Caregiver Preference for Tube Feeding in Community‐Dwelling Persons with Severe Dementia

• Published in: Journal of the American Geriatrics Society (JAGS) 2020-10, Vol.68 (10), p.2264-2269
• Main Authors: Zain, Zafirah, Mohamad, Hazirah, Seow, Dennis, Hum Yin Mei, Allyn, Allen, John Carson, Tong, Ka‐Mun, Malhotra, Rahul, Balasundaram, Bharathi, Malhotra, Chetna
• Format: Article
• Language: English
• Subjects: Aged; Aged, 80 and over; Caregivers; Caregivers - psychology; community dwelling; Decision Making; Dementia; Dementia disorders; Enteral nutrition; Enteral Nutrition - psychology; Euthanasia; Feeding; Female; Health Knowledge, Attitudes, Practice; Humans; Independent Living - psychology; Intubation, Gastrointestinal - psychology; Male; Patient Preference - psychology; Preferences; qualitative; Qualitative Research; Quality of Life; severe dementia; Singapore; State court decisions; tube feeding
• ISSN: 0002-8614; 1532-5415
• DOI: 10.1111/jgs.16641

BACKGROUND Evidence suggests that tube feeding persons with severe dementia (PWSDs) does not improve survival or quality of life, yet many continue to be tube fed. Reasons why caregivers choose to do so are not entirely understood. OBJECTIVE To understand what shapes caregiver preference toward nasogastric (NG) tube feeding for community‐dwelling PWSDs. DESIGN A qualitative study that employed semistructured interviews. SETTING AND SUBJECTS Primary informal caregivers of community‐dwelling persons diagnosed with dementia Functional Assessment Staging Test (FAST) stage 7 in Singapore. METHODS Caregivers participated in qualitative in‐depth interviews during which their preferences toward NG tube feeding of PWSDs were explored. We used principles of reflexive thematic analysis to compare caregivers who expressed a preference for NG tube feeding with those who did not prefer it. RESULTS We interviewed 27 caregivers of PWSDs. Most caregivers, 67% (n = 18), expressed a preference for tube feeding. We conceptualized four main themes describing what shapes caregiver preference toward NG tube feeding: (1) willingness to use tube feeding to prolong life at the expense of suffering, (2) deference to healthcare provider's (HCP’s) recommendation, (3) caregiver knowledge of alternatives to tube feeding, and (4) caregivers' internal and external conflicts. CONCLUSION Results from this study highlight the need for new inclusive approaches to shared decision‐making between HCPs and caregivers regarding tube feeding for community‐dwelling PWSDs. J Am Geriatr Soc 68:2264–2269, 2020.