PALLIATIVE care is not easy to talk about in Malaysia where death is still a taboo subject. But, dying is part of life and at some point in our lives most of us would need palliative care or be involved in caring for our loved one in their final days.
Norashikin Cheong Abdullah, head of Training and Quality Assessment at the Aged Care Group, explains what is palliative care:
“Palliative care is specialised medical care for people with serious or terminal illness. It focuses on providing patients with relief from the symptoms and stress of a serious illness and treat the person’s pain and other physical, psychosocial, and spiritual problems.”
According to her, palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
“The caregiver in palliative care needs to work closely with the palliative care team to provide extra support to the care recipient. It is stressful and emotional having to care for a person whose days are numbered. It will drain the caregiver emotionally unless they are passionate about palliative care.
“The caregiver needs to be at their best if they are to provide the best care. Therefore, caregivers need to pay attention to their own needs as well as those of the person they are helping. They should also set limits on what they can reasonably expect themselves to do. Importantly, they should take time off to care for themselves, and ask for help before stress builds,” she explains.
Norashikin says that while there are no special skills needed to provide palliative care, the caregiver needs to be compassionate toward the terminally ill care recipient.
The caregiver also needs to be strong and be predisposed to accept the fact that the person is dying and he or she must be prepared for the looming loss of a loved one, if caring for their own family member.
Often at this end stage, they would also need to focus on providing comfort, especially skin care. It is important to keep the elderly’s skin dry and clean, and watch out for pressure sores. “The prevention of pressure sores is important when the care recipient is at the end stage of life,” says Norashikin.
Here are some important points that the caregiver needs to be mindful of:
- Work and communicate effectively with the care recipient.
- Support the care recipient’s spiritual concerns.
- Help to resolve the care recipient’s unfinished business.
- Work with health professionals.
- Work with family and friends.
- Take care of your own needs and feelings.
At the end of life, it is very important to help the elderly fulfil what may be their last wishes.
“It is an honour to fulfil the someone’s wishes for end of life care, but care to be provided should be within the means of the caregiver and palliative care team,” says Norashikin.
The aim should be to provide as much comfort to the dying person as possible.
“Palliative care is aimed at providing comfort to the very breath of the care recipient. So long as the care recipient is in pain, medication can continue till his or her last breath. There is no need to stop medication just because you think the person is dying anyway.
“The most important thing to remember about palliative therapy is that nobody is ‘giving up’, and you will always continue to receive care and help from your healthcare team; however, the focus of treatment will be more concerned with helping the person feel and cope better rather than on curing them,” says Norashikin.
Finally, when there are signs of impending death, it’s time to call family members to the elderly’s bedside.
What are some of the signs that death is approaching?
- Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient’s metabolism).
- Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient’s metabolism).
- Decreased socialisation and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying). Speak to the patient directly.
- Decreased need for food and fluids, and loss of appetite (caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly).
- Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
- Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
- Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in colour, especially on the underside of the body (caused by decreased circulation to the extremities).
- Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
- Turning the head toward a light source (caused by decreasing vision). Leave soft, indirect lights on in the room.
- Increased difficulty controlling pain (caused by progression of the disease). It is important to provide pain medications as the patient’s doctor has prescribed.
- Involuntary movements (called myoclonus), changes in heart rate, and loss of reflexes in the legs and arms are additional signs that the end of life is near.