Standards 12 Explanation of terms/ Definitions - References and Supporting Documents Roles and Responsibilities 14

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1 Classification: Guidelines Lead Author: Marie Busuttil, Community End of Life Care Lead Additional author(s): Fiona Murphy, ADNS Bereavement and Donation Authors Division: Salford Health Care Unique ID: 269TD9G Issue number: 2 Expiry Date: January 2017 Contents Section Page Who should read this document 2 Key points 2 Background/ Scope 2 What is new in this version 3 Protocol Care before death 3-4 Care at the time of death Standards 12 Explanation of terms/ Definitions - References and Supporting Documents Roles and Responsibilities 14 Appendix 1 Flowsheet 15 2 Community Statement of Intent Resources and Support for Children and Young Adults 19 Document control information (Published as separate document) Document Control 20 Policy Implementation Plan 21 Monitoring and Review 21 Endorsement 22 Equality analysis Page 1 of 20

2 Who should read this document? The Guideline is relevant to staff caring for adults over the age of 18 who have died and it also includes care before death and care at the time of death. Key Messages guideline includes communication with the dying patient and their significant others organ and tissue donation/choices and keepsakes referral to the coroner physical care of the deceased and transfer from the care setting The process for managing the death of a child or young person less than 18 years of age is detailed in Management of sudden and unexpected death in childhood policy. to access SUDC policy While the underlying principles of care and respect apply to all ages there are several statutory requirements staff must follow if the deceased is under 18 years of age. Background & Scope The role of healthcare staff at the end of life extends beyond death to provide care for the deceased person and support to their family and carers. The physical care given by healthcare staff following death in all care settings has traditionally been referred to as last offices. However in this guidance we refer to care after death, a term more befitting of our multi-cultural society. The new terminology is intended to reflect the ongoing support offered to families and carers and the physical preparation of the body called personal care after death. The care with which our dead are treated is a mark of how civilised a society we are. Much goes on for understandable reasons behind closed doors. For this reason there is a special responsibility placed on those entrusted with this work and the authorities that supervise it to ensure that the bodies of the dead are treated with the upmost care and respect. That is what bereaved and loved ones are entitled to expect and what society demands (1) Page 2 of 20

3 What is new in this version? This revised guideline refers to current documentation used to record care before and after death. These include electronic documents, used in hospital and community (EPR and Communicate my Care) and paper documents used in the community (End of Life Care Plan). Protocol - Care before death While it can be hard to identify when someone is dying, there is guidance regarding complex decision- making and care (3) Where dying is anticipated and predictable, it is important that agreement is reached between medical and nursing teams, patients and their families about clinical decisions. These include whether to attempt cardio-pulmonary resuscitation and ceilings of care discussions. If an implanted cardiac device is in situ it is usually left in place. Pacing therapy is not normally discontinued but the deactivation of implantable cardiac defibrillators needs to be considered. (4) Click Here to access SRFT Deactivation Reactivation of Implantable Cardioverter Defibrillator Policy Clear communication on all of the above decisions ensures there is clarity about whether a death is expected or not and allows for appropriate preparation of the dying person and their family/carers. In home and care home settings where death is expected, it is crucial that the GP reviews the person regularly and at least every 14 days, both from a care point of view and in order that a Medical Certificate of Cause of Death (MCCD) can be appropriately issued without involving the coroner. A Statement of Intent (appendix 2) can be completed by the GP and communicated to appropriate care providers Where possible, assess the dying person s wishes regarding organ, tissue and body donation and document in EPR/End of Life Care Plan/Communicate my Care. Whole body donation can only be agreed by individuals themselves and not by anybody else on their behalf after death. (5) It is a possibility that patients may be able to donate organs and tissues after death. Patients dying in critical care areas including intensive care, emergency department and theatres may be able to donate organs after their death. For more information please contact Specialist Nurse Organ Donation (SNOD) 24 hour pager on Also see bereavement booklet (Organ and Tissue donation). Page 3 of 20

4 While organ donation can only take place within an acute trust, tissue donation can be facilitated in either an acute trust or a community setting. The health care professional caring for the dying person and their family needs to contact the National Referral Centre (for tissue donation) to assess donor suitability, on The NRC will advise on the next steps. However, if the death requires investigation, the coroner may prevent donation because the criminal justice takes precedence in such circumstances. Every case therefore needs to be discussed with the coroner, for support contact specialist nurses above. Identify and document in advance any spiritual, cultural or practical wishes the dying person and their family/carers may have for the time of death or afterwards, particularly regarding urgent release for burial or cremation. This can be done as part of the advance care planning process (6). Deliver care that is sensitive to the cultural and religious needs and personal preferences of the dying person and their family/carers (7) Ask the person (if this is possible and/or appropriate) who they wish to be present at the time of their death. If this is not possible, try to find this out from the family/carers, as well as details of how they wish the news to be communicated if they are not present (8). Relevant contact details will need to be recorded and readily accessible by all appropriate staff. Accommodate people s preferences for place of death wherever possible. In communal settings offer people and their families the option of single room accommodation (if available). This can engender a feeling of homeliness, allows dying people to rest, gives them privacy and enables them to have family to stay for extended periods without intruding on others (9) Not all dying people, however, will want a single room and the evidence indicates that while it can be distressing for others to witness a death it can also be comforting when the process is well managed (10). In hospital display the SWAN sign on the door of the room to indicate that a dying/deceased patient is being cared for. Care at the time of death If present at the time of death, an appropriately trained health care worker needs to document the time, who was present, the nature of the death and details of any relevant equipment or devices (such as syringe pumps and cardiac defibrillators), as well as their own name and contact details. If relatives have any concerns about the death these should also be documented in EPR/End of Life Care Plan/Communicate my Care and reported. When death occurs inform the medical practitioner primarily responsible for that person s care. Verification needs to be completed and documented by a doctor or Page 4 of 20

5 appropriately trained healthcare professional before the body is transferred from the care setting. Refer to SRFT clinical guidelines for Verification of Expected Death by Nurses. Click here to access. In all care settings it is advisable for verification to take place as soon as possible The professional verifying the death is responsible for confirming the identity of the deceased person (where known) using the terminology of identified to me as. This requires name, date of birth and NHS/Hospital number if known. In hospital it is good practice to attach name bands with this information to the wrists or ankle of the deceased person. The following details are required when reporting a death to the coroner: the professionals telephone/bleep number; the deceased person s name, address, date of birth and GP details; family members names, contact details and relationship to the deceased person; date and time of death; details of the person who verified the death and details of what happened leading up to the death. The professional who verifies the death ascertains whether the person had a known or suspected infection and whether this is notifiable. In such cases refer to Standard Infection Control Precautions Policy for reporting responsibilities Click here or contact Infection Control Team The protection of confidentiality continues after death however, this does not prevent the use of sensible rules to safeguard the health and safety of all those who may need to care for the deceased. There needs to be clear communication regarding infection risk and the presence of implantable devices to mortuary staff and funeral directors. If family/carers are not present at the time of death they need to be informed by a professional with appropriate communication skills and offered support, including access to a spiritual leader or other appropriate person. The police can be of assistance in locating relatives and breaking significant news. When death is unexpected, the professionals involved in caring for the person when they died need to inform the family face-to face (whenever possible). They also need the necessary communication skills to do this and to ensure there is appropriate support such as an interpreter service, available where there may be communication barriers. Where the person had a known illness that requires referral to the coroner (eg. mesothelioma) but dying is anticipated, it is not always necessary to inform the police. If the case is being referred to the coroner, seek advice before interfering with anything that might be relevant to establishing the cause of death. It is essential to comply with legal requirements for deaths that require an investigation by the coroner. See policy flow- sheet - appendix 1 and Click here to access Gov.uk guide When a death is reported to a coroner. Healthcare staff should ensure they are familiar with deaths that require such a referral as this will facilitate the correct personal care and enable staff to prepare the family Page 5 of 20

6 both for a potential delay in the processing of the MCCD and the possibility of a postmortem examination. Healthcare staff should be aware of the physical environment and the needs of any children present. If the deceased person was living in a care home or other establishment, but died in hospital, inform the staff there too, as they may know about the person s wishes around death. If a safeguarding issue becomes apparent after death refer to policy Click Here Action Rationale This policy applies to the death of an adult. Please follow SUDC policy following the death of a young person under 18 years of age. Click Here 1. Ensure that the deceased is treated with dignity at all times and that staff attitudes and behaviours convey respect. A doctor or appropriately trained nurse should perform verification of expected death in a timely manner and document in section of EPR/End of Life Care Plan/Communicate my Care.. In the case of an unexpected death or non-availability of an appropriately trained nurse, a Doctor must be requested to verify the death 2. Offer families/carers: Condolences Opportunity to be involved in physical care after death Grief responses support sheet Information for Bereaved Relatives booklet What to do after a death 1. All patients should be cared for with dignity. Confirmation of death is necessary prior to the deceased being transferred to the mortuary or funeral director s premises. Nurses verify expected deaths only 2. To offer bereavement support to family/carers and children present. Page 6 of 20

7 booklet Bereavement follow up from staff in Pam Woods suite (out of hours a voic can be left If children/young adults are present, consider their needs (Appendix 3 has a list of resources available to support children and young adults) 1. Action (whenever possible) spiritual, cultural or practical wishes of the deceased person and their family/carers Chaplaincy service available 24 hours a day via hospital switchboard 4. Straighten limbs (if possible) with their arms lying by their sides and leave one thin pillow under the head. If it is not possible to lay the body flat due to a medical condition then inform the mortuary staff or funeral director 5. Close the eyes by applying light pressure for 30 seconds. If this fails then explain sensitively to the family/carer that the funeral director will resolve this. If eye donation is to take place, close the eyes with gauze (moistened with normal saline) 6. Wash the deceased and clean inside the mouth to remove any debris and secretions. Clean and replace dentures as soon as possible after death. If they cannot be replaced send them with the deceased in a clearly identified receptacle. Prosthetics should also be sent with the deceased. 7. Tidy the hair and arrange into a preferred style (if known) To provide age-appropriate support. 3. To comply with the preferences of the deceased and their family/carers whenever possible. 4. To maintain the appearance of the deceased 5. To maintain the appearance of the deceased. To prevent them drying out. 6. To maintain the appearance of the deceased. 7. To guide the funeral director for final presentation. Page 7 of 20

8 8. Do not shave the deceased person when they are still warm unless requested to do so by family/carers. 8. Shaving can cause bruising and marking of the skin which only appears days later. If shaving is requested, explain the consequences and document in the notes. Be aware that some faith groups prohibit shaving. 9. Support the jaw by placing a pillow or rolled up towel underneath (remove it before family/carers view the deceased). Avoid binding with bandages to keep the mouth closed. 9. To maintain the appearance of the deceased. This can leave pressure marks on the face. Some people have deformed jaws that will never close notify mortuary staff or funeral directors if this is the case 10. Cap infusion lines and leave in situ, (in community lines can be removed) record volumes infused and volumes that remain to be infused. Coil infusion lines gently against the body and secure with tape. Document disposal of medication according to policy. 10. To discontinue infusion and to comply with Trust policy. Hospital Guidelines - Community Guidelines Click Here 11. Remove urinary catheters and use pads and pants when necessary. 12. Contain leakages from the oral cavity or tracheostomy sites by suctioning (if possible) and/or positioning. Suction and spigot nasogastric tubes (if possible) and remove if appropriate. Cover exuding wounds or unhealed surgical incisions 11. To absorb any leakage of fluid from the urethra, vagina or rectum. 12. To reduce the risk of fluid leakage. Page 8 of 20

9 with a clean, absorbent dressing and secure with an occlusive dressing. Leave stitches and clips intact. Cover stomas with a clean bag. Clamp drains (remove the bottles), pad around wound and seal with an occlusive dressing but avoid waterproof, strongly adhesive tape. Tape can be difficult to remove and can leave a permanent mark. Consider the use of a body bag if excessive oozing and inform the mortuary at earliest opportunity. In hospital 15. Clearly identify the deceased person by placing two identification bracelets on the patient ensuring the following information is clearly recorded. 15. For the correct identification of the body by mortuary staff. Full name Date of birth Ward/unit Hospital/NHS Number The person responsible for identification is the person that verifies death. Complete all sections of the label for body identification (WZA 237) accurately. Ensure that details completed are checked and counter signed. Secure one label to the front of the shroud or nightwear with tape and another to the outer sheet wrapping the patient. The third copy is attached to the notes. Inform the mortuary if the patient has and implanted pacemaker or Devices must be removed if the Page 9 of 20

10 defibrillator device by recording the details on the body ID label 16. If there is no jewellery on the deceased, no leakage is expected and there is no notifiable disease present then the deceased can be wrapped in a sheet and taped lightly. deceased is to be cremated. 16. Binding the sheet or taping too tightly can cause disfigurement. If there is significant leakage or a notifiable infection is present, put the deceased in a body bag If jewellery remains on the deceased do not wrap until the porters come to transport the body To allow for mutual agreement of any jewellery left on the body. List all valuables in the valuables book and use bags with SWAN logo for property. These can be handed directly to relatives at the nurse s discretion. If relatives are not present valuables must be transferred to the Treasury Management department or night safe Assess and if appropriate/requested by family, offer to transfer the deceased to the mortuary on their bed If the deceased is being transferred on a bed contact bereavement centre for support For transfers using the Condolence Trolley request the portering staff to transfer the body to the mortuary within 2 4 hours of death. For the transfer of bariatric patients please also contact porters for advice. 18. Establish if a referral to Coroner is required (consult medical staff caring for the patient) and Inform family/carers of next steps (appendix 17.To facilitate choice To facilitate booking the deceased into the mortuary To meet acceptable transfer times To facilitate appropriate transfer 18. To ensure that relevant family/carers are aware of next steps Page 10 of 20

11 1). Give contact details for Pam Woods Suite In Community 19. If family/carers wish to wash/dress the deceased themselves, advise sensitively about soiling 20. If any jewellery is to remain on the deceased, record in End of Life Care Plan/DN notes and ask family member/carer to sign 21. Consider next steps 19. To provide information about infection control considerations. 20. To provide a record of valuables 21. If GP is available, notify them of the death To initiate completion of MCCD If GP unavailable refer to Statement of Intent guidance for next steps (appendix 2). To facilitate the appropriate procedure 22.Inform family/carers of next steps and give contact details for Pam Woods Suite To facilitate bereavement support In all care settings 24.Record all aspects of care after death in section of EPR/End of Life Care Plan/Communicate my Care identifying professionals and family/carers involved in care 24. To maintain accurate records of care after death Page 11 of 20

12 Standards Care after death includes: Honouring the spiritual or cultural wishes of the deceased person and their family/carers while ensuring legal obligations are met Preparing the body for transfer to the mortuary or funeral director s premises Offering family and carers present the opportunity to participate in care after death and supporting them to do so. Ensuring that the privacy and dignity of the deceased person is maintained Ensuring that the health and safety of everyone who comes into contact with the body is protected. For Infection control precautions The nature of the death and the context in which it has occurred may affect the level of support needed by those who have been bereaved. For example, some deaths are expected or peaceful while others may be sudden or traumatic. As a result, families and carers are likely to have a range of responses and needs and each may also have differing views about how the person should be cared for after death. Appropriate and sensitive care at this time is therefore vital. This guidance is a resource for healthcare staff and those who support them in providing care after death. Explanation of terms & Definitions NA References and Supporting Documents 1. Haddon-Cave, Charles,2000 The Marchioness Riverboat disaster cited in Disaster,Victim, Identification, Experience and Practice (2011) 2. 2.Department of Health (2008) End of Life Care Strategy; promoting high quality care for all adults at the end of life. 3. General Medical Council (2010) Treatment and care towards the end of life: good practice in decision making. 4. British Heart Foundation (2007) Implantable cardoiverter defibrillators in patients who are reaching the end of life. 5. Human Tissue Authority website (2011) How to donate your body (body and brain donation information pack 6. National End of Life Care Programme/National Council for Palliative Care/University of Nottingham (2009) Planning for your future care: a guide. Page 12 of 20

13 7. Nursing and Midwifery Council (2008) The Code: standards of conduct, performance and ethics for nurses and widwives. 8. J Ellershaw and S Wilkinson (editors) (2010) Care of the dying: a pathway to excellence (second edition) 9. S Waller et al. The Kings Fund (2008) Improving environments for care at the end of life: lessons from eight UK pilot programmes. 10. Payne et al (1996) Impact of witnessing death on hospice patients. Social Science and Medicine (vol 43, issue 12) pp National End of Life Care Programme and National Nurses Consultant Group (Palliative Care) (2011) Guidance for staff responsible for care after death (last Offices) Policies/Procedures Procedure for Management of Sudden Unexpected Death in Childhood Standard Infection Control Precautions Policy Verification of Expected Deaths by Nurses Gov.uk guide-what to do after some-one dies-part 3 When a death is reported to a coroner. Safeguarding Adults Safe Management of Controlled Drugs Roles and responsibilities Care after death requires sensitive and skilled communication, addressing the needs of family and carers and respecting the integrity of the person that has died. It is a very difficult time for those who have been bereaved and can be emotionally challenging for healthcare staff. Care after death is a key responsibility and in a community setting, this may also be the responsibility of carers, social care staff, GPs and funeral directors. Page 13 of 20

14 Care after death, while being one of the last processes of holistic care, is the first stage of a process that involves many professional groups. This process leads ultimately to cremation or burial of the body (see policy flow-sheet, appendix 1) Professionals involved in this guidance include doctors, nurses, mortuary staff, hospital porters, bereavement officers, police, social care staff, funeral directors, pathologists, coroners and faith leaders. Coordinated working between these individuals and organisations is vital if the process is to run smoothly. Professionals are responsible for ensuring that all relevant documentation is completed appropriately using care after death section of EPR/End of Life Care Plan/Communicate my Care. Appendices 1. Policy flow sheet 2. Statement of Intent 3. Resources and support for children and young adult Page 14 of 20

15 Appendix 1 Page 15 of 20

16 Appendix 2 Procedure for expected deaths in the community& in care homes The four Greater Manchester Coroners have issued revised guidance for the procedure following expected deaths in the community and care homes, taking effect from August This documents sets out the recommended handover procedure between in-hours and out-of-hours medical services. The aim is to prevent the unnecessary attendance of police in circumstances when a death has been anticipated but occurs at a time when the patient s regular GP is not immediately available to issue a Medical Certificate of Cause of Death (MCCD). The following 2-step procedure has been agreed: 1. The patient s own GP completes a Statement of Intent and circulates this to outof- hours GP services, out-of-hours district nursing teams and North West Ambulance Services (NWAS). A copy is left with the patient-held record in a sealed and dated envelope labelled STATEMENT OF INTENT. For the attention of doctors, nurses and ambulance staff only. This document is valid for a maximum of 14 days from last having seen the patient and must be updated after this. The GP signing the Statement takes on personal responsibility that an MCCD can be issued after death either by him- or herself or by another GP who fulfils the criteria for issuing the MCCD. In particular, GPs working part-time and those with imminent planned leave must ensure that suitable arrangements are in place. If the deputy GP is unavailable, the GP who issued the Statement must personally issue the MCCD on the same day. 2. The clinician verifying death (GP / District Nurse / Paramedic) follows the enclosed protocol to ensure that there are no new circumstances to raise any doubts as to the expected nature of the death. If satisfied that the criteria for expect death are still met, he/she may then authorise the Funeral Director to remove the body to the Chapel of Rest. If a copy of the Statement of Intent cannot be located in the patient s residence but a valid Statement of Intent is held in another location e.g. at the base of the attending service, the protocol may still be followed. If a Statement of Intent has not been issued, or if a Statement of Intent is invalid or expired, the usual procedure applies, requiring either a) the body to remain in the place of death overnight provided that family / carer / care home manager agree AND the patient s own GP surgery reopens within 24 hours (the MCCD must be issued before 12pm on the day the surgery reopens), or b) Greater Manchester Police to be called. Outdated or invalid Statements of Intent can be destroyed without further consultation. Page 16 of 20

17 Statement of Intent to issue a Medical Certificate of Cause of Death Insert an X where applicable to out-of-hours GP servi ces to out-of-hours District Nurses to NW Ambulance Service gp.ooh@nhs.net evening.service@nhs.net nwasnt.eolcgmm@nhs.net Name of terminally ill patient: «PATIENT_Title» «PATIENT_Forename1» «PATIENT_Surname» Date of birth: «PATIENT_Date_of_Birth» Place of care: enter details here NHS number: «PATIENT_Current_NHS_Number» This patient is expected to die within the next few days. I am a Registered Medical Practitioner and have been in attendance during the illness that is expected to lead to the person s death. I hereby certify that I: have last seen this patient on: enter date here. have no reason to believe that either a post-mortem examination or reporting to / discussion with the Coroner will be required or desirable. have no reason to believe that any third party might wish to request further examination of the body, for whatever reason. have no reason to believe that the expected death might have been due to or contributed to by the employment followed at some time by the patient. will be personally available to issue the Medical Certificate of Cause of Death (MCCD) on the next working day after the patient has deceased, or have made arrangements for another GP (who fulfils the requirements) to issue an MCCD in my absence. anticipate the following advanced and irreversible illness to lead to the patient s death: enter details here PLEASE INDICATE AS APPROPRIATE: I will not be on planned leave from my duties as a Medical Practitioner in the next 14 days, in which case this Statement of Intent remains valid for 14 days from the date indicated above. I will be on leave after enter date here (last day in work), in which case this Statement of Intent remains valid until 1830 hrs on this date (but no longer than 14 days from the date indicated above). Name of Medical Practitioner GMC Number Date «REFERRAL_Clinician» Signature of Medical Practitioner «REFERRAL_Referring_GP_GMP «SYSTEM_Date» _code» Practice Details / Stamp «PATIENT_Registered_GP», «PRACTICE_Name», «PRACTICE_Locality», «PRACTICE_Town», 01/11/2011 Page 17 of 20

18 Flowchart illustrating after-death-procedure Was the death expected? No Notify Greater Manchester Police Yes Is the deceased s own GP immediately available to issue an MCCD? Yes Usual GP verifies and issue MCCD. Funeral Director may then move the body. No Has a Statement of Intent been issued, and is it valid? No Yes Follow protocol for expected deaths If circumstances still compatible with expected death authorize Funeral Director to move the body. Will the deceased s own GP surgery open within the next 24 hours? Yes No No Body must not be moved Notify Greater Manchester Police Body must not be moved. If acceptable, body may be left in place until patient s own GP surgery reopens. Otherwise, notify Greater Manchester Police Page 18 of 20

19 Appendix 3 Resources and Support for Children and Young Adults What to tell children leaflet Click Here Winston s Wish is a childhood bereavement charity that offers support for children, young adults and parents/carers. The site has an interactive zone for children and many resources that are also available in several languages. A national helpline is also available. Click here to access the website; Childbereavementuk.com; CRUSE Bereavement Care; Pam Woods Suite Macmillan Information Centre For family support contact Specialist Macmillan Palliative Care Social Worker Andrea Hollingsworth Issue [1] [July 2013] Page 19 of 20

20 Issue [1] [July 2013] Page 20 of 20