Palliative care has undergone substantial growth in the past decades starting with the formal categorization of Hospice and Palliative Medicine as a recognized subspecialty in many countries by local board authorities, to developing new delivery and payment models and increasing medical awareness about the need for such care.1 There remains however a misconception as to the definition of palliative care and its differentiation with hospice. It is important to distinguish between the two. Palliative care is an interdisciplinary care defined by the World Health Organization (WHO) as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual”.2 It provides an additional layer of support through symptoms management, care coordination, and alignment on goals of care. Hospice care, on the other hand, provides palliative care for the dying patients in the last few months of their life once it is clear that patients have more limited prognosis and curative therapy is not appropriate or beneficial.3 The idea of hospice care started with Dame Cicely Saunders in the United Kingdom who went on to create the first modern hospice in 1967 to take care of the terminally ill. Hospice, as a service, is defined and regulated differently in various countries by local regulatory authorities.1 As people are living longer with chronic incurable illnesses such as cancer, heart failure, neurological, and lung diseases; it is important to understand the difference between the two so as to provide the adequate care optimizing patients’ quality of life early on in their chronic disease journey.
In the Middle East, the growth of palliative care is still in its early stages. In Lebanon, for example, the effort started with the integration of palliative care in the 90s into the nursing curricula and continues today through nongovernmental organizations and some initiatives in academic medical centers.4 Saudi Arabia has a well-developed inpatient palliative care unit in King Faisal Specialist Hospital that is widely considered a regional training center.4 Recent initiatives have started in Qatar, Oman, and the United Arab Emirates5 while Jordan has an active interdisciplinary program across the continuum of care from services in the hospital, to offices, and homes.6
It is essential that palliative care is offered by a team of providers working together; such as physicians, nurses, social workers, chaplains, and pharmacists. Such palliative care teams help patients with chronic illnesses and their families to treat symptoms such as pain, nausea, shortness of breath, lack of appetite, depression, and anxiety, through an interdisciplinary approach. They use a variety of tools that includes medications, care management and coordination, and emotional and spiritual support for caregivers and patients to help maximize quality of life.1 It can be offered through the continuum of care from hospitals, to offices, to homes and skilled nursing facilities, although most established programs have been in hospitals. Palliative care teams facilitate communication of patients’ wishes and values with their families and other medical providers throughout their illness and at end of life. Studies have shown that patients who have had open discussions with their physicians in regards to their illness are less likely to die in the ICU compared to patients who did not. They are less likely to receive cardiopulmonary resuscitation and mechanical ventilation at end of life and more likely to be enrolled on hospice for more than one week.7
Many recent studies have shown the benefit of palliative care at all stages of chronic illnesses including end of life. In patients with cancer, some studies have shown survival benefits8 in addition to optimizing patients’ quality of life and improving their caregivers’ experience. Another benefit is reducing the cost of care by improving patients’ health while decreasing unnecessary interventions that might not improve the quality of life and might cause harm.9 Palliative care thus helps to achieve the triple aim in healthcare by maximizing value but many challenges need to be overcome for better recognition and expansion.10
First, even in countries where palliative care is well-developed, there is a shortage of specialty trained palliative care physicians and teams to take care of the aging population living longer with chronic diseases where symptom management is crucial. Another challenge is the lack of training for primary care clinicians and specialists in primary palliative care skills during medical and nursing schools, during residency training as well as through continuing medical education (CME) throughout their professional lives. Last, there is a lack of national strategies in most countries to integrate palliative care into their health system. National policies are needed in some countries to recognize palliative care as a specialty to facilitate reimbursement, but also to expand palliative care throughout the continuum of care into homes, nursing home, and specialty offices in countries with more developed programs.9 National strategies would be crucial in uniting public and private efforts and creating a framework for reimbursement to increase incentives for community-based palliative care. Examples of the successful implementation of such national strategies can be seen in Australia, New Zeeland, Georgia, and the United Kingdom.9
There are multiple solutions to tackle these challenges. One solution is to provide primary palliative care training in basic symptom management and communication skills to all healthcare providers dealing with serious illness by making it part of their required CME for national board certification. Another idea is to integrate a mandatory palliative care curriculum in medical and nursing schools which is challenging given that the current educational model in these institutions is heavily-based on teaching the curative model of medicine. Moreover, embedding trained palliative care teams in high-risk specialized clinical settings such as cancer centers and heart failure clinics is another way to disseminate such education among clinical teams and provide necessary services for patients.11 By creating generalist-level palliative care providers to take care of seriously ill patients, systems can overcome the severe shortage of palliative care specialists.9 WHO and the United Nations have encouraged better access to pain and symptom management as they estimate that three-quarters of the world population have limited access to pain relief treatment.12 Such global awareness would encourage governments to undertake policy changes, fund clinical training and establish partnerships to support the delivery and expansion of palliative care to support patients and families facing chronic debilitating illness.13
In conclusion, providing palliative care has shown to have extensive benefits for patients with serious illnesses by improving quality of life, decreasing unnecessary cost and improving care throughout the illness. Accessing palliative care should be based on patient and family needs at any stage in the chronic illness and not focused solely on prognostication periods by providing this service only at the end of life through hospice programs. Globally, palliative care has expanded disproportionately depending on the location, and in general, is more developed in hospital settings rather than in the community where it is much needed. In the new era of healthcare moving towards a value-based system that strives to balance quality, patient satisfaction as well as cost of care, palliative care will be crucial for the success of any health system addressing the needs of patients with chronic illnesses. The path toward better integration of palliative care into existing healthcare systems remains with many challenges including training, reimbursement, and global and national support.