Palliative care is end of life care. It is probably the most misunderstood specialty in the entire field of medicine. That is 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.
A compelling panel discussion on palliative care, titled “End of Life Care: Help and Hope When There is No Cure”, was presented by the Soroptimist International Club Kuwait at the ACURA showroom on Monday. Speakers included experts in the field of palliative care from Bayt Abdullah Children’s Hospice (BACCH), Kuwait Palliative Care Center (KPCC), and SANAD Home Hospice Organization of Lebanon.
Founding President of SI Club Kuwait, Dr Stacey Al Ghawas, welcomed the guests and thanked ACURA for generously providing the venue for the event. SI Club Kuwait is part of a worldwide network of 80,000 business and professional women in over 132 countries who work to improve the lives of women and girls in their communities. They focus on action and awareness in five primary areas: economic empowerment, education and learning, environment, ending violence against women, and health and food security. Last year, SI Club Kuwait sponsored a Thalassemia Awareness campaign as part of their women’s health issues program. Now they have teamed up with KPCC, BACCH, and SANAD to help spread the word about palliative and hospice care and to remove the stigma associated with caring for terminally ill patients.
“When we are born, we are held in loving arms, surrounded by our families, kept healthy in comfort and safety. We start our journey of life, and whether it is long or short, it inevitably ends with dying. What is important is the way we spend our time between these two certainties,” Dr Al Ghawas said.
“When we are healthy, we live as if there is no tomorrow. We don’t think about how or when our lives will end; time seems limitless. If we’re lucky, we will live long lives in good health. But since no one lives forever, we all face the passing of our friends and loved ones, as well as ourselves. Just as we came into this world, we long to leave it in loving arms, surrounded by loved ones and in comfort and peace. This is the treatment that palliative and hospice care provides to patients with life-ending diseases…
“Today the Soroptimist International Club Kuwait is honored to present a panel of experts who will explain how palliative and hospice care help us to face the challenges that come with managing a life-ending illness,” Dr Al Ghawas continued. “We will see how in the final chapters of our lives, organisations like SANAD, Kuwait Palliative Care Center, and Bayt Abdullah, each composed of a committed team of doctors, nurses, psychologists, pharmacists, and nutritionists, work collaboratively to manage our physical pain and mental health. They enable us to live out our last days to the fullest, before saying our final goodbyes.”
Dr Al Ghawas introduced the master of ceremonies for the evening, Lubna Izzidin the CEO of SANAD. Izzidin gave an informative presentation on SANAD, a Lebanese non-profit, non-governmental hospice care organisation. She described their mission, which is to provide comprehensive, free of charge, home-based hospice care to terminally ill patients, while preserving their dignity and enhancing the quality of their remaining life. SANAD works to assist patients in remaining as alert, functional, and comfortable as possible within the calm and sanctuary of their own home, surrounded by family and loved ones.
“We adopt a multidisciplinary approach to home hospice care: medical, psychological, social, and spiritual,” Izzidin stated. “We strive to empower patients and caregivers to become skilled in their own care and allow them to make informed choices in line with their values and beliefs. We deliver these support services to patients regardless of their nationality, religion, gender, diagnosis, or ability to pay.”
Izzidin explained that patients are admitted under SANAD’s care when the patient’s primary physician has determined that the patient is at an advanced and/or terminal stage of the disease and requires palliative or hospice care or when the patient has six months or less of life expectancy. Patients must live in greater Beirut or in Mid-Bekaa, where SANAD operates.
SANAD’s comprehensive program begins with performing a medical and social assessment, identifying patients’ physical and psychosocial needs and setting priorities with patients and families, all the way through to guiding and supporting caregivers during the period of care to the final days at home, and supporting the families during the grieving process.
“We spend a lot of time with patients’ families in order to gain their trust so they will open up with us. We sit and drink tea with them, we listen to them and address their concerns, and we try to gently prepare them for what will happen next,” said Izzidin.
SANAD’s medical team consists of two palliative care doctors and one family doctor, five registered nurses including a nursing supervisor, and two psychologists. Since its establishment in 2010, the organisation has supported more than 400 terminally ill patients and their families. Izzidin pointed out that SANAD’s work also branches out into many related areas through knowledge generation and research, advocacy and outreach initiatives, and partnerships and projects.
“We are providing technical consultations for the development of a hospital palliative care program at Rafic Hariri Hospital in Beirut. We are also hosting and supporting Ministry of Public Health students from American University Beirut throughout their practicum at SANAD on developing palliative care related projects.”
In addition to raising awareness through lectures, workshops, conferences, and educational materials, SANAD also does “lots and lots of fundraising” in order to support their many programs and activities.
The Kuwait Palliative Care Center was represented by Consultant of Palliative Care Dr Ameena Al Ansari. Dr Al Ansari described palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illnesses. Suffering can be prevented or relieved by means of early identification and impeccable assessment, and the treatment of pain and other problems, physical, psychosocial, and spiritual. Members of the multidisciplinary team include doctors, nurses, physiotherapists, pharmacists, psychiatrists, nutritionists, and social workers.
“The Kuwait Palliative Care Center opened in 2011, in the Al Sabah hospitals complex, with two wards, one for males and the other for females, with all private rooms. Now we have four wards, two for males and two for females, with each ward containing fourteen private rooms. We also have an outpatient clinic to treat patients’ symptoms related to cancer and other chronic diseases, and an outside consultation team to see and treat patients in other hospitals,” she said.
“We improve patients’ quality of life by treating pain and other symptoms like nausea, vomiting, difficulty in sleeping, shortness of breath, depression, and anxiety. The treatment plan is tailored to each patient depending on his physical and psychological status, then discussed in a multidisciplinary meeting to agree on the plan.”
Dr Al Ansari mentioned that among the many factors that make palliative care unique is the fact that it also cares about the patient’s family and caregivers. They receive counseling and support and are kept up-to-date about their loved one’s condition and what to expect. This helps them to better accept the situation.
“In palliative care we talk about living, not dying. We encourage those suffering from cancer and other life-threatening illnesses to live every day in the way they want to. They should enjoy their time, even when they are in the hospital, by sitting in the garden, watching TV, doing their hobbies, or having a family gathering in the daycare room. We want them to live the days, not count them.”
Due to a shortage of specialists in palliative medicine in Kuwait, KPCC currently accepts only cancer patients as inpatients, and a limited number of outpatients with other chronic diseases. There is still no official government end of life home care program in Kuwait. Dr Al Ansari noted that she and her colleagues are trying to establish such a program, as many terminally ill patients would like to die at home and their loved ones would like to have them at home with them. KPCC has applied for a fellowship program in palliative medicine in Kuwait in order to increase the number of badly-needed specialist doctors in this field.
KPCC works hard to raise awareness among the general public and health care professionals about the enormous benefits of palliative care for patients and their families. In 2016, palliative care was officially designated as a sub-specialty in Kuwait’s Ministry of Health.
“Our services are expanding with more awareness and support for palliative care,” Dr Al Ansari said.
Speaking about the important work being done by Bayt Abdullah Children’s Hospice (BACCH), were CEO Rasha Al Hamad and Director of Care Tracy Dempster. Al Hamad explained that BACCH is a not-for-profit NGO with a signed Memorandum of Agreement with the Kuwait Ministry of Health. Their mission is to provide the highest standards of multi-professional specialist pediatric palliative care to children and their families; to improve the quality of life of children and to support their families; to offer individualised services to meet the needs of each family and child in the preferred place of care; and to provide specialist symptom management, respite care, home care, play activities, and psychosocial support.
Al Hamad gave the World Health Organisation definition of pediatric palliative care, which states that “Palliative care for children is the active, total care of the child’s body, mind and spirit, and also involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres, and in children’s homes.”
“The BACCH model of pediatric palliative care provides continuity of care with other professionals involved in the child’s care,” said Al Hamad. “We work in companionship and partnership with different sub-specialties.”
She explained that the large team of BACCH doctors, nurses, and other specialised medical staff provides individualised, holistic, comprehensive care to each child and his or her family, whether the child is an inpatient, is attending a day care clinic, or is being treated through the home care or outreach program.
“The BACCH referral criteria is that the patient be under sixteen years of age; has been diagnosed with a life limiting and/or life-threatening illness; and is in need of any of the following: pain and symptom management, psychosocial support, play and activities, physiotherapy support, nutritional support, and educational support,” Al Hamad said.
Tracey Dempster expanded on the wide range of services offered by BACCH. “Day care is extremely important in order to enhance the independence and quality of life for the child and family. This is achieved through a holistic and comprehensive assessment process; medical, nursing care, dietetics, physiotherapy, play, and psychosocial support, and the management of symptoms. In addition, we concentrate on giving support to the siblings as this is also a very difficult and trying time for them.”
Dempster noted that inpatient care is for those patients with complex physical, psychological, and social needs not readily treated in the home or other care settings. “I must say that our inpatient facilities are really wonderful; this is the most beautiful and fantastic hospice building I have ever worked in during my long career in palliative care,” she added.
Dempster described the role of the respite service, offered in their ten on-site chalets, as the opportunity for a short break for the entire family, with the support of clinical services if required. “With our help, parents can relax and just be mom and dad for a change, rather than acting primarily as caregivers.”
Home care meets the needs of the child and family through the provision of expert interdisciplinary care and support in the home, empowering the family to care for their child, Dempster explained. The outreach program provides specialist pediatric palliative consultations in hospitals, at the request of the pediatrics departments in the Ministry of Health. An on-call service provides 24-hour pediatric palliative advice for BACCH patients and families across all the previously mentioned settings.
“Our on-call service is one of the most important services we can offer. Whether or not the families actually use it, just knowing they can contact us at any time is extremely reassuring,” Dempster concluded.
As the final speaker, I myself spoke of my personal experience taking care of both my parents who passed away in Kuwait and who greatly benefitted from palliative care. I experienced first-hand how palliative care can make the difference between prolonged end-of-life suffering and a peaceful, pain-free passing.
Watching first my father and then my mother suffer in the ward of a local general hospital, it quickly became apparent that these hospitals and the protocol they follow are not designed to cope with the complicated situation of many dying patients. The highly-trained staff at the Kuwait Palliative Care Center, on the other hand, cares for patients and their family members in a professional, compassionate manner, offering all the benefits of a tightly-knit medical team that treats patients as individuals. Palliative care grants terminal patients the ultimate final right of death with dignity.
There is an enormous need to raise awareness of palliative care, both among the general public and even among medical professionals, and this is what the SI Club Kuwait is aiming to do. A panel discussion on “Similarities and Differences and Room to Learn and Grow” followed the presentations, along with a lively question and answer session, and a pledge and support statement between SI Club Kuwait, Kuwait Palliative Care Center, Bayt Abdulla Children’s Hospice, and SANAD.
“We hope that this has been a memorable event and that you will leave supporting palliative and hospice care within our Kuwaiti community,” Dr Al Ghawas concluded.
By Claudia Farkas Al Rashoud – Special to the Arab Times