The diagnosis of a life-threatening illness is often a devastating event for all
involved. It can bring with it a range of intense emotions and reactions, which
may include sadness, anger, guilt, anxiety, loneliness, helplessness, shock,
numbness and even relief. It is common to hear people say that they cannot
believe this is happening. As the reality of the illness sinks in, however, it
is not unusual, even in the early stages of the illness, for the sick person and
family to begin grieving over the patient’s loss of health and possible death.
During the course of the illness, many changes and losses can be experienced by
the patient and family, and a process of grieving may accompany these losses.
Such changes may include:
- disruptions to normal household routines and life style,
- increased stress and demands in caring for the sick person,
- reduced contact with friends and increased, potentially intrusive, contact with
those who provide medical and nursing care,
- limited opportunities to talk about the illness and its impact due to social
“taboos” about topics such as cancer, dying and death,
- the physical deterioration and gradual loss of functioning experienced by the
- As the illness progresses, many emotional ups and downs can be experienced, with
those involved fluctuating between times of hope and despair. This emotional
roller coaster can leave patients and carers uncertain about how to deal with
the patient’s possible death. However, many people will experience what has been
called “anticipatory grief”, in which they acknowledge, albeit unwillingly, the
possibility of death and begin to grieve and prepare for life after the death.
During the illness, those involved may find it helpful to:
- get answers from the health care professionals involved to any questions or
anxieties that arise,
- make contact with support groups run by many illness-related organisations e.g.
The Anti-Cancer Foundation, The Alzheimer’s Association,
- talk to someone who has been through a similar experience,
- keep in contact with close friends or relatives who will understand their
feelings and give support,
- try to keep communication open and honest as the illness progresses.
- As the likelihood of death becomes more evident, the dying person and their
family can go through a very stressful, intense and complex process of coping
and grieving. For many, the support of close friends and family will help
immensely during this time. As well, palliative care, either in hospice or at
home, can provide specialised care to help at this difficult time.
When a person dies after a long term illness, there may be some specific factors
or issues related to the grief of those bereaved. The death often occurs after a
period of prolonged and intense medical care and treatment. The death may cut
the family off from this previous contact and support, and leave them feeling
isolated and disconnected from those they relied upon. However, many medical
services which treat long term, life-threatening illnesses also have bereavement
support available or can assist families in receiving such help.
The long, deteriorating course of the illness may lead to some additional
difficulties for those bereaved in this way. They may be bothered by memories of
the physical changes and deterioration suffered by the person who died. They may
have ongoing feelings and reactions about the nature and quality of care
provided during the illness, perhaps wondering if treatments might have been
done differently or better. Bereaved family members may be able to deal with any
such lingering questions by talking to their family physician or to the
specialist(s) involved in the treatment of their family member.
While a death after a long term illness may bring relief from the demands and
worries associated with the illness, it also can leave a significant “hole” in
the lives of the survivors, who often have dedicated much time and energy to
caring for their dying family member. It may take some time to adjust to this
loss of the caring role. Survivors have often developed considerable knowledge
and skill in dealing with the illness, and it may help them in their grieving to
volunteer for the relevant illness-related association or to be a support person
to another family dealing with the illness. Many volunteers in hospice and
palliative care programs have themselves had a family member die, and use their
experience as a basis for helping other families.