Factors Influencing Decision Making for Gastrostomy Tube Placement for People Living with Serious Illness: A Scoping Review

Abstract

Background:

Gastrostomy (feeding) tubes are one way of managing swallowing impairments (dysphagia) in patients living with serious illnesses. For patients, families, and health care providers to make well-informed, preference-aligned decisions regarding gastrostomy tube placement, each group must understand the other’s goals, concerns, and perspectives.

Objective:

Thus, the goal of this scoping review is to characterize the factors influencing gastrostomy tube placement decisions for people with serious illnesses.

Methods:

We first identified relevant studies in a systematic manner, using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram to model our screening process. We then used deductive thematic analysis to describe major themes, reporting the data with descriptive statistics such as percentages. Studies were categorized by their primary participant populations (patients, caregivers, and health care providers), with subthemes organized within the major themes of goals, concerns, considerations, and decisional preferences.

Results:

When considering gastrostomy tube placement, the top themes for patients were extending life (56% of studies), decisional control (56%), quality of life (48%), physical and social limitations and image (44%) and personal factors (44%). For caregivers, the primary themes were decisional control (71% of studies), extending life (50%), personal factors (50%), maintaining nutrition (43%), and knowledge (43%). Finally, health care providers prioritized decisional control (58% of studies), knowledge (53%), quality of life (47%), extending life (42%), and societal factors (42%).

Conclusions:

Our results highlight key factors that may help center patient preferences when making gastrostomy tube-related decisions, as well as critical areas where more research is needed to help improve decision-making surrounding gastrostomy tube placement. Providing adequate knowledge and understanding patient preferences is critical for patients to make high-quality medical decisions regarding gastrostomy tubes.

Introduction

Difficulty swallowing, or dysphagia, is a common sequela of many health conditions that carry a high risk of mortality and negatively impact a person’s daily function or quality of life. Defined as serious illnesses, in many of these health conditions, including amyotrophic lateral sclerosis (ALS), Parkinson’s disease (PD), multiple sclerosis (MS), progressive supranuclear palsy (PSP), dementia, advanced cancer, heart failure, and chronic illness in aging adults with multiple comorbidities, dysphagia is expected to develop at some point during the disease process. In fact, the prevalence of dysphagia can be as high as 65% in advanced cancer,^1,2 98% in ALS,³ 85% in advanced dementia,⁴ and 82% of hospitalized adults over the age of 80.⁵ For most patients with serious illnesses, dysphagia has a low likelihood of resolving, resulting in reduced quality of life⁶ and increased mortality⁷ throughout the duration of the disease process.

When dysphagia is not expected to improve, best practices for its management are unclear and treatment strategies may require significant tradeoffs. Gastrostomy tube placement is one way of managing dysphagia in these cases; however, in the absence of published data suggesting that gastrostomy tube placement improves patient outcomes in these populations, decision-making surrounding dysphagia management is challenging and practice patterns are highly variable.⁸ Because the evidence regarding the benefits of gastrostomy tubes in these populations is mixed regarding survival and life expectancy,^9,10 the decision for their placement could be considered “preference-sensitive,” meaning the choice depends primarily on the personal preferences of patients and caregivers. The literature, however, suggests that factors such as provider preference, socio-economic status, and cultural considerations, may also play a role in determining whether individuals living with serious illnesses should receive a gastrostomy tube.^11,12

Patient-centered care is a key element of high-quality care where patients and their families or caregivers are active team members in the medical decision-making process.¹³ For patients, caregivers, and healthcare providers to work effectively as a team, it is critical for each to understand the other’s goals, concerns, and perspectives when facing a medical decision, such as whether a gastrostomy tube should be placed. To date, there has been limited work synthesizing the existing literature on the factors considered by individuals with serious illnesses, caregivers, and healthcare providers regarding gastrostomy tube placement. With the goal of optimizing patient-centered dysphagia management for individuals with serious illnesses, as a first step, we conducted a scoping review to identify the factors influencing gastrostomy tube placement decisions for this population.

Methods

Search strategy

To find studies related to gastrostomy tube placement, two authors (T.H.K. and B.J.P.) developed a search query using subject headings and terms related to decision-making factors (i.e., quality of life, patient preference, and perspective) and nutritional modes (i.e., feeding, nutrition, and gastrostomy). The search was conducted in PubMed, CINAHL, and PsychInfo databases and included articles published before June 15, 2022, using the following terms: “quality of life” or satisfaction or “level of comfort” or “focus groups” or interview* or survey* or thoughts or perspective* or experience* or misconce* or feel* or attitude* or decision making or psychology or “patient preference”[mesh] or belief* or perception*) and (feeding or enteral or nutrition or gastrostomy or “enteral nutrition”[mesh]) and (tubes or percutaneous endoscopic gastrostomy or PEG) and patients. The articles obtained were then imported into Covidence for data management and extraction. Additional articles were identified through forward and backward citation searches. For forward citation searches, we looked within our search databases for recent literature that cited the articles found using our search terms. For backward citation searches, we used the reference section of articles found using our search terms to identify articles meeting our search criteria. All studies underwent title and abstract screening before moving to the full-text review.

Study selection

Covidence was used to conduct title screens, abstract screens, and full-text reviews and to track agreements and disagreements regarding study inclusion. The study team was comprised of three speech-language pathologists and one clinical research coordinator. Title screens, abstract screens, and full-text reviews were completed by two members of the study team. A third team member was used to review instances where there were disagreements between the initial two reviewers. Articles met inclusion if they were in English and pertained only to adult populations with serious illnesses, including ALS, PD, MS, PSP, dementia, advanced cancer, heart failure, and chronic illness in aging adults with multiple comorbidities.

Because our search was focused on perceptions of gastrostomy tubes, articles that focused on different types of gastrostomy tubes, comparing gastrostomy tube types, or procedures for gastrostomy tube insertion were excluded. We also excluded secondary studies, which we defined as articles that were not the original sources of data but rather summarized previously published findings. These included commentaries, synopses, and narrative reviews. Additionally, we excluded articles that did not have available full-text versions, that were published in languages other than English, or that were unrelated to chronic serious illnesses.

The selection process is visualized in Figure 1 based on the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews Checklist. In total, our search yielded 1733 studies. After eliminating duplicates, screening titles and abstracts, and reviewing full-text articles, we ultimately included 60 articles for data analysis.

FIG. 1.

Literature search and selection process.

Data extraction and analysis

We performed a deductive thematic analysis of the data.¹⁴ The first author (B.J.P.) developed a preliminary set of subthemes based on prior knowledge of the subject. Then, all study team members identified and coded articles using the preliminary set of subthemes if deemed appropriate or by adding additional subthemes when perspectives regarding gastrostomy tube placement that did not match or were not included in the preliminary set were identified. After initial coding by the study team, two authors (B.J.P. and T.H.K.) examined the final set of codes for overlap within subthemes. The second author (T.H.K.) then reviewed the articles for inconsistencies, ensuring that all appropriate codes were included without decontextualization. The subthemes within each category were then tallied by study population (patient, caregiver, healthcare provider) and across all studies.

Results

Thematic analysis

The subthemes were then grouped into four main categories by two authors (B.J.P. and T.H.K.): goals, concerns, considerations, and decisional preferences Table 1. The “goals” category included preferences for gastrostomy tube placement and had five subthemes. “Concerns” involved apprehensions regarding gastrostomy tube placement and had four subthemes. “Considerations” included social-ecological¹⁵ factors that may influence whether a person should or could receive a gastrostomy tube and consisted of six subthemes. “Decisional preferences” covered factors related to decisional control (i.e., the power of the individuals involved in gastrostomy tube placement decision-making), satisfaction, and regret and had two subthemes.

Top subthemes

The most prevalent themes among all studies were decisional control (60% of all studies), extending life (50%), and quality of life (45%). For patients, the five most frequently reported themes were extending life (56% of patient studies), decisional control (56%), quality of life (48%), physical and social limitations and image (44%), and personal factors (44%). For caregivers, the five themes were decisional control (71% of caregiver studies), extending life (50%), personal factors (50%), maintaining nutrition (43%), and knowledge (43%). For healthcare providers, the themes were decisional control (58% of healthcare provider studies), knowledge (53%), quality of life (47%), extending life (42%), and societal factors (42%). Table 2 lists the populations and subthemes for each article.

Table 1.

Themes and Subthemes of Patient, Caregiver, and Healthcare Provider Perspectives of Gastrostomy Tube Placement

Category	Subtheme	Examples
Goals	Extend life	Extend life, improve medical or physical status, try when there is a chance
	Maintain nutrition	Gain energy, have adequate nutrition, prevent weight loss, prevent starvation
	Eat by mouth	Importance of eating by mouth, medication provision
	Reduce symptom burden	Get nutrition efficiently, reduce coughing, reduce symptom distress, prevent choking
	Maintain independence	Maintain normalcy, keep independence
Concerns	Physical and social limitations and image	Social limitations from tube, body image, others will see it, physical limitations from tube, financial burden
	Medical complications	Pain, obstruction, respiratory function, pressure ulcer, aspiration, complications or possible complications, hospitalization, Pneumonia, wound infection, sleep
	Feeding tube maintenance	Fear of surgery, difficult to use, discontinuing PEG in the future, managing feeding tube equipment, tube dislodgement
	Caretaker burden	Caretaker burden, caretaker concerns
Considerations	Quality of life	Perception of life condition or situation in context of serious illness: happiness, enjoyment of tube feeding, reduced social activity
	Personal factors	Caregiver support, trust in health care providers, engagement and motivation in life participation, prior experience with PEG, family pressure, physician pressure, personally against feeding tubes, distrust feeding tubes, time for decision
	Knowledge	Understanding feeding options, sufficient knowledge of topic, discussed tube-feeding decisions, discussed goals of care
	Societal factors	Legal considerations, culture, religion, ethics, decision aligns with societal norms
	Environmental factors	Gastroenterologist consult, availability of services for PEG, standard of care, nursing home request/requirement, facility protocols and environment
	Medical factors	Ability to communicate, affect, lab results, presence of dementia, severity of dysphagia, other options for managing dysphagia, cognitive status, prognosis, surgery indication
Decisional Preferences	Decisional control	Patient control of decision, provider control of decision, caretaker control of decision
Decisional Preferences	Alignment with care preferences	Decision satisfaction, caretaker preference aligns with patient preference, decision regret, decision aligns with patient wishes

PEG, percutaneous endoscopic gastrostomy.

Table 2.

Details of Included Studies, Including Populations and Themes

Author/year	Study title	Population/s	Disease type/s	Subthemes
Aita 2007¹⁶	Physicians’ attitudes about artificial feeding in older patients with severe cognitive impairment in Japan: a qualitative study	Providers	Cognitive impairment	Financial burden, legal considerations, starvation, family pressure, provider control of decision
Albert 1999¹⁷	A prospective study of preferences and actual treatment choices in ALS	Patients	ALS	Survival
Amano 2018¹⁸	Perception of need for nutritional support in advanced cancer patients with cachexia: a survey in palliative care settings	Patients	Cancer	Weight loss, physical limitations, patient control of decision, provider control of decision, caretaker control of decision
Andersen 2018¹⁹	Therapeutic decisions in ALS patients: cross-cultural differences and clinical implication	Patients	ALS	Financial burden, cultural factors, patient control of decision, religious beliefs, discontinuing PEG, prior experience with PEG
Ang 2019²⁰	Patients and home carers’ experience and perceptions of different modalities of enteral feeding	Patients, caretakers	Cancer	Difficult to use, quality of life, body image, others will see it, prior experience with PEG, sufficient information, support
Ang 2019²¹	Health care professionals’ perceptions and experience of initiating different modalities for home enteral feeding	Providers	Long-term enteral feeding	Fear of surgery, social limitations, quality of life, body image, provider control of decision, prefers other feeding method, sufficient knowledge of topic
Benstead 2016²²	Nutrition with gastrostomy feeding tubes for amyotrophic lateral sclerosis	Providers	ALS	Weight loss, respiratory function, general dysphagia, instrumental evaluation
Berkman 2019²³	Speech-language pathologists’ views about aspiration risk and comfort feeding in advanced dementia	Providers	Dementia	Eating by mouth, quality of life, patient control of decision, provider control of decision, caretaker control of decision, general dysphagia, uses compensatory strategies, sufficient knowledge of topic
Bigford 2022²⁴	Views of registered dietitians compared with speech-language pathologists on artificial nutrition and hydration at the end of life	Providers	Dementia	Survival, quality of life, patient control of decision, provider control of decision, religious beliefs, prefers other feeding method, facility protocols and environment, sufficient knowledge of topic
Bjuresäter 2012²⁵	Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding	Caretakers	Cancer, intestinal disease, neurological disease	Survival, caretaker burden, social limitations, caretaker concerns
Bonner 1999²⁶	African American caregivers’ preferences for life-sustaining treatment	Caretakers	Dementia, neurological disease, Parkinson’s disease, stroke	Patient control of decision, trust in providers, discussed tube-feeding decisions with patient
Brotherton 2006²⁷	The impact of PEG feeding upon quality of life in adults	Patients, caretakers	Cancer, cardiac disease, intestinal disease, neurological disease	Caretaker burden, wound infection, social limitations, eating by mouth, difficult to use, quality of life, body image
Brotherton 2009²⁸	Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers’ perceptions	Patients, caretakers	Home enteral tube feeding	Weight loss, patient control of decision, caretaker control of decision, discontinuing PEG, trust in providers, prior experience with PEG, sufficient information
Bui 2020²⁹	Understanding nursing home staff attitudes toward death and dying	Providers	Palliative care population	Patient control of decision, prefers other feeding method
Callahan 1999³⁰	Decision making for percutaneous endoscopic gastrostomy among older adults in a community setting	Patients, caretakers, providers	Cancer, dementia, neurological disease, stroke	Survival, caretaker burden, provider control of decision, religious beliefs, complications, or possible complications
Carey 2006³¹	Expectations and outcomes of gastric feeding tubes	Caretakers	Cancer, ALS, dementia, neurological disease, Parkinson’s disease	Survival, choking, eating by mouth, quality of life, physical limitations, pneumonia, starvation, pain, adequate nutrition, comfort, improved medical or physical status, independence, reduce coughing
Chow 2012³²	Perception on tube feeding among older adults with mild cognitive impairment and their family surrogates	Patients, caretakers	Cognitive impairment	Survival, quality of life, patient control of decision, provider control of decision, caretaker control of decision, sufficient information
Douglas 2020³³	Practitioner knowledge, personal values, and work setting influence registered dietitians’ feeding tube recommendations for patients with advanced dementia	Providers	Dementia	Religious beliefs, facility protocols and environment, sufficient knowledge of topic, personal values
Gil 2018³⁴	Dilemmas for guardians of advanced dementia patients regarding tube feeding	Caretakers	Dementia	Financial burden, religious beliefs, discussed end-of-life decisions with patient, technology use
Golan 2007³⁵	Percutaneous endoscopic gastrostomy in hospitalized incompetent geriatric patients: poorly informed, constrained, and paradoxical decisions	Caretakers, providers	Dementia	Quality of life, family pressure, physician pressure, caretaker control of decision, trust in providers, sufficient information, decision satisfaction, nursing home placement, time for decision, dementia, aspiration, feeding options, gastroenterologist consult, decision aligns with patient wishes
Green 2019³⁶	People with enteral tubes and their carers’ views of living with a tube and managing associated problems: a qualitative interview study	Patients, caretakers	Enteral tube feeding	Survival, wound infection, social limitations, difficult to use, quality of life, trust in providers, feeding tube equipment
Greenfeld 2022³⁷	A bridge to cross: tube feeding and the barriers to implementation of palliative care for the advanced dementia patient	Providers	Dementia	Cultural factors, family pressure, sufficient knowledge of topic
Hanson 2008³⁸	Physicians’ expectations of benefit from tube feeding	Caretakers, providers	Cancer, neurological disease	Survival, weight loss, pneumonia, patient control of decision, provider control of decision, caretaker control of decision, medication provision, nursing home placement, pain, obstruction
Jaafar 2017³⁹	Perceptions of health care professionals on the usage of percutaneous endoscopic gastrostomy in a teaching hospital from a middle-income southeast Asian country	Providers	General population	Financial burden, sufficient information, sufficient knowledge of topic, communication with providers
Körner 2013⁴⁰	Weight loss, dysphagia, and supplement intake in patients with ALS: impact on quality of life and therapeutic options	Patients, caretakers	ALS	Weight loss, quality of life
Kuraoka 2017⁴¹	Factors influencing decision regret regarding placement of a PEG among substitute decision makers of older persons in Japan: a prospective study	Caretakers	Cancer, dementia, neurological disease, Parkinson’s disease, pneumonia	Caretaker burden, physician pressure, patient control of decision, provider control of decision
Labra 2020⁴²	Gastrostomy uptake in motor neuron disease: a mixed-methods study of patients’ decision making	Patients	Motor neuron disease	Survival, choking, weight loss, caretaker burden, social limitations, eating by mouth, quality of life, physical limitations, hospitalization, patient control of decision, importance of eating, respiratory function, energy, distrusts feeding tubes
Leslie 2008⁴³	Food for thought: how do patients with ALS decide about having a PEG?	Patients, caretakers	ALS	Survival, weight loss, fear of surgery, eating by mouth, quality of life, others will see it, patient control of decision, provider control of decision, caretaker control of decision, trust in providers, energy
Lin 2011⁴⁴	A survey of the reasons patients do not chose percutaneous endoscopic gastrostomy/jejunostomy (PEG/PEJ) as a route for long-term feeding	Patients, caretakers	Cancer, dementia, neurological disease	Wound infection, body image, financial burden, hospitalization, provider control of decision, sufficient information, prefers other feeding method, services for PEG, surgery indication
Liu 2017⁴⁵	Terminally ill Taiwanese cancer patients’ and family caregivers’ agreement on patterns of life-sustaining treatment preferences is poor to fair and declines over a decade: results from two independent cross-sectional studies	Patients, caretakers	Cancer	Patient control of decision, caretaker control of decision, caretaker preference aligns with patient preference
Lopez 2010⁴⁶	Nurses’ perspectives on feeding decisions for nursing home residents with advanced dementia	Providers	ALS	Survival, weight loss, quality of life, provider control of decision, caretaker control of decision, ethics, sufficient information
Lopez 2022⁴⁷	Association of nursing home organizational culture and staff perspectives with variability in advanced dementia care	Providers	Dementia	Survival, quality of life, facility protocols and environment
Lubart 2004⁴⁸	Attitudes of relatives and nursing staff toward tuboenteral feeding in severely demented patients	Caretakers, providers	Dementia	Survival, weight loss, provider control of decision, caretaker control of decision, discontinuing PEG
Malhotra 2021⁴⁹	Discordance between dementia caregivers’ goal of care and preference for life-extending treatments	Caretakers	Dementia	Survival, starvation, physician pressure, caretaker control of decision, ethics, decision regret
Martin 2012⁵⁰	Patients’ perspectives of living with a PEG	Patients	Cancer, inflammatory disease, neurological disease	Eating by mouth, difficult to use, quality of life, physical limitations, decision satisfaction, sleep
Mezey 1996⁵¹	Life-sustaining treatment decisions by spouses of patients with Alzheimer’s disease	Caretakers	Dementia	Quality of life, physician pressure, patient control of decision, caretaker control of decision, decision satisfaction, decision aligns with societal norms, decision aligns with patient wishes
Mitchell 2000⁵²	A cross-national survey of tube-feeding decisions in cognitively impaired older persons	Caretakers	Cognitive impairment	Survival, quality of life, provider control of decision, caretaker control of decision, trust in providers, ethics, decision satisfaction, aspiration, decision regret, decision aligns with patient wishes
Modi 2010⁵³	Perspectives of community members regarding tube feeding in patients with end-stage dementia: findings from African American and Caucasian focus groups	Community	Dementia	Survival, physician pressure, patient control of decision, religious beliefs, ethics, against feeding tubes
Muoki 2021⁵⁴	The decision making experiences of caregivers regarding feeding tube placement in community-dwelling adults	Caretakers	General population	Survival, choking, pneumonia, patient control of decision, provider control of decision, sufficient knowledge of topic, aspiration, caretaker concerns
Nakanishi 2014⁵⁵	PEG tubes are placed in elderly adults in Japan with advanced dementia regardless of expectation of improvement in quality of life	Patients	Cerebrovascular disease, dementia	Survival, choking, caretaker burden, eating by mouth, quality of life, physical limitations, pneumonia, medication provision, services for PEG
Ni 2020⁵⁶	Preferences for feeding tube use and their determinants among cognitively intact nursing home residents in Wuhan, China: a cross-sectional study	Community	General population	Survival, caretaker burden, prefers other feeding method, against feeding tubes, try when there’s a chance, distrusts feeding tubes
Pols 2016⁵⁷	A matter of taste? Quality of life in day-to-day living with ALS and a feeding tube	Patients, caretakers, providers	ALS	Eating by mouth, quality of life, body image, physical limitations, hospitalization
Quill 1989⁵⁸	Utilization of nasogastric feeding tubes in a group of chronically ill, elderly patients in a community hospital	Providers	Cancer, organic brain syndrome, stroke	Survival, difficulty to use, quality of life, body image, financial burden, starvation, physician pressure, patient control of decision, caretaker control of decision, complications or possible complications, time for decision, adequate nutrition, comfort
Sharp 2009⁵⁹	Feeding tube placement in patients with advanced dementia: the beliefs and practice patterns of speech-language pathologists	Providers	Dementia	Survival, weight loss, quality of life, physical limitations, pneumonia, financial burden, legal considerations, physician pressure, patient control of decision, caretaker control of decision, nursing home placement, services for PEG, cognitive status, ability to communicate, affect
Shega 2003⁶⁰	Barriers to limiting the practice of feeding tube placement in advanced dementia	Providers	Dementia	Survival, quality of life, pneumonia, financial burden, legal considerations, patient control of decision, provider control of decision, caretaker control of decision, patient prognosis, adequate nutrition, improved medical or physical status, cognitive status, affect, pressure ulcer, standard of care
Snyder 2013⁶¹	Impact of a decision aid on surrogate decision makers’ perceptions of feeding options for patients with dementia	Caretakers	Dementia	Survival, choking, weight loss, caretaker burden, social limitations, eating by mouth, starvation, patient control of decision, complications or possible complications, services for PEG, feeding is efficient, adequate nutrition, independence, aspiration, normalcy, tube pulling or removal, time to stop tube feeding
Stutzki 2012⁶²	Attitudes toward assisted suicide and life-prolonging measures in Swiss ALS patients and their caregivers	Patients, caretakers	ALS	Survival
Teno 2011⁶³	Decision making and outcomes of feeding tube insertion: a five-state study	Caretakers	Dementia	Choking, weight loss, quality of life, hospitalization, physician pressure, provider control of decision, religious beliefs, sufficient information, decision satisfaction, complications or possible complications, adequate nutrition, comfort, feeding options, decision regret, possible benefits, discussed tube-feeding decisions with physician
Todd 2005⁶⁴	PEG: the role and perspective of nurses	Providers	PEG tube feeding	Provider control of decision, caretaker control of decision, sufficient information, sufficient knowledge of topic, communication with providers
Van Bruchem-Visser 2019⁶⁵	Percutaneous endoscopic gastrostomy in older patients with and without dementia: survival and ethical considerations	Patients	Cancer, cerebral diseases, dementia, Parkinson’s disease, stroke, pneumonia	Starvation, provider control of decision, sufficient information, complications or possible complications, importance of eating
Van Rosendaal 1997⁶⁶	Decision making and outcomes for percutaneous endoscopic gastrostomy: a pilot study	Patients, caretakers	ALS, cancer, neurological disease	Survival, quality of life, physician pressure, caretaker control of decision, religious beliefs, sufficient information, patient prognosis, decision satisfaction
Van Rosendaal 1999⁶⁷	How are decisions made about the use of percutaneous endoscopic gastrostomy for long-term nutritional support?	Patients, caretakers	ALS, cancer, central nervous system disease or injury, neurodegenerative	Survival, quality of life, starvation, physician pressure, patient control of decision, provider control of decision, caretaker control of decision, religious beliefs, sufficient information, support
Vesey 2008⁶⁸	A pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditions	Patients, caretakers	Multiple sclerosis, neurological disease, progressive pharyngeal scarring	Survival, weight loss, others will see it, physician pressure, patient control of decision, caretaker control of decision, sufficient information
Vitale 2006⁶⁹	Tube feeding in advanced dementia: an exploratory survey of physician knowledge	Providers	Dementia	Weight loss, pneumonia, starvation, cultural factors, instrumental evaluation, adequate nutrition, lab results, dementia, pressure ulcer
Vitale 2011⁷⁰	Tube feeding in patients with advanced dementia: knowledge and practice of speech-language pathologists	Providers	Dementia	Survival, quality of life, pneumonia, improved medical or physical status
Wen 2019⁷¹	Factors predisposing terminally ill cancer patients’ preferences for distinct patterns/states of life-sustaining treatments over their last 6 months	Patients	Cancer	Quality of life, trust in providers, patient prognosis, symptom distress
Wright 2013⁷²	United States acculturation and cancer patients’ end-of-life care	Patients, caretakers	Cancer	Survival, extending life over comfort
Yeh 2010⁷³	Limited PEG tube use: the experience of long-term care directions	Providers	General population	Survival, body image, financial burden, sufficient information, sufficient knowledge of topic
Yeh 2013⁷⁴	Percutaneous endoscopic gastrostomy placement: caregiver decision making in Taiwan	Caretakers	PEG tube feeding	Decision satisfaction, feeding options, perceived as suffering
Zarotti 2019⁷⁵	Health care professionals’ views on psychological factors affecting nutritional behavior in people with motor neuron disease: a thematic analysis	Providers	Motor neuron disease	Social limitations, patient control of decision, sufficient knowledge of topic, engagement, and motivation

ALS, amyotrophic lateral sclerosis.

Table 3.

Goals Related to Gastrostomy Tube Placement

Theme	Patient studies(n = 27)	%	Caregiver studies(n = 14)	%	Healthcare provider studies(n = 19)	%	All studies(n = 60)	%
Extend life	15	56	7	50	8	42	30	50
Maintain nutrition	9	33	6	43	7	37	22	37
Eat by mouth	8	30	2	14	1	5	11	18
Reduce symptom burden	3	11	5	36	2	11	10	17
Maintain independence	0	0	2	14	0	0	2	3

Table 4.

Concerns Related to Gastrostomy Tube Placement

Theme	Patient studies(n = 27)	%	Caregiver studies(n = 14)	%	Healthcare provider studies(n = 19)	%	All studies(n = 60)	%
Physical and social limitations and image	12	44	4	29	8	42	24	40
Medical complications	10	37	6	42	6	32	22	37
Feeding tube maintenance	7	26	2	14	2	11	11	18
Caretaker burden	5	19	4	29	0	0	9	15

Table 5.

Considerations Related to Gastrostomy Tube Placement

Theme	Patient studies (n = 27)	%	Caregiver studies (n = 14)	%	Healthcare provider studies (n = 19)	%	All studies (n = 60)	%
Quality of life	13	48	5	36	9	47	27	45
Personal factors	12	44	7	50	7	37	26	43
Knowledge	8	30	6	43	10	53	24	40
Societal factors	5	19	5	36	8	42	18	30
Environmental factors	3	11	2	14	5	26	10	17
Medical factors	3	11	1	7	5	26	9	15

Table 6.

Decisional Preferences Related to Gastrostomy Tube Placement

Theme	Patient studies (n = 27)	%	Caregiver studies (n = 14)	%	Healthcare provider studies(n = 19)	%	All studies(n = 60)	%
Decisional control	15	56	10	71	11	58	36	60
Alignment with care preferences	5	19	6	43	3	16	14	23

Top subthemes by category

Goals

Extending life was the most reported goal across all studies (50% of all studies) and for each group (patient, caregiver, and healthcare providers). Maintaining nutrition was the second most reported goal for all groups, appearing as a primary theme in 37% of all studies. However, the third most reported goal differed among the groups, with eating by mouth (30% of patient studies) being the third most reported goal for patients and reducing symptom burden (36% of caregiver studies and 11% of healthcare provider studies) for caregivers and healthcare providers. Table 3 lists the most reported goals for gastrostomy tube placement compared by group.

Concerns

Physical and social limitations were the most frequently reported concern across all studies (40% of all studies) and the most frequently reported concern for patients and healthcare providers (44% of patient studies and 42% of healthcare provider studies). Medical complications were the second most reported for patients and healthcare providers (37% of patient and healthcare provider studies) and the most reported concern for caregivers (42% of caregiver studies). The second most reported concern for caregivers was evenly split between caregiver burden and physical limitations (29% of caregiver studies). Concern for gastrostomy tube maintenance was the third most reported concern across all studies (18% of all studies); however, it was the least common concern among the caregiver studies, with only 2 of 14 studies containing this theme. Table 4 lists the most reported concerns about gastrostomy tube placement compared by group.

Considerations

Overall, quality of life was the most frequently reported consideration of all three groups (45% of all studies), followed by personal factors (43%). However, the order of priority differed among the groups. For patients, the most common consideration was quality of life (48% of patient studies), followed by personal factors (44%) and knowledge (30%). In contrast, for caregivers, personal factors were the most found consideration (50% of caregiver studies), followed by knowledge (43%); quality of life and societal factors were both the third most reported consideration (36%). For healthcare providers, knowledge was the most reported consideration (53% of healthcare provider studies), followed by quality of life (47%) and societal factors (42%). Table 5 lists the most reported considerations for gastrostomy tube placement compared by group.

Decisional preferences

Only two subthemes emerged in this category. The subtheme of decisional control was the most prevalent, appearing in 60% of all studies. Alignment with care preferences was identified in 23% of all studies. Table 6 lists decisional preference themes found in the literature compared by group.

Discussion

The goal of our review was to identify factors involved in gastrostomy tube placement decisions for individuals with serious illnesses. Although there are some common factors, there are also differences in the goals, concerns, and considerations of patients, caregivers, and healthcare providers. Our results highlight key factors that may assist in centering patient preferences when making decisions related to gastrostomy tubes. Moreover, we identified several critical areas where further research is needed to enhance decision-making practices surrounding gastrostomy tube placement.

Gastrostomy tube-related decisions are complex

Our findings highlight the fact that for people living with serious illnesses who develop dysphagia, the decision to have a gastrostomy tube placed is influenced by many internal and external factors. Both healthcare providers and caregivers are frequently involved in the decision-making process and bring with them a unique set of perspectives to the decision, contributing to the large range of considerations one must reflect upon when making this decision.

As such, it is not surprising that current research indicates that patients often feel that they are excluded from medical decisions,⁷⁶ that doctors often fail to communicate adequate information,⁷⁷ and that medical information can be difficult to understand.⁷⁸ Shared decision-making is a collaborative process between patients, caregivers, and healthcare providers that encourages patients to actively weigh the risks and benefits of a treatment and match it to their personal preferences.⁷⁹ Implementing tools to help facilitate shared decision-making in gastrostomy tube-related decisions may improve decision quality, support patients in deciding the means of treatment, and address commonly reported barriers to patient-centered care.

Understanding preferences for decision making is important for patient-centered care

This study defines “decisional control” as the power of the individuals responsible for ultimately deciding whether to place a gastrostomy tube. For patients, caregivers, and healthcare providers, decisional control was the most reported factor, highlighting the importance of the preferences of the gastrostomy tube decision maker. Interestingly, the literature suggests that as many as 31% to 52% of patients and caregivers prefer not to be the primary decision maker, opting instead to defer the decision to physicians, who are seen as the medical experts.^18,32,63 When patients and caregivers feel that they lack sufficient information, communication, or time from healthcare providers, they may feel uncomfortable making decisions related to gastrostomy tubes.^28,53,67 Therefore, it is critical that healthcare providers provide sufficient decision-related information and inquire about the preferred roles of patients and their caregivers in the decision-making process.

Extending survival is a top priority for individuals living with critical illnesses

Factors associated with extending survival were unsurprisingly a top priority for all three groups. However, it remains unclear whether gastrostomy tube placement positively impacts survival in individuals with severe illnesses. For individuals with advanced dementia, the literature clearly states that gastrostomy tubes do not extend survival.⁸⁰ For those with ALS, the findings are mixed. Some studies suggest that gastrostomy tube placement provides a survival benefit⁸¹ while others indicate that it reduces life expectancy.^10,82 For many diseases, the impact of gastrostomy tube placement on survival has yet to be studied. Research in this area is challenging due to the heterogeneity of the disease processes and the difficulty of overcoming selection bias related to gastrostomy tube placement-related decisions. Despite these barriers, more research in this area is crucial to assist individuals living with serious illnesses in making well-informed decisions aligned with their preferences.

Future directions

To facilitate shared decision-making in clinical practice, help elicit patient preferences, and increase patient knowledge surrounding medical decisions, tools such as decision aids can be used to supplement physician counseling.⁸³ Decision aids have been designed and implemented for >150 diseases,⁸⁴ such as dysphagia management decisions for caregivers of patients diagnosed with advanced dementia.⁸⁵ These decision aids, however, may not be suitable for individuals with other types of serious illnesses. Unlike many people living with advanced dementia who are unable to communicate their care preferences, individuals with other serious illnesses (i.e., advanced cancer, heart failure, etc.) can actively engage in the medical decision-making process. Future work focused on the development of tools such as decision aids to promote and optimize shared decision-making surrounding gastrostomy tube placement for other serious illnesses may help patients make well-informed decisions that align with their preferences.

Limitations

A limitation of our study was the exclusion of non-English studies. This may mean that our review did not fully capture the experiences of non-English-speaking individuals with serious illnesses, caregivers, or healthcare providers. Future studies should compare non-English studies with those discussed in this article to identify any differences in the feelings, perceptions, and decision-making factors among patients, caregivers, and healthcare providers regarding the use of gastrostomy tubes in serious illnesses.

Additionally, we attempted to explore these factors broadly, including studies from a range of life-limiting illnesses such as ALS, PD, dementia, and metastasized cancer. In doing so, we may not have sufficiently captured factors specific to certain diseases. Additionally, as prior knowledge was used to define an initial set of themes, some degree of confirmation bias cannot be ruled out. Future studies should investigate whether there are disease-specific goals, concerns, considerations, and decisional control factors associated with gastrostomy tube placement and use other methodologies such as unstructured interviews to confirm findings.

Conclusion

To our knowledge, this is the first study summarizing the feelings, perceptions, and decision-making factors of patients, caregivers, and healthcare providers regarding gastrostomy tube placement in individuals with serious illnesses. By understanding the similarities and differences between the three groups in these areas, we gain greater insight into the priorities of these important stakeholders. This study serves as an important first step toward improving patient-centered dysphagia management in vulnerable populations with serious illnesses.

Footnotes

Authors’ Contributions

Conception: B.J.P. and T.H.K. Data acquisition: B.J.P., T.H.K., B.A.M., and L.M. Analysis: B.J.P. and T.H.K. Article preparation: B.J.P., T.H.K., B.A.M., and L.M.

Data Availability Statement

Derived data supporting the findings of this study are available from the corresponding author upon request.

Funding Information

This work was funded by a grant from the NIH National Institute of Neurological Disorders and Stroke (Grant Number K23NS123369; principal investigator: B.J.P.). B.J.P. receives research and salary support from the NIH National Institute of Neurological Disorders and Stroke (Grant Number K23NS123369) and salary support from MGH Institute of Health Professions. T.H.K. receives salary support from MGH Institute of Health Professions. B.A.M. receives salary support from Massachusetts General Hospital, Patient Centered Outcomes Research Institute (PCORI) (Grant Number IHS-2022C1-26100), and the American Board of Internal Medicine (ABIM). L.M. receives salary support from MGH Institute of Health Professions.

Author Disclosure Statement

No competing financial interests exist.

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