End-of-life Care in Domiciliary Care (Wales) Policy

Policy Statement

{{org_field_name}} is committed to providing high-quality and compassionate care and support for people who use services and their relatives, carers and loved ones during the end stage of their life. The service will treat everyone with the utmost respect, compassion and dignity, supporting them where possible to make advance decisions relating to their care and treatment, and respecting their preferences. It will comply with all standards and regulations for high-quality end-of-life care as described below.

This policy set outs the values, principles and practices underpinning {{org_field_name}}’s approach to the care of people who use services who are terminally ill and whose death may be imminent.

The policy is in line with the current standards for end-of-life care as reflected in the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017. The standards require that people who are dying are treated with dignity and propriety, and their spiritual needs, rites and functions are observed. The standard also requires service provider to have in place policies and procedures for handling death and dying and to ensure that these are observed by staff.

The care home is also aware of the 2022 Quality Statement for Palliative and End of Life Care for Wales, which outlined the vision for palliative and end-of-life care delivered in Wales for all who need it by people working closely together, at home when appropriate, defined by what matters to the person and underpinned by what works.

Care Inspectorate Wales continues to collate, analyse and share data and intelligence to inform inspection activity and also inform the wider Welsh Government and partner approaches. They are prioritising inspection activity based on analysis of risk to ensure they are proportionate in securing improvement during post pandemic recovery where it is needed most.

The coronavirus Covid-19 pandemic raised specific challenges for people who use services, their families and the staff with regard to end-of-life care provision and subsequently for those people who died, either as a consequence of coronavirus or other causes. There was also the additional burden that social isolation placed on people who use services and their families with restrictions on contact with the deceased.

The Welsh Government outlined that for some Covid-19 incidents or outbreaks, routine visiting may continue but where contact is limited, due to lockdowns, people receiving domiciliary care should be able to receive visits from their two nominated essential visitors.

{{org_field_name}} follows Government guidance from the UK Health Security Agency, Covid-19 Supplement to the Infection Prevention and Control Resource for Adult Social Care, and undertakes appropriate infection control precautions to protect staff, visitors and people who use services.

In the event of death of a person with suspected or confirmed coronavirus, care staff comply with the Health and Safety Executive’s guidance on Handling the Deceased with Suspected or Confirmed Covid-19.

It is the organisation’s policy to make sure that in the event of a death, either expected or sudden, it follows all required procedures and provides support to bereaved relatives, friends and other people who use services who may be affected.

It is recognised that people receiving domiciliary care services could die for reasons that are unrelated to the services provided. In most cases, the agency will not be involved in the arrangements made after someone’s death.

During the coronavirus pandemic situation any death that the cause is unknown should be treated with appropriate precautions.

The service’s policy and procedures are also in line with the Social Services and Well-being (Wales) Act 2014, which puts the individual’s needs at the heart of every helping effort.

Managing Bodies of Deceased with Covid-19

Current guidance by the Health and Safety Executive on Handling the Deceased with Suspected or Confirmed Covid-19 will be followed by all staff.

This states that while risk of transmission from Covid-19 from the deceased is low, there may be ongoing risk of infection from handling body fluids and tissues where infection is suspected or confirmed. The exact duration that SARS-CoV-2 can remain infectious in body fluids and tissues in a deceased body is unknown. Standard infection control precautions (SICPs) and transmission-based precautions (TBPs) should be sufficient to protect those handling the deceased with suspected or confirmed Covid-19 while deceased people remain in the care home environment.

Precautions are outlined and include:

use of PPE as per guidance
maintaining a safe distance (at least 2m) from the bereaved and avoid contact with others with suspected or confirmed Covid-19 infection; ask others to leave the room and any areas the deceased will travel through as they are moved
place a barrier, such as a cloth or mask, over the mouth of the deceased when moving them to try and prevent the release of droplets from the respiratory tract
body bags are not deemed essential but could minimise infection risk; they are recommended where leakage of bodily fluids is likely
cloth wrappings (shrouds or wraps) and coffins may be used to manage the risk of contact transmission but are not a replacement for body bags, where recommended.

This guidance remains under review and may be updated in line with the changing situation as required. {{org_field_name}} will ensure it regularly checks for updates.

Practices that Involve Close Contact with the Body

During and post Covid-19 pandemic, it is essential people have their cultural and religious beliefs respected.

In some communities, deceased bodies are cared for by appropriately trained volunteers, or other family members. It is recommended those with underlying conditions should consider seeking advice from health professionals regarding whether they should undertake such a role and provide care for the deceased.

Further guidance for staff who manage the deceased can be found in the HSE publication Managing Infection Risks when Handling the Deceased.

This guidance remains under review and may be updated in line with the changing situation as required. {{org_field_name}} will ensure it regularly checks for updates.

Coronavirus Legislation: Registration of Death

The Coronavirus Act 2020 and pandemic enabled a temporary change to the law, and this Act which introduced easements to death certification processes and cremation forms during the pandemic, was repealed on 24 March 2022.

The following provisions are continuing.

iIf a doctor has not seen the deceased in the 28 days prior to their death or any time after death, they can complete the medical certificate of cause of death; however, the registrar would need to refer the medical certificate of cause of death (MCCD) to the coroner. This time period will remain at 28 days and not revert to pre-pandemic 14 days.
Ability for medical practitioners to send MCCDs to registrars electronically. The MCCD can be scanned or photographed and sent from a secure email account to registrars as an attachment.

The Form Cremation 5, which was suspended during the pandemic, will not be re-introduced after the Coronavirus Act expires and has now permanently been abolished.

Principles of End-of-life Care

The service implements all national guidance on palliative care and approved palliative care protocols.

It is committed to providing high-quality care to those users who choose to remain in their own homes when terminally ill or in a terminal condition, unless there are good reasons for seeking an alternative. Its service provision will be determined by the person’s condition or illness, the agency’s capacity to provide the necessary care and support, and medical guidance and advice.

The service ensures that where it offers terminal care and support, the individual and those close to them are treated with respect and dignity.

The service makes every effort to provide all the care and support for which it is responsible to the highest standard to make the person feel comfortable, safe and as free from as much pain and discomfort as possible. The service will work closely with palliative care practitioners to help implement the care plan that has been agreed.

It recognises that a person’s end-of-life plan could be additional to the general care plan and could involve established clinical procedures and recording tools, including for any “just in case” (anticipatory) medication, which is determined by local arrangements and protocols. The service will contribute to the plan as required and within its areas of responsibility and agreed roles and the competences of its staff.

The agency will need to liaise closely with the GPs, and community healthcare staff and community geriatricians to ensure they have palliative care requirements in place and ensure they have anticipatory medications available for end-of-life care provision.

Developing an End-of-life Care Plan

The agency recognises that an end-of-life care plan will usually include descriptions of how to:

reduce or control a person’s pain and discomfort
reduce or control signs of restlessness, anxiety or agitation
manage or control respiratory secretions
manage or control any nausea/vomiting
maintain mouth care
manage or control elimination of urine or faeces
relieve pressure, reduce or manage pressure points and sores.

The care plan will also contain details of any new procedures or interventions to be made in the light of the person’s changing condition and of any current procedures or interventions that have been modified. The agency will, as appropriate and within the scope of any agreed responsibilities, ensure that all medication and prescriptions, which it has agreed to help administer including the use of controlled drugs are recorded on the person’s MAR charts in line with established procedures.

At all times, the agency’s care staff are expected to be made aware of and responsive to the person’s condition by working in partnership with the GP community nurses and palliative care specialists involved.

Agency staff will make every effort to ensure that the person’s wishes in respect of their religious or cultural practices are fully respected.

The agency’s care staff are also expected to respect and follow any advanced care plans that the person has made. Where the person’s wishes remain unclear and they have lost the mental capacity to clarify and communicate these, the manager will make every effort to ascertain them from relatives, friends and professional who know the person. This then should enable the arrangements made to be as close as possible to what the person would probably have wished. The agency’s policy in these matters is accordingly worked out in line with the “best interests” principle of the Mental Capacity Act 2005.

Currently there is no relaxation of Deprivation of Liberty Safeguards (DoLS) associated with the coronavirus pandemic and care homes should ensure that they adhere to DoLS guidance until such time as new safeguards are in place.

The Mental Capacity (Amendment) Act 2019 received the Royal Assent on 16 May 2019 and will see the Deprivation of Liberty Safeguards (DoLS) abolished and replaced with the Liberty Protection Safeguards (LPS).

This system will apply to England and Wales only and it was announced the original implementation date for LPS of 1 October 2020 had been postponed until April 2022. The Government then announced in December 2021 the planned implementation date for LPS of April 2022 could not be met. There is no new implementation date at this time.

At the height of the Covid-19 pandemic, people having an advanced care plan (ACP) in place or being able to review existing ACPs was of high importance and remain so as we move forward post-pandemic.

Advance care planning is a voluntary process of person-centred discussion between an individual and their care providers about their preferences and priorities for their future care.

Universal Principles for Advance Care Planning (2022) stipulates there needs to be recognition, respect and support for the diverse needs of people with different faiths, cultures and circumstances.

Organisations have a responsibility to ensure they approach ACP discussions sensitively. They should ensure the person is listened to, and act jointly on what matters to the person, how conditions for honoring these can be created and maintained involving individuals, health and care system. Clear information about ACP should be available and in accessible formats and languages.

Provision of adequate support for people who use services to make informed decisions involves liaising with General Practitioners, community healthcare staff and community geriatricians and other relevant health care professionals to discuss emergency care planning and treatment in person-centred discussions.

Monitoring and Observation

The service accepts that its care staff will contribute to the care plan by making detailed observations on the person’s conditions and changes that occur when visiting.

Care staff are expected to make sure that the records of the observations or checks made match those that have been agreed as needed on the care plan.

Communication: Keeping Everyone Informed

The agency undertakes to keep everyone involved in the person’s care of changes and developments it has noted in the person’s condition.

Staff Roles and Responsibilities

The agency expects its staff to:

always maintain the person’s need for privacy and dignity
accept that each situation is an individual one and not to be treated as routine and make sure that the person feels that their wishes are being listened to and respected
respect the individual’s wishes
resolve constructively any conflicts of interest or differences of opinion with reference to the individual’s wishes
work in partnership with the person and their relatives and friends involved in the person’s care
ensure all cultural and religious preferences are observed and assisted (including secular preferences for those who are non-religious)
work in partnership with the GP and other healthcare professionals involved
attend to physical needs to ensure the person is as comfortable as possible and to help make sure that any experience of pain is being managed as effectively as possible
respond to emotional needs as well as physical needs and to spend time listening and talking to the person, as well as caring wherever appropriate
respond to the needs for support of relatives and others with a close relationship with the dying person.

Training

The care of terminally ill people are included in induction training programmes for new staff, particularly the younger staff who might not have experience of people who are dying.

Induction training involving end-of-life care is developed in relation to the All Wales Induction Framework for Health and Social Care focusing on care values and principles, and effective communication.

The service also provides or enables key staff to attend specialist training in palliative care.

The provider uses the services of local palliative care specialists to provide staff training so that all staff are competent in the care of terminally ill people.

{{org_field_name}} ensures that staff are aware of and comply with current guidance by the Health and Safety Executive on Handling the Deceased with Suspected or Confirmed Covid-19.

Responsible Person: {{org_field_registered_manager_first_name}} {{org_field_registered_manager_last_name}}

Reviewed on: {{last_update_date}}

Next Review Date: {{next_review_date}}

DW71. End-of-life Care in Domiciliary Care