Palliative care: Easing the pain of illness for patients

A year ago, 34-year-old Simon Okello was like any ordinary man of his age. He was healthy and going about his daily routine normally. Then in July 2012, a small pimple-like bump developed on his lower lip. At first, Okello took it lightly, but when it started growing rapidly, and bloated his lower lip, he decided to go to the hospital.

And this became the first journey of seven surgeries that he would undergo in a space of 12 months.

The tumour was growing fast, but endless test results showed it was not cancerous.

Photos of Okello which his wife showed us, and taken three days before we first met him are terrifying.

It shows him lying in Mulago Hospital’s ward 2B, his mouth largely eaten up by the tumour, and revealing a gaping hole through his chin. He could hardly eat, and if he tried to drink, it would come out through the hole under his chin.

However, it was the daily pain that Okello was going through that burdened him the most.Attempting to describe his ordeal—on a written paper as it is the only way he can communicate at the moment, Okello says: “It is like my world is full of pain and suffering I am alone and nobody seems to care. It feels like life had no meaning.”

The Mulago Hospital Palliative Care Unit (MHPCU) first learnt of Okello’s fate after he had been admitted to the facility about one month ago.

It is this meeting that Okello says has changed his life. “These guys talk to you, they talked to me, encouraged me, and helped me to get medication.” he says. The pain has also become manageable. There was tremendous improvement. I did not feel like the way I was when they first found me,” he says. Today, Okello says he knows a lot more about palliative care than he previously did.

What palliative care involves
Dr Mhoira Leng, the head of MHPCU explains that palliative care involves taking care of people with life-limiting ailments, at the most difficult times of their lives.

“In palliative care, we see the patient as a whole person, more than the disease,” she says.

Mackay Masereka, the clinical manager at Hospice Africa, in Makindye says palliative care involves the whole being of a patient, in terms of the physical, psychosocial, and spiritual needs.

Traditionally, palliative care benefited cancer and HIV patients. But as Dr Leng says, this trend is slowly changing to address other painful ailments such as advanced kidney failure, sickle cell, diabetes and heart diseases.

Friday Toko, a palliative care volunteer explains that sometimes, exceptions are made, and palliative therapy is offered to people with pain such as burns victims.

Masereka says Hospice, which provides home-based palliative care services, and runs a training school usually supports cancer and HIV patients at stage IV and V of the disease.

“We started with cancer but included HIV for two reasons. Donor dictation and the fact that HIV related cancers such as Kaposi ’s sarcoma are on the rise,” he explains.

Palliative care has been often described as the care of the dying, but Dr Leng, says this is just a small component of the care.

“It is an important part of palliative care, but it is only a part of it. Even this part is not just about breaking bad news, it involves ensuring the person dies painlessly, with as little symptoms as possible and with dignity,” says Masereka.

A story of hope
Margret Ashaba,(not real names) 53, is proof that palliative care is not just for a person who is dying.

She benefited from the care 18 years ago, when she was diagnosed with breast cancer. The cancer recurred later, but she is still grateful for the care.

One of the major goals of palliative care is to control pain. And in the palliative care world, morphine is the magic antidote.

“It is given free to patients to help them manage the pain,” explains Masereka.

In Uganda, oral morphine is largely used, and ,it is locally manufactured and distributed within the country and abroad.

“It can be absorbed as long as it touches the membranes of the mouth. Even a patient unable to swallow can use it,” says Masereka.

Okello has been one of the beneficiaries of the drug. Besides that, he has also benefited from surgery, and is slowly recuperating.

Spiritual and social support
Okello says social and spiritual encouragement also made his life easy.

Caregivers say patients may be in pain, but often times, they are also worried about other social issues.

Palliative care helps them deal with some of those issues.

Masereka gives an example of a sole breadwinner with terminal illness. As they grapple with pain, they also worry about how they will feed their families.

Dr Leng recalls a patient, who unable to speak on phone worried about losing touch with his relatives in the village.

“We had to arrange for him to write a letter which was read to his wife over the phone. It was wonderful and he was happy,” Dr Leng says. To do this, you must listen and talk more with the patients.

“We listen to the patients, identify their concerns or problems, deal with what we can, and refer others to places where they can get help.

For example under palliative care, patients living with HIV are not given antiretroviral drugs, but are always referred to where they can find the drugs,Dr Leng adds.

Mulago’s palliative care unit also has a multi-disciplinary team, with doctors, social workers, nurses and a pastoral care expert.

“But there are other medical practitioners within the hospital trained to give palliative care in spite of their other duties,” says Dr Leng.

“We do not have a ward. We will have different patients in different wards at any one time,” she explains.

Of the 2,500 patients who received palliative care at Mulago hospital alone, MHPCU handled 600 of those cases.

However, MHPCU only offers palliative care within the hospital setting. Once patients leave, they are put in touch with other organisations that offer home-based care such as Hospice Africa.

How palliative care is offered
At Mulago, patients are referred to the palliative care unit by the regular medical workers.

Through training of upcountry health workers, major medical facilities across the country are now required to have at least one nurse or doctor specifically trained in palliative care.

Masereka says most of the patients they offer services to make self-referrals, after hearing about palliative care from community awareness campaigns.

Several non-governmental organisations such as Reach out in Kawempe, Rays of Hope in Jinja, and the the Kitovu Mobile programme among others offer palliative care services.

The numbers
A survey conducted by MHPCU reveals that one in four patients at Mulago hospital require palliative care.

And according to the palliative care association of Uganda, some 200 000 people need palliative care, but do not have access to the services. Despite the huge numbers of patients who still cannot access the services, Dr Leng says Uganda is leading the way.

“But there is still a long way to go. The system is still a problem; a lot of work has to be done. The ultimate goal is to integrate palliative care into our health system so that all who require it can get it,” she says.

The next battle
This may be a prospect in the near future as more medical schools are beginning to add palliative care on the curriculum.

And for patients like Okello, his next worry will be how to fit back in the community once he returns home.

His wife, 28-year old-Jennifer Okello, who has been by his bedside, is optimistic about the future.

“He is much better, and now he is getting the right treatment. When the team came I was not sure what they were going to do, but when they said they wanted to help, I thought to myself, they are sent from God,” she says.

She says the assistance they have received in getting medication and tests have helped her husband to recover.

And as Okello notes, the palliative care he has received is a constant reminder of God’s unwavering care.

“It has relieved me from a lot of stress. The support has helped me to know that God cares for everyone regardless of the situation,” he says.

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What it means to take care of the sick
I am Rashida Nalule, a palliative care nurse with Hospice Africa. My job involves home visits to patients with serious and painful ailments. Most of our patients are in late stages if ailments such as HIV, or cancers.

Giving palliative care means that I take care of the patients, help them manage pain and symptoms that come with the diseases.

I speak to patients, register their complains, and either try to help them, or refer them to other people who can help.

I am tasked with finding out what the patients are most interested in, and how they want to be helped.

Sometimes it is pain relief, and other times it is cure. Others may be worried about their family’s welfare, or work.

Sadly, for many of our patients, a cure is not available.

This is where we do more of symptom and pain control. I sometimes bear bad news, at least for those patients who are unaware that their condition may be beyond a cure. It is very important to tell the truth as it is, as a palliative care giver.

Breaking bad news is part of my training.

Through counseling a person is prepared for death.

For instance, I will tell them to plan and not to fear death as everyone will die eventually.

The patients look at me as a friend and a comforter. I form a relationship with them, and it sometimes becomes like a family bond.

It feels like we are going through the illness together.

I end up knowing the patient and their family intimately.

So it is a real blow when the patient passes on, and these are usually the tough moments of my job.

But I am also comforted by the fact they passed away as painlessly as possible, often times in their sleep.

I have seen people in a lot of pain, but I also felt the reward of being there for someone during needy periods.

Patients who receive palliative care suffer less. That is why I wish it is made more accessible.

As told to Christine Wanjala

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