By Vicky Wandawa
Terminal illnesses — The common scenario in the Ugandan setting is that terminally-ill patients are taken to the countryside/village to await their death, or simply left in secluded rooms within the family house. If they are lucky, they will be occasionally checked on.
Many times, however, they are not deliberately left to die alone. A typical nuclear family in the urban area comprises children who go to school and adults have 8:00am to 5:00pm jobs.
There is hardly anyone to take care of the elderly or terminally sick at home. Hence, they are left on their own and sometimes with the housemaid who is instructed to give them food. Slowly, they may waste away and die in agony.
In most cases, such patients have been turned away because their doctors have confirmed that nothing more can be done to improve their condition.
On the contrary, it is at this point that such patients need the best care and love because of the intense pain as well as fear of transition into the unknown - death. Hence, such patients would fully appreciate palliative care.
Eddie Mwebesa, a doctor at Hospice Africa Uganda, describes palliative care as a specialised approach that involves providing patients with life threatening conditions, relief from pain and stressing symptoms.
Alongside pain management, the emotion, spiritual and social aspects are each taken care of to ensure relief. Mwebesa specifies that the overall goal of palliative care is not to extend the length of life, but to enhance the quality of life for that patient, whose illness will not cure.
Palliative care can be either home- based or hospital-based, though the former is advisable because at home, the patient is surrounded by familiar faces and people they love — all in an environment more comfortable than the hospital.
“As long as there is pain control, the patients can be managed from home,” Mwebesa adds.
Palliative care not a death sentence
The terms palliative care and hospice can be used interchangeably. Although to many, the terms signify death, they are actually more about life than death, as they enhance the patient’s quality of life.
Uganda embraces palliative care
Dr. Ann Merriman introduced palliative care in Uganda in 1993. Uganda was one of the first countries to embrace palliative care in Africa, after South Africa, Zimbabwe and Kenya.
But palliative care in the modern sense started in the 1960s in the US, with Cicely Saunders, who researched methods and demonstrated the possibility to control pain, even if a disease could not be cured.
When is palliative care required?
Contrary to the common belief that palliative care is only for patients who are ‘actively’ dying, Mwebesa says: “Palliative care should not wait for far advanced stages of the disease. In a cancer patient, for example, the disease may be potentially curable, but the patient extremely anxious and in pain, hence the need for palliative care.”
Besides cancer and HIV, conditions that require palliative care include; chronic obstructive airway disease, congenial conditions, for example babies born with damaged brain, liver sclerosis and sickle cell, among others.
The doctor emphasises that: “Anywhere pain is a feature and life is limited in some way, there is need for palliative care.”
Painkillers and palliative care
Mwebesa explains that for a number of ailments, common over-the-counter painkillers such as paracetamol and diclofenac are not strong enough to give relief, hence the need for oral morphine.
Compared to injectable painkillers, oral morphine is recommended for patients under palliative care, considering that they experience pain for days on end. What is more, it can be easily administered by non-medical caregivers.
Morphine is an opioid (medication prescribed for moderate to severe pain relieves pain). Although opioids are pain medications widely prescribed for both non-cancer and cancer-related pain and provide significant benefits for patients, they also carry a risk of abuse, misuse and death. Hence they cannot be accessed over-the-counter, making prescription a must.
Mwebesa explains that by law, worldwide, morphine can only be prescribed by a small group of specialists, including physicians, dentists and veterinary surgeons.
Dr. Jacinto Amadua, the commissioner of Clinical Services at the Ministry of Health, says Uganda is the only country worldwide, which has nurse prescribers of morphine.
This is because there are fewer doctors than nurses. If only doctors prescribed morphine, patients in health units without doctors would not access the drug, hence the need for training of nurses to prescribe morphine.
“In Uganda, nurses man the health units, and are more widely available than doctors,” Mwebesa says.
Morphine is provided free in government health facilities. The National Medical Stores is mandated to purchase and import the powder used to make oral morphine.
“The powder is then taken to Hospice Uganda for reconstitution into an oral solution because the facility has both the necessary expertise and premises, after which it can be accessed by both private and public health facilities in Uganda, free of charge,” Amadua explains.
In 2009, 33-year-old Sentongo was diagnosed with HIV/AIDS and Kaposi’s sarcoma, a skin cancer. He had sores, which emitted a foul smell. Sentongo was in a lot of pain. He could hardly sleep at night.
His legs were swollen too and he could hardly walk or stand. He was dependent on his ageing parents for care. Sentongo had depleted his finances as he sought care from several clinics, though his condition did not improve.
Eventually, he went to a hospital, from where he was referred to Hospice Africa Uganda for pain control and psychosocial support. Sentongo was enrolled onto the palliative care programme and started on oral liquid morphine, medication for extreme pain.
He was then referred to a major hospital with a cancer wing, where investigations were done and cancer chemotherapy started.
He was also supported with nutritious foods to boost his health and he was regularly visited by a multi-disciplinary palliative care team at home, which was the place where he preferred to be cared for. Sentongo has remarkably improved. He can now stand and walk unsupported.
Demand for palliative care rises
Patient care burden
Mwebesa notes that palliative care is necessary now more than ever, because non-communicable diseases are on the rise, for example cancer, hypertension and heart disease. These are long-term diseases that present with a lot of pain.
Further more, palliative care reduces the burden of caring for a patient. For example, in urban areas where patients may have to be left alone as their relatives go to work, a palliative team comes in handy to check on the patient, so they would not feel neglected.
Home-based palliative care also reduces the cost of healthcare because the symptoms and pain are controlled at home and a patient would not have to regularly go to hospital.
The palliative care team
The palliative care team is formed, taking into consideration the multi-dimensional challenges a patient faces. The team comprises members with different competencies, such as a doctor, nurse, social worker and someone to address the spiritual needs of a patient.
However, sometimes, tasks are shifted, for example, a nurse can offer counselling and spiritual care, alongside medical care.
Palliative care is free
Amadua says palliative care services can be accessed free of charge in all regional referral hospitals, in more than half the district hospitals and some health centre IVs for example in Kibale and Kitgum districts.
He says currently, there are 15 palliative care associations all over the country and more are coming up. Plans are underway to build palliative care teams and link them with community programmes.
What is more, Hospice Uganda handles some referral cases from different hospitals, and also have volunteers in the community to seek out patients who need palliative care.
Only 20% who need palliative care are receiving it
In 2011, the WHO country representative, Dr. Joachim Saweka, said only 10% of over 200,000 Ugandans in need of palliative care and treatment have access to the facilities.
However, there has since been an improvement in the access of palliative care. Amadua says 20% of the patients in Uganda who need palliative care are receiving it, adding that in the next five years, all patients who need palliative care will get it.
“The start was hard because of limited medical personnel that were allowed to prescribe morphine. But now, we are moving fast forward than ever before, since nurses too can prescribe the medication. Uganda is the only country worldwide where morphine can be prescribed by nurses,” Amadua says.
Majority are cancer and HIV patients
According to Hospice Uganda, cases of HIV and cancer comprise the highest number of people under palliative care. “About 55% to 60% have cancer; 20% have both cancer and HIV, while the rest suffer illnesses like sickle cell and degenerative joint diseases, among others,” says Mwebesa.
Hospice Uganda is mandated to train prescribers and it mainly relies on donors for financing. However patients too can benefit from their services at a subsidised cost of sh5,000 per week. The actual cost is estimated at least sh60,000, per person per week.
Since it opened in 1993, Hospice Uganda has attended to about 22,000 patients, with up to 30% of the female patients suffering from at cervical, breast or ovarian cancer. Amongst the males, the commonest cancers are prostate, pipeline and Kaposi’s sarcoma.
Hospice Uganda offers training for palliative care and basic training to caregivers in homes, such as how to turn a bedridden patient, oral hygiene for patients who cannot clean the mouth, feeding and how to lay the patient’s bed, among others.
Caring for a loved one at home
Patients need to be shown utmost love and care, by family and the people around them.
Caregivers should get the basic skills from doctors and nurses on how to look after a patient.
Caring for a loved one can be challenging
Informal caregivers are family, friends or volunteers who provide care for a loved one. Informal caregivers are rarely paid directly for their services.
They may receive indirect payment through sharing a loved one’s income or assets. Although informal caregivers may provide services in a facility, in most cases they are providers of care in the home.
Caregivers face many challenges providing care at home. A wife caring for her husband may risk injury trying to move him or help him bathe or use the toilet.
The financial impact is another challenge. The financial burden depends on who the informal caregiver is. For a spouse, there is typically no financial cost since income and assets will be the same with or without a need for care.
However, if a spouse offering informal care is employed and has to quit his or her job to provide care there is a significant impact on that family’s finances.
Emotional and physical strain
Despite the fact that there may be no significant financial impact on a spouse caring for the other spouse at home, there can be significant impact on the emotional and physical health of the caregiving spouse.
Because of the strain and burnout often associated with caregiving, the healthy spouse may experience deteriorating health and eventually require long-term care services as well. In some cases healthy spouses have succumbed drastically to the pressures of caregiving and died prematurely, well before their care recipients have died.
Distance and time
The need of constant surveillance on a spouse with advanced dementia can be challenging. For instance, if the patient lives 500 miles from his parents who ma y be very old or disabled, they have to constantly travel to and from his home, trying to manage a job and his own family as well as taking care of the parent.
Other challenges may be caregivers who simply do not have the time to watch over loved ones and those loved ones are sometimes neglected.
The problems with maintaining home care are mainly due to the inadequacies or lack of resources with informal caregivers, but they may also be caused by incompetent formal caregivers. These problems centre on five issues:
Inadequate care provided to a loved one
Lack of training for caregivers
Lack of social stimulation for care recipients
Informal caregivers unable to handle the challenge
Depression and physical ailments caused by caregiver burnout.
In order to make sure home care is a feasible option and can be sustained for a period of time, caregivers must understand the problems outlined above, deal with them and correct them.
This often involves bringing in formal caregivers such as care managers, home care companies or other long-term care advisors.
The responsibility for recognising home care challenges and solving them is shouldered by the team of specialists and advisors that have been invited in to offer their help.
Adopted from online sources
Faced with a terminal illness? Home-based care can offer relief