Awaiting death: Terminally-ill patients tell own stories ? The Punch ...

For the terminally-ill people, each passing day is a minus on their lifespan. While every human being is aware that death is bound to come someday, death stares these ones in the face almost every second. At times, 20 of them might sleep at night and three might not wake up. Their common expressions every morning are: ??Are u still alive and how many days more do you have to live??? And because, death is no respecter of age, both the young and the old are affected.

And though many have outlived their expected life spans as estimated by their doctors, they are still not sure of life. To them, each new day is a gift and another offers hope. Welcome to the world of the terminally-ill patients at the Hospice and Palliative Unit of the University College Hospital, Ibadan, Oyo State.

Patients at this centre include those with terminal diseases such as cancer, HIV/AIDS, heart diseases, kidney, liver and other organ -related diseases that cannot be cured.

Sharing her experience with THE PUNCH at the Centre for Palliative Care in UCH, Ibadan, Mrs. Jumoke Oni, said she never knew she would be diagnosed with a life-threatening disease when her husband, Ibrahim, took her to a Catholic Hospital in Yemetu, Ibadan, Oyo State, in 2009.

Oni said her doctor had earlier assured the family that the growth on the left side of her body was something that a simple surgery would correct. But, after the surgery, the pains increased and two weeks later, the tumour grew back.

She said, ?The doctor quickly discharged me; he said he did not want me to die in the hospital. He told me that if he had known that I had cancer; he would not have carried out the operation on me.

?When I got to UCH, they told me I had cancer of the bone but that it had spread to other organs. I have had 13 rounds of chemotherapy and countless rounds of radiotherapy. After four operations within four months, the doctors at the surgical unit gave up .They told us they could not continue to operate on every organ in my body because the cancer was progressing aggressively.?

Fifty-five year old Jumoke, who was accompanied by her husband and daughter to the centre for the adult day care forum at the centre, said doctors declared her case incurable and told her to come to the palliative care unit of the hospital in March. They also gave her two weeks to live.

But five months after the doctors? verdict, Jumoke is still living though she said pain had become her friend. However, the fact that when she visits the centre, meets people in similar condition makes her happy.

?My hope is in God and my help is in the care I get from the nurses and doctors that take care of us here. The first time I was told I had cancer, I asked, why me? When I was told I would die in two weeks, I thought it was the end for me. How would my husband and children cope with the bad news?

?My husband sold his land and a house and we are also in debt. I kept asking myself, would all these be in vain. But when I see others in my condition, I have hope. We encourage each other .When I am in pain after chemotherapy; the nurses here don?t shun us or shout at us. Some days, when am strong and I learn how to make jewellery. It is five months after I thought I would die but I am still alive,? she said.

The case of Mrs. Shade Karimu is not different. Shade, who spoke with one of our correspondents during the weekly praise and worship session at the centre on Tuesday, said she lost her husband to an undiagnosed ailment in 2006.

She added that she was still carrying her third pregnancy. According to her, the pain of losing her husband was nothing compared to what her doctor told her in May 2007.

She said, ?Six months after I had my last baby, I noticed he was growing thinner and always fainting. A blood test showed that he was HIV positive.

?The doctor also insisted that I should take the HIV test because of the symptoms that led to my husband?s death, it came out that I was positive too.?

Karimu said her doctor disclosed that the viral load in her baby?s blood was too high and his immunity too low. According to her, she was told that her son had just six months to live.

?After the diagnosis, it was like two corpses walking. My husband?s families took up the care of my other two children but refused to care for me and my new baby.They said since we were going to die any day. There was no need for them to care for them.?

Asked how she had been coping with the reality of living with a terminal disease, she said, ?Since I came here, my frustrations have reduced. At the other wards, I feel that even the attendants are trying to avoid me. It is not easy to get people that want to care for us.

?But I do not believe that I am going to die. If my son survived till today, I know he will live. The cure for HIV/AIDS is on the way. I want my son and I to be alive to benefit from it.?

Though Mrs. Sheerifat Nuhu is just 30 years old, she could pass for an elderly woman. Her hair has fallen off and she looks frail, but while anchoring the devotional service for others at the centre on Tuesday, it seemed like she had no care in the world.

Mariam has cancer of the liver and she has vowed to enjoy the remaining three months that doctors said she has to live.

She said,? We must console ourselves with the Word of God; many diseases would arise towards the end of the world. I use my drugs and pray. That is mixing work with faith.

?I eat good food when I have the appetite and I also love singing. I have come to terms with my condition but I will not panic.?

Palliative care still unpopular in Nigeria

The need for palliative care for patients with life-threatening diseases is still unpopular in the medical profession in Nigeria.

According to the Head of the Hospice and Palliative Unit and the President of Centre for Palliative Care of Nigeria, Prof. Olaitan Soyannwo, when a disease is incurable, palliative not curative care, should be given.

Soyanwo said caring for patients with terminal diseases requires a multi-disciplinary approach. This, according to her, explains why lawyers and clerics visit the centre.

?Palliative care is a care that is aimed at easing the pain of patients with incurable diseases. It is the only care you give to patients with terminal diseases for a peaceful end.

?It is holistic. We have teachers who come to teach the kids who can no longer go to school, as well as social workers who counsel the patients and their family members. Patients become more religious towards their end, we have pastors and Imams who come in to provide spiritual support.

?We have volunteers such as lawyers, who offer free legal services for those who want to prepare their wills. Occupational therapists also come to teach the adults about bead making and knitting. They want something that would take their mind off their pains.?

Since inception, Soyannwo said the hospice has catered for over 1,600 patients and their family members and still provides home-based care for about 80 others who are too sick to come to the hospital.

Soyannwo said with increasing incidences of non-communicable diseases like cancer, HIV/AIDS, kidney and liver failure and heart-related ailment, there was need to increase awareness on this aspect of care in Nigeria.

?Palliative care is unknown in Nigeria. Many health professionals are not aware of it. They are more familiar with cure, so they do not prescribe it. But the time is now, for care to change, because more patients need it.?

Other challenges she identified are lack of drugs for pain management, denial and stigmatisation of patients with terminal diseases, lack of personnel and lack of funding.

?It is hard for us to get volunteers who want to help at the centre. Many people are not interested in caring for people with terminal illnesses without getting paid.

Soyannwo added, ?It is harder to get money to buy drugs for them. Most of the patients are penniless and in debt by the time they were referred to the centre. They cannot buy their drugs; they have spent so much on treatment. We need government and interested individuals to support them.

?More palliative centres should be established so that many of our patients who come from as far as Bornu and Enugu states as well as Kaduna would not have to travel to UCH to get this care, Our cultural beliefs have made it difficult for patients to accept that they have an incurable disease. They see us as prophets of doom.?

?Families are a major factor in this care; they are the ones paying the bills, selling their properties and sacrificing their time to be with the patients in the hospital. We must counsel, care for them and also prepare for the inevitable because they may have bills to pay even after their loved ones are gone.?

Psychological implication of knowing one?s death date

An Associate Professor in the Department of Guidance and Counselling, University of Ibadan, Oyesoji Aremu, speaking on the psychological implication of knowing one?s death date, explained,

??Generally, when an individual is told of a terminal illness, the first reaction is a state of shock, then the stage of accepting the reality. That individual prepares for the eventuality, if he has not written his will, he can do so. He also has the opportunity of calling his siblings and children and preparing them for the eventuality. In a way, we can say the individual has the chance of being part of his own burial plans while alive; he could have a last word with his children.

??But at the same time, the fact that death is staring an individual in the face is a source of worry. So the family should give social support, clerics should pray for the individual, this will provide a sort of soft landing for the individual and put his mind to rest. No doubt, the whole thing could be traumatic.??

He however noted that for the terminally-ill patients, palliative centres offer lots of advantages. According to him, the mere fact that other patients are at the centre gives the individuals some succour. ??At least they know that they won?t be the only ones to die, they see a company of others suffering the same fate. The medical, emotional and social welfare give them a lot of succour, help them accept what they are passing through ?? he said.

Reacting to the observation that a lot of patients seem to have strong hopes of survival and the possible psychological explanation for this, he said a lot of people anchor their hopes on what others can do for them. He said, ?They have so much faith that God will deliver them, they believe the more people intensify prayers for them, the better their chances. Sometimes this works for them because some end up living longer than the time given by the doctors, but even if they die; it is still a good way of coping with their situation. By the time they die, they will die without shock.??

He said people are reluctant to fund palliative centres because of mainly cultural beliefs that discourage people from disclosing their health status especially when it has to do with terminal diseases. ?We have a terrible idea of stigmatisation in Africa. People believe you should only migrate to your family when you have terminal diseases, they don?t want their neighbours to know the state of their health; people prefer to mind their business because of fear of stigma. Again, in Africa, knowing that someone in a family died of a particular disease can negatively affect members of their families in future. People might discourage others from marrying from a family where somebody died of cancer, for instance,?? he added.

He described palliative centres as an emerging phenomenon in Nigeria but encouraged government and individuals to create palliative centres just like old people?s homes. He said people suffering from terminal illnesses might not get enough attention in hospitals. He however said government should control such centres and see them as part of its social responsibility to the citizenry.

He said, ?Government should see it as its social responsibility. Government should see these people as members of the society that deserve care and attention; they should be entitled to government?s benefits as other members of the society.??

He observed that in developed nations, palliative care is part of every medical set-up. ?For every hospital, there are social workers- psychologists. They are mindful of the body, soul and spirit. They treat the three with so much care and give people so much support so that they can live longer. Life has to do with emotions. But here, once people know their loved ones have terminal sickness, they abandon them, in some cases; the children might not even visit them again. But there (developed countries), they live more qualitative life even while dying. There is a way of managing death that makes it a glorious welcome. But people die agonising deaths in Nigeria, this should be discouraged.??

Source: http://www.punchng.com/health/awaiting-death-terminally-ill-patients-tell-own-stories/

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