Authors (including presenting author) :
Wong S (1), Hue SM (1), Ngan C (2), Lee H (3), Lau E (1)
Affiliation :
(1) Department of Medicine, PYNEH
(2) Department of Speech Therapy, HKEC
(3) Department of Dietetics, HKEC
Introduction :
Eating issues (oropharyngeal dysphagia and refusal to eat) are part of the natural disease course in patients with advanced dementia, and two common options for the treatment of sustained eating issues are careful hand feeding and tube-feeding. Systematic reviews and meta-analyses have not found tube-feeding to be effective in preventing aspiration pneumonia, improving nutritional status or prolonging survivals in patients with advanced dementia. On the other hand, risks are associated with tube-feeding (e.g., procedural complications during insertion, use of physical or chemical restraint if the agitated patient is trying to remove the feeding tube, tube blockages or dislodgments) which may adversely affect the patient's quality of life. The goal of careful hand feeding is to provide food to the extent that it is comfortable for the patient rather than to ensure a prescribed caloric intake. Expert opinions have been advocating careful hand feeding as an alternative to tube-feeding to improve comfort and quality of life for these patients. Although the Hospital Authority has established clear ethical guidelines for life-sustaining treatment in the terminally ill, different hospitals are practicing careful hand feeding according to their available resources, manpower and protocols. The Nutritional Care Committee of the Quality and Safety (Q&S) Department of HKEC has established the subcommittee of careful hand feeding in order to promulgate and standardize the practice of careful hand feeding in patients with advanced dementia in the HKEC hospitals.
Objectives :
- To promulgate careful hand feeding in patients with advanced dementia in a multidisciplinary approach;
- To implement a pilot program ("the program") of careful hand feeding for patients with advanced dementia in the designated wards of HKEC hospitals;
- To establish clinical guidelines of careful hand feeding in patients with advanced dementia in HKEC;
- To prepare documents for the program (communication record, information pamphlet, careful hand feeding cues and tips);
- To assess the acceptance and sustainability of careful hand feeding in patients with advanced dementia after implementation of the program.
Methodology :
A multidisciplinary approach by involving doctors, nurses, speech therapists and dietitians was adopted in developing the program. Clinical guidelines of careful hand feeding was established, together with standardization of workflow and documents that were needed (communication record, information pamphlet, careful hand feeding cues and tips). In-patients with advanced dementia were identified in the designated wards of the HKEC hospitals. Speech therapist (ST) would be referred for further assessment if dysphagia was present clinically. If the patient had severe oropharyngeal dysphagia that was likely to be irreversible after ST assessment, geriatrician or specialist would then discuss with the patient's family or caregiver regarding to the choice of feeding mode (tube-feeding or careful hand feeding) and the issue of advance care planning (ACP) and / or do-not-attempt-cardiopulmonary-resuscitation (DNACPR). Information pamphlet about careful hand feeding and tube-feeding would be given to the family or caregiver to facilitate decision-making if needed. If the family or caregiver opted for careful hand feeding, communication record was signed by the medical officer in-charge, geriatrician or specialist, family or caregiver after discussion. Careful hand feeding cues and tips would be provided accordingly to facilitate careful hand feeding after hospital discharge.
Inclusion criteria: age > 60, with diagnosis of advanced dementia (FAST stage 7 or beyond) and severe oropharyngeal dysphagia that was likely to be irreversible after ST assessment.
Exclusion criteria: patients with no diagnosis of advanced dementia or dying patients with imminent death.
Basic demographic data (age, sex) were collected. The primary outcome measures were the decision of feeding mode (tube-feeding or careful feeding feeding) after discussion and the feeding mode on discharge from hospital or till death. The reason of change in feeding mode (i.e., from tube-feeding to careful hand feeding or vice versa) if any was recorded.
Result & Outcome :
The program was implemented in the designated wards of the HKEC hospitals since April 2024. Up to the end of November 2024, a total of 106 patients with advanced dementia were recruited into the program from HKEC hospitals. Fifty percent were female and 88% were aged 80 or over. Families or caregivers of 90% of patients have chosen careful hand feeding as the feeding mode, and all of them remained on careful hand feeding on hospital discharge or till their death. Twenty three patients (~ 22%) were dead during index hospitalization.
Conclusion: most families or caregivers of patients with advanced dementia opted for careful hand feeding as the feeding mode. Further study is recommended to look into other outcome measures (e.g., discharge destination, unplanned hospital readmissions, satisfaction of patient's family or caregiver) after initiation of careful hand feeding in patients with advanced dementia.
