What do we do now?
Facing the reality of a life limiting illness is a traumatic time for you and the person who has the illness. What will happen next? How long do we have? These are questions most people ask.
Your doctor will be able to give you some ideas about what problems are likely to arise but it is sometimes difficult to be specific, particularly about how long someone has to live. Some illnesses advance more quickly than others and the person may rapidly lose the ability to look after themselves, whereas others may be able to maintain a high degree of independence for some time. Asking questions can help.
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness. This is achieved through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
- provides relief from pain and other distressing symptoms
- affirms life and regards dying as a normal process
- intends neither to hasten or postpone death
- integrates the psychological and spiritual aspects of patient care
- offers a support system to help patients live as actively as possible until death
- offers a support system to help the family cope during the patients illness and in their own bereavement
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- will enhance quality of life, and may also positively influence the course of illness
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care professionals work in teams including, for example, nurses, doctors, social workers, pastoral care workers, and volunteers. They work alongside GPs, specialists and other community organisations that manage day-to-day care and support, to make sure that the person and family get the best care possible.
Palliative care can be provided at home, in an aged care facility, in an acute hospital or in a hospice or a palliative care unit.
Caring at home is a big commitment on the part of the carer/s. If you are considering becoming the carer at home, discuss the options with your doctor or your community or palliative care nurse. There is a lot of help available if you do decide to care for the person at home, but you should not feel guilty if you feel that you can’t manage it.
If I really can’t manage at home, can the person spend the rest of their days in a hospice, palliative care unit or hospital?
Hospices and palliative care units function as centres where people who are having difficulties with the symptoms of their illness can go for treatment, for respite care, or for care in the last days of their illness. They offer intensive nursing, medical and allied health support. Not everyone needs this. People seldom stay in hospices or palliative care units for long periods of time. If the person you are caring for is assessed as not requiring this level of care then you will be helped to find an alternative care facility, possibly a nursing home or hostel.
Aren’t nursing homes and hostels for old people?
There have been many changes to the care provided by nursing homes and hostels in recent years. They are now also called residential aged care facilities. In the main they care for frail elderly people, but they are also forging ahead in providing palliative care for people of all ages.