Al-Bashir Hospital PROVISIONS IN THE PUBLIC SECTOR FOR PALLIATIVE CARE

http://www.albashir-hospital.gov.jo/

Al-Bashir Hospital, Amman’s fully-fledged public sanatorium located in the low-income and densely-populated Ashrafieh area of eastern Amman, provides medical care to government employees and their dependents, underprivileged families in Amman, and patients who are referred from health care centers in other parts of the country.

As one of the largest and oldest hospitals in the country, Al-Bashir is an immensely important institution of care in the Hashemite Kingdom of Jordan. Since its establishment in the 1950s, this public hospital has housed the most private and intimate dramas of a staggering number of citizens and refugees. The hospital provides free medical care to government employees and their dependents, as well as impoverished citizens who have a Social Security number. Though situated in eastern Amman, patients are referred here from health care centers in the furthest corners of the country.

The World Bank has ranked Jordan as the number one healthcare service provider in the region and among the top 5 in the world. The expenditures of the Ministry of Health have been criticized for being staggeringly high for a middle-income country, one which is unsustainable and ill-suited to meet the coalescing conditions of population influx from forced migration and natural population growth. In 2013, government health expenditure was 17.8% of the total government spending. Though not officially part of the national strategy for health, palliative care services have recently begun to be integrated into some existing MoH hospitals, one of which is Al-Bashir.

Individuals who are suffering from sickness in Jordan can seek care from the public sector, private sector, or government hospitals. Citizens without property are guaranteed free healthcare from government hospitals. The two major public healthcare providers are the Royal Medical Services and Al-Bashir, both of which are located in Amman. Al-Bashir is responsible for providing services to 40% of patients in the kingdom.

The extensive sprawl of limestone that makes up the medical medina of al-Bashir encompasses a variety of medical departments, including pulmonology, nuclear medicine, obstetrics, emergency medicine, and oncology. Though many individuals have conditions which require sustained and intensive treatments over a long period of time, palliative care was not formally available until the last couple of years. A partial palliative care clinic has established, but the gargantuan need for this care far surpasses the capabilities of the available resources and certified staff members. Consequently, nurses and doctors who have a diploma certifying their ability to deliver palliative services feasibly can only do so for cancer patients.

Demands placed on the time and expertise of those who are trained in palliative care entails that the amount of time these clinicians spend with patients is limited. Opportunities to provide spiritual, psychosocial, and emotional support are often eschewed by the demands of the hospital. Nonetheless, the services that are available to ameliorate much of the pain that obstructs individual's abilities to function well or think clearly.

Further funding and training are essential to expanding palliative care services. Many individuals receiving care from al-Bashir lack the resources to pursue treatment in private hospitals. People with seriously debilitating conditions may find themselves in hospitals more than they are home. Consequently, they are seen more often as a patient than a person. Palliative care teams with sufficient time, personnel, and medications can safeguard those under their care from the erosion of illness.

Life-threatening illness further robs patients of the time and money to ensure that they are getting care suited to the specificities of their condition and aligned with their values as an individual. To ensure that these patients can claim the highest quality of life they are entitled to, the public must petition authorities to prioritize the expansion of palliative care services in public institutions. Though the quality of life possible is often constrained by condition, it is ultimately defined by the patient. Listening to patients is the foundation for meaningful healing to begin.

Bashir

After raising thirteen children, Bashir has mastered the art of nurturing. Her children are her life’s work. Though the diaspora of adulthood has led her to twelve living daughters and sons to establish themselves as far away as the United States, many of them have returned to Amman to help Bashir fight cancer. In her hospital room, one of her daughters and sons diligently fussed over her. Their hands were always in motion, tireless birds refusing to migrate from their home. Closing the purple curtains bathing the room in a serene and dreamlike glow, refilling her cup of kiwi juice, and offering tender and firm touches of reassurance, her children were devoted purveyors of care.

The compassion they demonstrated to their mother was a reflection of the intensity and sincerity of Bashir’s dedication to her children. Every part of her life, and consequently every part of her illness, has been meaningfully construed by her role as a mother. When she first went to Royal Medical Services Hospital a year ago after noticing a small auxiliary mass that was confirmed to be cancer, she refrained from telling her family about the diagnosis. Fear that her children would be overwhelmed and consumed by the loss of their still-living mother motivated her to stay silent. The solitude of her suffering was broken after she began experiencing relentless gastric pain that forced her to confess that she had cancer in order to explain the drastic changes in her personality and capabilities. Whenever she receives chemotherapy and radiotherapy at al-Bashir Hospital, she is dutifully accompanied by her children.

The worst impact was on my sons and daughters. I am so sad because they always feel like they need me. I want to do something for them but I am unable to. I think of the emotional and human aspect of my daughters and sons.

Bashir admitted to feeling incredibly guilty because of the inadvertent impacts the disease has had on her entire family. Her daughters left their husbands and families to take care of her. She feels as if she has lost her husband to cancer. His blindness had entailed that she was dependent on him. Now, she can no longer do so and feels anxious whenever anyone does the same.

Her family’s adamant loyalty to her is complicated in that they are “feeling with [her] as a patient.” The toll the cancer takes on Bashir is multiplied and amplified as it is transmitted through the bonds tying her family together. The anguish of cancer is contagious and builds upon itself. The collective pain felt by this family for their mother’s distress circles back and is deeply felt by Bashir. This sentimental cycle of hurt is combatted by the same unconditional compassion that fuels it.

Life will not stay the same. A person’s life can be in a good condition and then suddenly get illness and the person must expect everything to be change.

I am a kind person. I was very very calm before the disease. Now, I get nervous, anxious, and sometimes harm others with words. I started to be frank more. I cannot be patient about the mistakes that others do.

For Bashir, her faith in God has helped her most through the cancer. She has learned patience and is adapting to her disease, but continues to be afflicted by gastric and abdominal pain. Though she grateful to have the support of family, neighbors, friends, and doctors, she wishes that they would find ways to minimize the impact of the disease on her family. She hopes that her doctors can work with her children towards this goal. So far, the partially developed palliative care unit at al-Bashir has demonstrated a willingness and ability to do so. For Bashir, being a mother overtakes being a patient. A failure to account for her family is tantamount to a failure to account for Bashir. Her singular identity cannot be divorced from the family that she loves wholeheartedly and fiercely.

Life is not so easy, but the most important thing in life is your health. So you must promote your health and protect the health of others.

Try to live with your suffering without transmitting it to others. Try at the same time to make yourself happy and do not make this suffering influence those near to you.

Fatay

Before he retired, Fatay was a teacher. Considering that he has also raised nine children with his wife, much of Fatay’s identity has been intertwined with positions of authority. After decades of guiding his students and children through the thorny labyrinths of life, Fatay’s fortune has dramatically reversed. Almost completely immobilized by the havoc cancer has wreaked on his cells, Fatay spends his days laying in the hospital bed of Al Bahseer. Though Fatay is naturally contemplative, the captivity of Fatay’s body by his cancer has painfully reinforced the importance of being able-bodied in a society without the aids to accommodate otherwise.

All the services here provided by the team are very good. I suffer from boredom. I feel like the minutes and time move very slowly. It is really difficult to stay in bed doing nothing just waiting for the time to pass.

I wish to be mobile again in a normal way. It makes no difference what kind of medication or care they give for me. I just want to walk and move as normal as I can.

Fatay’s experience with cancer began a year ago, starting with a heavy sensation in his chest that strained his breathing. An MRI revealed he had mass in his lungs. It wasn’t until his 7th of cycle of chemotherapy that Fatay was told he had cancer. In Jordan, doctors often act paternalistically and refrain from telling patients that they have terminal conditions. Cancer is especially feared, taking on . As Fatay attested to, a prevailing cultural belief is that “by telling patients they have cancer, you are shooting them.”

Fatay’s cancer has since metastasized to brain mets, prompting further chemotherapy and radiotherapy cycles. As he gets increasingly weaker from the progression of the disease and the draining process of these intensive treatments, Fatay has come to expect better treatment from his community and hisfamily. He has received the sympathy and support family, colleagues from his past, and friends from his mosque. His son Abrahaim has been especially essential in easing the difficulties of immobilization for Fatay; the reversal in the caregiving dynamic of their relationship is as much of a source of sensitivity as it is pride. Relying on others for simple actions such as turning over and intensely private acts such as going to the bathroom has been the most difficult part of the disease for Fatay. This dependency is a source of frustration and embarrassment, though has also brought him closer to those who support him without hesitation or expectation.

Despite having to rely on others for assistance with mobility, Fatay still acts as a figure that others look to for guidance. He has approached illness as a learning experience that contains lessons that are applicable to himself and to others. Money now has no value for him, supplanted instead by his hope for a cure. His faith has aided him while he awaits his fate, and being led by God makes him feel safe. He is certain that this situation is beneficial for him because it has taught him patience. As Fatay awaits his escape from the purgatory of paralysis, he strives worship God better and be a better man.

I am happy because my illness is like a precaution — not like sudden death. The precaution tells me that if you have sins you can ask God to forgive you and you must get good relationships with others. I hate sudden death. Illness is better than sudden death.

Abed

Abed is among the millions of Jordanians reliant on the free care provided by the government hospital of al-Bashir. His two sons flanked his bedside, carefully appraising those who entered the room. Their family lives about an hour away in Madaba and travels daily to the hospital to see their father. Though faithful sentinels, their vigilant watch can do little to deter the rampage of the cancer within their father’s bones. Their apprehension is starkly offset by Abed’s tranquility. He was markedly reposed, only agitated by the painful sensations the cancer caused him.

The cooperative nature of the medical team at al-Bashir has been the primary means through which Abed says he has been able to manage having cancer. It seemed that for Abed, managing the disease has entailed refusing to be afraid. His mentality towards cancer maintains that cancer is an illness, nothing more and nothing less. He is assured that end of his life will be determined by God, not by disease. His steadfast clarity of his own strength further suppresses the fear that often gives cancer its power. Though the disease has caused him physical debilitations, strength lies in his spirit.

People must be optimistic. Do not believe that illness means death. I am still able to live and adapt pain and my disease.

Believe in God and don’t give up to the disease. Disease is not the cause of death. God is the one who will make people dead or not.

I feel like after getting sick, people love me more. People support me and visit me and I don’t feel like they have sympathy for me. They are loving but not sympathetic.

...I think that feeling empathy for someone means you are weak. I am not weak. I am not weakened by my disease

Though Abed is satisfied to have the continued support of his family and a vigilant medical team, his cancer has undeniably compromised his quality of life. His mobility is severely limited because of the extreme pain he feels due to the cancer spreading throughout his body, putting unabated pressure on his tissues in the areas where the disease has taken root. A combination of fentanyl patches, morphine, and paracetamol allow Abed to get two to three hours of respite from the agony. In these moments, Abed is able to practice religious rites that allow him to feel closer to God. His relationship with God is as essential as his IV drip, replenishing his ability to steadfastly surmount the disease and threat it poses to his life.

I am praising God for everything. There has been some impact of illness on my family, but I still take care of my family even though they take care of me. My philosophy for pain is that it is something that will forgive my sins and make me go to paradise. Without suffering, life would be ended once a day.

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