Authors (including presenting author) :
Kwan WMC (1), Chuk CY (1), Ho YS (1), Mok KWA (1)
Affiliation :
(1) Palliative Home Care Unit, Bradbury Hospice
Introduction :
In Hong Kong, terminally ill patients dying at home is still a rare practice. However, to our experience, especially during COVID-19 pandemic period, the quest for dying at home by patients and their families has been rising. With the promotion of Advance Care Planning in these few years, the public get more information on their options of the place of death. Home is becoming a feasible option when the community has more medical support provided by public and private sectors in recent years. 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 burdens experienced by the family caregivers; 2) 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 included in the study. There were ten cases who had expressed wishes to die at home. Eight bereaved families were able to be contacted and interviewed. The principal investigator and a co-investigator, phone-contacted those agreed to join, explained the study, obtained their verbal consent, and conducted the telephone interviews. Their caregiving experience was asked according to the interview guide. Each interview took 30 to 45 minutes to complete. The telephone interviews were audio recorded, transcribed, semantic and content analyzed. Themes and domains were identified accordingly.
Voluntariness, anonymity, and confidentiality are straightly kept. The study has obtained approval from the Joint CUHK-NTEC Clinical Research Ethic Committee.
Result & Outcome :
A total of 8 family care givers were interviewed. They were spouses or adult children of the deceased patients. One of these deceased patients had a major diagnosis of end stage chronic kidney disease while all others were cancers. All had a Do-Not-Attempt Cardiac Pulmonary Resuscitation status (DNACPR). In summary, the care givers expressed several main difficulties in looking after a dying relative at home. They found a great burden of having the need to continuously observe the patients’ condition and changes. Handling patients’ symptoms and making decisions on whether to go to hospital or stay at home were also difficult. The day-to-day personal care for the totally dependent patients was burdensome and tiring. In addition, caregivers had multiple responsibilities on top of fulfilling the caring tasks. Despite having all these difficulties, all of them identified this 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. The caregivers expressed having 24 hours enquiry, on-site professional service and support in death certificate and aftermath handling are essential elements to facilitate dying at home.
In conclusion, if this was an expressed wish of the patient and the family care givers, dying at home was meaningful to both the patient and the care giver. However, having noticed the difficulties of looking after a very ill person at home, more 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’.
