The unsung heroine who takes away pain

Friday September 16 2011

By FRANCIS MUREITHI [email protected]

Not many Kenyans have heard of her and not even some of the 7,000 medical practitioners in the country are aware that she is the country’s pioneer of palliative care on a full-time basis.

Dr Zipporah Vunoro Ali will this week coordinate a unique side event in New York during a UN high level summit on non-communicable diseases.

Kenya will be the only nation holding such a side event at the meeting in an effort to update participants on gains it has made in the field of palliative care.

While a majority of her colleagues ventured into private practice soon after graduating or working for a few years in the public sector, Dr Ali opted to go the philanthropic way.

In 1994, after working for a few years at the Kenyatta National Hospital, she became a volunteer at the Nairobi Hospice where she helped cancer patients to make a smooth and painless transition to their maker in their last days on earth.

Two years later, Dr Ali became a full time employee at the Nairobi Hospice.

Chance to make a killing

Hers has been a journey of endurance and perseverance and she recalls how colleagues would refer to her as “Dr Death” because of her preference to work with terminally ill patients.

“I had opportunities and the chance to make a killing like my colleagues  but I kept asking myself: Is this why I studied medicine? Will this guarantee me happiness as a doctor? What difference do I want to make to my fellow Kenyans?”  she asks.

Her huge contribution  to palliative care has revolutionised  the way patients suffering from non-communicable diseases such as cancer are handled by medics and paramedics in public and private hospitals in Kenya today.

Dr Zippy, as she is fondly known by close colleagues, is one of the unsung heroes in the field of medicine who has quietly but aggressively spearheaded a campaign to develop a national palliative care policy.

Her struggle has not been in vain and the government, through the National Cancer Control Strategy 2011-2016 implementation framework, has recognised her efforts and committed itself to enhancing pain relief and palliative care.

“People with diseases such as cancer are sent home to die. Nobody seems to care how they die because there are no systems in place for their care. It is therefore important for the ministries of Public Health and Sanitation and Medical Services  to honour the strategy and implement it to improve palliative  care in Kenya,” says Dr Ali.

In a recent interview at her offices in Nairobi, Dr Ali, who is the Kenya Hospices and Palliative Care Association (KEHPCA) national coordinator, said the budget for the care of patients dying from non-communicable diseases must be increased.

“We have put lots of money into HIV/Aids and forgotten non-communicable ailments like heart disease, diabetes, cancer and chronic respiratory diseases which are sending millions of Kenyans to an early grave,” said Dr Ali, a mother of three teenage boys.

Although population-based data for Kenyans who have succumbed to non-communicable diseases is not available, the Division of Non-Communicable Diseases in the Ministry of Public Health and Sanitation says every year, 28,500 new cases of cancer are diagnosed while 21,100 people die of cancer every year.

Over 37 per cent of the population has high blood pressure and 12.7 per cent are suffering from heart diseases while 10 per cent have diabetes.

Non-communicable diseases are the cause of over 55 per cent of deaths recorded in Kenyan hospitals while they contribute  50 per cent of admissions in public hospitals.

Dr Ali’s struggle has started to bear fruits as the government has now integrated palliative care services at most referral hospitals in the country.

“If I were to walk away  from this job today, I would leave a happy person that the partnership between the Kenya Hospices and Palliative Care Association and the government has borne fruits as  palliative care has finally been integrated  into government hospitals,” she said.

“Today, a person in a remote village in any part of this country does not need to travel all the way to Nairobi to seek palliative care as we have more than 40 hospitals offering those services,” she adds.

The number of hospices in the country has also more than doubled from seven to 16.

Millions of Kenyans suffering from non-communicable diseases seeking services at these hospices are now assured of adequate care and tender touch approach to pain control, thanks to her efforts.

However, the soft-spoken doctor whose mission is to ensure that every Kenyan in need of palliative care has easy access to this essential service, says paediatric palliative care has been neglected.

“It is sad that most paediatricians  are not trained on how to alleviate a child’s physical, psychological and social distress as the curricula for medical students is silent on this critical part of their learning,” said Dr Ali.

“In this country, we have many children suffering from sickle cell anaemia who suffer severe agony that cannot  be alleviated by ordinary pain killers. This country lacks proper medication control measures to alleviate these children’s pain,” she said.

She says KEHPCA is now focusing  on training of paediatricians and other physicians to deal with pain management, especially for children.

“If you walk into a children’s ward at most hospitals in Kenya, you will find children with sickle cell anaemia in crisis because doctors have no knowledge on pain management for such patients,” she says.

She said at least 40 medics and paramedics recently underwent a five-day training stint on paediatric palliative care in Nairobi.

“Many of the doctors were surprised at how much the suffering of children is neglected. Some were overheard saying ‘our children will not suffer so much unnecessary pain again as we didn’t know we could support them’,” says Dr Ali.

Foetal alcohol syndrome

Apart from sickle cell anaemia, other life threatening illness that affect children include failure of heart, liver, kidney, malnutrition, head injuries, cerebral palsy, spinal cord injuries, Downs syndrome, foetal alcohol syndrome, birth asphyxia among others 

Dr Ali says KEHPCA has launched an initiative to influence a change of curricula for medicine, nursing, dental and pharmacy studies at all medical schools in the country.

“We graduate as doctors, nurses, dentists and pharmacists  but the truth of the matter is that we are not trained on palliative care,” she says.

She says things are now changing for the better and students undertaking Bachelor of Science (Bsc) in Nursing  degrees are being taught palliative care.

“There are about 45 units of palliative care for students studying BSc Nursing and we are hoping this will be integrated  in all medical training colleges in the country.”

Dr Ali says students of medicine at the University of Nairobi are also taking two-hour lessons on palliative care, which she says is not enough.

“If doctors and other paramedical personnel are to perform their duties as expected, then palliative care must be fully embraced in all medical institutions,” said Dr Ali.

But how did her passion and desire for this particular branch of medicine start?

“My love for palliative care was ignited when my brother, Harun Ali, died of blood cancer,” she recalls.

She says when he died at the prime age of 33 in 1991, the family was traumatised  and his last moments still haunt her.

“I was a young doctor, fresh from university. He was diagnosed and succumbed to the disease within two weeks,” says Dr Ali.

“Nobody told him what he was dying of. Nobody told him about this illness. His wife and three children were in the dark and watched helplessly as their breadwinner died in a lot of agony,” she says.

Surprisingly, recalls Dr Ali, her three sisters were all doctors but none of them could stand up and tell their dying brother why he was going through such agony.

“We were not able to prepare his wife. I was not even able to support my mother when her only son was kissing goodbye his world of pain and suffering.

“It was really painful. My brother departed from this world with a lot of pain. He cried all the time  and we were not able to do anything about his pain despite the fact that there were four doctors in the family,” she adds.

It was from this experience that she started thinking of what she could do to alleviate such suffering for fellow Kenyans.

“I felt pretty bad for a long time and I kept asking myself what I could have done to make his death less painful,” she says.

After this traumatic experience, Dr Ali, who was among several other doctors who received the African Palliative Care Association (APCA) award for her contribution to palliative care  in Africa, decided to help patients with life threatening illness exit this world in dignity.

“If it could happen to my own brother under my close watch, I thought, then it could happened to any other patients and that is why I decided to dedicate my services to such people,” she says.

“Most of these patients’ families are not counselled and end up suffering just like the people they are supposed to take care of,” she says, adding that this is a trend replicated in all public hospitals in the country, thanks to the huge gap in the training of medics.

“As doctors we don’t seem to receive enough training to deal with this kind of situation. That is why most of the time doctors are unable to extend appropriate care to these patients,” she says.

Dr Ali insists most patients would not suffer so much agony if doctors had been imparted with the proper skills to ease their pain.

Doctors, she says, may sometimes find themselves in a situation where they cannot do anything to save a life but with proper training, are capable of preparing their patients to pass on to the next world with dignity.

Dr Ali maintains that most doctors do not talk to their patients about the diseases afflicting them.

“We don’t have the skills to break bad news. We lack communication skills at the hour of need.

“We just write down the symptoms and prescribe drugs. But patients need much more than that. They need the tender touch and that personalisation, that special care, that is such an essential part of their healing process,” she says.

Dr Ali’s awakening call saw her views on patient management change and instead of seeing them as a number or a disease, she sees them as people with a name.

“In hospitals, we used to call patients by their bed names or use short initials of their diseases to identify them as we made our rounds. Patients became diseases and bed numbers. They were not people. This was so dehumanising,” says Dr Ali.

She was pleasantly surprised

“You can imagine how bewildering it is when a group of people stand around your hospital bed speaking medical jargon that you don’t understand and the only thing they say to you is ‘habari mama’ and then start having a conversation amongst themselves. How would you feel?” she asks.

“You have come from the village and you don’t understand what these words mean and before you can ask them anything, they walk away to the next  patient,” she says.

These are some of the attitudes that the Kenya Hospice and Palliative Care Association is trying to change by advocating  for the development of curricula and training materials for palliative care  at all the country’s medical institutions.

Dr Ali’s journey in the world of palliative care started with a small advertisement she read  in the Daily Nation seeking volunteers to be friends of Nairobi Hospice.

After reading the advertisement, she walked to the hospice and surprised the management when she announced her intention to work as a volunteer.

“By then, I was working at the casualty ward at the Kenyatta National Hospital and when I was off-duty, I would volunteer my services and that is how my interest developed.”

She was pleasantly surprised by the totally different approach of the workers at the Hospice to patient care.

“It was a caring approach. They paid full attention, focusing and listening to the patients’ needs and assessing their symptoms without undue haste,” recalls Dr Ali.

This was much different from the Kenyatta National Hospital casualty wing, where doctors would spare only a minute for a patient.

“I decided this is the place I would like to be and I started pursuing short courses in palliative care in the United Kingdom after which I joined the Nairobi Hospice  on a full time basis as a medical officer,” Dr Ali says, a radiant smile lighting up her face.

She was later promoted to senior medical officer, a post she held until she quit when she was appointed national coordinator of KEHPCA on February 14, 2007.

“Palliative care is about loving your patient and I’m happy my appointment took effect on Valentine’s Day,” says Dr Ali, whose role model is her late mother Esther Ali, who was a nurse in Kakamega County.

She says the slow pace in introducing a national palliative care policy in the country is one of the major constraints her association is fighting overcome.

“It is sad that we don’t yet have a policy on palliative care in this country. Without such a policy, it will be difficult to make any progress,” says the former pupil of St Xavier’s Primary School in Nakuru County and Moi Girls High School, Eldoret, student.

Another major problem her association faces is lack of guaranteed funding and most of the time she has to write proposals every year to solicit for donations.

Lack of staff is also a problem and currently, the association has only eight workers.

“We live from hand-to-mouth and with the current economic crisis in the world, funding from donors has almost dried up.”

Some of the donors who have  supported the association include Diana Princess of Wales  Memorial Fund, the US-based Open Society Foundation, the African Palliative Care Association, Hospice of Lancaster County, Hospice Care Kenya  and Catholic Relief Services. 

A serious lack of knowledge in palliative care has also contributed to slow awareness of the initiative, she says.

“Many Kenyans think of palliative care as death and this is a misconception that KEHPCA is struggling to erase from the mind of many,” she asserts.

Dr Zipporah Vunoro Ali holds a degree in medicine from Izmir University in Turkey. She has a Masters degree in Public Health from the University of Nairobi and a Higher Diploma in Palliative Care from Oxford Brookes University.

The sky is the limit

She is currently pursuing another Masters degree in Palliative Care with the University of Dundee in Scotland.

She has completed  the International  Pain Policy Fellow programme with the International Pain  Policy Studies Group (World Health Organisation Collaborating Centre for Policy and Communication for Cancer Care, University of Wisconsin).

Dr Ali is also a participant in the International Palliative Care Leadership Development Initiative at The Institute of Palliative Medicine at San Diego Hospice.

She also teaches medical students at the University of Nairobi.

“The sky is the limit and I hope to do my PhD in Palliative Care next year,” she says.

But how old is she I asked before she cut short the interview to prepare for a teleconference.

“Age is just but a number and it remains so for me. You know women are sensitive about their ages,” she responds and bursts into laughter.