Terminally ill need care, hope

By Hawa Mudondo
and Hilary Bainemigisha

THE World Cancer Day on February 4 was marked by messages of prevention and diagnosis. However, in Uganda where facilities, staff, funds and awareness are not enough, many people discover they have cancer when it is too late.

When it is ascertained that the patient will not recover and the disease is terminal, it becomes a challenging period for the whole family.
With the advent of AIDS, many families in Uganda have had an experience of nursing a relative till death. Few are prepared for the challenge.

There are stories of abandonment, both physical and emotional where the bed ridden patient is left in unhygienic conditions, exposed to new infections to die in abject pain.

As persons take the final turn to the end of life, they must be allowed to live the remaining life as comfortable and meaningful as possible.
“Everybody must learn how to care for the terminally sick because you never know what your fate will be,” said Kamaiba Amooti, a Palliative nurse at Mulago Hospital.

Palliative care
Caring for terminally sick patients is called palliative care. It is active total care of patients and their families and friends at a time when the patient’s disease is no longer responsive to curative treatment and life expectancy is relatively short.

Even faced with death, the patient requires physical, psychological, social, spiritual and cultural support.
But in the absence of special palliative support, you may have to support your own relative. “Common concerns of a person on the death bed include pain, loss of independence, worries about their family, and feeling like a burden”, says Kamaiba. “Others vary from patient to patient.”So, everybody needs to know management tips.

Physical needs: According to Dr. John Matovu a general practitioner at Mulago Hospital, ensure the physical life supportive measures which involve restoring the body’s functions by using the airway, breathing, and circulation (ABC) strategy.

“Know how to position the sick to aid proper breathing with an appropriate pillow proportional to the size of the patient,” he said. “Enough aeration with open windows to keep the room fresh and proper hygiene must be maintained. This involves cleaning the patient and washing their clothes regularly.”

Pain management: Normally, the patient should be in hospital where trained workersl take care of the changing needs leading to death, especially if organic changes in the brain lead to coma or dementia.

But, according to Kamaiba, if a patient prefers to be at home (most do), a care-giver must learn how to provide relief from pain either through chemotherapy (painkillers and tranquillisers), or alternative medical treatments (relaxation therapy, massage, music therapy, and acupuncture).
According to an internet interview with Anne Merriman of Hospice Africa Uganda, 98% of patients they handle have severe pain. “Cancer pain is much scarier than pain from HIV/AIDS because it will not go away and may only get worse, whereas most pain associated with AIDS goes away with management of the opportunistic infection giving rise to it, although it may recur,” she said.

Symptom management: Sick people have a variety of symptoms such as loss of appetite, nausea, weakness, breathing difficulty, bowel and bladder problems and confusion. The doctor can show you how to relieve these symptoms.

According to a palliative book, HIV Infection Diagnostic and Treatment Strategies for Health Care Workers by Elly Katabira, you may need to consult with alternative health care like herbalists and traditional healers.

Get help: Since it may be a new experience, consult medical workers on how to handle certain situations. You also need to know how to protect yourself from infection. You may have to invite a chaplain/pastor, a social worker, or counsellors to visit the patient regularly.

Psychological support or management of anxiety: Matovu says spiritual care is important to prepare the patient for the new world. Get religious leaders to talk to the patient and reassure the patient that there is life after death. Psychosocial aspect involves continuous counselling, use of appropriate communication skills like eye contact, facial expression and confidence. Don’t look scared because it scares the patient too. Use a calm voice while talking to the patient and lastly, touch.

Social support: Dr. Pauline Nassolo, the regional representative of Private Mid on private practice in Kampala, says you have to give love, attention and support. “Patients should not be denied their demands. If they want to see their children, spouses or parents, let them.”

She adds that visitors are very good and should bring gifts to make the patient feel loved and cared for. They should avoid discouraging words and expressions.