End-of-life Care in Care Homes (Scotland) Policy

Policy Statement

This policy set outs the values, principles and practices underpinning {{org_field_name}}’s approach to the care of people who are terminally ill and whose death may be imminent. It is written in line with the values, principles and standards described in My Life, My Support (2017), notably 1.7, which states, “I am supported to discuss significant changes in my life, including death or dying and this is handled sensitively.”

It should be used with reference to the home’s policy and procedures in the event of the death of a person using services.

The Covid-19 pandemic raised specific challenges for people using services in are homes, their families and the staff with regard to end-of-life care provision. People using care home services were particularly vulnerable to the infection and therefore outbreaks in care homes proved devastating.

The Covid-19 vaccination and booster programme has been successful protecting this vulnerable group and seen a reduction of mortality in older people caused by Covid-19. {{org_field_name}} has supported those aged 75 years and older living in care home setting and those with weakened immune systems to receive a booster in spring 2023.

Restrictions on visiting and social isolation or shielding resulted in particular issues for those at the end of life and for people using services with dementia. In March 2022, changes to the national Health and Social Care Standards for Scotland’s adult care homes will position the so called “Anne’s Law” into practical effect while legislation is being developed. Anne’s Law aims to ensure people who live in adult care homes have rights to see and receive support from those significant to them.

Two new Standards outline the expectation that those living in care homes should have the right to see someone who is important to them, even during a Covid-19 outbreak, and be able to name a person or persons who may directly participate in meeting their care needs.

These Standards should be reflected by care homes in their policies, and the Care Inspectorate will consider whether they are being met when registering, inspecting and supporting homes. See New Health and Social Care Standards for Care Homes for more information.

Current guidance will be followed by {{org_field_name}}: Health and Safety Executive’s guidance on Handling the Deceased with Suspected or Confirmed Covid-19.

{{org_field_name}} applies the following principles when providing end-of-life care.

People using care home services should:

be confident that any death in {{org_field_name}} will be handled with dignity, sensitivity and discretion
be fully supported by staff if they lose someone close to them by having the opportunity to say goodbye or go to their funeral if they want
be able to say what they want to happen and who should be informed about their physical, personal and spiritual care in dying, death and funeral arrangements; they should be confident that their wishes will be carried out
be able to discuss with staff and others their preferred place of death and expect their wishes to be respected
expect their end-of-life phase to be as free of pain as possible
be able to choose whether or not they have people with them when they die and who they should be; staff should make every effort to ensure this happens
expect the home to have or arrange for people to stay with them during their last few days and hours, if that is sought
have their death treated with dignity, sensitivity and respect in line with their expressed social, cultural and religious preferences
expect after their death that their bereaved relatives, friends and carers can spend as much time with them as they need to
expect the home to support their relatives and friends through the formal processes relating to death, such as arrangements about belongings.

Principles of End-of-life Care

The home is committed to continuing the care of people using services who choose to remain there when terminally ill or in a terminal condition, unless there are good reasons for seeking an alternative. These are determined by the nature of the condition or illness, the home’s capacity to provide or procure the necessary care and support, and medical guidance and advice.

The views of relatives are also considered, though the person’s own views, where stated, are the most important. The home ensures that where it offers terminal care and support, the individual and those close to them are treated with respect and dignity and their rights to spend time alone with one another are fully respected. The home thus tries to follow the principle that a person should be cared for in their final days as if they were in their own home if that is their wish.

The home makes every effort to provide and procure all the care and support available from health and local services to make the person feel comfortable, safe and as free from as much pain and discomfort as possible. This includes where appropriate the involvement of community healthcare staff and palliative care practitioners and services and provision of counselling and other forms of psychological support.

{{org_field_name}} recognises that people undergoing palliative care possibly involving specialist community medical and nursing staff require specific personal plans. These end-of-life plans are additional to the general personal plan and are used in association with established clinical procedures and recording tools.

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.

The home is aware of Universal Principles for Advance Care Planning (2022), ensuring all involved in ACP conversations, at individual, organisational and system level deal with conversations sensitively. The home ensures the person is listened to, and acts jointly on what matters to the person, discusses how conditions for honouring these can be created and maintained involving individuals, health and care system.

Clear information about ACP will be made available and in accessible formats and languages

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

Each aspect of end-of-life care is handled sensitively with the aim of ensuring people can die in a dignified, respectful manner, as free from pain and distress as possible and in line with their own wishes.

Developing an End-of-life Personal Plan

{{org_field_name}} recognises that people in the last stages of a terminal illness need total care, including emotional care and frequent attention. It achieves this by drawing up an end-of-life personal plan, which is based on a detailed needs assessment.

To draw up the personal plan it receives the help of the medical team involved, which makes the necessary decisions and recommendations which can be followed up in the plan. Any changes to the person’s medication regime as a result of any changes to their condition authorised by the medical practitioner are fully recorded and acted upon.

The end-of-life personal 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 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. All medication and prescriptions, including the use of controlled drugs are recorded on the person’s MAR charts in line with established procedures.

At all times, care staff are made aware of the person’s condition and are in constant contact with the person’s GP and community nurses who may be involved to ensure that the person is in the best possible place and to provide the care required.

The home makes every effort to ensure that the person’s wishes in respect of their religious or cultural practices are fully respected. In most instances, the home is aware of these as they will have been recorded previously in their personal plan or as an advanced directive.

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 professionals 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 home’s policy in these matters is accordingly worked out in line with the “best interests” principle of the mental capacity legislation.

Currently there is no relaxation of Deprivation of Liberty Safeguards (DoLS). However, currently, DoLS orders are not automatically recognised under Scots law. This means that non-Scottish placing local authorities need to petition the Court of Session in Scotland to get such recognition in each individual case.

Monitoring and Observation

Care staff as well as nursing staff will contribute to the personal plan by making detailed observations on the person’s conditions and changes that occur.

The arrangements for monitoring and observing the person’s condition are carefully structured, eg hourly, two-hourly, etc.

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 personal plan.

Communication: Keeping Everyone Informed

The home undertakes to keep everyone involved in the person’s care of changes and developments in the person’s condition. A record is kept of all their contact details to assist communication and information passing, eg of next of kin, other family members, friends, GP, specialist medical staff from the Palliative Care team, key worker and other care staff involved, religious/spiritual advisors such as priest, rabbi, imam, social worker/care manager and other representatives such as advocate and legal guardian.

Staff Roles and Responsibilities

The end-of-life care plan identifies staff roles and responsibilities and the practices and procedures that staff should follow. Staff are expected 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 user and their relatives and friends
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 — with resources to achieve this made available
respond to emotional 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 staff who had a close relationship with the dying person.

Procedures and Processes

Attendance and companionship

The home accepts that the involvement of family and close friends is essential to the wellbeing of the person using services. It encourages close family members to remain with the person and friends to visit as the person wishes and is able to see them. However, during the coronavirus pandemic visiting is likely to be prohibited. Where face-to-face visits are not possible, use of video conferencing software on smartphones, tablets and portable computers may be possible.

Where applicable, the home is able to provide overnight accommodation and hospitality at a small cost to visitors who might require this.

The home encourages its staff to build a relationship of trust with the person using services and family members so that they remain sensitive and responsive to the needs of the person using services.

Staff are expected to spend time listening and talking to the person as well as caring. They are expected to respond directly and promptly to requests for arrangements to be made so that the person feels that their wishes and decisions are respected.

Staff are always expected to be aware and sensitive of what is happening. For example, when caring for someone who appears unconscious, staff are instructed to be aware that the person could still hear what is being said to and about them. Accordingly, they should be taking care taken not to discuss the person’s condition within the room.

Comfort

Care staff (and nursing staff where used) make the person as comfortable as possible and make regular checks to make sure they remain comfortable and free of pain.

Care staff continue to treat the person with dignity and respect and help to maintain all aspects of the person’s personal day-to-day care such as washing, grooming, mouth care, etc as directed by the person’s personal plan.

Care staff adopt all procedures to risk assess, monitor and treat pressure sores, tissue viability, oral hygiene and dehydration.

Nutrition

Care staff regularly provide refreshing drinks, mouth swabs and fluids to ensure that the person consumes enough fluid, does not feel thirsty and does not dehydrate.

Care is taken to provide a diet that meets the person’s nutritional needs, which might include liquidised food, soups and food supplements. Where food has to be provided through peg feeds, the home ensures it receives full medical guidance on the protocols and procedures it is expected to follow and advice from a qualified nutritionist.

All efforts are made to provide the person with food and drinks that they enjoy and ask for.

Pain and symptom management

The home receives full medical guidance, including from palliative care specialist teams to implement a pain management plan for every terminally ill person.

Care staff responsible for the monitoring and administration of any pain-relieving medication receive training and supervision to ensure that they are competent to follow these.

Care home staff are likely to have in-depth knowledge of people using their services, being able to recognise deterioration in their condition. Expertise in supporting people with cognitive impairment and behavioural symptoms and the provision in skilled in end-of-life care which is fundamental.

Care homes 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.

Staff support and supervision

Care staff closely involved in the implementation of a personal plan for a terminally ill person, receive supervision and good emotional support to help them provide a high standard of care. The home works on the basis that care staff involved in these situations should feel that they can discuss their feelings and experiences with other staff members in, eg supervision and staff meetings.

Care staff receive training and supervision in palliative care processes so that they can respond to people’s feelings and thoughts, which may be connected directly or indirectly to their impending death.

Staff are expected to engage in rather than to avoid awkward conversation, also to talk naturally to the person following their agenda.

Post-pandemic, the impact on the mental health on care home staff has had enduring effects. For managers coping with this complex situation, acknowledging issues staff face whilst trying to minimise risks inherent in dealing continue to present ongoing challenges.

Support available includes:

1:1 mental health support 24 hours a day: Text FRONTLINE to 85258 for a text chat or calling 116 123 for a phone conversation
bereavement support can be contacted online or by phoning free confidential bereavement support line (Hospice UK).

For managers coping with this complex situation, acknowledging issues staff face whilst trying to minimise risks inherent in dealing with such the pandemic will provide ongoing challenges.

Multi-professional support networks may help to support care home staff through this. Some local health and social care systems have set up local systems to try to support care home providers and staff.

Social relationships

The home ensures that the person using services is not isolated from interacting with other people within the home unless it is their wish to be alone.

The home encourages relatives and friends to visit as often as possible and at any time. It remains in constant contact with them to make sure they are informed of all important developments.

Involving relatives

Relatives are offered emotional comfort and support and are given opportunities to share their fears and experiences with caring staff. This helps both staff and relatives come to terms with the situation.

Under usual circumstances, relatives are offered meals and refreshments if they are sitting with the person. The home also offers accommodation during the night if the relative wishes to stay with the person or a comfortable chair and blanket if that is their requirement.

The home encourages relatives who wish to become involved in caring for the dying person. Care staff make every effort to involve them in the daily routine, eg if a relative wishes to help feed the person using services or help them to bed for the night, the relative is made aware of the person’s normal routine and is encouraged to participate.

The home accepts the idea that other people using services may wish to share in the companionship of the dying person, and considers it is important that they are not excluded.

The home considers that it is essential for other people using services to realise that the impact of any death within the home becomes a shared experience and everyone can expect to have the same level of devoted care under those circumstances.

Relatives are provided with information about bereavement support as needed.

Review of Issues Raised by the Death of a Person Using Services

After a person has died after having been cared for under an end-of-life personal plan, the home reviews its practice and the process followed with those involved (staff team, other professionals and relatives). The purpose of the review is to assess if as much was done as possible to ensure that the process was managed as well as possible and to consider any improvements that could be made to the procedures.

Training

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

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

The home 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 using services.

All staff will be made aware of current guidance: Health and Safety Executive’s guidance 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}}

SCH73. End-of-life Care in Care Homes