Authors: (including presenting author): :
Kwan WMC (1), Chuk CY (1), Ho YS (1), Mok KWA (1)
Affiliation: :
(1) Palliative Home Care Unit, Bradbury Hospice (2) Palliative Care Unit, M&G Department, Shatin Hospital
Keyword 1: :
dying at home
Keyword 2: :
End-of-life care
Keyword 3: :
terminally ill
Keyword 4: :
Palliative care
Introduction: :
In Hong Kong, terminally ill patients dying at home is still a rare practice. However, in recent years, the public get more information on their options of the place of death. With the legalization of the Ordinance on the Advance Decision of Life Sustaining Treatment in 2024, there is a potential increase in the request for home death. Therefore, it calls for the attention of our palliative home care team to investigate this matter in greater depth.
Objectives: :
This is a qualitative exploratory study, using telephone semi-structured interviews of the family caregivers to obtain an in-depth understanding of their experience of looking after a relative dying at home. The objectives of this study were, 1) to explore the care experience of the family caregivers; 2) to identify the support family caregivers need and; 3) to elicit the meaning of looking after a relative dying at home.
Methodology: :
This study recruited participants from a regional Palliative Home Care team. Family caregivers who had looked after their relatives dying at home from 1 April 2022 to 31 March 2023 were recruited. There were ten cases in this period of time. Eight bereaved families were interviewed. The principal investigator and a co-investigator, conducted telephone interviewed the family caregivers using a semi-structured interview guide. Each interview took 30 to 45 minutes. The telephone interviews were audio recorded, transcribed, semantic and content analyzed. Voluntariness, anonymity, and confidentiality are straightly kept. The study has obtained approval from the Joint CUHK-NTEC Clinical Research Ethic Committee.
Result & Outcome: :
The 8 family care givers interviewed were spouses or adult children of the deceased patients. The patients were predominantly had a cancer diagnosis. All had a Do-Not-Attempt Cardiac Pulmonary Resuscitation status (DNACPR). In summary, the care givers expressed the main difficulties in looking after a dying relative at home included the burden of continuous observation of the patients’ changing condition, handling symptoms and making decisions on hospital admission. The day-to-day personal care for the totally dependent patients was burdensome and tiring. In addition, care givers had to juggle multiple responsibilities. They identified 24-hour inquiry, professional on-site care, and assistance with death certification and aftermath administrative matters as being vitally important. Despite having all these difficulties, all of them regarded looking after their dying relative at home as a precious and meaningful experience. They treasured being able to provide diligent care to the patient, fulfilling patients’ wishes, fulfilling their responsibilities as family members, and sufficient time for death rites and religious practice. If this was an expressed wish of the patient and the family care givers, dying at home was meaningful to both the patients and the care givers. However, having noticed the difficulties of looking after a very ill person at home, medical and nursing outreaching service is essential to ensure a quality death for the patient and a sufficient support for the care givers in the community in achieving ‘Peace to both the dead and the survived’.
