SPECIAL REPORT
Kuwait Palliative Care Center is the only freestanding palliative care hospital in the Arabian Gulf region. With a 92-bed capacity, it is the largest facility of its kind in the world.
Palliative care is probably the most misunderstood specialty in the entire field of medicine. That’s because for most people, the medical profession is synonymous with saving lives. For patients with life-threatening illnesses, just as important as the gift of life is the right to have a better quality of life until a peaceful, dignified, and pain-free death.
Unless you’ve endured an end of life experience with a loved one suffering from a terminal illness, it’s difficult to really appreciate the importance of palliative care. I learned first-hand what immense comfort and relief are provided by the caring, professional staff members of Kuwait Palliative Care Center when my father was admitted there during the final days of his life. That’s why, during a recent interview with three doctors at the facility, I wasn’t surprised when a man whose wife had just died came to thank the staff for their services.
“You perform a great humanitarian mission, you are all amazing, and I can’t thank you enough for the wonderful care you gave my wife,” the elderly Kuwaiti gentleman said to the doctors.
“We often have family members coming to thank us personally after a loved one has passed away,” said Dr Ameena Al-Ansari, Palliative Medicine Senior Specialist and Head of the Palliative Medicine Department.
Specialist in Palliative Care Dr Abdulrahman Al-Kandari and Oncologist Dr Sobhy Mustafa confirmed her statement. “Family members appreciate the fact that we improve the quality of life and relieve suffering for the patient, and we do everything we can to support them as well. We work as a team to address all aspects of the patient’s and the family’s situation: physical, psychological, social, and spiritual. This is the magic difference between palliative medicine and any other branch of medicine,” said Dr Sobhy.
“We offer a specialised multidisciplinary approach. Other hospitals just don’t have the time and staff to provide an impeccable assessment and to prevent and relieve suffering for the very complex situation of the patient and the family,” said Dr Ameena. “When the relatives of someone who has passed away come to thank us, it underscores the success of palliative care principals.”
On the other hand, some of those who don’t understand the concept of palliative care heap scorn and verbal abuse on the doctors when they offer their care to a relative. Dr Sobhy recalled his experience with one woman who cursed and shouted at him when he offered her a bed for her mother in the Palliative Care Center.
“The woman screamed at me, ‘How dare you suggest I put her in that hopeless hospital of yours?’ Her mother was in a government hospital, in terminal condition from cancer, crying loudly from excruciating pain. We could have given the lady the comfort care she needed, we could have relieved her suffering in our center.
“After forty minutes of successful communication with the patient’s daughter, she accepted the palliative care idea but not our center. She preferred to have her mother followed up at home. As there is still no palliative home care, I managed the patient’s symptoms in the ward in the general hospital until the end.”
Two years before this incident, my father had been in the same hospital for two months. Finally the doctors had conceded that he didn’t have long to live; it could be a matter of weeks or even days they said. Like the female cancer patient, he was constantly crying or shouting. Although he had been a kind, peaceful, polite person all his life, his illness made him agitated. He kicked and flailed his arms and tried to roll out of bed with every last ounce of strength he had. “Get me out of here!” he kept yelling.
It was excruciating to watch. It was disturbing for the other patients and their families in the ward. Most of all, it must have been horrendous for my father.
The hospital staff offered no solutions. Most of the time the overworked nurses rushed past, avoiding eye contact, ignoring us. I was forced to hire two full time private nurses so that my father would receive basic care night and day.
During this trying time my constant companion was my sister-in-law, Barbara, who had flown in from Los Angeles to help me. At home, Barbara volunteers with an organisation called No One Dies Alone (NODA). Their mission is to provide a reassuring presence to dying patients who would otherwise be alone. So Barbara stays in the hospital’s palliative care unit with dying people who have no loved ones to be with them, doing what she can to comfort and soothe them. She knows the value of palliative care first-hand.
Barbara was shocked and angry by my father’s hospital experience here. “It doesn’t have to be like this, it shouldn’t be like this! He needs palliative care,” she kept repeating.
When we were able to catch the doctors on their rounds we asked for palliative care for my father. They shook their heads. When Barbara told them about end-of-life care in her hospital at home they admitted, “You know much more about palliative care than we do.”
My father continued to suffer from worsening delirium. A psychiatrist came at our request but said the hospital didn’t have the necessary drugs to treat my father’s condition. At this stage I wasn’t sure how coherent my father was but I told him, “We’re going to get you out of here.” In response to those words I saw a flicker of hope in his eyes.
Barbara and I decided we would demand my father be discharged from hospital. We would get the necessary equipment and do our best, with the help of the home care nurses, to take care of him at home.
I called a friend who works in the medical profession and asked her for advice on how to best meet my father’s needs at home. Her instant response was, “Your father needs palliative care. Let me send a request to the Palliative Care Center for one of their doctors to come and assess your father for possible admission in their facility.”
We were incredibly relieved to hear that palliative care actually exists in Kuwait. But how quickly could my father be admitted to the facility? Every day, every moment had become a torture for him and for us.
The doctor came that very day and immediately agreed that my father should be admitted to the Palliative Care Center. He ordered an ambulance, said he would see us there soon, and returned to his hospital.
Hours passed. Despite our repeated requests, the hospital staff made no discharge preparations. My father was becoming ever more agitated. He had been suffering in this hospital for two months and we had been suffering with him. Totally exasperated, my patience at an end, I went to the nurses’ desk and began shouting. I told them I would continue to shout until they prepared my father for discharge. I felt dismayed that I had been forced to behave in such a manner but they complied with my request.
Once we arrived at the Palliative Care Center, everything changed instantly and drastically for the better. While hospital staff got my father settled in his room, assessed him and made him comfortable, Barbara and I were whisked off to the Counseling Room. In this cozy room family members meet with doctors and nurses. They are given information and asked to share in the formation of a management plan for their loved one. But what really impressed us was that the doctors and nurses gave us their full attention. They sat and listened as if they had all the time in the world.
For over an hour they gently asked us questions and we talked about my father. We talked about the agony he had been through at the other hospital but we also talked about him as an individual, about what kind of person he was, what he used to do for a living, the activities he used to enjoy. After having been disregarded at the other hospital for so long, the experience was cathartic.
Barbara and I were immediately impressed by the kindness and compassion of all the Palliative Care Center staff. During the course of the day, as we sat with my father in his pleasant and spacious private room, more staff members kept stopping in to introduce themselves and ask if we needed anything, among them the head nurse, the social worker, the physiotherapist. For my father, and for Barbara and me and the rest of my family, this was part of palliative care’s magic difference that Dr Sobhy had mentioned.
One of the doctors explained that they were administering intravenous medications to treat my father’s pain and delirium but that it might take a couple of days for the agitation to completely subside. Medications used for palliative patients are used differently from standard medications. In conventional treatment, high doses of certain medications used for the alleviation of symptoms are viewed as hazardous and seen as inviting addiction. In palliative care the patient’s circumstances are different.
“We have significantly increased our consumption of symptom control medications over the last one and a half years,” said Dr Ameena. “Our essential palliative care medicines include treatment for pain control, agitation, breathlessness, severe anxiety, depression, and other refractory symptoms. We manage the patient’s total suffering involving a broad range of concerns.”
Dr Sobhy is enthusiastic about the benefits of palliative care medicines. “Since Dr Ameena joined the Center in 2014 we have become much more confident in our use of medications for symptom control. She and Dr Abdulrahman, as Palliative Care Specialists, have shown us how to safely and effectively use drugs such as morphine in order to provide the patient with better quality of life,” he said.
“I have been working as an oncologist here since we received the first patient in December 2010. Our official opening was in May 2011. Having two Palliative Care Specialist doctors to teach us more about this type of medical care has really made a significant difference. I am very happy and satisfied to work here because I can focus all my efforts on relieving suffering.”
“The method of administration for palliative care medicines may also differ,” added Dr Sobhy. “Many patients lose their ability to swallow so therefore we can give drugs subcutaneously, intravenously, or as a transdermal patch for example.”
I thought of when my father was in the other hospital and the nurses were trying to give him crushed up calcium tablets by mouth, although swallowing had become almost impossible. We had stopped them, saying “He needs comfort care, not calcium.” But getting them to alter their protocol had been a constant battle.
In the Palliative Care Center, nurses follow the palliative care protocol, working as a tightly-knit team with the other medical staff, treating patients as individuals, following the management plan that was specially tailored for them.
According to Dr Ameena, unfortunately there is a shortage of Arabicspeaking palliative care nurses in Kuwait Palliative Care Center. “They are essential in breaking the communication barrier with some patients and their families,” she said. “We also have a shortage of Palliative Medicine physicians.”
On the morning that I visited the center, Dr Ameena and her colleagues were celebrating the official designation of palliative care as a sub-specialty in Kuwait’s Ministry of Health. “This is a big achievement,” Dr Ameena said with a smile. “In the beginning I felt that to establish this department was like a dream, but people see what we’re doing and the huge need for palliative care is starting to be recognized.”
Kuwait Palliative Care Center is the only free-standing palliative care facility in the Arabian Gulf, and with 92 beds, it is the largest in the world. Currently, however, only four wards with seven private rooms in each ward are in service, thus providing 28 available beds. Lack of sufficient specialised medical staff is one of the reasons that more wards are not yet in operation.
At this time, Kuwait Palliative Care Center caters only to cancer patients, although the doctors admit there is a need for palliative care for other serious conditions such as end stage renal, cardiac, and respiratory diseases, advanced neurological and hematological diseases, and AIDS, in order to control their symptoms and relieve their suffering. A palliative care treatment plan for non-cancer patients in other facilities can be drawn up by the center’s doctors at the request of the patient’s primary care doctor.
“As a team we accept consultations from other peripheral hospitals to control symptoms associated with the life threatening conditions mentioned above,” Dr Ameena said.
“Along with raising public awareness it’s also very important to increase the knowledge and improve the attitude toward palliative care among doctors and other health care professionals. That’s why we’re holding work- shops, lectures, and seminars on palliative care for health care professionals. We’d like to offer a Fellowship to train doctors to work as palliative care specialists. The World Health Organization recommends that palliative care should be included in all medical school curriculums.
“Doctors need to know not only how to treat patients medically but how to communicate with them and their families. They have emotions, fears, ideas, expectations; we have to care about this. Physicians in all hospitals should at least be trained to provide general palliative care service at their health care facilities referring only patients with complex or refractory symptoms that need specialised palliative care. They need to know when it’s time to call us,” concluded Dr Ameena.
Both Dr Abdulrahman Al-Kandari and Dr Ameena completed their studies in palliative care at the King Faisal Specialised Hospital in Riyadh, Saudi Arabia. “Saudi Arabia, with five Palliative Medicine Fellowship programs in five different hospitals, has the most advanced and widespread Palliative Medicine in the Middle East. They have many specialised doctors and they are trying to cover all facilities in Saudi Arabia with Palliative Medicine. We have learned a lot from them,” Dr Ameena remarked. “Other Gulf countries have only palliative care units in their main cancer hospitals.”
Kuwait’s palliative care specialists would also like to see the establishment of an official program for palliative home care. Most people want to die at home, most families would like to have their loved ones near them at home.
“We need strong official and financial support to start such a program, but in the long run it will actually save money,” said Dr Ameena. “It will decrease hospital costs, ambulance use, and emergency care services. Most importantly, it will save patients and family members the traumatic experience of the ambulance ride to the hospital and waiting for hours in the cramped and noisy conditions of the emergency room. We are receiving many requests for palliative care at home and it is something that is not difficult to implement.
“We already have multidisciplinary teams in our center to offer multidimensional care to the patients. The teams include physicians, nurses, psychosocial workers, physiotherapists, and dieticians.”
When dealing with the doctors and other staff at Kuwait Palliative Care Center, one can’t help but be impressed by their passion for their mission, their devotion, their warmth, and their conviction. How do they maintain such a positive attitude when constantly working in the face of death?
The doctors point out that palliative care affirms life. It offers a complete support system to help patients live as actively as possible until death. It intends neither to hasten or postpone death; ultimately, everyone will die on their day.
As Dr Ameena explained, “The aim of other treating doctors working in the medical field is to cure the patient from his disease and they may fail in doing this. The aim of palliative care is to provide care for patients facing life threatening illnesses, so the care cannot fail. We are aiming to add life to years, not years to life. My job is to relieve patients’ suffering since diagnosis and help them to live and die with dignity. I do everything to relieve the patients’ suffering when everyone else says nothing more can be done.”
When my father passed away at Kuwait Palliative Care Center, peacefully and painlessly during the night of March 2, 2014, he was one of the many patients that had been granted the ultimate final right of death with dignity, and for that, like many other families, we will always be grateful.