A Better Home Life - A code of good practice for residential and nursing home care - Centre for Policy on Ageing.
As important to residents as the quality of their lives while
they are living in the home will be the way in which they are
cared for during the process of dying. This means that their physical
and emotional needs should be met, their comfort and well-being
attended to and their wishes respected. Pain and distress should
be controlled and the privacy and dignity of a resident who is
dying should at all times be maintained.
The fact that most residents die in the homes they are living
in rather than returning to their own homes or being moved into
hospital does not mean that dying and death should be routine
and commonplace. The impact of death on the community of residents
will be significant and continuing and it is important to ensure
that opportunities are available for them to come to terms with
issues of life and death in the way that each individual finds
best. This should be done by ensuring that opportunities are provided
for meditation and reflection, for contact with local religious
and spiritual leaders and that there is an openness and willingness
on the part of staff and others involved in the home to talk about
dying and death, and about those who have recently died.
10.2.1 Policies and procedures
The issues around dying and death are very sensitive. All homes
should aim to have clearly understood operational policies which
deal with quality of life before death, planning in anticipation
of death and the practical and legal requirements following the
death of a resident.
Consideration should be given to:
Policies once framed should be clearly expressed in information
made available to residents and their families and friends when
they first come into the home.
Some people will be clear about their preferences with regard
to care when they are dying and the formalities to be observed
after their death. They may be very ready to discuss it with those
closest to them and with staff. In other cases, people may be
more reluctant to broach the subject, or have it broached with
them. Staff should be alert to occasions when individuals may
reveal their thoughts and preferences unexpectedly so that they
can make use of this when the time arises.
However it is done, the process of talking to residents about
their death is a delicate one which should be done sensitively
and with compassion. It may be very time-consuming.
10.4.1 Information about the resident
Where possible the home, perhaps in conjunction with relatives
or friends, should assemble information about the following, to
be made use of at the time of the death of a resident:
Information of this sort, once gathered, should be confirmed periodically
and always observed at the appropriate time.
10.4.2 Financial affairs, wills and next of kin instructions
Everyone should be encouraged to make a will. Help can be obtained
from the local law society or citizens advice bureau. The home,
managers and staff should have no involvement in residents' financial
affairs or their wills other than enabling them to receive advice
and help from outside sources. These matters should be handled
by relatives, a solicitor, an appointee, an attorney or the Court
of Protection, Court of Session or the High Court. The resident
may have completed a next of kin instruction form or left other
written instructions. Wherever possible, the resident's wishes
should be respected and carried out.
10.4.3 Living wills, advance directives
A living will or an advance directive is a form of 'anticipated'
consent. Someone who is rational and competent to make decisions
makes a written statement about what they would like to happen
if he or she becomes seriously ill and for some reason can no
longer consent to or refuse treatment. This usually refers to
circumstances such as brain damage or dementia. The statement
usually expresses a wish that his or her life should not be artificially
prolonged by medical intervention.
If residents wish to make an advance directive, they should be
able to do so and to receive appropriate advice. Although not
legal documents, advance directives should be honoured whenever
possible. It should be noted that although an enduring power of
attorney extends the power of an attorney to act when the person
who made the arrangement is no longer competent to do so, the
legislation specifically excludes matters of consent to or refusal
of medical treatment.
Some people may express thoughts about dying, in particular their
hope for a peaceful, pain-free death or their fear of death and
their concerns for those left behind. Those who are in the position
of providing care and support should do everything they can to
calm these fears and attend to these concerns. Staff should adopt
an approach which is honest and open about the facts of illness
and death should the individual ask them.
In every home there should be particular members of staff with
experience and training in looking after people who are dying
who can advise other members of staff. In nursing homes, there
should be nursing staff with appropriate skills in palliative
care. All care staff should receive some training in looking after
people who are dying and be aware of their physical and emotional
needs. They should only act within their competence and know when
to call upon others.
10.5.1 Care and comfort
It is essential that a dying person receives all the care and
comfort that is required. Particular attention should be paid
to keeping the person comfortable and responding to any requests.
This may involve moving the person's position regularly (sitting
up or lying down), keeping the person clean and cool, paying special
attention to the person's mouth and giving regular drinks, and
helping him or her to use the toilet. Additional staff may be
required and night staff should be fully involved to make sure
that care is given constantly throughout the night. An adjustable
bed or ripple mattress may be helpful, and procedures such as
the insertion of a catheter may be required from trained staff.
Expert advice on pain control and management should be sought
for all residents who need it. Medical practitioners, community
nurses or specialist nurses such as Macmillan or Marie Curie nurses
can provide advice and assistance. Any painkilling or respiratory
drugs should be given only under the supervision of a doctor.
It is usually considered good practice that a person close to
death should not be left alone, although any wish to be alone
should be respected. Relatives and friends may wish to be involved,
but if there are none, staff such as key workers (where they exist)
have a special role to play. Other residents and ancillary staff
may wish to spend time with the dying person and this should be
respected if the dying person wishes it.
Above all, at all times, the privacy and dignity of the dying
person should be preserved. Attending to the physical needs of
the person washing, bodily functions, feeding should be done
in private. Staff should not assume that the person cannot hear
what is being said so they should never talk about the
individual when they are in his or her presence.
Residents should be able to die in their own beds in their own
rooms, surrounded by familiar people and possessions. Any additional
care required should be brought into the room aiming to preserve
as homelike and non-clinical environment as possible. Wherever
possible, residents should not have to move away from the home
to die (unless it is essential for them to go into hospital).
Neither should there be a 'sick room' or 'special care unit' to
which people are moved during their last days since this quickly
becomes associated in residents' minds as 'the end of the road'.
Following death, the person's body should not be moved from his
or her own room to another part of the home before being taken
away by the undertaker, nor taken away from the home in an undignified
manner.
10.6.1 Shared rooms
Complications arise if the person who is dying is in a shared
room (the position is different for couples or close friends).
There can be little doubt that it is easier to provide the nursing
and personal care needed by the dying resident with dignity and
in privacy in a single room and without the presence of another
resident. The impact of a succession of deaths for someone living
in a shared room would be intolerable. Residents in a room with
a dying fellow resident or where a death has occurred should if
possible be offered the option of a move.
Homes should make themselves aware of the care and services which
local hospices have to offer. Many have outreach services and
are able to offer help in a home without the resident having to
be admitted to the hospice.
Where the person is in extreme pain or has other complications,
it may be better for him or her to be looked after in a hospice
or a hospital. Such decisions should only be made after consultation
with the person, any relatives and on medical advice. Any wishes
of the resident, or advance directives, should be respected if
possible. The resident should also be able to return to his or
her own home if possible and if he or she so wishes.
Relatives may wish to be with their dying relative and every encouragement
and opportunity should be made for them to do so if this is known
to be in accordance with the dying person's wishes. Space and
a quiet room should be available for relatives to sit, collect
their thoughts and grieve. Relatives may wish to stay in the home.
This could be either in the resident's room, in separate guest
accommodation or through a temporary arrangement. Meals, refreshments
and other facilities should be made available. This hospitality
should be extended to relatives whether they have been regular
visitors or not.
Some relatives may wish to be fully involved in the care of their
resident while others may just wish to be close by. Staff should
ask about relatives' wishes and facilitate them.
The size and nature of a home will to a certain extent dictate
how the other residents are involved. In general they should be
kept informed of someone's impending death and be encouraged to
visit him or her if they so wish. Cultural or religious practices
may be appropriate such as prayers, vigils, playing favourite
music or welcoming relatives. The extent to which this happens
in a corporate way will depend on custom and practice within the
home and how far it accords with the dying person's wishes.
All staff who have had any involvement with the dying resident
and this includes managerial and ancillary staff as much as it
does nursing and care staff should be kept informed when someone
is dying. Those who wish should be given time to spend with the
dying resident. This is one way of ensuring that there is always
someone present. Support should be given to staff who have been
closely involved with the resident and their emotional needs should
be recognised and catered for, particularly in the case of staff
who are witnessing death for the first time.
All the necessary procedures in terms of washing, dressing and
laying out the body should be undertaken sensitively and with
dignity. All appropriate cultural or religious observances should
be rigorously adhered to.
10.11.1 Inform next of kin
If the next of kin or those most closely involved were not present
at the time of death, it is the responsibility of the manager
to inform them as soon as possible that their relative has died.
10.11.2 Formal notifications and documentation
Depending on who is responsible for making the arrangements, the
manager should do what is necessary or give whatever help is required
to support the relatives. Whatever the position the home is likely
to have a central role.
Things to do will include:
The manager should also inform the registration authority and
follow any other agreed organisational procedures.
10.11.3 Announcing a death
News of a resident's death should be announced in a dignified
and gentle way. It may be best to announce it quietly to individuals
or staff groups to begin with but some more public announcement
may also be appropriate in due course. Some people may find this
public recognition comforting. It should never be assumed that
people with dementia do not understand when someone has died.
Some of the following possibilities might be appropriate:
Residents and staff should be able and helped to attend the funeral
or other ceremony if they wish. Transport should be arranged and
staff rotas should be adjusted either to provide escorts for residents
or so that staff can attend in their own right. It may also be
appropriate for the funeral cortege to leave from the home, or
for it to pass the home during its journey so that residents unable
to attend the funeral can pay their last respects. Depending on
relatives' wishes, it may be possible for the home to offer refreshments
to those who have attended the funeral so that the whole of the
resident group can be involved. Alternative space and activities
should be provided for residents who do not wish to be involved.
10.1 Introduction
10.2 The death of people living in residential care
10.3 Expressed wishes of the resident
10.4 Planning ahead
10.5 Dying
10.6 Place of dying
10.7 Hospices and hospitals
10.8 Relatives' involvement
10.9 Other residents
10.10 Staff involvement
10.11 Death
10.12 Funeral