END OF LIFE
ALAS HEALTHCARE
Scope
Policy Statement
Coronavirus and End of Life Care
The Policy
Procedure
Advance Care Planning
Involving Family and Friends
Communicating and sharing information between services
Matching Care Workers
Death of a Service User
Confirmation or Verification of Death (applicable to nursing services)
Principles of Practice
Role of Nurse
Education and Training
Deaths and the Role of the Coroner
In the event of a Death
Staff Support
Related Policies
Related Guidance
Training Statement
Allowing an individual to die with dignity in the comfort of their own home with their own family around them is a key measure of good end of life care.
This policy fully reflects the current guidance issued by NICE and the Leadership Alliance for the Care of Dying People’s Five Priorities of Care which are:
Recognise. The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made, and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
Communicate. Sensitive communication takes place between staff and the dying person, and those identified as important to them.
Involve. The dying person and those identified as important to them are involved in decisions about treatment and care to the extent that the dying person wants.
Support. The needs of families and others identified as important to the dying person are actively explored, respected, and met as far as possible.
Plan and do. An individual plan of care, which includes food and drink, symptom control, and psychological, social, and spiritual support, is agreed, coordinated and delivered with compassion.
The above guidance provides specific, concise quality statements, measures, and audience descriptors to provide the public, health and social care professionals, commissioners, and service providers with definitions of high-quality care.
Coronavirus and End of Life Care
We must support, where wanted, the dying person’s wish to have family or faith leaders visiting them in their own home. Family and friends visiting the service users home will be informed of the guidelines on the use of PPE and risk minimisation for visiting in this situation.
Effective communication should take into account the preferences of the service user as to how they would like to receive information, who they would like to be involved with, and how much or little information they would like to receive.
It is also important that we offer information and support on practical options for the dying person to keep in touch with loved ones where physical visiting to their home is not possible. Virtual visiting strategies, such as the availability of internet-connected equipment for staff to facilitate contact with families by video call, volunteer message services, and other initiatives are discussed with the service user and the family and support is given wherever possible.
The fundamental principles of compassionate, individualised end of life care supported by excellent communication have not changed and are essential in caring for service users dying with or without COVID-19. Looking after ourselves and our teams remains fundamental to being able to deliver this care effectively and is perhaps more important than ever in current times.
The Policy
Procedure
As an organisation, we seek to adhere to the following statements and, through assessment and planning, provide effective and caring end-of-life care for our service users. We work closely with outside professionals. such as cancer care nurses, Macmillan nurses, and GPs to ensure the best possible outcome for the individual.
Staff must be aware of how and, perhaps more importantly when to respond to minimise distress and adhere to any cultural beliefs or preferences that the service user, their family. or representative have expressed as part of their care and support plan.
The following reflects the NICE Quality Statement QS13 and NICE Guideline 142 and the Five Priorities of Care:
People approaching the end of life are identified in a timely way.
People approaching the end of life and their families and carers are communicated with and offered information in an accessible and sensitive way, in response to their needs and preferences.
We support and enable adults approaching the end of their life to actively participate in decision making by having in place:
Processes to establish the amount and type of information they would prefer
Systems to provide information in a way that meets their communication needs and preferences, for example, how it is given (verbally, on paper, by text, email, or other assistive technologies) and provision of professional interpreters
Arrangements to review and anticipate their information needs and preferences as circumstances change.
Respecting people’s right to make their own decisions, and not make assumptions about people’s capacity to be in control of their own care and support at this time
Actively involving the person in all decisions that affect them.
Provide support to people, if they need it, to express their views, preferences and aspirations in relation to their care and support. Identify and record how the person wishes to communicate and if they have any communication needs in line with the Accessible Information Standard.
People approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop, and review a personalised care plan for current and future support and treatment.
People approaching the end of life have their physical and specific psychological needs safely, effectively, and appropriately met at any time of day or night, including access to medicines and equipment.
People approaching the end of life are offered timely personalised support for their social, practical, and emotional needs, which is appropriate to their preferences and maximises independence and social participation for as long as possible.
People approaching the end of life are offered spiritual and religious support, appropriate to their needs and preferences.
Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.
When managing and delivering services we think about what practical and emotional support that can be provided to carers of adults approaching the end of their life and review this when needed
When managing and delivering our services we will make the family aware of the right to a carer’s needs assessment in line with the Care Act 2014.
People approaching the end of life receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night and delivered by practitioners who are aware of the person’s current medical condition, care plan, and preferences.
The lead healthcare professional should ensure that the person approaching the end of their life is offered opportunities to discuss their existing treatment plans with a healthcare professional. The person’s carers and other people important to them should be included in the discussions if the person agrees. This should include discussing:
Any changes that could optimise care and improve their quality of life (for example, reducing the number of unnecessary routine appointments, organising appointments close to the person’s home, starting new treatments or stopping unhelpful treatments)
Community support that is available to help with their treatment.
People approaching the end of life who experience a crisis at any time of day or night receive prompt, safe, and effective urgent care appropriate to their needs and preferences.
People approaching the end of life who may benefit from specialist palliative care are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night.
We consider seeking advice from voluntary and community sector organisations such as disabled people’s organisations and user-led organisations with expertise in equality and diversity issues to ensure that they can deliver services that meet the needs and preferences arising from:
Gender, including transgender
Sexual orientation and sexuality
Disability
Ethnicity
Religious and cultural practices
The body of a person who has died is cared for in a culturally sensitive and dignified manner.
Families and carers of people who have died receive timely verification and certification of the death.
People closely affected by death are communicated with sensitively and are offered immediate and ongoing bereavement, emotional, and spiritual support appropriate to their needs and preferences.
Health and social care workers have the knowledge, skills, and attitudes necessary to be competent to deliver high-quality care and support for people approaching the end of life and for their families and carers.
Generalist and specialist services providing care for people approaching the end of life and their families and carers have a multidisciplinary workforce sufficient in both number and in the mix of skills to provide high-quality care and support. This includes:
Regular discussions with a member of their care team about changes in their health and social care needs and preferences.
Repeat assessments of their holistic needs and reviews of their advance care plan when needed, for example at key transition points.
Advance Care Planning
We have developed policies to ensure that advance care planning is offered to
adults who are approaching the end of their life. Policies take into account
the needs and circumstances of all our service users. See Advance Care Planning
Policy.
Involving Family and Friends
We ask the person at the first point of contact whether and how they would like their carers, family, friends and advocates or other people of their choosing (for example, personal assistants) to be involved in discussions and decisions about their care and support during this time, and follow their wishes.
We review this regularly, monthly or when requested.
If the person would like their carers, family, friends and advocates involved:
We explain the principles of confidentiality, and how these are applied in the best interests of the person.
We discuss with the person and their carers, family, friends and advocates what this would mean for them.
We share information with carers, family, friends and advocates as agreed.
If a person lacks the capacity to make a decision about whether they wish their carers, family, friends and advocates to be involved, the provisions of the Mental Capacity Act 2005 will be followed.
Communicating and sharing information between services
We ensure that adults approaching the end of their life have care that is coordinated between health and social care practitioners within and across different services and organisations, to ensure good communication and a shared understanding of the person’s needs and care.
We use electronic information-sharing systems that are accessible between different services and organisations to enable information to be reviewed, updated and shared efficiently within and between multipractitioner teams, across different services and organisations.
Matching care workers
We ensure there is a transparent process for ‘matching’ care workers to people,
taking into account:
Discussions with the service user and their family.
The person’s end of life care and support needs.
The care workers’ knowledge, skills and experience.
If possible and appropriate, both parties’ interests and preferences.
That care workers are able to deliver care and support in a way that respects the person’s cultural, religious and communication needs at this time.
Death of a Service User
It is hopefully a rare occurrence that a death of a service user takes place whilst they are receiving a service from this organisation. Nevertheless, staff must be aware of how and, perhaps more importantly, when to respond to minimise distress and adhere to any cultural beliefs or preferences that the service user, their family, or representative have expressed as part of their care and support plan.
Staff must remember that the death of a service user does not mean that information is not to be protected and that confidentiality is still in place.
This organisation will co-operate fully with multi-agency partners to ensure all lawful requirements are met and will assist when asked or directed by a lead agency.
All communication will be dealt with in a sensitive professional manner that promotes the privacy and dignity of the service user their family or representative.
Confirmation or Verification of Death (applicable to nursing services)
Confirmation or verification of death is defined as deciding whether a person is deceased. Confirmation or verification of death can be undertaken by a registered nurse [INSERT OR DELETE IF LOCAL AGREEMENTS OR BUSINESS INSURANCE ALLOWS FOR THIS OR IT IS ACCEPTED AS PRACTICE IN YOUR SERVICE].
Certification of death requires a registered medical practitioner.
The involvement of healthcare professionals, including nurses, does not stop once an individual has died. Caring for dying people at home requires the use of care pathways that include care after death. Nurses are the health professionals most commonly present at the time of an individual’s death. They are therefore ideally placed to verify that a person has died and provide support and information to the bereaved.
Principles of Practice
When discussion has taken place between the appropriate medical practitioner and nursing staff – and it has been agreed that further intervention would be inappropriate and death is expected to be imminent – designated nurses may confirm or verify the death. Wherever possible the relatives should be made aware of the individual’s deteriorating condition and the individual’s care plan.
Where the death is unexpected, the nurse has the responsibility to initiate resuscitative measures, as long as they are in the best interests of the individual and unless an agreed statement has been made that resuscitation is not to take place.
These principles for practice can apply in any healthcare setting. The nurse must be trained and deemed competent to confirm the death and there must be explicit details in the care plan/end-of-life plan.
Responsibilities of the Nurse or GP
Record keeping is an integral part of the process and there is an expectation that the nursing and medical records must reflect that death is expected.
Records should also show details of the confirmation of death, with the time, date, and any other observations that were recorded. The time and date the doctor was informed must also be included.
Education and Training
Education and training are made available and nurses and care staff should ensure they have enough confidence, competence, knowledge, and skills to equip them for undertaking this role.
Education is based on broad principles for practice, as identified in the NMC Code and NICE.
Specific topics that may be included are aspects of accountability, current legislation, and the necessary skills and knowledge to determine the physiological aspects of death.
Care staff receive training from [INSERT HERE AS APPLICABLE]
[INSERT HERE INFORMATION ABOUT GOLD STANDARD FRAMEWORK IF APPLICABLE]
Deaths and the Role of the Coroner
Under English law, the coroner is an independent judicial office holder, paid for by the relevant local authority (LA). They must be either a lawyer or a GP, sometimes both. Their role is to inquire into certain types of death(s). Where an inquest is held, they have a duty to establish the cause of death in so far as this is possible. They are not allowed to determine criminal liability nor who was responsible. The criminal court would decide this. Coroner’s officers work under the direction of the coroner and liaise with bereaved families, police, doctors, witnesses, and funeral directors. They receive reports of deaths and make inquiries at the direction and on behalf of a coroner.
Registrars of births and deaths, doctors, or the police report unexpected deaths to a coroner in specific circumstances. These include where it appears that:
No doctor attended the deceased during their last illness.
Although a doctor attended during the last illness, the deceased was not seen either within 14 days before death or after death.
The cause of death appears unknown.
The death occurred during an operation or before recovery from the effects of an anaesthetic.
The death was due to an industrial accident disease of poisoning.
The death was sudden or unexpected.
The death was due to violence or neglect.
The death was in other suspicious circumstances.
The death occurred in prison or police custody.
In the event of a Death
In the event of a death of a service user, the following process should be adhered to and staff should be supported and assisted throughout. Regardless of the experience of staff in working with the dying, it is important to recognise the distress, shock, or trauma that can follow, especially where the death is sudden or unexpected.
If a staff member arrives on a scheduled visit and finds the service user has died, their first response should be to dial 999 and request an ambulance. It is important to remember that the death has to be medically certified, so no assumptions should be made regarding the status of the service user. The body should not be moved or handled in any way before the medical services arrive.
The office should be informed. This includes the on-call, where the death is discovered out of hours. Full details should be recorded and an incident form completed.
The staff member who made the discovery should remain at the address, to assist fully with any enquiries.
The medical services will lead and liaise with the office, as required upon their arrival, e.g. they may ask that the staff stay until the undertaker or next of kin arrives or the police may request that they stay to secure the premises.
Where staff are distressed or anxious, a member of the office-based staff may be asked to relieve them and consideration should be given to the cover arrangements necessary for the rest of their schedule.
The office will liaise with the lead agency until all formalities are settled and the office will keep detailed records of any dialogue. The file will then be closed in the usual way.
Consideration should be given to requests to any funeral attendees from the company. This will take into account such things as how long the service user was with us, their regular care workers etc., and the availability of cover.
Staff Support
No matter how experienced a staff member might be in working with the dying, it is
important to recognise the distress, shock or trauma that can follow a death,
especially where it is sudden or unexpected. Staff involved with end of life care and the death of a service user will be offered help and support. This will include the opportunity to talk to another member of staff and/or supervision with their supervisor. Access to outside professional help will be made available if required.
Notification to CQC
This organisation will notify the Care Quality Commission (CQC) by email within 24 hours of the death of a service user during their service provision as required under the Duty of Candour: Regulation 20 of the 2014 Regulation.
Related Policies
Advance Care Planning
Assessment of Need and Eligibility
Basic Life Support
Consent
Dignity and Respect
DNACPR
Notifications
Nutrition, Hydration and Food Safety
Person Centred Planning
Prevention of Pressure Ulcers
Related Guidance
Nice Guidelines NG31, December 2015: Care of Dying Adults in the Last Days of Life:
https://www.nice.org.uk/guidance/ng31
Nice Guideline NG142 End of life care for adults: service delivery https://www.nice.org.uk/guidance/ng142
NICE Quality Standard (QS13), Updated September 2021: End of Life Care for Adults: https://www.nice.org.uk/guidance/qs13
NICE Quality Standard (QS144), March 2017: Care of Dying Adults in the Last Days of Life:
https://www.nice.org.uk/guidance/qs144
Skills for Care: Common Core principles and Competencies for Social Care and Health Workers Working with Adults at the End of Life: http://www.skillsforcare.org.uk/
One Chance to Get it Right: Leadership Alliance for the Care of Dying People (Five Priorities of Care): https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf
Nursing and Midwifery Code:
Guide to Coroner Services and Coroner Investigations: https://www.gov.uk/government/publications/guide-to-coroner-services-and-coroner-investigations-a-short-guide
Notification of Death Regulations 2019: http://www.legislation.gov.uk/uksi/2019/1112/made
Training Statement
All staff, during induction, are made aware of the organisation’s policies and procedures, all of which are used for training updates. All policies and procedures are reviewed and amended where necessary, and staff are made aware of any changes. Observations are undertaken to check skills and competencies. Various methods of training are used, including one to one, online, workbook, group meetings, and individual supervisions. External courses are sourced as required.
Date Reviewed: October 2022
Person responsible for updating this policy:
Next Review Date: October 2023
Return to Policy Heading (Ctrl+Click) – Policy Heading
