The Residential Aged Care Facility (RACF) becomes a resident’s home. They will settle in and make friends with other residents and staff. For many residents, it is the place where they wish to die when their time comes. Residents and families often ask if this will be possible. They may worry that the resident will have to move to another facility or to a hospice or hospital.
High care facilities (nursing homes) will be able to provide for the palliative care needs of their residents. Most 'ageing in place' low care facilities (hostels) will do as well. High care facilities have registered and enrolled nurses to provide skilled nursing care at all times. Some low care facilities may not have registered nurses at all times. They will have a nurse on call and may have nurses from other services come to provide specialised care.
Palliative care aims to ensure the best quality of life for a resident when death is inevitable. This could be by controlling physical problems such as pain. It can also help with emotional, spiritual and social needs.
Palliative care is not giving up. It is about doing all that should be done, and can be done, to provide care and comfort to a dying person and their loved ones.
Staff in aged care can ask specialist palliative care teams for advice and equipment. This can help them to better manage troubling symptoms. Sometimes a short stay in hospital is needed. This may be for symptom control or to confirm a diagnosis. It may also be to check if the resident’s condition can be reversed.
Some low care facilities, especially very small hostels, may have few resources. They may not be able to provide complex care or palliative care over a long time. If so, staff will talk to you about what can be done and what is in the resident’s best interests. If necessary, they will try to find an alternative care service that is acceptable.
When a resident requires palliative care, the GP and the nurses will talk to the resident and family. They will look at any care needs. This is to make sure that the resident’s wishes are respected. It is also to make sure that symptoms like pain are well managed. A resident may have previously been admitted to a hospice. If so, the palliative care team from the hospice may continue to see them.
If you are concerned about the care your relative is receiving, ask to speak to the Registered Nurse. You can also make an appointment with the Manager/Director of Nursing. Many people find it helpful to make a list of the concerns that they wish to discuss and to bring the list to the meeting.
When someone is receiving palliative care it can be an emotional time. This is true for them and their families.
No one can say how you should feel, or what emotions you will experience when someone is dying.
Sometimes, there are particular issues relating to residential aged care (RAC).
- Families may have promised that they would care for the resident at home. They may feel guilt that they could not keep that promise. They may also feel relieved that the burden of care has been lifted.
- Caring for someone with dementia can be very rewarding. It can also be very stressful. As the disease progresses people with dementia may not recognise family or friends. They will slowly become unable to communicate.
- For family and friends this can be a time of sadness and distress. Many find it difficult to visit, when the person they cared for does not know they are there. Visitors will often come less often and for shorter periods of time.
- As many residents may be very frail and their death may be viewed as a relief. Families may have been grieving long before their actual death. This is not unusual. However, sometimes people feel guilty or think that they should feel more sadness.
Sometimes grieving may be delayed. They may experience feelings of loss and sadness weeks or months after the death. Sometimes, relatives can feel very angry for many reasons with:
- the difficult behaviours of the person with dementia
- other family members for not doing enough
- others who are caring for the person with dementia.
If this is happening to you, you can talk to your GP, a counsellor or support group.
Relatives often visit the RACF frequently. They make many contacts with staff and residents. They can experience a double sense of loss after a resident dies. They grieve the loss of a loved one. They can also grieve the loss of a routine and a sense of belonging to the community inside the RACF. Many relatives re-establish their lives, develop new interests or revive old interest in time. Some will find comfort in returning to the RACF as a volunteer.
Many RACFs have ways of remembering residents who have died. They may invite relatives back for an annual memorial service. They may continue sending newsletters, or have some other way of including families after residents have died.
Need to talk to someone?
If you need to talk about your loss, counselling is available from:
There are no right or wrong feelings. Counselling is confidential and can help you to understand and cope with feelings that may be troubling you.
Near the End
Many people who live in residential aged care can become very frail. Deterioration in their health can be slow. It may be barely noticeable in the short term. They may have been expected to die, only to recover more than once, despite their frailties. It can seem as if they are going to live forever. They may have been receiving extra care over a long period of time while slowly their condition has worsened. Therefore, it may be hard to recognise that things have changed and accept that death is approaching.
When death is expected, palliative care becomes the appropriate care choice. Not everyone knows what palliative care is. It may be difficult to see why it is now appropriate. Palliative care helps with social, physical emotional and spiritual needs at the end-of-life. It neither prolongs nor shortens life. There is more information about palliative care throughout CareSearch.
When a person is dying they may lose interest in eating and drinking. They may be unable to safely swallow food and fluids. This can be very distressing for families who may fear that:
- their relative is being starved to death
- the resident is suffering from unrelieved thirst or hunger
- the person's care is being neglected, and
- they haven’t cared for their relative properly and ensured that all that should be done, was done.
As death nears, the body's systems shut down, the need for food decreases. Giving extra food and fluid can make the dying person uncomfortable. Giving small amounts of food and fluids as the person wants, and is able to take, is considered the best care. Giving mouth care makes them more comfortable. It also helps to relieve any sensation of thirst.
It is common for a dying person to be given small amounts of morphine. This is to relieve pain. It can also help with other symptoms such as difficulty breathing and distress. Morphine is very safe. It does not shorten life and it does not cause addiction when given for palliative care.
Page created 11 July 2019