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Dying with dignity

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VOL: 97, ISSUE: 33, PAGE NO: 36

Clarissa Meeres, BA, BSc, DipEcon, is assistant psychologist, South Staffordshire Healthcare NHS Trust

Fergus McKenna, RMN, is ward manager, Cannock Chase Hospital

There is a time in the progression of all untreatable and irreversible dementias when it is right for nurses to discuss palliative care and the possibility of death with patients' relatives. The loss of a relative is one of the most difficult and distressing life events, but studies have shown a relationship between the predeath experiences of the carer and postdeath reactions.

There is a time in the progression of all untreatable and irreversible dementias when it is right for nurses to discuss palliative care and the possibility of death with patients' relatives. The loss of a relative is one of the most difficult and distressing life events, but studies have shown a relationship between the predeath experiences of the carer and postdeath reactions.

Expectation of death, predeath grieving and postdeath support are all associated with positive postdeath feelings (Collins et al, 1993), and the predeath grief experienced by the relatives of people with dementia is similar to the concept of 'anticipatory grief' in other terminal illnesses, as described by Hill et al (1988). However, an important difference is that the opportunity to 'finish unfinished business' may not be available (Rando, 1986).

Families do not necessarily recognise the signs of impending death (Collins et al, 1993), so health care professionals must make relatives aware of the disease process, the stage of the patient's dementia and the fact that death may occur at any time.

Specific memories of the actual death can be vivid. Emotional satisfaction is linked to a 'good' death that takes place in appropriate surroundings with the 'right' people present (Collins et al, 1993).

In hospitals, death may become part of the everyday life of nursing. A structured policy for dealing with the bereavement process and ongoing staff training are required to ensure that health care professionals manage the events surrounding a patient's death as sensitively as possible.

A carer's support group based in our unit at Cannock Chase Hospital, Staffordshire, allows all relatives to attend meetings and encourages them to continue to do so after the death.

There are two main aspects of care for people with dementia when death may be imminent. The first is meeting the patient's palliative care needs and the second is deciding what curative interventions are necessary. Close relatives should be involved in the decision-making, both for legal and ethical reasons, and be kept informed so that they can prepare for the death.

In our unit, health care professionals usually discuss the issues surrounding aggressive interventions with relatives soon after the patient is admitted. This includes agreeing a resuscitation policy, which minimises the possibility of an unexpected emergency.

Any decision on whether to maintain or prolong life when respiratory or circulatory systems fail is enormously difficult for relatives to make and they need time to come to terms with the emotions and issues this raises.

It is important that all staff are aware of this, and that when relatives have decided which interventions they want they are recorded in the patient's notes.

When a patient's condition deteriorates to the extent that death is imminent, a number of important actions can be taken (Table 1).

Before this, a meeting is arranged between the relatives, the patient's consultant or ward doctor and the patient's primary care nurse.

If the primary care nurse is not experienced in dealing with bereavement, a more experienced nurse is also present so that the less experienced nurse can develop skills in managing the process.

The patient's condition, the possibility of imminent death and the ways in which death may occur are explained to the relatives, who are then given an opportunity to ask questions.

Dealing with the bereavement process is a skill some nurses acquire naturally. Such staff often become 'specialists' in bereavement and are more involved than others in maintaining communication and support for relatives. We provide these nurses with supervision and the opportunity to offload the emotional burden of dealing with other people's grief.

Team nursing is central to our philosophy of patient care and we aim to keep the entire team informed about individual patients so that when relatives call they always reach someone who can answer their questions.

Clear, accurate and sensitive communication between staff and relatives is vital to maintain the relatives' sense of involvement and ensure that they are aware of any changes in the patient's condition.

At this stage it is important that the patient is provided with full nursing care. Pyjamas and nightdresses are changed regularly, even if they are not soiled, and the patient's hair and personal appearance is attended to so that he or she looks as clean and fresh as possible. This shows relatives that their loved one is being cared for and regularly attended, even when they are not present.

Even the room may form part of a lasting memory of the patient's death so everything about it should be 'correct'.

Palliative care is particularly important, so nurses maintain a high degree of alertness for any sign that the patient is in pain, thirsty or uncomfortable. No one should spend the time leading up to his or her death in pain.

Times when relatives may have to leave the room or close emotional contact with the patient is disturbed are kept to a minimum. Relatives may stay day and night if they wish.

Being present at the death can be immensely important as this allays any feelings of anxiety about the exact circumstances surrounding the death. It also reduces feelings of guilt and generally contributes to the image of a 'good' death, which many people remember for a long time.

If no relative can be present, a member of the nursing staff stays with the patient during his or her final moments. Relatives often ask whether patients were on their own at the time of death and we are able to reassure them. No one should die alone.

When a death needs to be reported to an elderly, frail relative or spouse living alone, the job is given to a younger member of the family, who does so in person after being briefed by the nurses.

Relatives may be distraught immediately after the death and our nurses are prepared to be a target of this distress. They receive support and supervision if this happens.

After the death, medical formalities and nursing procedures have to take place. The patient is made to look as comfortable as possible and the nurses withdraw. Relatives can then spend as long as they wish with their loved one.

When they are ready to leave the room, they are offered the opportunity to sit quietly in another room, have a drink and unwind before going home. Again, there are no time limits. A nurse experienced in dealing with bereaved relatives is there for them to talk to and information booklets on the bereavement process are provided.

Personal effects and clothing are not mentioned at this time and relatives often return for these later. When they do, this is another opportunity to offer a listening ear, support and information.

At this point many relatives enquire about legal matters, so we ensure that all nurses are aware of the documentation required and are able to explain this clearly and sensitively. They also know when doctors will be available to complete the death certificate. Details of the opening hours of the local Register Office are also available.

If nurses have cared for patients for some time and formed close relationships with them, they are encouraged to attend the funeral. They are also given support and the opportunity to talk about their feelings after a patient's death.

We do not provide bereavement counselling for relatives, but we do provide them with information on counselling services. We see our role as allowing as dignified a death as possible for the patient and, as far as possible, involving relatives in the process of death. We achieve this in four ways:

- Keeping relatives informed on the patient's condition;

- Involving them in decisions on curative interventions;

- Allowing them to be with the patient and participate in care if they wish;

- Being available to answer questions or talk about anything that may be troubling them.

We provide as good a life as possible for the patient during the later stages of dementia and as good a death as possible. Nothing can take away the grief of losing a loved one to dementia, but we aim to ensure a healthy bereavement process.

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