Managing pain one day at a time

The place dedicated to holistic pain and palliative care

By Winfred Gumbo

Pain management is a treatment option not so many think of whenever they get sick or have relatives with long-term illnesses.

Many often mistake it to be the end-of-life care for a sick one whenever it is suggested to them as part of treatment. However, this is not and should not be the case.

To have an in-depth knowledge of what Pain and Palliative Care Unit does, Newsline had a one on one with Dr. Esther Nafula, a Palliative Care Physician and the Head, Pain and Palliative Care Unit at KNH.

Located inside the Nuclear Medicine Unit, opposite the Orthopaedic Clinic No. 5, the Pain and Palliative Care Unit at KNH is a location one can barely miss catching a glimpse of. The services offered here have with time gained ‘fame’ and given relief to patients suffering from long term illnesses which come along with discomfort and unbearable pain. The care givers too have embraced the importance of services offered here.

Before the sit down, we did not fail to notice the buzz of activities taking place at the Unit, not to mention the visible hope radiated on the faces of clients from all walks of life who arrived quite early for their appointments which only them can attest to. “The Unit has been in operation from the year 2007; it was established by two members of staff; a Palliative Care Physician and a Nurse who both specialized in provision of palliative care. They offered services throughout the hospital as two individuals and with time, we have grown into seven members of staff, one retired in February 2022. Currently, we have a medical specialist; me, a Medical Officer and four nurses,” said Dr. Nafula as she settled down to talk to Newsline.

“From experience and research, people need palliative care from the time they are diagnosed with life threatening or life limiting illness. In life threatening illnesses, one is likely to survive or complicate quickly resulting into death like Covid-19, Leukemia for children etc. Life limiting illnesses are like advanced cancer, End Stage Renal Disease (ESRD), cardiac failure. We can see that the patient is going to get complicated so from diagnosis to when we see the prognosis is not going to be good, it is better for them to start palliative care because we offer support to the patients, manage their symptoms, improve their quality of life and we also offer support to the family to understand the illness and how to take care of their patients,” added Dr. Nafula.

So, what are some of the stages of pain management offered by the Unit? Newsline asked Dr. Nafula to which she replied; “We are called Pain and Palliative Care Unit because pain is the biggest reason why patients are referred to us.”

“Pain goes beyond physical. When we look at pain and palliative care, we look at it in a holistic way; that the patient has physical pain but they also have psychological, social and spiritual pain. In most cases, you find that the patients who are referred to us, have an illness that is causing a lot of pain. Physically, they are impaired because of the pain, they are not able to work; their social roles have changed causing a lot of suffering. When we do assessment, we approach it holistically then identify the type of pain. If it is a physical one, we give pain killers that are good enough to manage the degree of pain that the patient has, but we also need to give the extra support since most of the time, the patients that come to us are incurable, we cannot eliminate their diseases so they need to be put on pain management for a long period of time,” said Dr. Nafula.

Before one gets the palliative care services, there is a consultation fee of Kshs. 1,150 to be paid via mobile money transfer at the various cash points after which there is provision of consultation services, counseling and family conferences. An assessment is done and a return or appointment date for the next visit is given. For the medication, one buys from the pharmacies that determine the cost of the drugs.

“We have two categories of clinics, there is daily outpatient pain clinic and then we have the specialized clinic. The outpatient clinic runs every day from 8am- 4pm. For Monday and Wednesday, the patients are booked, but, again throughout the week, if there is an emergency, we are still able to take care of them. We also review other patients in the ward. We have specific days for pediatrics, medical and consequently the surgical wards. The approach is referred to as mobile consultation since we attend to patients wherever they are.

The clinic days for Pain and Palliative Care Unit

Monday-Consultant clinic

Tuesday-Pediatric and medicine ward rounds, outpatient clinic

Wednesday-Consultant clinic

Thursday- Oncology ward rounds, outpatient clinic

Friday Surgical, Burns Unit, Intensive Care Unit ward rounds, outpatient clinic

“On average we attend to about 100 patients per week, out of this 20-30 are new patients while the others are reviews for example after seeing a patient once, we need to see them again to confirm how our management is working and any other service the patient needs. Cumulatively, in a month we attend to about 300 reviews.

One patient is scheduled for about 4-5 appointments a month. At the initial point, we identify the needs of the patient; give counseling, family conferences especially in cases where we transition the patient by discharging them for home-based care or a hospice. The number of visits depends on every patient’s needs,” said Dr. Nafula.

She further said; “When discharging, we need a solid plan. Since most of our patients do not come from Nairobi, we do have a network of palliative care providers in the country. We have an online group and meetings coordinated by various bodies like Kenya Hospices and Palliative Care Association (KEHPCA), Moi Teaching and Referral Hospital (MTRH) coordinates some meeting where we interact and know our colleagues who offer palliative care within the city and in other counties.”

“We have a database provided by KEHPCA which gives us the list of hospices and hospitals that offer palliative care and the contact person. Fortunately for us at KNH, we got a donor who gave us a mobile phone in the last Financial Year. With the phone, we are able to contact the Palliative Care Centre and give them the patient’s history. From this they are able to tell us the kind of services they offer i.e. whether it is Home care or a facility. We then liaise with the patients’ families and give them options of available homes closer to the patients. We also give the patients’ contacts and their families too while reassuring them that the care they get from KNH is the same as the one they will get from the community. Our patients are referred from other facilities; outside or within KNH. From within, our health care workers review and identify the needs of a patient then send us the patient for consultation. For those referred outside KNH, we get called by the facility thus we are able to review them from either our clinics or at the casualty,” added Dr. Nafula.

“I can comfortably say that we are quite a unique Unit. Palliative care is divided into two; general and specialized palliative care. General care can be offered by anyone trained to offer palliative care services. For specialized care, a patient is able to get all types of care that they need. Most facilities offer general palliative care so the advantage KNH has is we offer both. The areas without specialized palliative care refer all the cases to us. Additionally, we have the essential members of a palliative care team; we have the chaplaincy, social workers, counselors, nurses trained in palliative care, doctors and medical specialists so we offer all the care that a patient needs,” said Dr. Nafula.

With all these, we are made to understand that success of palliative care is not measured by diseases being cured, but rather the outcome. “The difference we have made to the patient or family member’s life. A patient who is in hospital for 2-3 months due to relatives not being able to care properly, if we are able to teach them how to take care of the patient at home, we are able to reduce the cost of care giving. If we manage the patient and the patient is more comfortable, the relatives who spend a lot of time taking care of them are able to go back to work and fend for their families. Our success is measured by the comfort level of the patient. Palliative care gives the patient and the family an avenue of understanding. We help them to come to terms with reality,” clarifies Dr. Nafula.

“Palliative care is about improving the quality of life; the kinds of diseases that the Ministry of Health (MOH) and World Health Organization (WHO) have said are witnessing a sharp increase in like Non-Communicable Diseases (NCDs) so we help the patients and their families to cope with these challenges during illness. It should be considered since our biggest purpose is to help a patient live life to the fullest despite being sick. If they get care early, we are able to manage the pain despite the type of disease and one is able to go back to work, do whatever they want to despite having a diagnosis associated with pain. When palliative care is started earlier, the patient and relatives are able to benefit from the most aspects of palliative care and are able to deal better with the illness than when it is given towards the end of an illness,” concluded Dr. Nafula.