UHKDU Palliative Care Services Unit

By Sajitha Prematunge

Fifty six year-old Somalatha was diagnosed with end stage cancer and was already bedridden by the time she was admitted to hospital. With proper care she was able to walk again and was looking forward to making a secure future for her children. But tragedy struck Somalatha’s family again. After her husband suddenly died of a stroke, she was forced to fend for herself. Soon after her condition worsened. Unfortunately Somalatha didn’t live to see her kids receive scholarships with the help of the dedicated University Hospital, Kotelawala Defence University staff, who cared for her.

Although her name is fictitious her predicament is all too real and thousands like her die annually without vital palliative care they are denied just because they couldn’t afford it. It is true that the Sri Lankan healthcare system is one of the best in the world, in that it is almost exclusively free of charge. But no system is infallible. It is patients like Somalatha who have to bear the brunt of its shortcomings, falling through the cracks of the Sri Lankan healthcare system.

In this light, University Hospital, General Sir John Kotelawala Defence University Palliative Care Services Unit, inaugurate on February 3 should be lauded as a timely intervention, although they had been practising palliative care long before. The UHKDU Palliative Care Services Unit was initiated at a time when repeated attempts to establish such services by various institutions had failed.

Palliative care

“The simple definition of palliative care is to optimise the quality of life of patients and care givers or loved ones, from the moment the patient is diagnosed with a chronic illness. The definition of ‘chronic’ here has wide implications, ranging from terminal cancer, schizophrenia, chronic neurological diseases, motor neuron disease, stroke to multiple fractures. Any of these conditions require palliative care,” said Consultant Oncologist Dr. Sachini Rasnayake.

It is difficult to believe that this personage of slight build heads Palliative Care Services at UHKDU, deftly fielding inquiries of changes to medication, pain management, financial issues and fears of patients, while breaking bad news to patients as gently as possible on an all too regular basis. “The responsibility of the palliative care giver is to uplift lives of the patients physically, psychosocially and spiritually,” said Rasnayake.

Goals

UHKDU Palliative Care Services was established with four main goals in mind. The first of which was to appoint a palliative care team. Rasnayake said that having so many expert consultants from different fields within the UHKDU was an added advantage. “A number of consultants volunteered to provide their services,” said a grateful Rasnayake. She opined that this team spirit was vital in establishing palliative care services. “A team of consultant anaesthetists volunteered to conduct a pain management clinic,” said Rasnayake, who pointed out that pain management is key priority when dealing with any chronic illness. “A group of physicians volunteered to attend to medical issues of palliative care patients. Onco-surgeons and the surgical team looks into the surgical aspect of palliative care.” For example, a Percutaneous Endoscopic Gastrostomy (PEG) tube is surgically inserted into a patient’s stomach through the abdominal wall for feeding purposes. “This is much more desirable than the nasogastric (NG) tube. An NG, inserted through the nose, past the throat, and into the stomach, is very uncomfortable for the patient.”

The team at UHKDU has performed the procedure on multiple long term paralysed patients and patients with throat cancers. “Long term bedridden patients require catheter care and may suffer from urinary incontinence, accidental or involuntary loss of urine; or faecal incontinence, accidental or involuntary loss of faeces or flatus.” Rasnayake explained that indwelling catheters could cause a host of other problems such as urinary track infections. “Genitourinary (GU) surgeons are tasked with addressing such issues.” Rasnayake appreciated the fact that the few oncologists at KDU were able to volunteer for palliative care despite their heavy workload. “Palliative care at UHKDU has no designated Medical Officers. But with much difficulty we were able to secure one nurse. The whole oncology team along with the pharmacists are all experts at palliative care and are wholeheartedly supportive of this initiative.” The rest of the palliative care team consists of a dedicated group of psychiatrists, psychologists and ENT surgeons.

Their second goal is to conduct ongoing medical education programmes. She explained that the team, including the supporting staff had undergone training. “By 2022 we hope that the whole hospital staff would be trained in palliative care,” said Rasnayake hopefully. “It’s vital that everyone undergoes training, since every service accompanies a component of palliative care.” Rasnayake informed that virtual teaching clips were used to train and online assessments used to ascertain the success of candidates, validated through a certification process. “If there is one thing we learned from the COVID-19 pandemic, it’s how pragmatic and applicable virtual training is. For example training a whole staff at the same time would mean that they would have to expend vital work hours. But with virtual training clips the potential care-givers can learn at their own pace.” UHKDU, Executive Director and Senior Consultant Psychiatrist, Dr Jayan Mendis was the first to identify the crying need for a palliative care facility within the University Hospital. Mendis reiterated the significance of such an initiative, pointing out that the training students receive at the facility will be crucial.

The third goal is to provide palliative care home visits. Rasnayake explained that such a service would be beneficial to bedridden patients who experience financial constraints. “Unfortunately we still don’t have a free a

mbulance service.” Rasnayake said that while serving in Polonnaruwa the Cyril Dharmawardana Foundation provided an ambulance service free of charge, which facilitated Rasnayake’s travel to distant parts of the country so she could provide palliative care services to patients who could not afford to travel. “With home visits we can address issues such as constipation, administer IV drips, train care givers and optimise the condition of the patient’s accommodation, including lighting and ventilation.”

The fourth goal is to establish a palliative care hospice. “Palliative Care Unit, Karapitiya Teaching Hospital, Onco Sergeon Dr. Krishantha Perera has achieved just this,” said Rasnayake. “There isn’t such a hospital in Colombo.” She explained that a hospice would see to the psychosocial well being of a patient, in a homely environment, providing symptomatic support. Towards achieving their last goal KDU Vice Chancellor Major General Milinda Peiris has announced his agreement to allocate 10 such rooms from the KDU hotel, to extend this facility to short term palliative care patients. “For the first time in Sri Lankan health tourism, UHKDU has introduced the hospital hotel concept,” said Peiris. “Moreover, in an emergency the patient can be transferred to the hospital in less than five minutes.”

Rasnayake informed that a host of other services concerning palliative care is provided in-house by physiotherapists, psychologists and social workers. Providing radiation therapy at the palliative care facility is also in the works. “But to establish such services and facilities we must have the man power and resources,” Rasnayake pointed out. Rasnayake said that manpower, resources and understanding are integral to palliative care, aspects Sri Lanka is lagging behind in, compared to developed countries. “Unfortunately this has not been well communicated to the community. Most don’t know how they can provide such services,” said Rasnayake. She explained that this is the greatest difference between a hospital and a hospice. “At a hospice you can offer your services, clean and wash patients, subject to supervision, and even entertain them. In a hospital there are rules and regulations that prevents this.”

“One doesn’t have to be medically proficient to practise palliative care. Many who’ve had fallen on hard times in their lives later want to help others through such times,” said Oncology Department, Research Assistant, Dr. Sandini Liyanage. Liyanage and her ilk are stuck between a rock and a hard place. “We want to help, but there’s only so much we can do. We can only treat the patient, with chemotherapy or radiotherapy. But a lot more goes on in the patients’ lives. A terminal illness entails a host of psychosocial issues.” For example, Liyanage explained that, from the moment someone is diagnose with stage four cancer, they’ll invariably start to worry about everything from money, treatment to how to educate their children. “They will mentally fall apart.” Liyanage who is volunteering for palliative care service said that the services are available to any patient, although most who currently receive services are oncology patients. “It’s not just about treating the cancer. The families are also devastated. Cancer takes not only lives but a lot of other things from the family the patient leaves behind.”

Socio-economic constraints

As medical officers of palliative care those like Liyanage are able to build a complete picture about the socio-economic background of a patient by studying their history. She pointed out that most of the patients who require palliative care services are of lower socio-economic backgrounds, who were struggling to make ends meet when the illness in question exacerbated the situation.

“That’s why communication is vital. Palliative care strives to provide a patient-friendly environment,” said nurse Yashmi Kaushalya. Oncology Department nurse, the only such working full time for the Palliative Care unit, Kaushalya is a far cry from the average nurse. With a temperament befitting palliative care, Kaushalya’s calm and measured speech will no doubt assuage her patients. “As nurses we are required to communicate with patients and family members.” Palliative care nurses must be privy to psychological, physical, socio-economic problems of patients. She opined that palliative care is instrumental in caring for patients who have little family backing.

As a nurse new to palliative care, Kaushalya has not broken bad news to a patient’s family yet, for which she would accompany Rasnayake tomorrow. “It can’t be easy breaking bad news,” admitted Kaushalya. “In fact, our services have a lot more to do with caring for patients psychologically than physically,” said Kaushalya. “This is what makes palliative care nurses different from the average nurse.”

“When the patient does not have money to buy drugs, palliative care ends then and there. Although palliative care has been practised for ages, when social and financial capability is curtailed the quality of service drops. This is why social and economical support is vital,” admitted Rasnayake, who had bought drugs for patients out of her own pocket on several occasions. She reiterated that trust and continuous social care services and above all financial support is imperative for maintaining sustainable palliative care.

Rasnayake is positive that money will not be an obstacle for the continuity of the programme. Cancer Care Association founder and Chairman of the National Authority on Tobacco and Alcohol, Dr. Samadhi Rajapaksa provides much needed support, while Indira Caner Trust Director Dr. Lanka Dissanayake and Cancer Society President Anuja Karunaratne have pledged support for the programme. Rasnayake emphasised the significance of establishing a palliative care trust and a governing body to coordinate funds and all stakeholders, to ensure continued support for patients. Rasnayake appreciated the support of senior journalist and former diplomat late Bandula Jayasekara in making the programme a success.

Rasnayake readily admits that Oncology Department Head, Senior Oncologist Dr. Jayantha Balawardhane is the driving force behind the programme. Balawardhane explained that the main objectives of palliative care is to relieve and comfort patients. He pointed out that palliative care can be conducted in the ward, acute care hospital, palliative care unit or hospice, hostel, nursing home, elders home or one’s own home. “Place is immaterial when it comes to palliative care.” Balawardhane emphasized that pain relief is an integral part of palliative care. “Relieving pain is half the battle in palliative care.” Other discomforts such as bedsores, loss of bladder and bowel control adds insult to injury.

Psychosocial issues

Psychosocial issues such as sense of abandonment, anger, frustration and resentment exacerbate the psychological condition of the patient. “Patients maybe embittered, therefore we must address such psychosocial issues with care,” reiterated Balawardhane. Social abandonment, resulting from stigma, due to myths such as cancer is contagious or associating those undergoing chemo or radiation therapy could adversely affect others, and busy schedules that prevent loved ones from visiting are among the major social issues faced by palliative care patients. “Cosmetic mutilation is also a major issue,” pointed out Balawardhane. Treatment results in hair loss, palloring of skin and weight loss and this contributes to patients becoming social outcasts.

“Palliative care must also respect cultural differences and religious inclinations. For example, one who may believe in reincarnation may attempt to weigh one’s merits and demerits, contemplating on where he or she would be reborn. All this contribute to the suffering of the patient,” said Balawardhane. Quoting from American neurosurgeon, pathologist and writer, Harvey Cushing, Balawardhane said that, “‘A physician is obligated to consider more than a diseased organ, more even than the whole man – he must view the man in his world’, meaning that palliative care is holistic care. Most importantly it should be patient centred, family centred.” Palliative care should be comprehensive, leaving no stone unturned, continuous and proactive, delivered by a coordinated team and subject to regular review.”

The palliative care team consists of nurse, dietician, pharmacist, occupational therapist, paramedical aid, General Practitioner, bereavement support worker, social worker, councillor, domestic care provider and even the funeral director plays a vital role in the team. Palliative care is a support system that facilitates an active lifestyle for as long as medically possible. “This requires a lot of distractions such as games like carom, card or scrabble, listening to music or watching TV.” Palliative care practitioners use their clinical expertise and judgement to anticipate problems and treat them proactively before they manifest. “Integration of psychological, emotional, social and spiritual aspects of care between patient, family and caregivers is imperative to the functioning of the palliative care process,” emphasised Balawardhane.

Palliative care trains the patient to regard dying as a normal process, by improving the quality of life for the remainder, explained Balawardhane. “Quality is subjective, it differs from person to person.” he explained that the care provider must not enforce what he or she assumes as ‘quality’ on the patient and in stead must cater to patient demand. Palliative care promotes a degree of acceptance by the patient and immediate family, regarding the final outcome and assists the patient in the decision-making process that would result in a peaceful and dignified demise. Bereavement support helps loved ones to accept loss and does not abruptly stop with the demise of patient under palliative care. “The objective is to give life to days, whatever the remaining number of days, and not give days to life.”