Nutritional Needs and Experiences of Patients with Advanced Head and Neck Cancer: A Scoping Review

Abstract

Objective(s)

Patients with advanced head and neck cancer (AHNC) are susceptible to malnutrition due to disease progression and side effects of cancer treatments. Current evidence on the effectiveness of nutritional interventions is limited. This scoping review aims to identify the nutritional needs and experiences of patients with AHNC and provide an overview of nutritional interventions implemented to prevent malnutrition.

Methods

CINAHL via EBSCO, PubMed, EMBASE via OVID, Web of Science, Scopus and Google Scholar were searched from inception to August 2024, and articles were screened based on predefined inclusion criteria. The Joanne Briggs Institute Scoping Review Framework guided the review. The Patterns, Advances, Gaps, Evidence for Practice, and Research Recommendations (PAGER) framework was used to synthesise findings.

Results

Of 1703 articles identified, 32 met the inclusion criteria, including 13 retrospective studies, 9 prospective studies, 7 reviews and 3 guidelines. Using the PAGER pattern chart, 4 themes were identified: (1) the use of enteral tube feeding, (2) identification and treatment of malnutrition, (3) the effects of palliative treatment on nutrition and (4) the experiences of patients and carers. Enteral feeding was the most common intervention to manage malnutrition; however, other interventions such as dietary counselling, oral nutritional supplements and parenteral nutrition were also employed. These interventions should be tailored to specific needs of the patients.

Conclusions

Weight loss and impaired oral intake were associated with psychosocial distress affecting patients and carers. Future research is needed to explore the experiences of patients, carers and healthcare professionals regarding nutrition and evaluate the effectiveness of alternative nutritional strategies.

Introduction

Head and neck squamous cell carcinoma (HNSCC) and its related variations arise from several anatomical subsites within the oral cavity, oropharynx, hypopharynx and larynx. ¹ Patients with head and neck cancer (HNC) often present late with stage III or IV or advanced disease and have a poorer prognosis.^2,3 Overall, 5-year survival rates are poor (34-77%), with 59% of patients succumbing to disease progression ⁴ and 50% to 60% of patients with stage III or IV cancer developing recurrence or distant metastases. ³ Despite advances in medical and surgical oncology, patients diagnosed with advanced HNC (AHNC) or recurrent HNC often transition to palliative care due to poor prognoses and limited curative options. ⁵ Surgery or radiotherapy is often unsuitable for these patients, leaving anti-cancer treatments or palliative supportive care as options. ³ Palliation for patients with HNC is initiated following confirmation of an incurable diagnosis or when curative treatment has been declined. Palliative care for individuals with advanced cancer aims to improve the quality of life (QOL) of both patients and their families following a life-limiting diagnosis. This includes improving the physical, psychological, social and spiritual aspects of patients’ lives. Despite its significance, the palliative care needs and experiences of this patient population remain poorly understood.^6,7

Patients with AHNC face a plethora of challenges affecting their QOL. These symptoms can be challenging to manage and include compromised airways, communication difficulties, dysphagia, fatigue, fistulas, bleeding, pain, feeding issues and psychological issues such as depression and anxiety.^8,9 Early identification and management of physical symptoms caused by tumour progression can prevent and relieve suffering. ⁹

Malnutrition is prevalent among patients with HNSCC, with 35% to 60% of patients being malnourished at diagnosis. ¹⁰ The effects of previous HNC treatments (eg, surgery, chemoradiotherapy) and the onset of new symptoms caused by recurrence or a new incurable cancer diagnosis (eg, dysphagia, difficulty chewing, tumour obstruction, trismus, pain) contribute to nutritional deficits and malnutrition.^11,12 Advanced cancer treatments can help with symptom control (eg, debulking surgery, radiotherapy, chemotherapy, immunotherapy) but also have side effects, potentially affecting nutritional management, such as colitis, mucositis or xerostomia, leading to weight loss and malnutrition.^12–14

Feeding issues due to tumour position and progression into surrounding anatomical structures contribute to weight loss and sarcopenia, causing a decline in physical function and negatively affecting advanced cancer treatments. ¹⁵ Malnutrition is linked to an increase in treatment interruptions, reduced treatment tolerance, increased complications following surgery, longer hospital admissions and increased mortality.^16–18 Additionally, malnutrition is associated with reduced QOL, fatigue, reduced performance status and psychological distress.^13,19,20 To prevent malnutrition, nasogastric, gastrostomy or jejunostomy tubes are frequently placed in this group. ²¹ The tumour itself causes metabolic changes, increasing energy expenditure and fat breakdown, alongside muscle protein degradation caused by the release of tumour necrosis factor and interleukins 1 and 6, leading to anorexia (reduced appetite), muscle wasting and weight loss. ¹⁰ This metabolic syndrome, called cachexia, adds further complexity to an already intricate problem. Addressing the nutritional challenges faced by this patient population contributes to a holistic approach to advanced cancer care. ¹⁰

While the symptoms of AHNC, either due to previous treatment side effects and/or tumour locality and their contribution to malnutrition are documented, there is a lack of evidence regarding the impact and role of various nutritional interventions. Therefore, a scoping review was chosen to identify and map the breadth of evidence available on the nutritional needs and experiences of patients with AHNC undergoing noncurative cancer treatment or those with incurable disease receiving palliative and supportive care. The review will also provide a descriptive overview of the nutritional interventions implemented, the impact of malnutrition and the effects of any palliative care on nutrition, alongside seeking to understand the experiences of both patients and their carers. By examining the available evidence on nutrition, this scoping review will help to identify gaps in knowledge, identify challenges in nutritional management, guide clinical practice and improve the nutritional care of patients with AHNC.

Methods

Study Design

The Joanne Briggs Institute (JBI) Scoping Review Framework ²² was used to guide the design and conduct of this scoping review. The Preferred Reporting Items of Systematic Reviews and Meta-Analyses extension guidelines for Scoping Reviews (PRISMA-ScR) ²³ were followed when reporting our findings. A review protocol was developed, peer reviewed and published in the Open Science Framework (https://osf.io/w6znk).

Search Strategy

The search strategy aimed to locate all relevant published literature. An initial, limited search was undertaken on Medline and CINAHL to identify keywords and phrases that were used as Medical Subject Headings (MeSH) terms and were discussed with a research librarian. The identified MeSH terms were used to search 5 databases, including PubMed, CINAHL, Scopus, Web of Science and Embase. Google Scholar was also searched to target grey literature sources (such as guidelines, institutional repositories and policy websites) and maximise the literature searched in line with JBI guidance. Screening in Google Scholar stopped following 10 consecutive ineligible results. The reference lists of all identified papers included in the review were screened for additional relevant studies. The databases were searched from inception until August 2024. The search terms and keywords that were used are presented in Table 1.

Table 1.

Search Terms and Keywords.

Palliative OR palliative care OR terminal OR end of life OR incurable OR advanced cancer OR supportive care OR symptom management OR symptom control OR death OR dying AND Nutrition* OR malnutrition OR nutrition* support OR enteral nutrition* OR artificial nutrition OR tube feeding OR parenteral nutrition AND Head and neck cancer OR head and neck neoplasm* OR advanced head and neck cancer OR oncology

The eligibility criteria included all primary and secondary studies, including qualitative, quantitative, mixed-methods studies, systematic reviews, commentary articles, clinical guidelines, narrative reviews and expert opinions published in English and focused on nutrition or malnutrition in patients with AHNC. As per the JBI guidelines for scoping reviews, grey literature was included to ensure that the scoping review was as comprehensive and inclusive as possible. This included any nutritional interventions started before an advanced cancer diagnosis and continued or nutritional interventions implemented following an advanced cancer diagnosis. Nutritional interventions included were dietary modification, oral nutritional supplements (ONS), enteral feeding or parenteral feeding used alone or together. Nutritional interventions delivered in the acute, community or hospice settings and patients’ experiences of these interventions were also included. Additional outcomes including weight, body mass index (BMI) and any impact of the nutritional interventions on patient-reported outcome measures such as QOL, measured by a validated questionnaire, were included.

Data Extraction, Analysis and Synthesis

All identified papers (from databases, Google Scholar and grey literature) were merged into EndNote 2020 for de-duplication and manual verification. The papers were imported to Covidence for further de-duplication and screening. Grey literature sources were screened, and the quality was assessed using the Authority, Accuracy, Coverage, Objectivity, Date and Significance (AACODS) checklist. ²⁴ Items failing this were excluded at the source of screening. Titles and abstracts were screened by 3 independent reviewers with relevant papers retrieved in full and imported into Covidence, a web-based collaboration software platform that streamlines the production of literature reviews. The full texts of selected papers were assessed by 2 or more independent reviewers. Any disagreements that arose between the reviewers were resolved through discussion or with an additional reviewer. Included papers were not appraised for their quality in line with scoping review guidelines. ²² Data were extracted using an extraction table developed by the authors, which was piloted before use. The extraction table included information about country of origin, aim, design, study population (if applicable), data collection and analysis methods, results and key implications. The extraction table is included in Table 2. Limitations within the current literature were identified and presented.

Table 2.

Data Extraction.

Author, year, country	Aims/objectives	Design/participant/setting	Methods	Main findings	Discussion, limitations and implications
Al-Mamgani et al, 2009 48 Netherlands	To evaluate the efficacy and toxicity of hypofractionated radiotherapy in patients with HNSCC Ineligible for curative treatment.	Prospective/ retrospective study of 158 patients treated with hypofractionated RT at The Christie Hospital, Manchester. Median age was 68.5 (range: 41-95) years; 74% of patients were males.	Hypo fractionated RT (50 Gy in 16 fractions of 3.125 Gy, given 5 times a week). End points were response rates, loco-regional control, disease-free survival, overall survival, acute and late toxicity, and retrospective assessment of QoL.	Following treatment, 24% of patients’ weight was stable and 50% of patients who survived 1 year gained weight. 31/48 patients could eat semi-solid food, but 14 remained tube dependent.	QOL was completed retrospectively. Selection bias with early-stage laryngeal cancer. Due to mucositis, enteral feeding tubes are used to support nutrition during this treatment.
Cocks et al, 2016 40 UK	To provide recommendations on caring for palliative HNC patients.	Guidelines	Expert opinion. This is the official guideline endorsed by the specialty associations involved in the care of HNC patients in the UK.	"Feeding at risk” should be discussed with patients, with modified texture diets used to support nutrition. Enteral feeding tube decisions depend on prognosis and whether an NGT can bypass the tumour. Feed tolerance may be an issue.	Expert opinion. Enteral feeding should be considered early in patients who are unable to eat and drink and may provide a route for fluids and medications when dying.
Cotogni et al, 2021 38 Italy	To provide a guide on prescribing nutritional support to PC patients.	Narrative review	Analysis of the literature evidence in palliative cancer patients.	Mucositis often necessitates supplementary enteral feeding. PEG or RIG is recommended for long-term use, while NGT is suitable for short-term (up to 6 weeks). HEF can support patients, but should be withdrawn as the end of life approaches.	Prognosis should be taken into consideration when placing enteral feeding tubes. Acknowledges limited data on nutrition in PC.
Dastidar et al, 2010 26 India	To observe and manage patients with incurable HNC.	A retrospective analysis of 100 cases of advanced, unresectable HNC patients admitted to the Department of ENT. Mostly from West Bengal. 89 patients were male and the median age was 48 years. Median weight 44 (30-62)	The primary endpoints were symptom relief with a detailed assessment of symptomatology. Secondary endpoints were disease progression to the end of life. The patients were asked to grade the severity of their most distressing symptom on a pragmatic scale of mild, moderate and severe.	In a cohort of 100 patients, 16 required a Ryle's tube, 11 needed a jejunostomy, and 6 died from malnutrition. Dysphagia and mucositis often necessitated enteral feeding. Oral intake was supported through strategies such as upright positioning, small boluses, and slow feeding.	Small sample size. A short course of radiotherapy, judicious use of analgesics, nutritional support, and an optimised multidisciplinary approach of management are the goals to get the best therapeutic benefit.
del Rosario- Ocampo, 2012 29 Philippines	To describe the HNC cases referred to the Madre de Amor Hospice Foundation.	Retrospective review of 80 cases between 1995 and 2008 referred to the Madre de Amor Hospice Foundation. 49 were male and 31 were female. The patients’ ages ranged from 21 to 90 years.	Cases were reviewed, noting characteristics and identifying demographics. The disease characteristics were described as to location, diagnosis, and treatment received. Finally, the functional characteristics of the patients with regard to QOL were listed.	Malnutrition was a common and severe issue, often preventing feeding tube placement due to patient frailty. Providing nutrition and medications without tubes was difficult, and caregivers experienced significant distress witnessing their loved ones deteriorate without being able to help.	Small sample size. Symptoms include pain, dysphagia, weight loss, disfigurement, depression and xerostomia. An early alternative mode of feeding should be instituted early, before patients become emaciated.
Heinonen et al, 2018 55 Finland	To evaluate the role of a SPC pathway for HNC patients.	Retrospective case review, 60 patients treated at the Centre of Palliative Care at the Comprehensive Cancer Centre of the Helsinki University Hospital during 12 months between 1 May 2014 and 30 April 2015. The mean age of the patients was 67 years, and 49 were male.	Patients were identified using ICD-10 codes, and data were collected on demographics, tumour details, previous treatments, hospital and emergency visits, and hospitalisations. Cause and place of death were obtained from death certificates. Follow-up continued for 12 months or until death.	Twenty-seven (45%) patients had a PEG tube, and 7% received nutritional counselling. Nutrition wasn’t identified as a reason for admission to the ED.	A small retrospective study. The symptoms and their development were not systematically reported in patient records. An intense PC pathway from the Cancer centre to home care is needed to ensure good quality of PC and a dignified death.*****
Espeli et al, 2022 58 Switzerland	To describe the care approaches and integration of SPC for patients with relapsed and/or metastatic HNC at a single institution over 4 years.	In a retrospective review from 2016 to 2019, 86 patients with relapsed/metastatic HNC were identified, with 63 referred to SPC. Most patients were male (66), with a median age of 69 and a median BMI of 20.	Site, type and lines of treatment; treatment response; referral to SPC; type of symptoms; tracheostomy and/or feeding-tube presence; and site of death were documented. Comparisons were made between patients benefitting from PC integration versus standard care.	48.8% had a feeding tube with 49.2% of patients receiving PC and 47.8% without PC. Feeding tubes were evident in 7.2% of patients in the last month of life. The presence of a feeding tube was a clinical predictor of worse QOL.	Both patients and caregivers can experience significant psychosocial distress as a result of feeding tubes. Small sample size, single-centre study, retrospective design, introducing bias related to data collection.
Ethunandan et al, 2005 46 UK	To evaluate the quality of the dying experience in a cohort of HNC patients by a retrospective analysis of potential indicators of care.	Retrospective case note analysis of 50 randomly selected deceased patients from a H + N database at the Queen Alexandra Hospital, Portsmouth, UK. The study included 19 males and 13 females, with an age range of 33 to 94 years.	The demographic details, disease status at death and details of primary and subsequent palliative treatment were noted. Place of death, presence of relatives, interventions and resuscitation, emergency admissions and nursing notes were reviewed.	Six patients had PEG tubes, and 1 had an NGT, with no feeding tubes inserted in the final week of life. Management included dietary modifications and parenteral fluids. Three patients required emergency admission for swallowing issues. Predicting the need for feeding tubes remains complex.	There is a general paucity of information in the literature in this area. Dying is a highly personal experience for the patient and the patient's family, and it is impossible to assess quality of care without imposing subjective value in the judgment.
Forbes, 1997 33 UK	To outline the population of patients referred to a hospice for PC, the nature, the incidence and management of their problems and the role of the hospice in the patients’ care.	Retrospective case review of 38 patients admitted to St Gemma's Hospice over 3 years from 1990. There were 32 male and 6 female patients. The median age was 64 years (range 41-87 years).	Hospice inpatient notes, including those of patients who died after discharge, were reviewed. Drug charts were examined for analgesic use, and symptom control and psychosocial issues were assessed. Problem lists created through discussions at admission provided key insights. For patients with multiple admissions, only data from their final admission were analysed.	Dysphagia affected 74% of patients, and 79% experienced weight loss. Most were on soft or sloppy diets; 1 had a gastrostomy. Eight patients used NGTs, with 5 experiencing recurrent blockages. Four patients chose oral intake despite aspiration risks. All NGTs were in place before hospice admission.	Small sample size from a single hospice limiting generalisability. Decisions about nutritional support were decided in discussion with the patient by weighing possible benefits versus burdens. Possible burdens included transfer back to an acute hospital for NGT replacement. Nutritional support remains a complex ethical and medical issue, with many patients preferring oral intake despite aspiration risks.
Haas et al, 2023 49 Austria	To evaluate the prognostic relevance of malnutrition as determined by the GNRI for the response to immunotherapy in recurrent and/or metastatic HNSCC.	A retrospective review of 162 patients who received nivolumab or pembrolizumab as palliative treatment between 2016 and 2021 at the Vienna General Hospital. The median age was 65 years (range 28-85); 115 patients were male and 47 female.	The associations between the GNRI and progression-free survival, overall survival and the disease control rate were computed. Differences in patient characteristics, demographics, BOR and DCR between the 2 GNRI classifications were analysed using Pearson's chi-squared test.	Dysphagia and weight loss were prevalent among patients, with many on modified diets or using NGTs/gastrostomies. Despite influencing survival, both enteral nutrition and parenteral nutrition were linked to shorter progression-free and overall survival. Prior to treatment, 49 patients required nutritional support.	Despite the small, retrospective study using only 1 assessment tool, the GNRI may be a useful prognostic tool for survival and treatment response. Clinicians should routinely assess nutritional status in patients receiving ICI due to its impact on outcomes.
Homer et al, 202430 UK	To set standards of care and best practice. The guidelines can also be used as an educational resource for clinicians and for insight into HNC care for non-clinicians involved in commissioning and managing services for patients with HNC.	Guidelines	Literature review and expert opinion	Early nutritional assessment is essential with nutritional interventions aiming to maintain QOL and manage symptoms, with proactive planning for deterioration. Discussions on artificial feeding, considering the risks, benefits and prognosis, should be conducted. At the end of life, the focus of nutrition shifts from maintaining status to comfort and symptom relief, with feeding decisions tailored to individual preferences. Discontinuing feeds near the end of life can minimise burden without compromising care.	Patients who are likely to deteriorate in terms of ability to take adequate nutrition and who have a prognosis of ≥3 months, should be considered for a gastrostomy or long-term enteral feeding tube.
Jeannon et al, 201143UK	To analyse and present the outcome of patients in our institution who have not undergone any form of curative treatment.	Retrospective case review of 450 patients in a tertiary referral hospital in South East London. The mean patient age was 74 years (47-97). The male-to-female ratio was 3: 1.	Patients unsuitable for surgery, chemotherapy or radiotherapy were included. Data on TNM stage and co-morbidities were collected, and survival was measured from diagnosis to death. Univariate analysis was conducted using Cox proportional hazards and the log-rank test.	Gastrostomy tubes were inserted in 48% of patients, with 9% of patients remaining under the care of the acute head and neck team for tracheostomy or tube feeding management until discharge. Patients with a PEG lived for 0 to 30 weeks compared to 2 to 21 weeks in the non-PEG group.	Interventions such as gastrostomy tube insertion allow for the administration of feeding and analgesia. Feeding tubes may lead to issues with discharge to the community. Small study, retrospective case review.
Lovel, 2000 34 UK	To evaluate the current evidence on symptom control in advanced HNC.	Editorial/literature review	30 references obtained from Medline by asking for the keywords ‘cancer’, ‘head’, ‘neck’ and ‘palliation’	If dysphagia becomes a problem, an NGT is only a short-term solution. A PEG should be considered, as it relieves hunger, thirst, the fear of choking and the risk of aspiration pneumonia, improving QOL. A PEG is preferable to an NGT prognosis of more than a few days.	No new data were represented, relying on existing literature and expert opinion. Focuses on symptom control rather than holistic care. Better training for staff caring for this patient group is required.
McCammon, 2019 31 USA	To describe the symptoms of HNC and discuss palliative options in surgical decision-making for these patients.	Review and 3 case studies including 1 × 59-year-old female, 1 × 42-year-old male and 1 × 79-year-old male	Meta synthesis and retrospective case studies	Patients often value independence, enjoyment of food and time with loved ones. As health declines, repeated discussions about ETF and feeding at risk may be needed in the context of cancer cachexia. Fatigue and weight loss can be distressing, prompting patients to request tube placement. Some may use feeding tubes primarily for medications, though feed tolerance issues can arise.	Focuses on PC within surgical oncology and provides case studies that are not analysed. Early integrated PC supports patients and families in making treatment decisions aligned with their goals, preparing for disease progression and navigating the emotional complexities of managing advanced HNC.
Mroueh et al, 2019 78 Finland	To investigate the use of noncurative treatment modalities for OTSSC and patient survival.	Retrospective case review of 82 patients received at the Helsinki University Hospital, Finland, between January 2005 and December 2016. Mean age 66.1 years; range 28-94.4, with 49 females. Tobacco use was reported in 56% and heavy alcohol consumption in 35% at diagnosis.	Patients were identified using ICD-10 codes, and comprehensive data were collected from hospital records, including demographics, lifestyle factors, tumour characteristics, treatments received, use of tracheostomy or PEG, disease recurrence and end-of-life details such as noncurative treatment decisions and place of death.	PEG feeding was pursued in 65% of patients. Complications of PEG insertion including pain and PEG leakage, colonic perforation due to PEG malposition and peritonitis have been described. A high rate of unnecessary prophylactic PEG placement in patients with HNCs has also been reported.	No data were collected concerning comorbidities. Unable to evaluate treatment satisfaction and QOL of the patients and caregivers. Small sample size. We conclude that the survival time for OTSSC patients treated primarily with noncurative intent remains very short.
Ostwal et al, 202157India	To determine the correlation between symptom cluster and perceived distress in such patients.	This is a single-centre prospective observational study of 175 adults with advanced HNC referred to the palliative medicine outpatient clinic. Age range 25-70 years; 74.1% and 25.9% of patients were male and female, respectively.	Patients were assessed for their symptoms using ESAS-r and for distress using the NCCN DT at baseline and at days 7, 14 and 28 of starting PC intervention. The overall mean values of each ESAS-r item at day 0, day 7, day 14 and day 28 of the treatment course were calculated.	Loss of appetite was directly correlated with the overall distress score. Meeting the requirements of adequate nutrition with emphasis on homemade food forms an integral part of managing advanced cancer patients.	Small sample size and short follow-up period of 28 days. Selection bias. Once physical symptoms are controlled, psychosocial support and counselling are required. Individualised care plans prioritising these symptoms may reduce distress.
Rajkumar et al, 201750 UK	To discuss end-of-life care in HNC and the PC pathway.	Narrative review	Descriptive discussions of PC practices	Patients with HNC often have complex nutritional needs, requiring detailed assessment and possibly supplemental feeding. Feeding tubes can cause emotional distress for caregivers, with 20% of partners experiencing significant anxiety and disruption to daily life.	Selection bias. Individualised assessment is required. It is a process that requires all of the skills available from the multidisciplinary team.
Roland and Bradley, 201428UK	To summarise the current role and philosophy of surgical interventions in the palliation of HNC.	Narrative review	No methodology discussed	Pain, weight loss and feeding difficulties are common in advanced HNC. Surgical palliation may involve PEG, jejunostomy, gastrostomy or tumour debulking to aid in swallowing. However, there is no clear evidence on which feeding tube method is the most effective.	Lacks a defined methodology, with many statements supported by small studies. Early use of enteral feeding tubes may help preserve QOL, but further research is needed to identify the most effective feeding methods and timing.
Shedd et al, 1980 79 USA	To examine the specific problems of care for terminal HNC patients.	Retrospective case review of 60 patients from RPMI who died due to disease progression between 1974 and 1979. Gender: 68% were male and 32% were female. Ages range from 36 to 89 years. White males comprised almost 62% of the total sample studied.	This group is a random selection comprising 43% of all patients who died of progression of squamous cell HNC at RPMI. Various aspects of the terminal phase of the illness in these patients were reviewed.	During their final hospital admission, 10 patients received a tracheostomy or gastrostomy. Many appeared cachectic, with feeding problems and recurrent pneumonia being common end-of-life issues. Overall, 37 out of 60 patients experienced feeding difficulties, and body image concerns were also noted.	Retrospective; small sample size, older paper. Early nutritional assessment and support may prevent deterioration in some cases. Feeding issues contribute to depression, anxiety, social withdrawal and family distress.
Price et al, 2009 52 USA	To understand the cause and location of death and the symptoms experienced at the end of life.	Retrospective case review of 93 patients treated at the Mayo Clinic with terminal HNC between 1999 and 2001. For 89 patients (94.7%), at least 1 symptom was mentioned in the 6 months prior to death.	Using the electronic clinical database, we identified 93 patients. In order to ascertain end-of-life symptoms, clinical notes during the 6 months prior to death were reviewed, and the symptoms experienced by the patients were recorded.	Among patients with advanced HNC, 5% died from dehydration, 45% experienced dysphagia, and 43% had anorexia or weight loss.	Small audit. The frequency of hospitalisations and multiple symptoms at the end of life reflects the complex needs of HNC patients, often requiring hospital or hospice care for symptom management and nursing support.
Mayland et al, 2021 37 UK	To identify and map out the PC needs and experiences for people with advanced HNC.	Scoping review of 46 studies included in the review, which were categorised into 6 themes	The Joanna Briggs Institute Scoping Review framework was used to guide the conduct of the review. An electronic search of the literature was undertaken in Medline (Ovid), EMBASE and CINAHL between January 1996 and January 2019. Data were extracted using a specially designed proforma by 1 member of the research team.	Advanced HNC patients commonly experience fatigue (77-81%), weight loss, dysphagia (45%) and anorexia (43%). Other symptoms include difficulty eating, dry mouth and appetite changes. Inability to eat is distressing for families, and swallowing difficulties are often linked to hospital admissions.	Some data sources may have been overlooked. Frequent hospital-based care in the final weeks of life may be linked to complications from feeding tubes. Improving community healthcare professionals’ training on feeding tube management could help reduce hospital admissions.
Scholes et al, 199741UK	To discuss the management of advanced HNC.	Review	Expert review and clinical experience.	Food modification helps manage xerostomia from palliative radiotherapy. One-third of patients experience eating difficulties, and while exercises may help, artificial feeding should be considered if swallowing deteriorates. PEG feeding may support home-based care, though patients often struggle with the visibility of feeding aids and concern over others’ reactions.	Lacks a clearly defined methodology and relies on the clinical experiences of the author. Ethical dilemmas are acknowledged but not explored. Future increases in PC services and expertise, combined with more QOL data, should continue to enhance care for this group of patients.
Sciubba, 2016 47 USA	To highlight the complexities, challenges and considerations in providing end-of-life care for patients with HNC, particularly when active curative treatment is no longer feasible or has been intentionally discontinued.	Concise review	Expert opinion and clinical experience.	Nutrition and hydration should be personalised based on patients' ability to eat and their life expectancy. In the final stages of life, aggressive interventions may cause more harm than benefit. Parenteral hydration does not improve symptoms or outcomes, and standard signs of dehydration may not reflect patient experience.	Lacks a clearly defined methodology and relies on the clinical experiences of the author. Enteral feeding decisions should involve shared decision-making and reflect the patient's and family's values, beliefs and cultural or ethical concerns. In cancer-related cachexia, nutritional interventions may be limited in effectiveness due to underlying metabolic changes and muscle wasting.
Sesterhenn et al, 2008 35 Germany	To describe the circumstances under which patients with terminal HNC spend their final period of life and to describe this period in a hospice setting	Retrospective cohort study of 16 patients with end-stage HNC from April 1998 to August 2006, in the Department of Otolaryngology, Head and Neck Surgery, Phillips University of Marburg, Germany. The median age was 55.5 years. Most patients were male (14/16).	From April 1998 until August 2006, more than 1400 patients with cancer of the head and neck were treated. Sixteen patients with end-stage HNC were transferred to the local hospice because of end-stage disease. The charts of the patients were evaluated. The hospice nursing staff were interviewed with a standardised protocol.	Thirteen patients received feeding tubes for dysphagia and aspiration before hospice referral. Some used their PEG tubes to consume alcohol, which they considered essential for maintaining their QOL.	Artificial body orifices, like a PEG for alleviation of hunger, ease of hydration and medications, are often indispensable. Small sample size.
Shinozaki et al, 2017 42 Japan	To investigate the relationship between QOL and functional status in terminally ill HNC patients using both patient-reported outcomes and clinician-reported outcomes	A multicentre prospective study enrolled 100 HNC patients (median age 69, 79% male, 29 females), with around half having poor performance status.	Patients with baseline cognitive impairment were excluded. The primary outcome was the change in global QOL from baseline to week 3. Secondary measures included tumour and respiratory characteristics, nutritional route, speech ability, facial swelling, secretion noise, survival, hospital stay length and attrition rate.	Most patients (73.6%) required enteral feeding at baseline, decreasing slightly to 59.7% before death. Oral feeding declined from 30.6% to 23.6%. PEG-fed patients had shorter survival and hospital stays (21 days) compared to those with NGTs (64 days). Appetite loss was common.	Patients without a PEG tube may have been hospitalised earlier due to malnutrition than patients with an NGT tube. The small sample size made it difficult to detect small differences in QOL in a frail population. Limited to inpatients.
Sironi et al, 2010 36 Italy	To evaluate the impact of home enteral nutrition on nutritional status and to review the indication for PFG.	A prospective study in Milan included 50 patients (mean age 63, 62% male) who received PFG tube placement; the average BMI was 19.5 kg/m2, and the mean weight was 54 kg.	KPS, along with nutritional and biochemical indicators, was assessed at admission and after 3 months. Patients were grouped by baseline KPS into 3 categories (A: 80-90, B: 60-70, C: <60), and survival times for each group were analysed using Kaplan-Meier plots.	Enteral feeding was required in most patients, though its use declined before death. PEG-fed patients had shorter survival and hospital stays than those with NGTs. Severe weight loss was common, but after 3 months of home HEN, improvements in nutritional markers and weight were observed, indicating its effectiveness. No major complications were reported with PFG, which is quick to place and avoids tumour seeding.	Small sample size. To decide on the best enteral feeding tube access, the physician should take into account the patient's diagnosis and prognosis, as well as ethical issues and the expected effect on the patient's own wishes. A PFG should be considered in this group.
Swora et al, 2009 54 Poland	To discuss the issues linked to the pathophysiology of malnutrition in patients with tumours of H + N.	Narrative review.	Expert opinion.	Patients should eat small, frequent meals with high energy density (2 kcal/ml), focusing on satisfaction rather than standard healthy eating. High-energy, high-protein supplements are available on prescription, and medications may be used to stimulate appetite and support anabolic processes.	Based on clinicians’ expert opinion. The potential for nutritional therapy and artificial nutrition should be considered in every patient, so they can take optimum advantage of the anti-cancer treatment.
Taylor et al, 202239UK	To present a case demonstrating how continuity and person-centred care for complex HNC patients is achieved by a fully integrated specialist PC service.	Case review of a 57-year-old female receiving palliative chemotherapy for recurrence of right maxillary osteosarcoma, who presented to the hospital with falls and vomiting and was unknown to the specialist PC team.	A case demonstrating how continuity and person-centred care for complex HNC patients is achieved by a fully integrated specialist PC service	A patient with limited jaw movement from a large facial tumour had impaired oral intake. A RIG-J tube caused severe skin damage due to leakage and was removed during hospitalisation due to complications. The patient was too frail for replacement. After discharge, ongoing gastric leakage was managed with a stoma bag to protect the skin.	Single case study. A well-integrated single-site SPC team with flexibility to provide continuity of care across hospital and community settings provided this patient, having highly complex needs, with patient-centred care.
Thompson and Krouse, 2004 32 USA	To develop a structured approach for clinical decision-making in terminal HNC care, emphasising dignity, symptom management and relief of suffering.	Case review of a 79-year-old male who presented with a large squamous cell carcinoma of the base of his tongue with palpable bilateral cervical lymph nodes.	This paper is a conceptual framework and clinical commentary, based on expert opinion and clinical experience.	Severe dysphagia and painful swallowing led to poor oral intake and progressive weight loss. Megestrol and oral lidocaine were tried to improve appetite and comfort but were ineffective. The family was uncertain about initiating tube feeding to support the patient's declining nutrition.	The case demonstrates how a decision-making framework centred on patient preferences was used to manage suffering during the terminal stage of HNC. Single case study.
Veluthattil et al, 2019 27 India	To evaluate changes in QOL, specifically pain and mouth opening, before and after radiotherapy using standardised questionnaires and assess overall QOL and both early and late toxicities.	This was a single-arm, prospective trial that included 48 patients with incurable oral cavity cancer; 25 patients given conformal radiotherapy at the Department of Radiotherapy, RCC, JIPMER were recruited into the study.	Conformal radiotherapy (52.5 Gy in 15 fractions) was administered, with QOL assessed using EORTC questionnaires before and 2 months after treatment. Treatment response was evaluated using RECIST criteria, and toxicities were measured at 2 and 6 months post-radiotherapy. The primary endpoint was trismus.	Following radiotherapy, 60% of patients experienced grade 3 trismus, though both pain and mouth opening improved. QOL scores related to dry mouth, nutritional supplements and feeding tubes worsened, consistent with known post-radiotherapy xerostomia. No patients gained weight, and 13 out of 20 required a Ryle's tube for feeding.	Small sample size; patients lost to follow-up, short survival period of 5.1 months; only 5 patients completed 6-month follow up, providing insufficient data on late toxicity. Hypofractionated palliative radiotherapy can improve QOL in incurable oral cavity cancer, and patients may benefit from early feeding tube placement.
Yokota et al, 2022 45 Japan	To assess the impact of ETF and PNH on survival in HNC or oesophageal cancer patients unable to meet calorie needs through oral intake, using secondary analysis of a previous cohort study.	In this prospective cohort study, 102 out of 1453 patients had HNC or oesophageal cancer. The mean age was 71.5 years, with 47.1% of HNC patients being male. The average BMI was 18.2 kg/m2, and the group experienced a significant average weight loss of 82.4% over 1 month.	This secondary analysis of a large multicentre cohort study across 23 PC units in Japan (2017-2018) examined the effects of ANH on survival in advanced cancer patients. Participants were categorised into 3 groups based on nutritional intake: oral intake (n = 33), ETF (n = 25) and PNH (n = 44)	Survival differed significantly between groups: oral intake (54 days), ETF (26 days) and PNH (18 days). Multivariate analysis showed a significantly lower mortality risk for the oral intake group [HR 0.46, P = 0.002] compared to PNH, and a trend towards lower mortality in the ETF group [HR 0.60, P = 0.077].	Small sample size resulting in a lack of power. Tumour heterogeneity was neglected. ETF may improve survival in specific cancer patients with dysphagia in PC, but more robust evidence is needed.
Alt- Epping et al, 201651 Germany	To evaluate the prevalence of symptoms and psychosocial needs at patients’ first visit and assess the feasibility of using a comprehensive assessment process in a highly vulnerable patient group.	Prospective longitudinal multicentre cohort study of 22 patients (16 were male and 6 were female; mean age 60.6 years, range 29-82 years) with incurable HNC from across Germany.	A comprehensive set of validated assessment tools was used to evaluate QOL and patient needs, ensuring both broad coverage and patient acceptability. Tools included ECOG Performance Score, NCCN DT, FACIT, SEIQoL, PHQ and the Supportive Care Needs Survey.	Symptoms like being unable to eat the favoured foods, being unable to eat solid foods or suffering from a dry mouth were almost uniformly present even at the first visit.	Small study, lack of women. Bias due to face-to-face questioning. An individualised, early, comprehensive, pro-active, symptom-guided and needs-oriented therapeutic approach, including multiprofessional PC services, is required for these patients.

Abbreviations: ANH, artificial nutrition and hydration; BMI, body mass index; BOR, best overall response; DCR, disease control rate; DT, distress thermometer; ECOG, Eastern Cooperative Oncology Group; EORTC, European Organisation for Research and Treatment of Cancer; ESAS-r, revised Edmonton Symptom Assessment System; ETF, enteral tube feeding; FACIT, Functional Assessment of Chronic Illness Therapy; GNRI, Geriatric Nutritional Risk Index; HEN, home enteral feeding; HNC, head and neck cancer; HNSCC, head and neck squamous cell carcinoma; HR, hazard ratio; ICD-10, International Classification of Diseases, 10th revision; ICI, immune checkpoint inhibitor; JIPMER, Jawaharlal Institute of Postgraduate Medical Education and Research; KPS, Karnofsky Performance Status; NCCN, National Comprehensive Cancer Network; NGT, nasogastric tube; OTSSC, oropharyngeal tonsillar squamous cell carcinoma; PC, palliative care; PEG, percutaneous endoscopic gastrostomy; PFG, percutaneous fluoroscopic gastrostomy; PHQ, Patient Health Questionnaire; PNH, parenteral nutrition at home; QOL, quality of life; RCC, Regional Cancer Center; RECIST, Response Evaluation Criteria in Solid Tumors; RIG, radiological inserted gastrostomy; RPMI, Roswell Park Memorial Institute; SEIQoL, Schedule for the Evaluation of Individual Quality of Life; SPC, specialised palliative care; TNM, tumour, node, metastasis.

The Patterns, Advances, Gaps, Evidence for practice and Research Recommendations (PAGER) framework ²⁵ was used to analyse the data. The PAGER framework focuses on the identification of patterns and advances in current literature, helping to map and describe the literature, while highlighting areas for future research. A pattern chart was developed in line with the PAGER framework using the descriptors ‘Patterns’, ‘Advances’, ‘Gaps’, ‘Evidence for practice’ and ‘Research recommendations’. From this chart, themes were developed, extracted and analysed (Table 3).

Table 3.

Themes Developed from the Pattern Chart Using PAGER Framework.

Pattern	Advances	Gaps	Evidence for practice	Research recommendations
The use of enteral tube feeding	Enteral feeding tubes, including gastrostomy and nasogastric tubes, are frequently used to maintain nutrition and hydration and to administer medications.	Enteral feeding tubes are frequently used in clinical practice to support patients at the end of life. The optimum timing for tube placement should be explored.	Enteral feeding tubes are a safe and feasible method to deliver nutrition to this patient group, allowing patients to be discharged from hospitals.	Qualitative and quantitative research into the benefits, burdens and experiences of enteral feeding should be explored. To carry out qualitative research into the decision-making process around enteral feeding tube placement.
Identification and treatment of malnutrition	Early screening for malnutrition is recommended. Interventions such as nutritional counselling, oral nutritional supplements, dietary modifications, feeding at risk, parenteral nutrition, thickener and swallowing strategies were identified as improving nutritional intake and preventing malnutrition.	There is a paucity of research investigating nutritional interventions other than enteral feeding and limited data on the prevalence of malnutrition.	There are several nutritional interventions available to support patients with AHNC, allowing an alternative to enteral feeding; however, there is little evidence or research into these interventions.	Further quantitative and qualitative research into the possible benefits of other nutritional interventions, which may improve nutrition and their impact on outcomes. Research into the prevalence and effects of malnutrition is required.
The effects of palliative treatment on nutrition	There is limited and conflicting evidence if advanced cancer treatments improve or negatively impact nutrition.	It is important for healthcare professionals to understand the impact of palliative treatment on nutrition, enabling the adjustment of nutritional interventions and goals.	Evidence to emerge from future research.	Further research on how the side effects of advanced chemotherapy, radiotherapy and immunotherapy impact nutrition and oral intake.
The experiences of patients and carers	There is evidence that patients and carers find weight loss and the deterioration of eating and drinking distressing.	There is a paucity of evidence exploring patients’ and carers’ experiences and views of nutrition in AHNC. No articles discussed the experiences of healthcare professionals.	Evidence to emerge from future research.	Qualitative research exploring patients’ and carers’ experiences of all aspects of nutrition should be commenced. Qualitative research exploring healthcare professionals’ experiences of nutrition in AHNC patients is required.

Results

Of 1703 articles identified, 32 met the eligibility criteria and were selected for the scoping review (Figure 1). The studies had varying methodologies, including 13 retrospective studies, 9 prospective studies, 7 reviews and 3 guidelines. All the articles discussed nutritional interventions for patients with AHNC. The review articles were narrative or based on expert opinion. The prospective and retrospective studies took place in acute hospitals, hospices and the community. These 32 articles came from across the globe, including some countries in Europe (eg, Netherlands, UK, Italy, Germany), India, Philippines and the United States. The articles were published between 1980 and 2024, and the sample size of the prospective and retrospective studies ranged from 3 to 175 patients (Table 2).

Figure 1.

PRISMA Flow Diagram Identifying Studies Used in the Scoping Review.

Four themes were identified: (1) the use of enteral tube feeding, (2) identification and treatment of malnutrition, (3) the effects of palliative treatment on nutrition, (4) the experiences of patients and carers (Table 3).

Theme 1. The Use of Enteral Feeding

Enteral feeding was the most common nutritional intervention implemented for patients with AHNC (n = 26). Various feeding tubes were used, including gastrostomy, jejunostomy and nasogastric tubes (NGTs) ²⁶ or Ryle’s tubes.^26,27 The early insertion of enteral feeding tubes (EFTs) was recommended^28,29 alongside discussions with patients on the benefits and potential risks of EFT insertion.^30–32 Following these discussions, patients could decline EFT insertion, choosing to eat and drink orally as able.^27,33 Reasons for EFT insertion included dysphagia, aspiration and impaired oral intake for longer than 30 days. ^{28 34–36}

EFT selection also depended on patients’ prognosis, with gastrostomy tubes preferred for longer-term feeding compared to NGTs.^28,36 NGTs were perceived as a safety risk in the community and were identified as being difficult to insert past the tumour, requiring multiple replacements, being prone to blocking and requiring additional ‘out of hours’ care.^30,3336–38 There were also issues with gastrostomy tubes. One case study highlighted issues with a leaking gastrostomy, causing excoriation to the abdominal skin and becoming blocked, causing discomfort and distress to the patient. The gastrostomy was removed as a result. ³⁹

Perceived benefits of enteral feeding were identified, including providing a route for nutrition, hydration and medications when patients were unable to swallow, reducing the risk of aspiration, improving QOL and length of life and improving biochemistry and weight.^{29,33,35,36,40} Sironi et al showed a statistical improvement in biochemistry and an increase in body weight (P = 0.03) following 3 months of home enteral feeding. Three studies reported that EFT enabled patients to be discharged home or to a hospice from the hospital, allowing patients to be better supported in the community.^41–43

Five articles discussed ethical dilemmas surrounding enteral feeding, regarding prognosis and appropriateness of EFT insertion and withdrawal of EFT.^{31,33,42,44,45} Seven studies concluded that enteral feeding should be tapered or not used in the last weeks of life, with EFT not advocated in the final days of life.^{30,31,33,41,44,46,47}

Theme 2. The Effects of Advanced Cancer Treatment on Nutrition

Three articles reported on nutritional interventions employed during advanced cancer treatment, with 2 studies focusing on the effects of different hypofractionated radiotherapy regimes^27,48 and 1 on immunotherapy. ⁴⁹ All 3 articles identified weight loss and impaired oral intake before treatment started, with patients requiring ONS and EFT to maintain nutrition throughout treatment. Al-Magami et al reported that patients experienced acute toxicity during radiotherapy, including grade 3 mucositis, impacting nutrition, with some patients requiring EFT throughout treatment. Long term, this radiotherapy regimen led to a reduction in pain and an improvement in trismus, leading to weight gain and a reduced dependency on EFT. However, this radiotherapy regimen is not commonly used for patients with AHNC. Al-Magami et al's results were contradicted by Veluthattil et al's study, which reported impaired oral intake due to radiotherapy side effects, with patients requiring EFT and ONS post radiotherapy, with xerostomia impairing oral intake. This may be due to varying endpoints for follow-up post radiotherapy. Scholes and Mayer also noted weight loss during radiotherapy caused by anorexia. Some studies observed that despite aggressive nutritional support, including enteral feeding, no weight gain was observed following treatment. ⁴¹

Malnourished patients treated with immunotherapy reportedly had a worse progression-free survival (PFS) and worse overall survival (OS) compared to patients without malnutrition. Enteral nutrition and parenteral nutrition (PN) were also linked to reduced PFS and OS but were not statistically significant in multivariable analysis. ⁴⁹

Theme 3. Identification and Treatment of Malnutrition

Early screening for malnutrition was highlighted as a critical component of care.^30,45,50,51 Haas et al recommended the Geriatric Nutrition Risk Index (GNRI) to screen patients treated with immunotherapy. ⁴⁹ This tool focuses on ideal weight and albumin as opposed to BMI, and predicted survival and immunotherapy response in patients. Just over a quarter of the included articles in this review discussed weight loss as a symptom of AHNC.^{28,29,31,3335–37}41,50,52–54 Del Rosario-Ocampo identified weight loss as the third most common symptom in hospice admissions, and Sesterhenn et al observed severe weight loss (16.2% + 10.9% body weight) in the last 6 months of life.^29,35 Malnutrition was the cause of death for 6% (n = 6) of patients in 1 study, ²⁶ and another reported dehydration as the cause of death for 2 patients. ⁵²

Nine interventions, other than EFT, were used to prevent malnutrition. This included PN,^45,49 ONS,^{27,33,45,50,53,54} dietary modifications,^33,41,46 nutritional counselling, ⁵⁵ a high-energy diet, ⁵⁴ swallowing strategies,^26,41 thickener ⁵⁰ and medications such as dexamethasone or megestrol acetate, used to improve patients’ appetite.^26,32,40,54 Feeding at risk was used in patients to improve QOL.^33,40 While these interventions are described, the timing of these interventions was ambiguous, and the articles did not state whether a combination of the interventions was used. Some articles named the nutritional intervention as an outcome, for example, ⁴² patients using an EFT. ⁴⁴ Other articles linked nutritional interventions to more specific outcomes such as weight changes (n = 13 studies), QOL (n = 4), distress (n = 7), survival (n = 5), BMI (n = 3), hospital admissions (n = 3) and biochemistry (n = 2).

Five studies identified that PN was used to prevent malnutrition and dehydration^{30,41,45,46,49,56} caused by dysphagia and tumour obstruction. Yokota et al reported no advantage in using PN over ONS or EFT, ⁴⁵ with Hass et al reporting that PN reduced PFS when using the GNRI (P = 0.015; P = 0.023).⁴⁹ Three articles discussed using parenteral fluids for hydration; however, they concluded that it has little effect and should be used if necessary.^41,46,56

Theme 4. The Experiences of Patients and Family Carers

Frustration and distress caused by impaired eating and drinking, loss of appetite and weight loss were reported by patients. ³¹ A prospective study by Ostwal et al highlighted that loss of appetite was a recurring source of distress for patients across 4 different time points during advanced cancer care follow-up. ⁵⁷ Carers described feeling helpless and distressed when witnessing patients struggling with oral intake and weight loss.^29,37 EFT placement resulted in psychological distress for both patients and carers, with EFT impacting QOL.^44,58 The emotional, cultural and symbolic significance of food was highlighted by 3 studies,^30,44,56 underscoring the need for psychosocial support alongside nutritional interventions. The majority of studies discussed the experiences of patients and carers; however, the experiences of healthcare professionals in relation to nutrition were not discussed in any depth, highlighting a gap in the literature. Exploring the experiences of healthcare professionals would provide valuable insights into the emotional and ethical dimensions of clinical practice. These perspectives would provide a more holistic understanding of managing nutrition and the nuances of ethical dilemmas and implementing nutrition interventions in this patient group.

Discussion

Four main themes were identified in this scoping review. Enteral feeding was frequently used to address malnutrition, providing a route for nutrition and medications. Some studies report associations with survival or QOL, although evidence is largely retrospective. However, other nutritional interventions such as ONS, nutritional counselling, altered textured diet, and feeding at risk are discussed but not explored in detail. Patients are selected on an individual basis for feeding tube insertion, with some patients declining EFT placement. Patients should be involved in the decision-making process regarding EFT placement and the ethical considerations regarding feeding at the end of life. Evidence on patients’ and carers’ experiences of nutrition and its impact on QOL is limited. The scoping review identified that the side effects of AHNC treatments affect oral intake; however, regimens and treatments vary, altering the severity of the symptoms.

Several different hypofractionated radiotherapy regimens have been studied ⁵⁹ with symptom relief related to pain, dysphagia, trismus and hoarseness,^60,61 with some studies observing longer PFS and OS, ⁶¹ warranting cautious interpretation. Alleviation of pain and dysphagia will improve nutritional intake for some patients; however, for others, the benefits may be minimal. Treatment-related toxicities, including mucositis, xerostomia, and pain, can impair further oral intake. These patients may require enteral feeding and/or ONS to support them while on treatment. In a review of published regimens, Finnegan et al noted late effects of hypofractionated radiotherapy such as mucositis and xerostomia, which can compromise nutritional intake longer term, contributing to weight loss, compounded by tumour progression.

The nutritional needs of patients with HNC are complex and pose significant challenges for healthcare professionals and carers. Patients experience several physical symptoms, including dysphagia, anorexia, pain, trismus and tumour obstruction, exacerbating the risk of malnutrition, impacting patients’ overall treatment and QOL.^62,63 Malnutrition in this patient population is multifactorial, driven by the effects of the tumour on oral and pharyngeal structures, as well as the side effects of prior cancer treatments such as surgery or chemoradiotherapy.^11,64 The impact of malnutrition can lead to increased complications, hospital readmissions and a decline in QOL.^16,65 To mitigate these risks and help maintain QOL, patients diagnosed with AHNC should be screened regularly throughout advanced cancer treatment. ⁶³

Despite initiating nutritional interventions, including enteral feeding, weight loss often persists in this population; however, this does not mean it should be overlooked. Food holds a psychosocial significance for patients, beyond sustenance, holding cultural, emotional and symbolic importance, and the loss of this can be distressing. ⁶⁶ For carers, watching loved ones waste away or relying on EFT can cause distress, leading to feelings of helplessness. ⁶⁷ Malnutrition is linked to distress, anxiety and depression and contributes to distress independently of other psychosocial outcomes. ⁶⁸ For example, some patients withdraw from social situations due to difficulty swallowing or eating in front of family. This underscores the implications of malnutrition on emotional well-being and highlights the need for psychosocial support in the form of nutritional counselling from healthcare professionals to support both patients and carers.

Enteral feeding was commonly used to prevent malnutrition, particularly through gastrostomy and NGTs. These tubes provide an alternative route for administering nutrition, hydration and medications when oral intake is not possible. ⁶⁹ Current literature suggests that early placement of EFT is used with the intention of preventing malnutrition and may support treatment outcomes, particularly in patients with AHNC ¹¹ ; most evidence, however, is descriptive. EFT may not always align with patients’ wishes at the end of life, with some patients prioritising QOL and comfort over EFT insertion. ⁷⁰ There can be challenges with enteral feeding, with some studies reporting patients decline EFT due to the psychological burden and discomfort associated with tube placement, highlighting the need for patient-centred care and shared decison making when deciding on EFT placement. ⁶²

In patients undergoing curative treatment, some studies have documented the didactic nature of having an EFT, with patients describing positive and negative feelings. While the EFT provided easy access to nutrition, fluids and medications, and helped maintain weight, they also recognised the psychological benefits the EFT provided, feeling relieved from the burden and pain of eating and the reassurance that they were being nourished. ⁷¹ Patients also described the feeding regimens as being time-consuming, disturbing them when they slept and restricting hobbies and physical activity. ⁷² Socially, gastrostomy tubes were perceived to be more acceptable than NGTs, with patients reporting being stared at in public, leading to patients opting to stay at home and withdrawing from social situations. ⁷¹

Investigating alternative nutritional interventions, including ONS, dietary counselling, modified texture diets and various feeding strategies, is crucial. While these options are highlighted as nutritional interventions to prevent malnutrition in AHNC, they remain under-researched, and their potential to enhance QOL remains unknown. ⁶⁴ While enteral feeding is regularly used, there are few studies investigating patients who decline or are not offered feeding tubes. The current lack of rigorous studies evaluating alternative nutritional interventions prevents healthcare professionals from making evidence-based recommendations, which could provide more tailored advice for individual patient preferences, reducing reliance on EFT.

The ethics of tube feeding at the end of life adds another layer of complexity to nutritional support in AHNC care. In this context, the dilemma is whether to address malnutrition as a treatable condition or accept it as a consequence of disease progression. ⁷³ The principles of autonomy, beneficence, nonmaleficence and justice must be balanced when making decisions regarding nutritional interventions at the end of life. Nutritional intake in this patient group is often restricted for anatomical reasons, leaving patients with the potential risk of death from malnutrition or dehydration. Enteral feeding is described as having the potential to support treatment tolerance, maintain nutrition and extend life, ⁷⁰ but further evidence in this area is warranted. However, enteral feeding can be perceived as prolonging suffering in a group with an already diminished QOL and distressing symptoms.^70,73 Cultural and religious concerns need to be addressed when initiating tube feeding, with values shaping patients’ and families’ perspectives on end-of-life care. ⁷⁴ Muslims often believe that patient autonomy is secondary to the physician's authority over what benefits the patient, while the Taiwanese culture believes that an individual's soul will be restless if they die hungry. In Western culture, poor nutrition is associated with illness and death. ⁷⁵ Ignoring these values can lead to reduced adherence, emotional distress and a poor death. Therefore, diverse dietary customs, beliefs and the wishes of the patient and carers are essential for making informed decisions regarding the placement of EFT.

The findings of this review recommend that effective communication is essential to ensure that patient goals and preferences are explored ⁷³ and that enteral feeding in this patient group should be individualised, prioritising a patient-centred approach. ⁷⁶ Shared decision-making facilitates a collaborative approach, allowing healthcare professionals to tailor decisions regarding the need for EFT, not only to patients’ clinical needs but also taking into account patient preferences and wishes, and how an EFT may impact their QOL. This shared decision-making is important in the final days or weeks of life when nutritional goals change from maintaining nutritional intake to comfort and dignity. The review also recommends that EFT should not be placed in the last weeks of life. If enteral feeding has already been commenced, consideration should be given to reducing or stopping the feed altogether if appropriate, providing an individualised approach.

Future research should focus on patient-centred approaches that consider both the physical and psychosocial impacts of nutritional interventions. Additionally, qualitative research exploring the experiences of patients and carers treated with various nutritional interventions could offer valuable insights into how these approaches align with patients’ holistic needs and contribute to QOL. These findings could aid the development of ethical guidelines and clinical recommendations that balance treatment efficacy with spiritual, physical, emotional and cultural dimensions of AHNC. ⁷⁷

The studies analysed were not evaluated for the quality of their evidence nor critically appraised; therefore, the results are a summary of the current practice of nutritional interventions. To encapsulate as much evidence as possible, broad search terms were used. Many studies included in this review had small sample sizes and where retrospective in nature; therefore, caution is required when interpreting the results. The absence of clearly defined outcomes when employing nutritional interventions limits the interpretability and comparability of findings and therefore hinders the development of evidence-based guidelines. However, it may be difficult to interpret any benefits of nutritional interventions due to the heterogeneity of nutritional interventions, timings, individual patient needs and deterioration. The majority of the studies were European (n = 11), limiting the generalisability of findings across the world and between healthcare systems. Despite the inclusion of a wide range of articles, the experiences of healthcare professionals caring for these patients with complex needs and symptoms were overlooked. The absence of healthcare professionals’ perspectives within the existing literature restricts the understanding of how nutrition is managed in this patient group in practice and highlights opportunities for improving training to deliver patient-centred care. Exploring healthcare professionals’ experiences of nutritionally managing these patients may lead to improved patient care and provide better insights on how to support patients and their families.

Conclusions

The review highlights the complexity of nutrition in AHNC and the importance of developing a patient-centred approach to nutritional management. While enteral feeding is frequently used and reported, further studies evaluating the effectiveness of alternative nutritional strategies and interventions are required. All nutritional interventions should be tailored to individual needs and enable them to achieve their goals. Healthcare professionals often navigate uncertainty while trying to balance patient preferences and QOL with clinical indications for nutritional interventions, especially regarding EFT. The development of more structured guidance or tools to aid clinical decision-making would standardise pathways and support more equitable and patient-centred care while improving confidence among healthcare professionals. Further qualitative research is needed to explore the experiences of patients, carers and healthcare professionals regarding nutrition at the end of life, including patients who decline nutritional interventions.