Clinical review

ABC of palliative care

Bereavement
Frances Sheldon

Bereavement is a universal human experience and potentially

dangerous to health. It is associated with a high mortality, and
up to a third of bereaved people develop a depressive illness.
Help targeted at those most at risk has been shown to be
effective and to make the most efficient use of scarce resources.
When a death is anticipated, preparation for bereavement can
be made, and this can also improve outcome.

The process of grief

Grief has been described in terms of stages or tasks, but all
writers emphasise that it is not a neat and ordered process but
rather overlapping phases of a mixture of emotions and
responses.
A sense of shock, disbelief, and denial may occur even when
death is expected, but these are likely to last longer and be more
“The deathbed of Madame Bovary” by Albert-Auguste Fourie (b 1854)
intense with an unexpected death.
During the acute distress that usually follows, bereaved
people often experience physical symptoms, which may be due
to anxiety or may mimic the symptoms of the deceased. For Stages of grief
some, there may be questioning of previously deeply held
Initial shock
beliefs, while others find great support from their faith, the
Common emotions and experiences—Numbness, disbelief, relief
rituals associated with it, and the social contact with others of a Task—Accept the reality of the loss
like mind, which religious affiliation often brings.
Pangs of grief
In time the great majority of bereaved people gradually Common emotions and experiences—Sadness, anger, guilt, feelings of
re-engage with life and adjust to their situation. However, family vulnerability and anxiety, regret, insomnia, social withdrawal,
events and anniversaries may sometimes reawaken painful transient auditory and visual hallucinations of the dead person,
memories and feelings—in this sense grief never really ends. restlessness, searching behaviour
A crucial factor is the meaning of the loss for the bereaved Task—Experience the pain of grief
person, and the painful search for understanding of why the Despair
death occurred is another common feature of bereavement. Common emotions and experiences—Loss of meaning and direction in life
Task—Adjust to an environment in which the deceased is missing
Throughout the period of bereavement bereaved people may
oscillate between concentrating on the pain of the loss and Adjustment
Common emotions and experiences—Develop new relationships or
distracting themselves through work or planning for the future.
interests
Task—Emotionally relocate the deceased to an important but not
central place in bereaved person’s life and move on
Factors associated with poor outcome
Research has identified several factors that increase the risk of
poor outcome. The relationship with the deceased person is
very important: an ambivalent or dependent relationship is Risk factors for poor outcome of
linked with higher distress, no matter whether it was the person bereavement
who died or the person bereaved who was overtly dependent Predisposing factors
on the other. x Ambivalent or dependent relationship
Elderly widowers in Western societies have a particularly x Multiple prior bereavements
high risk of dying in the first six months after their partner’s x Previous mental illness, especially depression
death, and suicide risk is markedly increased in this group. x Low self esteem of bereaved person
Widows tend to report more symptoms in bereavement than Around the time of death
widowers—younger widows acknowledge more psychological x Sudden and unexpected death
x Untimely death of young person
difficulties, older widows report more physical symptoms.
x Preparation for the death
The death of a child is regarded by Western societies as one x Stigmatised deaths—Such as AIDS, suicide
of the most painful bereavements because it is now so rare. x Culpable deaths
There is a high risk of marital difficulty and breakdown for x Sex of bereaved person—Elderly male widower
parents after a child’s death. x Caring for deceased person for over 6 months
Generally, sudden and unexpected death is linked with long x Inability to carry out valued religious rituals
lasting and high levels of distress, especially if it is associated After the death
with violence, suicide, or substance misuse. Cardiovascular x Level of perceived social support
x Lack of opportunities for new interests
disease is the most common cause of sudden death, but in this
x Stress from other life crises
case a modifying factor may be the timeliness of the death. The

456 BMJ VOLUME 316 7 FEBRUARY 1998

 Clinical review

sudden death of an elderly person who has lived a full life is

generally more acceptable than the death of a young person in
a road traffic accident.
In palliative care few deaths are sudden or unexpected to
professionals, but it is important to remember that bereaved
friends and relatives may have a different view. For informal
carers, the strain of caring for a terminally ill person for longer
than six months is associated with an increased risk of poor
outcome.
People from minority cultural or ethnic groups may
experience problems if, at the time of a death, they are not able
to follow the rituals and customs they think appropriate.
Deaths carrying a stigma, such as deaths from AIDS or
suicide, or deaths for which the bereaved carries some
responsibility also bring a higher risk of poor outcome.
After the death, bereaved people who perceive their social Shock and disbelief are more intense after an unexpected and untimely
support as inadequate are more at risk. Opportunities for death of a young person
developing new interests and relationships may not be available
to elderly bereaved people, who may be experiencing reduced
mobility or sensory losses because of their own state of health.
On the other hand, elderly people may have a more accepting
attitude to death because of their experience, while younger
people, with higher expectations of the possibility of cure,
struggle with its inevitability.

Assessing complicated grief

Since grief and its expression are so much influenced by the
society in which a bereaved person lives, and by attitudes and
expectations in the immediate family, assessing whether grief is
pathological or abnormal is complex. It must take into account
several elements.
Intensity and duration of feelings and behaviour—A widow who
cries every day about the death of her husband in the first few
weeks after his death is within the normal range: if she is doing Rituals and public solemnisation of grief are important
so 12 months later there is cause for concern. Intense pining,
self reproach, and anger are danger signs, as is prolonged
withdrawal from social contact. Failure to show any signs of How to help in complicated grief
grief is also an indicator, but some people do recover in a few Avoided or repressed grief—Guided mourning that encourages the
days, especially if they are well prepared for the death. approach to avoided cues in relation to the dead person
Culturally determined mourning practices—A mother who Inability to detach from the dead person, often linked to excessive guilt or self
maintains the room of her 11 year old son, who died four years reproach—Saying “goodbye” to the dead person through writing a
letter or having an imaginary conversation with the person
ago, as a shrine would be unusual in Britain, but a widow in supported by a therapist
Japan might talk to her dead husband for the rest of her life as Chronic grief or avoidance of a new lifestyle—Setting small but progressive
she makes offerings at the household shrine. goals for change in the context of a therapeutic relationship
Any risk factors likely to make bereavement longer lasting or Grief after traumatic unexpected death—Consider treatment for
more deeply challenging. post-traumatic stress disorder before treatment for grief reaction
Bereaved person’s personality—Does the person normally
express emotion dramatically or is he or she normally self
contained and private?

Vulnerable groups
Children
Well meaning adults often wish to protect children from painful
events and information during a death in the family but, by
doing so, may make children feel the pain of being excluded
from events that are very important to them. Children begin to
develop an understanding of some aspects of death and
bereavement as early as 2 or 3 years. By the age of 5, over half
of children have full understanding, and virtually all children
will by the age of 8. How early a child develops such
understanding depends primarily on whether adults have given
truthful and sensitive explanations of any experience of death
that the child may have had, and only secondarily on the level Adults often try to protect children from painful events, including
of cognitive development. attendance at funerals

BMJ VOLUME 316 7 FEBRUARY 1998 457

Clinical review

When a death is about to occur or has occurred, it is

important to discuss with parents what experience of death Books for children to read or use
their children have and what they have been told about the Couldrick A. When your mum or dad has cancer. Oxford: Sobell
current situation, and to encourage the children to ask any Publications, 1991
questions. Parents are the best people to talk to their children, Heegard M. When someone has a serious illness. Minneapolis: Woodland
but they may need support and advice from professionals. Press, 1991 (workbook)
Heegard M. When someone very special dies. Minneapolis: Woodland
Storybooks and workbooks on death and bereavement have
Press, 1988 (workbook)
been produced for children. Mellonie B, Ingpen R. Lifetimes. Melbourne: Dragon’s World, 1983
Parents may be preoccupied with the practical difficulties of Stickney D. Water bugs and dragonflies. London: Mowbray, 1982
caring for someone who is dying or overwhelmed with their Varley S. Badger’s parting gifts. London: Picture Lions, 1982
own grief. In this case it may be useful to involve concerned Williams G, Ross J. When people die. Midlothian: Macdonald Publishers,
family friends or teachers. For adolescents struggling to develop 1983 (for teenagers)
their individuality and independence, their peer group may be a
helpful resource, particularly if it includes someone who has
also experienced the death of a family member.

Confused elderly people and those with learning disabilities

The needs of these groups for help in dealing with bereavement
have often been ignored. Repeated explanations and supported
involvement in important events, such as the funeral and
Organisations for bereaved people
visiting the grave, have been shown to reduce the repetitious
questions about the whereabouts of the dead person by Compassionate Friends
x 53 North Street, Bristol BS53 1EN (tel 0117 966 5202)
confused elderly people or difficult and withdrawn behaviour in
x National organisation with local branches. Offers befriending to
people with learning disabilities. This makes their continuing bereaved parents after loss of child of any age
care less demanding for both family and professional carers.
Cruse Bereavement Care
x Cruse House, 126 Sheen Road, Richmond TW9 1UR (tel 0181
What helps? 332 7227)
x National organisation with local branches. Offers counselling and
befriending, home visits, and social meetings. Some specialist
Identifying people potentially at risk in bereavement—Much
services
pathology can be avoided by work before the death to minimise
Jewish Bereavement Counselling Service
the effect of factors that increase risk of poor outcome.
x PO Box 6748, London N3 3BX (tel 0181 349 0839)
Being present at the death, seeing the body afterwards, and x Counselling by trained volunteers. Telephone helpline
attending the funeral or memorial service—These are helpful
Lesbian and Gay Bereavement Project
provided the bereaved person (including children) wishes to x AIDS Education Unit, Vaughan M Williams Centre, Colindale
participate and is prepared for these events. Hospital, London NW9 5HG (tel 0181 200 0511)
Providing information to bereaved people about the feelings x Advice, support, and counselling for bereaved gay men, lesbians,
they may have and about sources of voluntary support through and their families and friends. Education. Telephone helpline
leaflets or empathetic personal contact. (evenings)
Counselling targeted at those in high risk categories, particularly National Association of Bereavement Services
those who perceive their social supports to be unhelpful. x 20 Norton Folgate, London E1 6DB (tel 0171 247 0617)
x Referral agency. Publishes directory of bereavement and loss
Counselling to unselected groups shows little benefit. Visits by
services. Support organisation for bereavement services
trained bereavement volunteers have been shown to reduce use
SANDS (Stillbirth and Neonatal Death Society)
of general practitioners’ services.
x 28 Portland Place, London W1N 4DE (tel 0171 436 5881)
Opportunities to meet in bereavement groups, where people can x Support for parents after stillbirth or neonatal death
safely test out the often disturbing feelings, questions, and
thoughts that they have with others going through similar
experiences.
There is no single intervention that meets the needs of all
bereaved people, but there is an increasing range of resources
for them to draw on. Most hospices offer a bereavement service
to families with whom they are in contact. This may range from The painting by Fourie is reproduced with permission of Bridgeman
Art Library and the pictures of mourning after the death of Diana,
a telephone call or individual visits by volunteers to group Princess of Wales, are reproduced with permission of Rex Features.
meetings. Many areas have branches of the national self help Frances Sheldon is Macmillan lecturer in psychosocial palliative care
organisations. In addition psychologists, community psychiatric at the University of Southampton.
nurses, and social workers with an interest in health care have The ABC of palliative care is edited by Marie Fallon, Marie Curie
senior lecturer in palliative medicine, Beatson Oncology Centre,
the skills to work with bereaved people whose problems require
Western Infirmary, Glasgow, and Bill O’Neill, science and research
more than the loving support of family and friends or the adviser, British Medical Association, BMA House, London. It will be
sharing of experiences with other bereaved people. published as a book in June 1998.

458 BMJ VOLUME 316 7 FEBRUARY 1998