The patient, just 20 years old, was suffering from osteosarcoma, a type of bone cancer. He had an aggressive tumor, the kind that grows quickly but kills slowly.
When the young man came to the palliative care team at Johns Hopkins Aramco Healthcare (JHAH), he had mere weeks to live. In the time that remained, he wanted two things: to be pain-free and to have his parents care for him at home.
Mohammad Al-Ghamdi, palliative care specialist, and Fatima Al-Rashed, palliative care clinical nurse specialist, met with this patient and his family at their home in Dhahran, Saudi Arabia, assessed his care plan and changed his medication, allowing him to rest pain-free for the first time in many months. He was able to communicate with his family, and his friends could visit and play PlayStation with him. “It was like magic,” says Al-Rashed.
The patient died comfortably at home four months later. “That’s what he wanted,” says Al-Ghamdi. “He didn’t suffer, and that’s what palliative care is all about.”
In the quest to ease the physical symptoms and overwhelming fears that come with chronic pain and incurable disease, palliative care aims to “improve the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering,” according to the World Health Organization.
However, in Saudi Arabia, where JHAH operates, palliative care is still fairly limited. Besides JHAH, only one other medical institution, King Faisal Specialist Hospital and Research Center in Riyadh, offers palliative care to the chronically and terminally ill within a patient population of 8 million people.
This slow adoption of palliative care in Saudi Arabia stems from its relative newness as a medical subspecialty and a lack of awareness about the critical role it can play in patient care and satisfaction. There is also a religious taboo in abandoning hope for a cure and, instead, focusing on care. Samer Abushullaih, a JHAH oncologist, says that in the Kingdom of Saudi Arabia, “Palliative care equals, ‘We’re giving up.’” He quickly asserts, “This isn’t true, of course, but that’s where we are at this point.”
JHAH began tackling these concerns by introducing palliative care soon after Johns Hopkins Medicine and Saudi Aramco formed the JHAH joint venture in February 2014 to create a health care system for the energy giant’s 360,000 employees and dependents. Later that year, a team of Johns Hopkins Medicine experts conducted an in-depth review to gauge the need for establishing a palliative care program at JHAH’s central hospital, Dhahran Health Center.
The review uncovered a tremendous need for comprehensive inpatient and outpatient palliative care programs—a necessity that will grow as cancer and other chronic diseases become more prevalent due to factors such as longer lifespans and harmful lifestyle choices such as smoking and consuming high-fat diets.
In July 2015, JHAH launched a patient-centered, nurse-led palliative care consult service that already has seen more than 450 patients. The patients typically are suffering from cancer and sickle cell disease, the highest source of Emergency Department admissions at JHAH. However, consults have rapidly expanded to other parts of the hospital, including cardiology, nephrology and neurology.
JHAH also opened an outpatient service last October that has treated more than 100 patients and recently introduced inpatient clinics, where clinicians have seen nearly 20 admissions. Additionally, although hospice care is nearly nonexistent in Saudi Arabia, and home care programs are still in their infancy, JHAH has piloted a program to provide home visits to chronically ill patients who are discharged from the hospital.
The long-term goal is to add 20 beds dedicated to providing both palliative care and hospice in the hospital.
Over the last three years, JHAH and Johns Hopkins Medicine have worked together to develop palliative care programs using a multidisciplinary approach that provides patients with comprehensive programs that meet their needs as they change over time, such as offering an inpatient unit and outpatient clinics paired with hospice and home care.
While Al-Ghamdi and Al-Rashed form the core team, other physicians and nurses, pain managers, care coordinators, hospitalists, social workers, pharmacists and psychologists support their work. They also have worked closely with Rab Razzak, director of outpatient palliative medicine at The Johns Hopkins Hospital. Razzak says, “We are taking a team approach to find out who patients are and what their values are. Using this information, we can help direct their care and make treatment recommendations for them. It’s personalized treatment at its best.”
JHAH’s entrance into palliative care is helping to validate it as an important health subspecialty, and encouraging caregivers in the Kingdom to provide a much-needed form of comfort.
“It’s hard, emotionally draining work, but it’s worth it,” Al-Ghamdi says. “I have never been thanked so much in my 15 years as a physician as I have in the last few months as a palliative care physician.”