Table 2.
Characteristics of included studies
| First author (year) | General study aim | Study design/ methods | Setting (Country) | Main feeding methods being studied | Population of the study | Number of participants (staff:surrogate) | Quality rating |
|---|---|---|---|---|---|---|---|
| Quantitative studies | |||||||
| Hodges MO (1994) [24] | Examine internists’ attitudes and decision-making regarding tube feeding for older patients including people living with dementia (PLWD) with unknown patient and family’s preferences | Self-administered, structured questionnaire with case scenarios | Nursing home (USA) | Tube feeding in general | Physician: Board-certified Internal Medicine (99%), subspecialty (55%) (no raw number of the subgroups) | 326 (326:0) | Good |
| Kuehlmeyer K (2015) [25] | Explore how nursing staff evaluate the nonverbal feeding related behaviors of PLWD | Self-administered, structured questionnaire | Nursing home (Germany) | Unspecified: nonverbal feeding-related behaviors towards tube feeding and hand feeding | Mixed: certificated nurse (65%), nursing assistant (23%) (no raw number of the subgroups) | 131 (131:0) | Good |
| Teno JM (2011) [26] | Examine tube feeding decision-making based on interviews with bereaved family carers | Telephone interviews with structured questionnaire | Mixed- PLWD died in nursing home (76.4%), hospital (15.6%) (USA) | Tube feeding in general | Family member: child of the decedent = 66.6%, spouse = 8.4%, sibling = 3.5%, other = 21.5% | 486 (0:486) | Good |
| Chen PR (2019) [27] | Explore perceptions of hospital staff regarding reducing tube feeding use of patients with advanced dementia | Self-administered, structured questionnaire | Acute Hospital (Taiwan) | Tube feeding in general | Mixed: Physician (101), Nurse (278), dietician (42), paramedial staff (pharmacists, speech therapists, occupational therapists, physical therapists, psychologists, and respiratory therapists) (103), administrative staff/ social worker (44), attendant/ volunteer (56) | 624 (624:0) | Moderate |
| Gieniusz M (2018) [28] | Evaluate physician knowledge and perceptions regarding the use of percutaneous endoscopic gastrostomy (PEG) tubes in PLWD | Self-administered, structured questionnaire | Acute hospital, outpatient (USA) | PEG | Physician: attending physician (82), resident physician (50), fellow (11), others (3); no information of the rest | 168 (168:0) | Moderate |
| Kwok T (2007) [29] | Examine attitudes of family carers of PLWD regarding life sustaining treatment including tube feeding | Interview with structured questionnaire | Mixed- nursing home (84% of PLWD under their care), psychogeriatric ward, long-term care ward (Hong Kong) | Nasogastric (NG) intubation, PEG | Family member: spouse (9), offspring (32), other (10) | 51 (0:51) | Moderate |
| Modi SC (2007) [30] | Examine the relationship between race of patient/ physician and recommendation for PEG placement | Self-administered, structured questionnaire with case scenarios | Acute hospital, follow-up clinic in hospital (USA) | PEG | Physician: Family Medicine (457), Internal Medicine (479), Geriatrics (44), unknown (103) | 1083 (1083:0) | Moderate |
| Norberg A (1994) [31] | Compare nurses’ reasons to feed or not to feed PLWD within six countries | Interview with structured questionnaire and case scenarios | Mixed- institutions considered providing high quality care (Australia, Canada, China, Finland, Israel, Sweden, USA) | Unspecified: hand feeding, forced feeding, tube feeding | Nurse: ward sister (67), staff nurse (82); participants from USA (39), Australia (20), Canada (20), China (8), Finland (20), Israel (20), Sweden (20) | 149 (149:0) | Moderate |
| Pasman HRW (2004) [32] | Examine characteristics of PLWD for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of decision-making process | Self-administered, structured questionnaire | Nursing home (Netherlands) | ANH in general: PEG, NG, intravenous (IV) infusion, subcutaneous hydration (hypodermoclysis) | Patient: 178 cases (PLWD) in whom ANH was forgone; questionnaire about the cases filled by nursing home physician (178 cases), nurse (128), family member (128) - filled by all (116 cases) | 178 (0:0) (178 PLWD) *unit of analysis is PLWD | Moderate |
| Pengo V (2017) [33] | Examine physicians and nurses’ opinions regarding antibiotics, artificial nutrition and hydration for PLWD with different life expectancies | Self-administered, structured questionnaire | Mixed- hospital, geriatric clinic, residential and semi- residential facilities (Italy) | ANH in general | Mixed: physician (288), nurse (763) | 1051 (1051:0) | Moderate |
| Shega JW (2003) [34] | Examine factors that affect physician recommendations of PEG for PLWD | Self-administered, structured questionnaire with case scenarios | Acute hospital: case scenarios of PLWD admitted to an acute hospital (USA) | PEG | Physician: General Internal Medicine = 50.8%, Family practice = 49.2% | 195 (195:0) | Moderate |
| Valentini E (2014) [35] | Examine physicians and nurses’ opinions regarding ANH for terminally ill PLWD | Self-administered, structured questionnaire | Mixed- hospital, Geriatric clinic, residential and semi- residential facilities (Italy) | ANH in general | Mixed: physician (288), nurse (763) | 1051 (1051:0) | Moderate |
| van Wigcheren PT (2007) [36] | Examine incidence of ANH in PLWD and characteristics of ANH decision-making process for PLWD | Self-administered, structured questionnaire | Nursing home (Netherlands) | ANH in general: food and fluids (NG, PEG) and fluids only or hydration (IV infusion, hypodermoclysis) | Physician: nursing home physician | 704 (704:0) | Moderate |
| Babiarczyk B (2014) [37] | Explore attitudes and experiences of caring staff about feeing problems | Self -administered, structured questionnaire | Nursing Home (Norway, Poland) | Unspecified: feeding difficulties, forced feeding | Mixed: professional staff (nurses (19), certificated nurse assistant (10), healthcare assistant (8) nursing student (2), Dietician (1), physiotherapist (1)), Unprofessional (student (3), assistant (8)); participants from Norway (28), Poland (24) | 52 (52:0) | Poor |
| Golan I (2007) [38] | Evaluate decision-making process of family members and physicians regarding PEG insertion for PLWD referred for PEG | Interview with structured questionnaire | Acute hospital (Israel) | PEG | Mixed: physician referring for PEG (72), family member or guardian (126), gastroenterologist (34) | 232 (106:126) | Poor |
| Qualitative studies | |||||||
| Aita K (2007) [39] | Explore why Japanese physicians feel bound to provide ANH, particularly PEG, to PLWD | Semi-structured interviews | Mixed- acute hospital, long-term care hospital (Japan) | ANH in general: particularly to PEG | Physician: Internal Medicine (11), Surgery (2), Neurology (4), Neurosurgery (3), Palliative care (1), Psychiatry (3), Geriatrics (1), GI surgery (1), GI Internal Medicine (1), Family physician (2), General Medicine (1) | 30 (30:0) | Good |
| Bryon E (2010) [40] | Explore nurses’ involvement in ANH decision-making for hospitalized PLWD | Semi-structured interviews | Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium) | Tube feeding, gastrostomy | Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2) | 21 (21:0) | Good |
| Bryon E (2012) [41] | Explore nurses’ experiences in ANH decision-making for hospitalized PLWD | Semi-structured interviews | Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium) | Tube feeding, gastrostomy | Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2) | 21 (21:0) | Good |
| Bryon E (2012) [42] | Explore nurses’ experiences with nurse-physician communication during ANH decision-making for hospitalized PLWD | Semi-structured interviews | Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium) | Tube feeding, gastrostomy | Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2) | 21 (21:0) | Good |
| Jox RJ (2012) [43] | Explore experiences of family and professional surrogates regarding medical decisions including tube feeding for PLWD | Think aloud with case scenarios | Unspecified (Germany) | PEG | Mixed: family surrogate (16), professional surrogate (16) | 32 (0:32) | Good |
| Lopez RP (2010) [44] | Explore organizational influence on practice of tube feeding for PLWD in nursing homes | Focused ethnographic; observations, semi-structured interviews, abstraction of publicly available material | Nursing home- two nursing homes with high and low use rate of tube feeding (USA) | Unspecified: feeding practice regarding both tube feeding and hand feeding | Mixed: observations of all nursing home staff and residents (no number); semi-structured interviews of staff including director of nursing (2), senior administrator (2), speech and language pathologist (2), licensed nurse (11), certified nurse assistant (6), social worker (2), diet technician (2), recreational therapist (2) | At least 29 (29:0) | Good |
| Luhnen J (2017) [45] | Explore values and experiences of legal representatives of PLWD regarding healthcare decisions including PEG | Semi-structured interviews | Mixed- associations related to legal representatives and nursing homes (Germany) | PEG | Mixed: family surrogate (12), professional surrogate (12) | 24 (0:24) | Good |
| Pasman HRW (2003) [46] | Explore nurses’ experiences and responses to feeding problems of PLWD in daily practice | Observations, semi-structured interviews | Nursing home (Netherlands) | Unspecified: hand feeding, forced feeding, ANH | Mixed: observations of 94 PLWD needed help with meals; more depth for those 60 PLWD having feeding problems and 15 having aversive behavior; including their family and 46 nurses helping them | At least 140 (46:0) (94 PLWD) | Good |
| Pasman HRW (2004) [47] | Explore role and influence of participants (family and professionals) in the decision making to start or forgo ANH for PLWD | Observations, semi-structured interviews | Nursing home (Netherlands) | ANH in general: to start or forgo ANH | Mixed: observations of decision-making process for 35 PLWD; involving nursing home physician (8), family members (32), nurses (43) | 83 (51:32) | Good |
| The AM (2002) [48] | Explore decision-making process behind withholding ANH from PLWD in nursing home | Observations, semi-structured interviews | Nursing home (Netherlands) | ANH in general: withholding ANH | Mixed: observations of 35 candidates (PLWD) for the withholding of ANH; involving Nursing home physician (8), family members (32), nurses (43) | 83 (51:32) | Good |
| Buiting HM (2011) [49] | Explore Dutch and Australian doctors’ experiences of decision-making of ANH for PLWD | Semi-structured interviews | Mixed- nursing home, hospital (Australia, Netherlands) | ANH defined by the participants themselves | Physician: nursing home physician (14), geriatrician (6) GP (9) palliative care specialists (1); participants from Netherlands (15), Australia (15) | 30 (30:0) | Moderate |
| Gil E (2018) [50] | Explore family guardians’ attitudes and cultural considerations of decision-making of tube feedings for PLWD | Observations, follow-up semi-structured interviews | Acute hospital- Gastroenterology outpatient unit (Israel) | PEG | Family member: descent (15), sibling (2) | 17 (0:17) | Moderate |
| Lopez RP (2010) [51] | Explore nurses’ beliefs, knowledge, and roles in feeding decisions for PLWD | Semi-structured interviews | Nursing home (USA) | Unspecified: feeding decisions towards both tube feeding and hand feeding | Nurse: licensed practical nurse (6) Registered nurse (5) | 11 (11:0) | Moderate |
| Jansson L (1992) [52] | Elucidate nurses’ ethical reasoning and decision-making of forced feeding for PLWD with refusing-like behaviors | Semi-structured interviews with case scenarios | Mixed- nursing home, psychogeriatric clinics, somatic long-term clinic (Sweden) | Forced feeding for PLWD with refusal-like behaviors | Nurse: all registered nurses | 20 (20:0) | Poor |
| Nagao N (2008) [53] | Explore American and Japanese experts’ ethics consultation focusing nutritional management for PLWD | Semi-structured interviews with case scenarios | Acute hospital (Japan, USA) | ANH in general: NG, PEG, IV | Mixed: US psychiatrist (1), Japanese Internal Medicine (1), US and Japanese ethicist (2); participants from USA (2), Japan (2) | 4 (4:0) | Poor |
| Norberg A (1987) [54] | Explore nurses’ experiences of withdrawing and withholding nutrients and fluids from PLWD and interpret their reasons regarding ethical principles | Semi-structured interviews with case scenarios | Nursing home (Sweden) | Unspecified: forced feeding, tube feeding, infusion, active euthanasia | Nurse: registered nurse (14), practical nurse (17), mental nurse (10), nurses’ aid (19) | 60 (60:0) | Poor |
| Norberg A (1987) [55] | Explore healthcare professionals’ attitudes towards feeding of PLWD | Semi-structured interviews, focused group | Mixed- long-term care institutional services, nursing home, psychogeriatric hospital (Israel) | Unspecified: forced feeding, tube feeding, infusion, active euthanasia | Mixed: individual interviews of physician (10), social worker (1), nurse (16), nurses’ aid (3); Group interviews of 4–15 people each group (no exact number) including psychologist; at least 60 participants | 60 (60:0) | Poor |
| Pang MCS (2007) [56] | Explore cultural influence on tube feeding decisions for PLWD in USA and Hong Kong | Observations | Specialized long-term care unit in hospital (Hong Kong, USA) | Tube feeding in general: to or not to forgoing tube feeding | Mixed: observations of PLWD, family member, healthcare professional | No information about number of participants | Poor |
| Smith L (2016) [57] | Explore nurses’ perceptions and beliefs about suffering regarding ANH for PLWD | Focused group with case scenarios | Home care for people with late stage dementia (USA) | ANH in general: suffering from ANH | Nurse: home healthcare nurse | 17 (17:0) | Poor |
| Wilmot S (2002) [58] | Explore how nursing staff apply ethical principles in feeding problems of PLWD | Focused group with case scenarios | Acute hospital: wards in a psychiatric hospital (UK) | Unspecified: feeding problems with a spectrum of methods (ANH and hand feeding) | Mixed: nurse, health care assistant staff | 12 (12:0) | Poor |
| Case studies | |||||||
| Berger JT (1996) [59] | Describe conflict between staff and family over differing assessments of resident’s quality of life and the cultural context of illness | Case study | Nursing home (USA) | ANH in general: NG, permanent gastrostomy | Case study involved daughter, physician, nursing staff | NA | Good |
| Christenson J (2019) [60] | Describe ethical dilemma concerning stop hand feeding in people with advanced dementia | Case study | Hospice (USA) | Hand feeding in general; assisted hand feeding, presumed wishes of ‘voluntary stopping eating and drinking’ (VSED), consider comfort feeding only (CFO) | Case study involved wife, physician, nurse, unlicensed assistive personnel, hospice’s administration, partner organization of the hospice | NA | Good |
| Meier CA (2015) [61] | Describe ethical dilemma of withholding food and drink in a patient with advanced dementia. | Case study | Hospice, nursing home (USA) | Hand feeding in general: fully assisted hand-feeding, verbally expressed of VSED, CFO | Case study involved daughter, nurse, social worker, chaplain, hospice medical director, nursing home director | NA | Good |
| Orr RD (1991) [62] | Describe clinical and ethical analysis of decision-making regarding tube feeding for PLWD | Case study | Acute hospital, nursing home (USA) | Surgical placement of gastrostomy | Case study involved daughter, nursing home staff, attending physician, director and administrator of nursing home, ethics consultant | NA | Good |
| Orr RD (2002) [63] | Describe the ethics consultation and decision-making process regarding tube feeding for PLWD | Case study | Acute hospital, nursing home (USA) | Unspecified: tube feeding, gastrostomy, IV, total parenteral nutrition (TPN), time-trial, CFO | Case study involved daughter, physician, bedside nurse, ethics consultant | NA | Good |
| Tapley M (2014) [64] | Describe decision-making process regarding tube feeding for PLWD in the best interests meeting | Case study | Nursing home (UK) | Tube feeding: radiologically inserted gastrostomy (RIG) tube | Case study involved husband, two daughters with conflicting opinions, specialist dementia nurse, GP, nursing home manager, staff nurse, dietician | NA | Good |
| Back AL (2005) [65] | Describe conflicts between physicians and family and a step-wise approach to deal with the conflicts | Case study | Nursing home (USA) | ANH in general: NG, IV, considering PEG | Case study involved husband, medical director of nursing home (physician) | NA | Moderate |
| Clibbens R (1996) [66] | Describe a situation where the patient’s difficulties in swallowing became an ethical dilemma for family and the author | Case study | Acute hospital, nursing home (UK) | NG | Case study involved daughter, nurse, hospital team | NA | Poor |
| Hodges MO (1994) [67] | Describe and discuss ethical issues in tube feeding decisions for older people including the case of PLWD | Case study | Nursing home (USA) | NG with considering soft patient restraints | Case study involved sorority friend, nursing home physician, nurse, dietician | NA | Poor |
| Scarpinato N (2000) [68] | Describe the author’s decision making and uncertainty | Case study | Acute hospital, nursing home (USA) | PEG | Case study involved attending physician, nurse, niece (never contact before) | NA | Poor |