Cancer Care at Children's Welfare Teaching Hospital

Dr. Salma with patient, 2013

Dr. Salma with patient, 2013

"Dr. Salma Al-Hadad is the kind of doctor whom you would select for your own terminal illness. My notes, scribbled in near-incredulity into my pocketbook that year, fill dozens of pages.

"...Dr. Al-Hadad cuddles the children who she knows will soon die. She jokes with thirteen year old Karrar Abdul-Emir, who is frightened of his own leukemia but too frightened to take the drugs which may save him. She introduces me to each child by name without ever looking at the chart at the bottom of the beds to check their identity.

"'Now here is Cherou Jassem and she has put on a party dress for you to take her picture.' Dr. Al-Hadad laughs again.

"..She asks if I will send the copies of my photographs of the children to Baghdad as soon as I can. In a month or two Amna may well be dead. Cherou too. Dr. Al-Hadad wants them to see my photographs before they die."

The Great War for Civilization: The Conquest of the Middle East, by Robert Fisk, First Vintage Books Edition, February 2007, Pg.730

Background

Iraq is now considered a low-middle income country (LMIC). It wasn’t always so. Iraq had one of the best health-care systems in the Middle East before 1990; a system of primary, secondary and tertiary care facilities that provided free, good quality services (World Health Organization, 2003). This changed dramatically after 1990. UN Sanctions, two wars and the aftermath of violence, political, economic and social instability created a health care crisis in the country. Overall health --especially the health of children and other vulnerable groups-- declined. The U5MR-- "...the single most significant indicator of the state of a nation's children..." increased from 50 deaths per thousand live births to 130 in the decade 1990-2000” (UNICEF). It was a perfect storm: Iraqi's overall health and well-being was declining at the same time the capacity of the health care system was in collapse at every level.

There were some changes, some improvements after the regime change in 2003. But Iraq, and CWTH, is still far below the expected standard, providing almost the same level of services we provided thirty years ago. Improvement has been slow and difficult to achieve in the context of ongoing instability and violence. Hospital and private laboratories are still functioning without national or international quality control. Doctors and other health care professionals continued to leave the country especially during 2006, in response to the increased violence and sectarian tension. The current Iraqi health care system is still extremely compromised.

"The enormous challenges of the last decades make our work going forward difficult. Researchers confirm what we already know from our own personal and professional experience: people living in societies ruptured by war and natural disaster face greater levels of emotional distress and yet these are the very ones in need of productive, healthy citizens."

Mollica RF, Cardoza BL, Osofsky HJ

About Children’s Welfare Teaching Hospital

CWTH is a tertiary hospital of 240 beds; the oncology unit has a capacity for 30-40 beds, but the number of actual inpatients ranges from 60 - 80. The hospital is managed by the Government of Iraq and the staff — nine oncologists, one fellow, six residents (changing every two months) and twenty-five nurses—are governmental employees. Dr. Salma Al-Hadad is the unit Director. Services are free, but somewhat limited. Patients were referred and came to this unit from all parts of Iraq prior to 2003. However, the subsequent lack of security made it difficult for referred patients and families to travel to and from the hospital. And, new pediatric cancer units have been constructed in Kurdistan.

The hospital has an average of 300 newly malignant cases per year; ranging from 235-398 over the last twelve years. The average registered mortality rate over the last ten years ranged between 10-20%. Two thirds of these occurred during induction as a result of the lack of optimum supportive care. Two thirds of pediatric patients who come to CWTH are in an advanced stage of disease. When a family reaches our centre, they are either referred for further management after being told about the diagnosis, or they are undiagnosed and referred for diagnosis or referred without being told about the disease or finally, they come for a consultation and diagnosis without referral as their case was mismanaged elsewhere.

A child's cancer diagnosis is shocking for a family in any circumstance. It is perhaps even more difficult in a post-war society, where everyday life presents so many significant challenges.

The median total diagnosis delay was 55 days (range 3 days to 36 months), the median physician delay was 43 days which is more than double the longest doctor delay mentioned in the literature, although the patient's delay in seeking diagnosis/treatment is comparable to that mentioned elsewhere. This late diagnosis along with iatrogenic complications -- steroid pre-treatment in Acute lymphoblastic leukemia patients misdiagnosed as rheumatoid arthritis or acute ITP, masking the cancer diagnosis and inducing partial remission and relapse, an aggressive intestinal resection for intestinal lymphoma, enucleating the eye just to take a biopsy, a ruptured wilms tumor as a result of an inexperienced surgery -- can make for a poor prognosis.

Nurses and Nursing

Rasmiya, January 2004

Rasmiya, January 2004

Nurses in our unit face a challenging situation; they put in many hours of work with more patients in serious or critical condition than their peers on other units. Absence of a central catheter, using only peripheral veins in children puts more burden on them as they spend a significant amount of time trying to find a small vein for the cannula. And, we lack the proper equipment to use infusion pumps. All of this makes the nurse's work more challenging.

The situation makes it difficult for us to attract enough experienced and well-qualified nurses who are in short supply in Iraq anyway. Our nurses are mostly secondary school graduates; only 25% are college graduates. Many of them lack proficiency in English, the official language of medicine in Iraq. They have not received basic education or training in nursing and medical fundamentals.

In many cases what our nurses lack in basic education and practice is offset by a more-than-usual passion about the patients. We know this counts for a lot, in terms of quality of life in the hospital for these children and parents. And, the caring attention and hard work of the nurses eases the burden of care on the doctors. We recognize the unit needs a team of well-educated nurses whose specialty is pediatric oncology.

"I am like a fish, and the unit is my water. If I leave the unit, I will die."

Hiba Ali Najaf Najaf, CWTH nurse

The Diagnosis, the Child and the Family

A child's cancer diagnosis is shocking for a family in any circumstance. It is perhaps even more difficult in a post-war society, where everyday life presents so many significant challenges. The child, at the time of diagnosis at our hospital, is tired, exhausted from the disease and its complications. They may be suffering from iatrogenic complications as a result of earlier, improper treatment or mismanagement of the disease.

Parents are shocked when they hear that the scientific and medical equipment and tools needed for the proper diagnosis and treatment of their child's illness are either not available or of questionable standard. The services are free but many things are missing and ultimately the costs for the patients are much more than they expect, whether for surgical intervention or lab tests or medicines or frequent visits to private clinics. In addition, they suffer knowing it can be fatal. And, because the disease is still not well understood in Iraq parents worry that revealing information about their child's illness will affect their relationships with other family members and with members of their community --teachers at school and neighbors at home.

Dr. Mazin with a patient, 2014

Dr. Mazin with a patient, 2014

Our burden is this: like all doctors we care deeply about these children and families yet we find, that for reasons beyond our control, we cannot give them the level of help, the care they need in these moments, or indeed in the weeks or months that follow the diagnosis.

Dr. Mazin and Dr. Salma writing on Palliative Care in Iraq, 2014

Palliative care programs, as they exist in other places, would start here, with a well trained team to help from the moment of diagnosis. In Iraq, however, these difficult moments are the responsibility of the doctors.We do our best to create a positive connection with the child and family, but at the same time we are already worrying about practical matters that will affect us and the child: about providing a bed for the newly diagnosed patient in the unit, and the need for more medicines which are often not available or inconsistently supplied. We must discuss the issue of visitation by extended family members, which our hospital policy does not allow. This often angers parents to the extent they think of refusing treatment options.

There is no multidisciplinary team at the hospital - no social workers, teachers, spiritual advisors or child life therapists who might improve the psychological state of the child or family or nurture their spiritual strength, no one who might distract them with meaningful activities. Doctors are the ones who must explain the rules and regulations, explain all aspects of the disease to the extended family members; the ones who must help parents face their fears and anxieties about their child and discuss solutions to other aspects of their lives that will be affected by the child's illness, such as loss of the father's and/or mother's daily wages.

Cancer Treatment in Iraq

In terms of drugs, opioids have been used in hospitals, in a limited amounts for many years, mainly for post-operative patients, burns and those with myocardial infarctions. The primary opioid was pethidine. The medical establishment in Iraq, as in other countries, worried about drug addiction and the improper and over-prescription of narcotics by health professionals. As a result the supply of morphine was disrupted and the dispensing of these drugs is still restricted.

The primary, available drugs at CWTH are: propoxyphene, codeine and acetaminophen. In 2013, morphine became available in our unit but only to inpatients as it is an injectable not in oral form. Doctors must submit special forms to be signed by the hospital manager; for each request only one ampoule can be dispensed.

Another drug was introduced recently: Fentanyl 8.4 mg per transdermal patch; however there are, as yet, no clear regulations for dispensing these drugs. Because of the restrictions and limitations mentioned above, drugs are reserved for patients who are in the advanced or end stages of disease such as unresectable tumors or severe pain from deep venous thrombosis. They are not prescribed for those who have pain from peripheral cannulation, mucositis or extravasations.

High income countries account for less than 15% of the world population, yet more than 94% of global morphine consumption. ...In the case of strong opioid analgesics, and considering a wide spectrum of types and causes of pain, including cancer, 83% of the world's population (5.5 billion people) live in countries with low to nonexistent access, 4% has moderate access, and only 7% has adequate access."

~ Closing the Cancer Divide: A Report of the Global Task Force on Expanded Access to Cancer Care and Control, p 52