Caring for people in the last days and hours of life - Guidance

Section 1: Principles

Adhering to the principles below will support staff in the provision of good care for people in the last days and hours of life. The principles highlight essential areas of care for teams to address when caring for dying people and those close to them.

For each of the four principles, this document provides a rationale explaining why it is important, and gives examples (but not a definitive list) of some steps that can be taken to facilitate good care in the last days and hours of life.

Principle 1: Informative, timely and sensitive communication is an essential component of each individual person's care.

Sensitive communication must take place with the person (where possible), family, any welfare attorney and those close to the person. This communication should include the person's condition, expectations relating to how their condition is likely to change, the wishes of the person and their family including preferred place of death, and agreed goals^[ii] for the care that will be provided. This communication must acknowledge any uncertainties that may be involved in predicting what is likely to happen and should reassure families that regular review will form a core part of the care provided. Significant changes in the person's condition should be communicated as quickly as possible. Communication between staff about the person's changing condition and management plan at any transition or handover of care between teams is essential.

Rationale:

When someone is unwell, those close to that person will want to know what is happening - so they can provide appropriate help and support to that person and to others affected by the person's illness, and so they can prepare for what is likely to happen next. Professionals caring for the person will want to find out about the person's wishes and preferences from those close to the person if the person is no longer able to communicate about these. Good communication between health and social care professionals is key to ensuring that any changes to a person's condition are recognised and responded to by the staff with current responsibility for the person's care.

Examples of steps that should be taken and documented to support principle 1:

• Sensitive conversations should be undertaken with the person (where possible) and family that include psychological support, and capturing the person's and family wishes, including preferred place of death. These must include a sensitive and informative explanation about the individual person's needs relating to artificial nutrition/fluids (by drip or feeding tube) as they approach the end of their life, and how these will be addressed. This is distinct from food and drinks which the person will be supported to take as able and wanted. (See also section 2.1).
• The person (where possible) and family should know who is the lead clinician responsible for the person's care. This should be a named person at senior level.
• The family should be made aware of arrangements for contacting the team providing care.
• A clear and structured approach should be used in any communication between teams if the person is transferred from one place of care to another. The Situation Background Assessment Recommendation (SBAR) communication tool^[iii] is one example of such an approach.

Principle 2: Significant decisions about a person's care, including diagnosing dying, are made on the basis of multi-disciplinary discussion.

Agreement that a person's death is expected within hours to days must be based on a multi-disciplinary discussion about the person's condition which recognises that diagnosing dying involves an element of uncertainty. Responsibility for decisions reached is carried by the senior clinician responsible for the care of the person.

Rationale:

Diagnosing dying can be highly complex, and the perspectives of the different professionals involved in the person's care are essential to ensure that a person is accurately identified as being in the last days to hours of their life. Making this diagnosis will result in not continuing any medical interventions that are inappropriate. The circumstances, care needs and wishes of each individual person need to be considered in deciding which interventions are inappropriate. This consideration should include the balance of burden and benefit to the person of each intervention and the contribution of each intervention to the overall goals of care. The focus of care will shift towards interventions that keep the person comfortable. Identifying that a person may be in the last days to hours of life also allows the team to focus on any preferred place of death identified by the person and begin rapid plans to achieve this aim if appropriate and possible. Team discussion enables all members of the team to understand the reasons for the change in focus of care, and to sensitively and informatively communicate this to the family. It is also essential that all members of the team recognise that diagnosing dying involves an element of uncertainty, so regular ongoing monitoring of a person's changing condition and needs should continue.

Examples of steps that should be taken and documented to support principle 2:

• A plan for managing the person's condition should be made. This should include a record of decisions made by the multi-disciplinary team, including explanation of reasons for a diagnosis of dying, and any decisions to stop or not begin medical interventions which are considered to be of no benefit to the person.

Principle 3: Each individual person's physical, psychological, social and spiritual needs are recognised and addressed as far as is possible.

People who are dying must be cared for with respect and dignity with their needs anticipated and managed by competent staff. Symptom management is a priority for staff when caring for a dying person and there should be ongoing assessment, review and care planning relating to a person's needs in the four domains - physical, psychological, social and spiritual.

Rationale:

The needs of the person must always be the prime consideration when planning and providing care, and this applies equally to the last days and hours of life as to other times:

'You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.' Dame Cicely Saunders, Founder of the Modern Hospice Movement.

People have more needs than their physical needs.

Examples of steps that should be taken and documented to support principle 3:

• Agreed individualised goals of care should be documented and reviewed at least daily.
• The person's preferred place of care should be identified and achieved if possible.
• The outcome of any ward round or multi-disciplinary discussion should be clearly documented in the case record.
• Key symptoms such as: pain; agitation; breathlessness; nausea & vomiting; and respiratory tract secretions, should be assessed and any intervention documented in the case record.
• When symptoms are not controlled and are resistant to interventions then help should be sought from specialist palliative care.
• Individual assessment regarding nutrition/fluids should be clearly documented (see also section 2.1 of this document).
• The outcome of any intervention, and of any subsequent action should the intervention fail to meet a person's needs, should be clearly documented in the case record.
• The resuscitation status of the person should be reviewed, so that it is clear what should happen when death / cardiac arrest occurs (see national Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy). For a person who is recognised to be imminently dying in days or hours, an explicit discussion about the fact that cardiopulmonary resuscitation will not be attempted when their heart stops may risk causing unnecessary distress to them and/or their family and can seem inappropriate and irrelevant to them. Communication should focus on ensuring that the family are aware that death is expected in days or hours and that even when a person is in their last days, death can sometimes happen more suddenly than expected. Families should be reassured that whether the death happens gradually and predictably or with a very sudden deterioration the person's comfort and dignity will be the priorities. They should know that staff will communicate to ensure that the right care happens and that unhelpful or potentially harmful treatment is avoided whenever the person dies.
• Flexible visiting should be made available to the person's family and friends.
• Any outstanding psychological and social issues causing distress for the person and their family should be identified and addressed where possible.
• The person's religious and/or spiritual needs must be identified and contact made with relevant individuals who may be in a position to support the person and family if they wish.
• The person should be treated with respect and dignity whilst last offices are undertaken (where relevant).

Principle 4: Consideration is given to the wellbeing of relatives or carers attending the person.

It is important to recognise that the last days and hours of a loved one's life will be a distressing time for family members and others who are close to the person. Staff should recognise and respect this, both before and after a person has died, and support families accordingly.

Rationale:

Bereavement care is an integral part of good care, and is relevant both before and following the death of a person. Lasting memories of what happened around the time of death can stay with those who have been bereaved for many years and can support or hinder them in their adjustment to the death. Preparing people to face the approaching death of a loved one will help them to cope after the death has occurred. When a person dies, the care does not end and that continuing duty of care should be recognised. Practical advice and support is also important in this process.^[iv]

Examples of steps that should be taken and documented to support principle 4:

• Staff should listen and respond to worries and fears.
• Supportive conversations with relatives and/or carers before and after the death of the person should take place, and information provided explaining the next steps.
• What is written on the death certificate should be explained when it is given to the family, answering any questions and checking for understanding.
• Bereavement information packs should be provided.