The responsibility of caring for sick family members often falls on the shoulders of families. For those with life-limiting illnesses, the preference to receive care at home, supported by loved ones serving as informal caregivers, is a common choice.
The sense of responsibility in caring for sick family members provides an opportunity for patients to receive home care with full support from family members.
Professor Christantie Effendy from the Department of Medical-Surgical Nursing at the UGM Faculty of Medicine, Public Health, and Nursing highlighted families’ pivotal role in caring for patients.
Family caregivers, she noted, devote 24-hour care and attention to patients. However, not all caregivers feel adequately equipped to handle the complexities of caregiving, facing obstacles such as lack of experience, knowledge, information sources, emotional support, and home environment readiness.
“The complex issues that occur with family caregivers are usually related to their readiness to care for patients,” she said at the UGM Senate Hall on Tuesday (Jan. 23), when she was inaugurated as a professor in medical-surgical nursing.
According to Professor Effendy, the continuity of patient care at home after discharge from the hospital depends greatly on the family’s readiness and the patient’s discharge planning. Nurses play a crucial role in planning patient care at home.
Nurses should be proactive in assessing the readiness of each family caregiver to care for and address the problems and needs of the patient at home, as well as in efforts to improve the quality of life of both the patient and the family caregiver.
“Nurses can empower families through education and dissemination of information on the goals and benefits of home-based palliative care, especially in symptom management, thereby enhancing patient quality of life,” she explained.
In Indonesia, the concept of patient autonomy is intertwined with family decision-making. Consequently, an effective palliative care approach in Indonesia must cater to patients and families, ensuring shared involvement in decision-making processes.
“For example, a breast cancer patient receives an explanation about her condition and is asked to make decisions regarding chemotherapy, then the patient will not make the decision alone but will also depend on the family’s decision,” Professor Effendy elaborated in her inaugural talk on Dissemination of Palliative Care to the Community as the Initial Step in Implementing Home-Based Palliative Care.
Promoting family autonomy hinges on widespread public education about palliative care principles and goals. Such awareness fosters a supportive environment for integrating palliative care into Indonesia’s healthcare system.
Referring to Indonesia Law Number 17 of 2023 concerning Health, palliative care needs to be encouraged as the ‘new normal’ in Indonesia’s health system and the daily practice of health workers, especially in dealing with non-communicable disease patients from the initial diagnosis to end-of-life conditions.
Professor Effendy admitted that this certainly requires time and stages in its implementation. Health workers can start as soon as possible to enable more patients to access palliative care earlier and benefit from palliative care.
With enhanced understanding and appreciation of palliative care within communities, families can navigate patient care decisions with wisdom and compassion, ensuring patient preferences are respected, and decisions are made in the patient’s best interest.
Author: Agung Nugroho
Photographer: Firsto