End of life care to include advanced care planning
Derbyshire House holds a high accreditation for our attitude towards end-of-life care with Gold Standards Framework (GSF). The GSF promotes minimum core standards and principles of care which Derbyshire House fully supports and aims to provide naturally as part of normal every day practice to ensure and embed that people can live well before they die. For up-to-date detailed information in our End-of-Life practices, please refer to our GSF information booklet which can be found in the main reception area or garden room.
The Five Priorities of Care are:
- Decisions made and actions taken are in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
- Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- 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.
- The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with passion.
Principles of End of Life: We are committed to continuing care to those who choose to remain with us when terminally ill. We will take views of relatives and others into account although the individuals own views, where stated, are the most important. We ensure that where we offer 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. We endeavour to follow the principle that a person should be cared for in their final days as if they were in their own home. Derbyshire House makes every effort to work closely with the health services, the Community Matron and District Nurses, who provide extra care to ensure people are supported and comfortably free from pain. Each aspect of the end-of-life care is handled sensitively with the aim of ensuring people can die in a dignified, respectful manner, as free from pain as possible and in accordance with their own wishes, choices and personal preferences.
Advanced Care Planning (ACP): ACP is a process of pre-planning that is offered to all people living with us, so that appropriate care and any other provisions can be made in advance to ensure personal preferences and Future Wishes are adhered to. It is implemented in accordance with end of life or palliative care and in line with the Gold Standards Framework (GSF).
The discussions and decisions involved in ACP include identifying future risks and care and treatment that is individual.
It is standard practice for Derbyshire House to offer and include ACP (also known as Future Wishes in our Care Plans) so that we are clear what personal preferences and wishes are in advance, should they need to be implemented. Discussions are taken at a pace which a person is comfortable with and can take place from admission over a number of weeks as we understand how sensitive this subject can be. ACP discussions can also take place when it is anticipated that a person’s condition will deteriorate. We also work closely with representatives and those who hold Lasting Powers of Attorney at the time of admission, or after, to try to ascertain any Future Wishes, when they may have already lost the capacity to communicate them. The outcomes are recorded and respected. Personal preferences, choices and wishes will not only include medical interventions and pain relief. They will also focus on the finer details of what is culturally appropriate to the individual, for example, some people at the time of passing believe that opening a window releases the spirit, whilst some do not share this belief.
We will work on the basis that any individual at any time can develop, update or make changes to an advanced Care Plan/Future Wishes, either through the monthly review process or a condition change in health or well-being.
Developing an End of Life Care Plan: We are aware that people who are suffering from terminal illness or are in the last stages of their illness need total round-the-clock care. This includes emotional care and, in some cases, frequent company and reassurance.
The End-of-Life Care Plan will be put into place during the last stages of life and will contain details of any procedures or interventions to be made in light of a person’s changing condition and of any procedures or interventions that have been modified. All medication changes and prescriptions, including the use of controlled drugs are recorded on individual MAR charts and in individual Care Plans.
Staff are informed of the person’s condition and individual wishes as well as the GP and any Community Nurses or other specialists involved, ensuring that the person is in the best possible place and the appropriate care required is provided.
The home makes every effort to ensure that the individual’s wishes are up to date, communicated and fully respected.
Where the 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, friend and professionals who know. This then could enable arrangements made to be as close as possible to what the person would have wished.
Coding helps us to provide the right care for people based on needs. Coding is renewed at least monthly or on condition change and is standard practice at Derbyshire House. Coding is agreed during our weekly ward rounds with the GP, based on the needs at that time. It is standard automatic practice that GP’s provide anticipatory medication for those coded C (weeks), and more regular checks are made with the District Nurse/GP to review the needs and any procedures needed to be put in place to manage any symptoms. Those coded D (Days) it is standard practice that future wishes and preferred place of care are reviewed and all culturally appropriate needs are being met. An extra staff member may be on duty if required, solely for the purpose for the needs of this person and their family members.
UNDERSTANDING “DO NOT ATTEMPT RESUSCITATION” (DNAR)
Cardiopulmonary Resuscitation (CPR) in theory, could be attempted on every individual prior to death. However, in reality, there comes a time for some people when death is inevitable and the exercise of CPR would not be initiated on medical or ethical grounds.
There are also occasions where individuals themselves do not wish for CPR to be conducted upon them and make their feelings known through Advanced Directives.
It is essential to identify those who do not wish CPR to be attempted on them.
Derbyshire House is aware of the need for clarity in this area.
The home believes that this represents the best way to ensure that all decisions relating to resuscitation are clear, agreed by all concerned and fully documented.
“Do not attempt resuscitation” (DNAR): A DNAR decision is a clinical one, therefore the responsibility for a DNAR order lies with the individual’s Doctor or GP.
All DNAR decisions are made with reference to the requirements of the Mental Capacity Act 2005 and in full consultation with the individual, their doctor and, where appropriate, with relatives, carers and advocates.
DNAR decisions are documented on ReSPECT forms, which are completed for all individuals by the GP and can be changed at any time. A ReSPECT form is a summary plan that records recommendations to guide clinical decision making for any future emergencies. It can also be used to draw attention to the presence of ADRT and will also contain relevant aspects within the summary of preferences for treatment and care.
All DNAR decisions within the ReSPECT form are made on an individual basis, and carried out with the GP and can be changed by the individual at any time.
A DNAR decision means that should a person sustain a cardiopulmonary arrest, resuscitation will not be initiated – however, all other care and treatment appropriate is not influenced or precluded by the DNAR order
Where a DNAR order has not been made, staff will support a resuscitation attempt
All DNAR decisions will be recorded in individual Care Plans.
Should a DNAR decision be revoked, the Care Plan and the ReSPECT form DNAR decision section will be amended immediately
All DNAR decisions only come into force if a person has lost capacity and/or is unconscious
Procedure for finding someone who is not breathing
If you find someone who is not breathing you can refer to the musical note coding located in each room as a quick view of whether that person wishes to be resuscitated. Musical note colours depict DNAR status and are green for someone who wants to be resuscitated and red for those who do not want to be resuscitated.
If the person you find not breathing requires CPR you must perform this using the training that has been given and call for the assistance of another staff member to call 999 and follow their advice and get the defibrator if required and being used by a staff member who has been trained to use it.
Even if you suspect that a person has stopped breathing over 20 minutes, you should begin CPR and call 999 and explain to them approximately how long the person may have stopped breathing and only stop CPR when a person with the relevant professional authority says so. where it is no longer possible to carry out the CPR for example, tiredness, this must be communicated clearly and concisely to the emergency services on the phone and their advice taken. All incidents of CPR or unexpected collapse or death should be fully recorded and reported to the Manager who will report it to the relevant bodies required and the trustees where necessary.
Understanding Advance Decisions: Derbyshire House understands that Advance Statements refusing treatment are known as “Advance Directives” or “Advance Decisions”. The Mental Capacity Act 2005 introduced new laws about Advance Decisions to Refuse Treatment (ADRT). It places Managers under a duty to support people with impaired mental capacity so that they can make their own decisions about the health and social care that they receive. People needing such support might include those at the end of a terminal condition. The home will support the right of a person to make Advance Decisions and will respect those decisions wherever they have been legally and properly made. In this home, if the advance decision refuses life-sustaining treatment, such as CPR, it must:
- Be a clinical decision undertaken with the resident and their GP.
- Be in writing and recorded on individual ReSPECT forms.
- Be signed and witnessed.
- State clearly that the decision applied even if life is at risk.
An advance decision must relate to a specific refusal of medical treatment and can specify circumstances. It will only come into effect when the individual has lost capacity to give or refuse consent.
Individuals are entitled to decide whether they want to refuse treatment in advance but there is no obligation for them to do so and no pressure will be brought on them by the home or by others.
Monitoring and Observation: In addition to GP, District Nurse and/or other health professional’s observation, care staff’s observations will also contribute to the Care Plan as they monitor changes in a person’s condition.
The arrangements for monitoring and observing are structured by the condition of the individual during end of life when death appears imminent an extra staff member will be provided where necessary to support the family in any way they wish and/or to sit with the person throughout if family are unable to. This ensures nobody living at Derbyshire House will die alone.
Communication: Keeping Everybody Informed: We undertake to keep everybody necessary involved in changed and developments in the condition. A record is kept of all contact details required to assist communication and information passing.
Staff Roles and Responsibilities: The care plan, ReSPECT form, This Is Me booklet and Future Wishes assists in identifying roles for which staff are required and the practices and procedures that they should follow to care for each individual. Derbyshire House minimum expectations of staff are:
- Respect a person’s need for privacy and dignity whilst ensuring all religious, spiritual and culturally appropriate needs are met
- Accept each situation as an individual one and don’t treat end of life as a simple “routine”
- Work in partnership with the individual, their relatives, friends, GP and any other health professional involved.
- Attend to physical needs to ensure the person is as comfortable as possible and 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 spend time listening/talking to the individual wherever appropriate. Also respond to the needs for support of relatives and staff who have a relationship with the dying person
PROCEDURES AND PROCESSES
Attendance and Companionship: Derbyshire House accepts that the involvement of family and close friends is essential to the wellbeing of the person and encourages family members and friends to visit as they wish and their condition dictates
The home endeavours to build a relationship of trust with the individual and their family, so that we are able to remain sensitive and responsive to their needs
- Staff are expected to respond directly and promptly to requests for arrangements to be made so that they feel that their wishes and decisions are being respected
- Staff are expected to be aware and sensitive to the condition of the person at all times. For example, when carrying out personal care for someone who appears unconscious, staff must be aware that the person may still hear.
- Staff should never discuss the person’s condition with others talking about them as a third person
- Staff provide support and reassurance
Comfort: Staff are expected to make the person feel comfortable and carry out regular checks to ensure they are comfortably free from pain
Staff will, at all times, treat the people with dignity and respect and be culturally competent in helping to maintain all aspects of personal and emotional care. Individuals will not be excluded from social contact or stimulation inside or outdoors as long as they wish and are able. Namaste care is used as part of comfort for those in the final weeks or days.
Nutrition: Refreshing drinks will be regularly offered and provided, to ensure that the person consumes sufficient fluids, and does not dehydrate.
We are able to provide a diet that meets nutritional needs, which might include liquidised food, soups or food supplements
All efforts are made to provide the person with food and drinks that they enjoy or ask for.
Pain Management: The home receives medical guidance from our Community Care Team and palliative care is carried out together with them to implement a pain management plan for a terminally ill person which includes the use of the Abbey Pain Scale and ReSTORE2, which can help identify a decline in health and also determine requests for Anticipatory Medication.
Care staff are responsible for the monitoring and administration of any oral pain-relieving medication prescribed. The Community Teams or District Nurses and/or Community Matron will be responsible for any administration of intravenous or syringe type pain relief
Staff Support and Supervision: Care staff receive supervision and 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 they can discuss their feelings and experiences with other staff members. This could be during supervision and to suit staff meetings or appraisal or other arrangements can be made
Staff are encouraged to engage in, rather than avoid, awkward conversation, and to also talk naturally to the person. New staff will be given training as part of the induction process
Social Relationships: Derbyshire House will ensure that people are not isolated from interacting with others 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, and remains in contact with them to make sure they are informed of all important developments.
Relatives are offered emotional comfort and support and are given opportunities to share their fear and experiences with staff.
Should relatives wish to stay at Derbyshire House, we will provide meals and refreshments during their stay and a bed or a comfortable chair and blanket. Food, beverages and use of all facilities will be available should they wish.
The home encourages relatives who wish to become involved in caring for the dying person. Care staff will make every effort to involve them in the daily routine, for instance if a relative wishes to help with feeding they are made aware of their preferred routine and are encouraged to participate
Derbyshire House believes the impact of any death within the home becomes a shared experience for others living in the home, staff, family and friends and everyone can expect to have the same level of devoted care under those circumstances.
Hospitalisation: Derbyshire House aims to ensure that no one is admitted to hospital unnecessarily.
The home has put measures in place to assist in reducing admissions. The Needs Based Coding system helps anticipate any likely treatment. If the coding system highlights rapid condition change the GP surgery is able to organise and provide anticipatory treatment to use when necessary
The Advanced Care Planning (ACP) and ReSPECT forms which include DNAR decisions processes, also assists in the reduction of admissions. DNAR decisions should be communicated to Out of Hours (OoH’s) services by the GP through the EPACS, which is a section on SYSTM1 (the GP/Patient record system) that can be accessed by 111, along with any individual advance decision to refuse treatment (ADRT). This ensures appropriate care is provided, and also continuity of care by all providers. If emergency services are called through 999, this service may not have access to the decisions and they would therefore need to be informed and their guidance followed.
Staff use our admission avoidance flow chart for guidance.
If a person requires hospitalisation, it is normal practice for a member of staff to escort them, as we believe no person should have to go to hospital alone. However, whilst we consider this to be best practice, this is not a requirement and there may be times when sending a staff member to the hospital would put other residents at risk by leaving staff short on the floor. We will do our best to send a staff member to all emergency hospitalisations but there may be times that this would not be practicably possible. Where we are unable to escort, we will inform the family members so that they make arrangements to escort their loved one if they wish and are able to. If hospitalisation is required, we use the red bag system and this goes with each person to the hospital.
If a person remains in hospital for longer than seven days, then a member of the team will arrange a visit(s) to the hospital, where visiting is allowed, or a phone call to the ward for an update. If a person living at our home would like to visit the person/friend whilst they are in hospital this can be arranged too where appropriate and allowed.
Rapid Discharge: Our rapid discharge plan includes processes of checking:
- Has the hospital been provided with copies of all relevant paperwork within the red bag
- Has contact with the hospital/ward been made and plans for earliest discharge been discussed
- Has the person been visited on the ward by the home where visiting restrictions allow
- Have family/representatives been involved in and/or informed of communication and collaboration with hospital and are aware of rapid discharge plan
- Are all staff in the home aware of the discharge plan and/or all communication and collaboration with the hospital
- Had any/all preparations that may be required of discharge been made at the earliest convenience
- Had any/all preparations/needs that require input and support from the GP, Clinical Lead, District Nurses and/or Community Matron been discussed with them and measures put in place
- Further action needed
We will communicate with hospital staff and family to ensure that people are not left in hospital unnecessarily and are able to come back to the home as quickly as is possible. Our goal is to ensure that people die where they choose to die with the people, they want with them. With the assistance of the GP, Clinical Lead, District Nurses and the Community Matron, it is possible for us to provide good end of life care, where people are comfortable, and free from pain, therefore reducing fear of dying in hospital.
Care in Final Days: Derbyshire House supports the GSF minimum protocol for care in the final days.
Quality of care will be extended to family and staff as normal practice. Sleeping and washing facilities will be available to family members wishing to stay with the dying person. We will provide, where required, an extra member of staff on shift, wherever possible, to ensure that family are supported and that the dying person is never left alone should the family feel that they need a break and also to ensure the continuity of care to others living in the home.
Close collaboration with the GP, Clinical Lead, District Nurse/Community Matron, GP and/or other Health Professionals will continue so that the dying person can be monitored and can receive the correct pain relief at the right dosage to ensure they are comfortably free from pain.
Referral: Due to our specific referral criteria, the majority of referrals that the home requires can be made by the home and also accessed through the Clinical Lead, Community Matron, District Nursing Team or General Practitioner. If Derbyshire House is concerned about a person’s health deteriorating, they will take their concerns to a member of the GP or the District Nursing Team or Community Matron who will then arrange or suggest a suitable referral to a specialist care team, such as SALT. The District Nursing Team can also arrange for a referral to a Macmillan Cancer Support Nurse, these Nurses can come to the home during final days to sit with the person, should the family/friends need a break.
Verification of Death: Derbyshire House is able to verify an expected death in some circumstances. However, we collaborate with GP’s and District Nursing Teams to ensure that verification is carried out relevantly. if the death is unexpected, a GP will have to verify.
Relatives and/or friends of the deceased may be very distressed and Staff, GPs or District Nurses attending the death will always offer support in these circumstances. Bereaved families may also require guidance on the procedures following a death, particularly if the death was unexpected, which can be given by the GP or by the home.
Death Certificate: A death certificate may be issued by a doctor who had provided care during the last illness and who has seen the deceased within 14 days of death or after death. They should be confident about the cause of death.
Expected Death: The following expected death flowchart can be used for guidance throughout:
Aftercare: Derbyshire House encourages a family atmosphere so we are fully aware and prepared that those giving care especially in the final stages could be affected by bereavement.
Emotional support is offered through discussion in the first instance and if more support is needed, bereavement counselling can be sourced. The home will also help arrange relevant appointments if required and for our staff members, we can help arrange shift cover at work so that they are able to attend counselling sessions. Practical support is available from the home if required in a number of ways, this can be anything from assisting in returning or arranging the return of medical equipment, disposing of any unwanted items of furnishings right down to assisting with funeral arrangements. When a person dies, staff from the home will attend the funeral, wherever practicably possible, l to pay their respects and pass on respects for and on behalf of the home. Derbyshire House staff considers this as home, therefore when someone who lives at the home dies, it is only natural that the family should be given the opportunity to hold their wake here if they wish.
We understand that losing a loved one can be a very stressful time, and therefore we offer an aftercare service, tailored to individual needs, but organised and implemented by the home to take some of the pressure off the family.
Everyone who lives at Derbyshire House becomes part of our family and like any other family we like to commemorate their memory in a number of unique ways.
Review of Issues Raised by a Person’s Death: After a person has died, we carry out a Significant Events Analysis, a Five Priorities of Care reflection form, as well as an After-Death Analysis to review our practice and the process followed with those involved. 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 any procedures in the future. All staff are involved in this process to see if there is anything that could be improved upon.
For all up to date and more detailed information please see the GSF information booklet.
A review also takes place within meetings, this enables Derbyshire House along with the GP and Community Matron and input from all the relevant external health professionals to see if everything that could be done has been.