International Palliative Care

A Comprehensive Palliative Care Program at a Tertiary Cancer Center in Jordan

American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(2) 238-242 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113513316 ajhpm.sagepub.com

Omar Shamieh, MD, MBA1, and David Hui, MD, MSc2

Abstract Context: The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families. Objective: To describe the KHCC palliative care program and its integration into the oncology care. Methods: Narrative review of our palliative care program. Results: Patients with cancer at KHCC have access to an interprofessional palliative care at different settings. In 2012, the inpatient team saw 400 consultations and 979 referrals and admissions. The outpatient clinic had a total of 1133 patient visits. The home care program provided a total of 1501 visits. Our program is a regional center for education and training and actively conducts research. Conclusion: Our palliative care program may be a model for successful delivery of comprehensive cancer care in the Middle East. Keywords King Hussein Cancer Center, palliative care, supportive care, interdisciplinary team, opioids, home care, integration, Middle East

Introduction Patients with advanced cancer often experience significant physical and psychological symptoms throughout the disease trajectory.1,2 These symptoms may include pain, anorexia, fatigue, anxiety, depression, delirium, and dyspnea.3 Palliative care is a medical specialty that focuses on the relief of physical, psychological, social, and or spiritual suffering to improve the quality of life of patients with life-threatening illnesses.4 Palliative cares is delivered by specialized interdisciplinary teams, often consisting of physicians, nurses, social workers, chaplains, and other health professionals.3,5 Effective symptom evaluation and management have been shown to improve quality of life and adherence to cancer therapies.5 A growing number of studies have reported that palliative care interventions are associated with significant benefits, including improved quality of life, satisfaction of patients and families5, and possibly longer survival.6 Palliative care is an essential component of comprehensive cancer care programs.7 Patients with cancer can benefit from effective symptom control and management of complications related to their cancer and or its treatments, regardless of the stage of the disease.8,9 Palliative care therefore needs to be effectively integrated into oncology care.10 Integrated care models that promote close collaboration between oncology and palliative care may reduce the cost of care and optimize care delivery.3,4 Palliative care is still an emerging specialty in the Arab countries, namely, Algeria, Bahrain, Comoros, Djibouti, Egypt, Iraq, Jordan, Kuwait, Lebanon, Libya, Malta, Mauritania, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Somalia, Sudan, Syria, Tunisia, United Arab Emirates, and Western Sahara,11,12 with

various degrees of development throughout the region.13,14,15 No Arab country has palliative care policies at the national level.13,15 The unstable geopolitical and socioeconomic climate marked by the Arab Spring has stalled any major reforms and investments in the health care systems. Funding, human resources, and the availability of opioids and other essential medications remain limited.14,15 In addition, there is a lack of understanding of the value of palliative care not only among the general public and policy makers but also among the health care professionals.15 Death and dying remain taboo subjects. Scattered palliative care services currently exist mostly in cancer centers and are available only to patients with cancer.15,16 Jordan is a developing Arab country with a population of 6 407 081 in 201312,17 and a life expectancy of approximately 73 years.18 In Jordan, cancer is the second leading cause of death, after cardiovascular diseases.21 In 2010, 6820 patients were newly diagnosed with cancer. Of these, 4921 (72.2%) were Jordanians and 1899 (27.8%) were non-Jordanian. The highest cancer incidences for adults per site were breast 951 (19.6%), colorectal 558 (11.5%), lymphoma 382 (7.9%), lung 380 (7.8%), and prostate cancer 218 (4.5%).19 Based on 2009 mortality data, the total number of cancer mortality was 2164, accounting for 14.6% of 1 2

Department of Palliative Care, King Hussein Cancer Center, Amman, Jordan Department of Palliative Care and Rehabilitation Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

Corresponding Author: Omar Shamieh, MD, MBA, Department of Palliative Care, King Hussein Cancer Center, Amman, Jordan. Email: [email protected]

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Table 1. Palliative Care Interdisciplinary Program Staff. No. of full-time staff Position

2006

2008

2010

2012

Palliative care physician Inpatient nurse coordinator Home care nurse Social worker Spiritual advisor Clinical pharmacist Clinical psychologist Medical resident Total

2 2 2 0 0 1 0.25 1 8.25

2 2 2 0.5 0.75 1 0.25 2 10.5

3 2 2 0.5 0.75 1 0.25 2 11.5

3 3 4 1 0.75 2 0.5 3 17.25

the total deaths.20,21 Based on 2010 report, more than 50% of the cancers presented in advanced stage.19 These numbers clearly demonstrate the need for palliative care services in Jordan. In response to this need for palliative care, the King Hussein Cancer Center (KHCC) has developed and sustained a comprehensive palliative care program for its patients and caregivers. The KHCC is the largest cancer center in Jordan, treating more than 50% of patients with cancer, in the country. All patients with cancer treated at the center are eligible to receive palliative care services on an as-needed basis. The KHCC currently has the largest comprehensive palliative care program in Jordan, where patients receive high-quality palliative care based on their needs, preferences, and values. In addition, the program serves as a regional model and center of excellence for patient care, education, and research.22 In this article, we describe the KHCC palliative care program and its integration into the oncology setting to optimize care delivery for patients with cancer.

Interdisciplinary Team Palliative care at KHCC is an interdisciplinary service (Table 1). The core team members are a palliative physician, a palliative nurse coordinator, a palliative clinical pharmacist, a palliative social worker, and a spiritual advisor. Other disciplines available as needed are the clinical psychologist, clinical dietitian, and physical and respiratory therapist.

Clinical Services Inpatient Services Consultation. An inpatient palliative care consultation team operates 5 days per week from 8 AM to 5 PM. Staffed with 1 physician consultant and 1 experienced clinical nurse coordinator (a trained registered nurse), the team sees patients on the medical, surgical, and leukemia floors; in the bone marrow transplant unit; and in the emergency department. The consultation team has access to a social worker, a clinical psychologist, and a spiritual advisor. Patients presenting for a consultation are first evaluated by the palliative care nurse coordinator and then by a palliative care physician consultant within 24 hours. Follow-ups take place on a daily basis or as needed. The main reasons for consultation are

pain management, symptom control, and wound care. Occasionally, the palliative care team is consulted for advance care planning, transition to hospice care, or referral to home care services. In 2012, the team had over 400 inpatient consultations. Palliative Care Unit and Boarding Service. The palliative care unit at KHCC consists of 8 single-bed rooms. It is operated by the core palliative care team. Other specialists available on demand are physical and respiratory therapists, a dietitian, and a clinical psychologist. The nurse-to-patient ratio is 1:3. Visiting hours are 24/7. When the unit is full, patients can be admitted to other medical or surgical floors under the palliative care inpatient boarding service. Patients outside the unit are managed by another palliative care interdisciplinary team similar in composition to the one in the palliative care unit. Patients are generally admitted to the palliative care unit for refractory pain or symptoms requiring intensive monitoring and treatment, palliative procedures, or supportive transfusions; for severe infections requiring intravenous antibiotics; or for respite care. Patients can be either admitted to our service directly from the emergency department or transferred from oncology floors. The 5 criteria for admission to the palliative care unit are (1) adult aged 18 years or greater; (2) presence of active advanced cancer; (3) absence of active cancer therapy; (4) consent of the patient and the patient’s family; and (5) having had a discussion of disease status, prognosis, and the do-not-resuscitate option between the primary oncologist and the patient or the patient’s designated caregiver. All referred patients are first evaluated by the palliative care nurse coordinator and then by the palliative care physician consultant. If the admission criteria are met, the patient is admitted to the palliative care boarding service within 48 to 72 hours. Patient care is continued on the medical floor or the palliative care unit (if a bed is available) until the patient is discharged from the hospital. Priority for transfer to the palliative care unit is given to patients with complex uncontrolled symptoms, poor social support, or at end-of-life. In 2012, a total of 979 patients were admitted to the KHCC palliative care unit and boarding service: 602 already under the direct care of our palliative care team and 377 newly transferred from oncology services. In 2012, of the 979 patients, 280 (29%) died in the hospital while under palliative care, representing 42% of the total number of hospital deaths. The median length of stay under palliative care was 11 days. Clinical Rounds. Multiple interprofessional patient care rounds are conducted as needed throughout the week to address the complex care needs of the patients, to coordinate different teams, and to regularly update patients’ plan of care. Daily rounds: Daily rounds are conducted by a palliative care physician, a nurse coordinator, and a clinical pharmacist for patients admitted to the palliative care unit and boarding service. Weekly morning report: A weekly interdisciplinary meeting is conducted on the first day of the week to discuss the

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American Journal of Hospice & Palliative Medicine® 32(2)

240 preceding week’s patient admissions and discharges for all palliative care services and to update plans of care for all admitted patients. Weekly walking rounds: Weekly clinical bedside rounds are conducted for patients with challenging issues to optimize patient care and staff education. In the 3- to 4-hour period, the team routinely sees 5 or 6 patients. Weekly oncology rounds: A representative from the palliative care team often attends the weekly oncology rounds to discuss patient management. The close interaction of the palliative care team with medical and radiation oncologists allows palliative care to be fully integrated into oncology care (position statement reference). Weekly closing rounds (sign-out): In the last hour of the week, an interdisciplinary team conducts closing rounds to sign out patients’ admitted in the inpatient service.

Outpatient Clinic The palliative care clinic is located in the KHCC outpatient building. The clinic operates 8 half-days a week from Saturday through Wednesday. The clinic is staffed by a palliative care physician, a nurse coordinator, and a clinical pharmacist. Access to the palliative care social worker and the spiritual advisor is also available on an as-needed basis. On average, 8 patients are seen per clinic day. In 2012, a total of 1133 outpatients were seen at the clinic. A majority of the patients are under the care of an oncologist and continue to receive active cancer treatment. Wait time for appointments is 7 + 2 days; for urgent cases, a same-day appointment can be arranged. Opioid prescriptions are refilled every 10 days, in compliance with Jordanian narcotic laws.

Home Care The KHCC palliative home care program is the largest in the country and is run by 2 palliative care teams. One team covers patients living in Amman, Jordan, and the second team covers areas outside Amman within a 100-mile radius. Each team consists of 2 nurses and a driver and uses a dedicated car. Both teams report to a palliative consultant physician who is accessible 24/7. The range of services includes nursing assessment and care, pain and symptom assessment and management, education and counseling, wound and stoma care, end-of-life care, phlebotomy, and intravenous antibiotics if needed. The teams also provide a bereavement visit to families within 1 week of a home care patient’s death, regardless of whether the patient died at home or the hospital. Home care patients receive direct palliative care or are seen on a consultation basis. Patients are referred to home care by either inpatient or outpatient services. Home care teams visit patients at a frequency determined by patient needs. Both teams operate 5 days a week. Weekend visits can be requested as needed. All visits and plans of care are discussed on a daily basis with the palliative care physician consultant overseeing home care service.

In 2012, the home care program enrolled 658 patients and provided a total of 1501 visits, consisting of 177 initial visits, 1031 routine follow-up visits, 156 crisis visits, and 137 bereavement visits.

Distinctive Aspects of the KHCC Palliative Care Program Concurrent Cancer Treatments. Because of flexibility in reimbursement, patients accepted for palliative care can still receive palliative radiotherapy and procedures according to their needs and goals of care. Palliative care patients undergoing active systemic cancer therapy remain under the care of their oncologists. Range of Interventional Procedures. The many interventional palliative procedures available to patients according to their needs and goals of care include permanent pleural and peritoneal catheters and endoscopic and colonoscopic stents for symptom control. Flexible Respite Care. Patients, due to severe distress or caregivers’ burnout, can be admitted for respite care. The length of stay is not limited by insurance but depends on the overall goals of care, prognosis, and patients’ preferred place of death. Phone Follow-Up Service. Patients who cannot come to the clinic or who reside out of the home care coverage area receive follow-up and advice by phone. The palliative nurse coordinator schedules a phone conference on a weekly or biweekly basis and arranges for medication refills and supplies as needed. After-Hours and Weekend Coverage. A 24-hour phone helpline is available to connect patients with the palliative care unit nurse. A palliative care physician consultant on call serves as a backup. Emergency Services. Palliative care patients have access to the cancer center’s emergency department. Patients may come from home or clinics or may be referred from home care. Palliative care patients can be admitted for acute illness, uncontrolled symptoms, end-of-life care, and occasionally respite care. Availability of Opioids and Essential Medications. Many opioids with different potencies are available at different dosages for oral or parenteral use (Table 2). All licensed physicians in KHCC can prescribe opioids. Patient-controlled analgesia is available to inpatients.

Education and Research Education The KHCC Department of Palliative Care is a World Health Organization–designated regional center for palliative care education and training. Many educational opportunities are offered throughout the year to health care professionals from different disciplines in the form of short courses, educational rounds, clinical rotations, observerships, and electives. A 3-day interdisciplinary palliative care course is offered twice a year. In 2012, a total of 70 health care professionals took the course.

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Table 2. Opioids Available to KHCC Palliative Care Patients.

Conclusion

Opioid

Route and dosage

Acetaminophen with codeine Tramadol

Oral: 10 mg of codeine, 500 mg of acetaminophen Oral: 50 mg for immediate release, 100 mg for sustained release Intravenous Oral: syrup, 1 mg/mL Oral: 10, 20, or 40 mg for sustained release Oral: 10 mg for immediate release Oral: 10, 30, 60, or 100 mg for sustained release Intravenous Intravenous Transdermal: 25, 50, or 100 mg Intravenous Oral: syrup 1 mg/mL Intravenous

The KHCC palliative care program is unique in the Middle East. Patients with cancer at KHCC have access to the inpatient palliative care consultation team, the palliative care unit and boarding service, the outpatient clinic, and the home care program, which are staffed by multidisciplinary teams of specialists. The patient volume is high and growing over time. In addition to patient care, the program provides education and conducts research. Through its close integration clinically with the KHCC’s oncology team, the program can be a model for successful delivery of comprehensive cancer care in the Middle East.

Oxycodone Morphine

Hydromorphone Fentanyl Methadone

Abbreviation: KHCC, King Hussein Cancer Center.

A collaborative agreement with the College of Nursing, University of Jordan, provides postgraduate palliative care training for nurses enrolled in the master’s degree program in palliative care. In 2012, 6 postgraduate nurses completed 12 weeks of clinical course work in the palliative care program at KHCC. The Internal Medicine Department operates a 1- or 2-year transitional residency program (categorical residency program is not available at the moment). All internal medicine residents serve a mandatory 1-month rotation with the palliative care program during their training. Palliative care team members attend a weekly palliative care educational grand round. We have applied to the Jordanian Council for accreditation for a 2-year hospice and palliative care fellowship program, the first in the country. At this time, accreditation has not yet been granted and the training program remains inactive.

Research The palliative care program develops research projects and research infrastructure by actively seeking funding and collaborations. Several prospective and retrospective research projects related to the operational and clinical metrics of our program were in progress in 2013. Other active studies included validation of questionnaires in Arabic and an investigation of opioid use. Our interdisciplinary research team includes physicians, nurses, and a clinical pharmacist. The KHCC has a research office with statistical and database support, an active institutional review board, and a grant office. The program’s first funded palliative care research project was an international study, led by The University of Texas MD Anderson Cancer Center, examining novel symptom response criteria and predictors in patients with advanced cancer. Over 100 patients have been recruited within a year, and the study is ongoing.

Acknowledgment We would like to acknowledge the contributions of the palliative care team members at KHCC who are behind the growth and success of our program, namely. physicians: Dr Alia Alawneh and Dr Wafa Ahmad; nurse manager: Laila Al-Khoulli; palliative nurse coordinators: Sawsan Ajarmeh, Ghadeer Al-arjah, and Huda Anshasi; home care nurses: Abeer Herzallah, Hassan Amer, Khalid Alsallaq, and Lubna Altinih; clinical pharmacists: Sewar Salmani and Stella Dawood; social worker: Nawras Hoshan; spiritual advisor: Safa’a Abbas; and administrative assistant: Shayma’a Turki. We would also like to thank Arthur Gelmis, scientific editor at MDACC, for his meticulous review of this manuscript.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

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A comprehensive palliative care program at a tertiary cancer center in Jordan.

The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families...
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