Author: Rozina Aamir – Salim, MScN student at the School of Nursing and Midwifery, Aga Khan University, Karachi, Pakistan. Did her bachelor’s in nursing BScN in the year 2013 from Aga Khan University. Her clinical experience includes 10 years of working in different departments and in different roles. Currently, she is working at Aga University Hospital in the Home Health Department as a Clinical Nurse Instructor.
Palliative care is a concept that focuses on improving the quality of life for patients and their families who have experienced challenging situations in this phase of their lives. Palliative care services are focused on patient-centered care that regards patients’ values, experiences, and needs, and coordination of care is planned accordingly. According to Mulji and Sachwani (2017), despite the fact that Pakistan has a huge burden of disease the concept of palliative care is still emerging in Pakistan. The recognition and support for palliative care services are slowly gaining in the country. Palliative care is only provided by a small number of medical facilities in Pakistan with is not sufficient to meet the entire need of the nation. In Pakistan, the prevalence of chronic diseases is relatively high. Global Burden of Diseases 2010 estimates that by 2025, non-communicable diseases such as cancer, diabetes mellitus, and mental health issues will account for 3.9 million of all deaths in Pakistan among those aged 30 to 69 (Kashif, 2022). In these circumstances, palliative care must be developed and integrated into health care systems.
Two models of palliative care include hospital-based palliative care provision and home-based palliative care provision when compared it was identified that the provision of services in the patient's home has been thought to provide several advantages, including lower treatment costs, a decrease in hospital readmissions, improved quality of life, higher survival rates, more sense of comfort and security, and mood enhancement for patient and families (Shaikh et al., 2023). Home-based palliative care program has been displayed to enhance improved health outcomes and increase care gratification. According to the literature, it is suggested that one should not focus on protracting life if the aggressive treatment adds up to discomfort and sufferings only. Instead, initiating a timely plan for palliative care is significant (Tark et. al, 2020). Literature also highlights that hospitalized patients in need of palliative care often live most of their terminal days in hospitals without family and loved ones. (Kahveci et al, 2020). Home-based palliative care framework is considered a key model for those with a life-limiting diagnosis. Unfortunately, it is still not in practice as much as it is needed. Home health services of Aga Khan university hospital Karachi have realized the need for home-based palliative care services and implemented a care model where palliative patients can stay at home with their families and lead a quality life.
The fundamental focus of Aga Khan Hospital’s Home Health Services is to provide palliative care with respect to the physical, spiritual, emotional, and psychosocial needs of the patients. In a home-based context, many patients appear with chronic and incapacitating health issues including advanced cardiac, renal, respiratory, malignant, and neurological disorders. The treatment and care for these patients are planned and monitored by a multidisciplinary team which may consist of physicians, nurses, physiotherapists, and other health professionals whereas care is delivered at home by relevant assigned professional(s). Besides, physical care, nursing staff also perform interventions to cater to the spiritual and psychosocial needs of palliative patients such as encouraging the family to participate in the patient’s activities of daily living, allowing family and patient to spend time together whenever possible, taking the patient for outdoor activities if they wish, encourage them to perform religious rituals if they prefer to do so.
To ensure the quality of services several clinical indicators are also monitored. A few of them are 1) incidence of falls, 2) bedsores, and 3) peaceful death at home for end-of-life care patients. Our indicator data highlights that, last year 97.4% of palliative patients that were enrolled in HHS services remained fall free. During the last 2 years, none of the patients developed bedsores and the 12 palliative patients who died were at home by their wish with their families in the presence of home health staff which is a success story for health care professionals and families who expressed their immense satisfaction with the outcomes.
Family counseling, timely referrals from inpatient services, real-time facilitation, specialized staff training, debriefing session for staff, and awareness of the general population were some of the factors in achieving these positive outcomes. Home-based palliative program of AKUH-initiated structured care which is rare in the country thus, needs remain unmet. Moreover, palliative service in a home-based environment is still quite new and has a long way to go. For future implications, awareness needs to be promoted within the communities which can help them to seek palliative care timely and health professionals to plan it timely which might not change the outcome but will help a great deal towards the journey of a dying patient and the family.
References
Mulji, N. P., & Sachwani, S. (2017). Palliative Care: An Alien Concept in Pakistan. Journal of Clinical Research & Bioethics. https://doi.org/10.4172/2155-9627.1000301
Kahveci, K., Koç, O., and Aksakal H., 2020 Home-based Palliative Care. Bezmialem Science 8(1), pp. 73-80
Kashif S, 2022. Awareness of Palliative Care among Healthcare Providers in Pakistan: A Survey. Life & Science 3(4): 174-177. doi: http://doi.org/10.37185/LnS.1.1.224
Shaikh, O. A., Amin, S., & Shaikh, G. (2023). Palliative care in Pakistan: patients endure in agony. International Journal of Surgery, 6(2), e115. https://doi.org/10.1097/gh9.0000000000000115\
.jpg)
0 Comments