Learning The Diagnosis
The diagnosis of a life-threatening illness such as cancer, dementia, neurological disease, cardiac or respiratory disease, or kidney failure is a devastating event for all involved. It can bring with it a range of intense emotions and grief reactions, which may include sadness, anger, guilt, anxiety, loneliness, helplessness, numbness and shock.
It is common to hear people say that they cannot believe their diagnosis, or that the illness is happening to them. As the reality sinks in, however, even in the early stages of the illness it is not unusual for the sick person and their family members to begin the grieving process.
For some people, it may be a relief to finally have a diagnosis after a period of ill health and uncertainty.
Living With Illness
During the course of a life-limiting illness, many changes and losses can be experienced by the patient and their loved ones, all of which may be a cause of grief.
These changes may include:
- a sense of uncertainty about the future
- disruptions to normal daily routines as more time is spent attending appointments and undergoing treatments
- adjustments such as giving up work to take on a caring role
- increased stress and demands on those caring for the sick person
- reduced contact with friends
- 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 like cancer, dying and death
- the physical deterioration and gradual loss of functioning experienced by the person who is ill.
As the illness progresses, it is common to experience many emotional ups and downs. Those affected by the illness can fluctuate between times of hope and despair. This emotional rollercoaster can leave patients and carers uncertain about how to deal with the patient’s possible death. 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 their loved one has gone.
Finding Help And Support During The Illness
During the illness, those involved may find it helpful to:
- get answers from health care professionals to any questions or anxieties that arise
- make contact with support groups run by illness-related organisations
- 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
- 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.
The support of close friends and family can help immensely during this time.
Palliative care is care that helps people live their life as fully and as comfortably as possible when facing a life-limiting or terminal illness. Palliative care identifies and treats symptoms that may be physical, emotional, spiritual or social. Palliative care may be relevant at various times during a terminal illness, and receiving palliative care does not mean that all other treatments need to be stopped.
In most areas, palliative care is co-ordinated or supported by a Specialist Palliative Care team, but the care will often be delivered by a GP and community nurses at home. Palliative care can also be provided in a hospice or hospital.
The support of a counsellor, social worker or pastoral care worker, either from the palliative care team or the community, can also help patients and families prepare for death.
When a person dies after a long-term illness, their family and friends may face some specific issues as they grieve.
- although the death could have been foreseen, the reality of the loss can be unexpectedly profound
- physical exhaustion, for those who have provided care, or even stayed with a loved one in hospital, may initially be overwhelming
- when the death occurs after a period of prolonged and intense medical care and treatment, the death may cut the family off from contact and support, and leave them feeling isolated and disconnected
Many medical services that treat long-term, life-threatening illnesses also have bereavement support to assist families through these experiences.
The course of a terminal illness may also lead to particular difficulties for those bereaved.
- 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 provided 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 the patient.
Adjusting To The Loss
While a death after a long term illness may bring relief from the demands and worries associated with the patient’s care, it will leave a significant hole in the lives of the survivors. This will be especially the case for those who have dedicated time and energy to caring for the person who was dying. It may take some time to adjust to this loss of the caring role.
People who have cared for someone through an illness have often developed considerable knowledge and skills, and it may help in their grieving to volunteer for the relevant illness-related association, or to be a support person to another family dealing a similar diagnosis. 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.
The national peak body for palliative care
Provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.
Cancer Council Australia
Provides evidence based cancer information on prevention, research, treatment and support.
Supports 12-25 year-olds dealing with their own diagnosis, a close family member’s cancer or the death of a loved one.
Page last updated: 17 September, 2019