Steering Group using a set of metrics (see Appendix 5) Source: End of Life Operational Group Status: Approved Page 7 of 13
Appendix 1 - End of Life Care Source: End of Life Operational Group Status: Approved Page 8 of 13
Appendix 2 The My Care Wishes Yellow Folder It is important that patient s care wishes are always available to the patient, staff and carers on transfer in and out of hospital. Therefore, in Suffolk, the yellow folder was devised to hold this information. The My Care Wishes (MCW s) Folder can contain information of the patient s knowledge of their condition, wishes for their future care, including a personalised shared care and support plan, and often a community do not attempt cardiopulmonary resuscitation form (DNA CPR). The folders are now extended to all frail individuals with complex health and social care needs and not just those identified as being within the last 12 months of life. Guidance on use and details of the contents are available at: https://www.westsuffolkccg.nhs.uk/clinical-area/clinical-workstreams-and-currentpriorities/integrated-care/my-care-wishes/ On admission With the patient s consent, read through the information in the folder and discuss with the patient and family as appropriate. The presence of a folder should be noted on e-care. A hospital EPARS should then be completed for the current admission within the first 24 hours, in line with the yellow folder contents. The MCW s folder and contents should remain in the patient s notes and any new information from the admission added on discharge. For discharge Source: End of Life Operational Group Status: Approved Page 9 of 13
Patients approaching the end of their lives should be offered a MCW s folder to complete. Contact the hospital palliative care team on extension 3776 for a new folder or request the GP to consider issuing a MCW s yellow folder via the discharge letter.(in OOH s folders are available from F7 ward) Please refer to the West Suffolk Hospital Escalation Plan and Resuscitation Status (EPARS) (including DNA CPR) Trust Policy for guidance on community DNA CPR on discharge. Appendix 3 Just in Case Discharge Medication prescribing and discharge letter guidance (See in conjunction with CG10329- Just in case medications and syringe driver use) Prescribe regular and PRN medications as on the drug chart In addition prescribe End of life just in case Medications in case the patient s condition changes to avoid unnecessary admission. If the patient is already receiving end of life medications regularly, the dose may be different to the just in case prescription. Check the dose carefully. All of the just in case injectable preparation medications have been pre-formatted into an Outpatient Medication for End of Life Care Order set for normal renal function/ renal impairment. (see screenshot below) Controlled drugs will need to be printed off the CD prescription, signed, dated and GMC number added. Phone the GP prior to discharge to request a visit informing them of: o The current situation and likely rate of deterioration Source: End of Life Operational Group Status: Approved Page 10 of 13
o Any preferences or priorities the patent may have o Medications supplied Ensure that Just in Case medications are prescribed in a way that the district nurses can give them i.e. The GP has agreed to complete administration charts once home or Hospital Palliative Care team has completed community administration charts before discharge. Complete the discharge letter, including the End of Life section under additional information. Useful phrases for preferences and plans could be:. o The patient s prognosis is thought to be days to short weeks o The patient has expressed a wish to be cared for/die at home o If patient s condition changes consider alternatives to an acute hospital bed. Appendix 4 Discharge checklist - details should be recorded in the patient s notes Yes N/A Initials COMMUNICATION WITH PATIENT/FAMILY Are the patient/family aware and in agreement with the discharge plan/destination. Is the family aware the patient is being discharged for end of life care? Has a MCW folder been issued by the palliative care team? Has a community DNA CPR been discussed with patient/family and completed? Has the family been provided with an `End of Life, The Facts booklet? Do the patient/family need to have discussion regarding risks associated with travelling? If yes please document conversation in notes. If appropriate, have any outstanding outpatient appointments been cancelled? Has the family been provided with emergency contact numbers? FUNDING Has the Fast Track document been scanned to the relevant CCG and discussed and care package/placement agreed? MEDICATIONS Has the hospital doctor prescribed all the TTO medications for one week, including end of life medications Just In Case? Is the patient receiving medications via syringe pump? If yes please see syringe pump policy. In addition: Have extra giving sets and supplies been provided? Has the medical equipment library been informed and are documents completed for syringe pump to accompany patient into community? Has the syringe pump been reloaded and new battery inserted? Has the District Nurse been notified of the syringe pump? HOME OXYGEN (if applicable) Is the level (L/min) of home oxygen decided and documented? If receiving oxygen at home already is this sufficient for their needs - set to correct flow rate? Has the oxygen been ordered? (Specialist Discharge Planning Team) EQUIPMENT Has the patient s equipment needs been assessed? Has all equipment been delivered? Are supplies from ward being sent with patient (pads, pants, needles, syringes, gloves, aprons, catheter bags etc)? TRANSPORT Is there any problem with accessing the property? Has transport been booked and the time documented? Advise transport End of Life Care patient. DISCHARGE COMMUNICATION - Home Has a Single Point of Access Referral been sent to the appropriate District Nursing Team for palliative assessment? Has the discharge summary been completed and sent to the General Practitioner (GP) Has the hospital doctor phoned and spoken to the patient s GP to advise of discharge, discuss medication and to request a home visit? If appropriate, has a referral been made to the Community Palliative Care Team? DISCHARGE COMMUNICATION Nursing Home Source: End of Life Operational Group Status: Approved Page 11 of 13
Nursing home staff in agreement with date/time of discharge? Discharge Health Assessment completed and sent with patient? Has the hospital doctor phoned and spoken to the patients GP to advise of discharge and to request a visit to prescribe just in case medications? IMMEDIATELY PRIOR TO DISCHARGE check Syringe pump reloaded? Are stat doses of medication required for the journey? Medications all complete? All property with patient? Is patient fit to travel? MCW folder and discharge letter sent with the patient Have Palliative Care Team notified: Out of Hours GP of the discharge? Appendix 5 West Suffolk Hospital End of Life Care Metrics National Guidance Informing Metrics: NICE Quality Standards for End of Life Care in Adults (QS13) 2017 NICE Quality Standard Care of the Dying Adult (QS144) 2017 National Care of the Dying Patient Hospitals Audit 2015 Supportive and Palliative Care Improving Outcomes Guidance 2004 Information Standards Board National End of Life Care Programme Metrics to be Reviewed by End of Life Care Operational Group Hospital End of Life Care (Care of the dying audit) Yearly An aspect of care of the dying Results, recommendations, action plan Fast track discharges Fast track discharges each quarter Reasons for discharge not being achieved Care after death Quarterly data (monitored by the mortuary staff) Ward level data Hospital End of Life Care Monthly data on use of Last days Rounding Tool Quarterly review of Complaints, DATIX s and PAL s contacts to look for themes and develop action plan Author(s): Other contributors: Approvals and endorsements: Consultation: Dr Mary McGregor, Samantha Hobson End of life operational group, Clinical directors Medical and Surgical, End of life operational group. D&T Source: End of Life Operational Group Status: Approved Page 12 of 13
Issue no: 2 File name: Supercedes: Equality Assessed Implementation Monitoring: (give brief details how this will be done) Other relevant policies/documents & references: Additional Information: Source: End of Life Operational Group Status: Approved Page 13 of 13