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

Section 2: Three Specific Areas of Importance

The report More Care, Less Pathway highlighted concerns about cases of inadequate care in the last days and hours of life for some people and families in England. Most of these cases were chiefly related to three issues. In providing good care in the last days and hours of life it is very important therefore to give these specific issues careful consideration:

1. Nutrition and hydration in the last days and hours of life

2. Recognising the uncertainty of a diagnosis of dying

3. Communication with people and families and between staff

These issues have already been mentioned in the previous section. Further brief information is provided below which is designed to reinforce key messages relating to these three areas.

2.1 Hydration and/or Nutrition

Those who are able to eat and/or drink (including thickened fluids) should be supported to do so, unless they choose not to. They should be monitored for signs of aspiration/choking or distress.

Good mouth care remains important during the last days and hours of life.

Decisions about the use and/or discontinuation of artificial hydration (i.e. drips and subcutaneous injections) must be based on consideration of the needs and circumstances of the particular individual person. Different people may have different needs (and these needs may change over time) and so there is no simple default which can be adopted. The best interests of the person should always be paramount.

The reasons for decisions and/or changes should be promptly communicated and carefully explained to family and carers. For example, where a drip is not started or is withdrawn because fluid is building up in the lungs of the person, it is important to explain carefully to the family that, as the process of dying continues, the body does not need the same amount of fluid and usually cannot cope with extra fluids from a drip. The family should be supported to understand that fluid from a drip can start to build up in the body including the lungs and make breathlessness worse, which is distressing for the person. Decisions to start or continue artificial hydration in the last days and hours of life must always be communicated with an acknowledgement that it will be reviewed and discontinued if it causes problems for the person.

2.2 Recognising the uncertainty of a diagnosis of dying

Diagnosing dying can involve an element of uncertainty. Whether or not a person is dying, and also how long it may be before they die, can be difficult to predict accurately, reliably and consistently. This uncertainty should be recognised by staff and should inform how care is provided.

Sometimes it may be uncertain whether an intervention aimed at reversing a deterioration in a person's condition may work. Depending on the wishes and preferences of the individual person, it may be appropriate to continue with some treatment interventions, recognising that the person may die if there is no response to treatment, whilst at the same time addressing any symptoms (e.g. pain, breathlessness) as well as psychological, spiritual and social needs.

It is important that communication with the person and their family includes open discussion of this uncertainty and clear acknowledgement by all of the risks associated with initiating or continuing with interventions aimed at reversing deterioration. Risks such as pain, side-effects or missing the opportunity to die in the preferred place of care must be explained in the context of this uncertainty.

Ongoing monitoring of a person's condition should take place. The care provided for the person should reflect their changing needs, based on regular assessment and team discussion.

2.3 Communication with people and families and between staff

Sensitive communication should take place with the person (where possible), family and those close to the person. This communication should include the person's condition, expectations relating to how their condition is likely to change (including the likelihood of their dying), the wishes of the person and their family (including preferred place of death), and the agreed goals of care that will be provided.

It may be helpful to make the family aware of certain physical signs that may occur as the person deteriorates and signs that can indicate death is very imminent. Family members who wish to be present at the time of death must be identified and enabled to attend if possible. However, it is important to emphasise to the family that sometimes death can happen without any further warning.

Communication between staff about the person's changing condition and management plan at any transition or handover of care between teams is essential. In addition to ensuring continuity of care, such communication also allows staff to provide up to date information to the person (where possible) and family.