Malnutrition in Serious Illness: How to Support Patients Through Their Changing Nutrition Needs

Jay is a 63-year-old construction site manager and veteran who's always been physically active. Now in the middle of treatment for stage 3 non-small cell lung cancer, he's found that fatigue has been creeping in more often, and his appetite isn't what it used to be. He has lost weight and doesn't feel like his usual self, which is deeply frustrating to both him and his family. Jay is one of many thousands of people who develop malnutrition during their serious illness trajectory.

Simply put, malnutrition is a state of energy, protein, or other nutrient imbalance in one’s body. While nutrient deficiency or excess can cause impairment, in this blog, we will focus on under-nutrition or malnutrition, a state in which nutrient needs are not being met.

In serious illness, malnutrition impacts clinical outcomes. It develops quickly and can lead to worsening decline in nutritional status—a vicious cycle that is common in people with serious illness.

Malnutrition can also be notoriously difficult to diagnose. In 2012 and 2015, a consensus statement was published by the American Academy of Nutrition and Dietetics (AND) and the American Society for Enteral and Parenteral Nutrition (ASPEN) for adult and pediatric patients. The statement outlined steps for malnutrition diagnosis, focusing on objective parameters such as nutrient intake, weight loss, fat and muscle tissue loss, fluid overload, and disruption of growth and functional status. Despite these standardized criteria, malnutrition remains underdiagnosed in the clinical setting.

Malnutrition is very common in people living with serious illness.

It is present in about one-third of patients who present to the hospital, and up to 50 percent of people living with organ failure (e.g., liver, heart, lung, or kidney) have it. Malnutrition affects half of people living with cancer at some point during the disease trajectory. The majority of people in the intensive care unit meet the diagnostic criteria.

Among older adults, one in four people over the age of 65 either has malnutrition or is at risk of developing it. And 35 to 50 percent of older adults in long-term care facilities are affected or are at risk, with those in larger facilities (greater than 50 beds) especially at risk.

It is important to note that malnutrition can occur in all people living with serious illness—despite a person’s age, gender, body size, and/or physical appearance. Even though up to 50 percent of all hospitalized people have malnutrition, only about 8 percent receive a diagnosis in their medical record; due in part to its complex nature and the fact that it may be missed without adequate screening procedures and clinician training.

Clinicians should aim to accurately identify malnutrition early on, because malnutrition increases the risk of infection and surgical "never-events" (defined as inexcusable surgical outcomes), and worsens post-surgical recovery and wound healing. Muscle loss associated with malnutrition decreases function and worsens quality of life, leading to a reduction in independence and an increase in symptoms such as fatigue, depression, and anxiety. Malnutrition is intricately linked with increased hospitalization, length of stay, and 30-day readmission rates—all issues at the heart of palliative care that can impact our patients and their families.

An interprofessional approach may help clinicians evaluate and manage the physical, cultural, and psychosocial contributors for each individual person under their care. Management of malnutrition should be tailored to the patient’s illness trajectory, and nutrition interventions, like all other treatments, should be aligned with the goals of the patient and family.

Since food often carries meaning beyond sustenance, discussions on food and nutrition can be emotionally charged. For many families, offering food signifies connection, love and hope, including the hope of gaining strength for further treatment.

As palliative care clinicians, our core clinical responsibility is to reduce suffering and align nutrition-related decisions with patient goals. This requires understanding the individual’s current intake, preferences, and barriers—whether physical, cultural, psychosocial, or otherwise—rather than using a one-size-fits-all approach.

Malnutrition in serious illness is often driven by multiple factors, including symptoms that limit intake (e.g., dyspnea, abdominal pain, nausea, vomiting) and neuropsychiatric distress (e.g., depression, demoralization, fatigue). Additionally, treatment-related effects such as mucositis, dry mouth, and taste changes can further reduce appetite and enjoyment of food. And often, metabolic rate increases in people with serious illness; this increase in demand further contributes to worsening nutritional status.

A comprehensive nutrition plan involves an interprofessional team approach (partnering with a registered dietitian [RD/RDN], which we will refer to as RD), and includes screening and re-screening at all stages of illness, systematic symptom assessment, and management to support oral intake and optimize nutritional status. (Note: You likely have access to an RD if you work for a health system or a large community-based organization. If your organization does not have RDs on staff, search for one in your area.)

Food is closely linked with belonging, love, and caregiving, making reduced intake distressing for many families. Food is often a social and cultural vehicle, bringing people together. Often, people with serious illness and their families view food as an aspect of their lives that they can impact, at a time when so much else feels outside of their direct control.

Clinicians should explore what food and nutrition represent for the patient and family, and then offer goal-concordant options (e.g., appropriate and desirable nutritional supplements, favorite foods and recipes, comfort feeding, or permission to stop eating when intake is no longer tolerable, particularly near the end of life). Clear education about the expected benefits and burdens of nutrition interventions can support shared decision-making.

Many online sources and well-intentioned family members and friends may promote restrictive “rules” (e.g., eliminating specific foods such as fruits, sugar, and pasta), or push for adding certain foods and ingredients (e.g., adding turmeric due to anti-inflammatory properties, even if the person does not enjoy it), based on fears that certain foods worsen disease or that others can “fight” it. Social media messages about wellness may be persuasive to families, but their guidance is not specific to your patient, their medical condition, or their goals. For patients already at risk of malnutrition, food restrictions can be burdensome and may contribute to guilt or self-blame.

Emphasize flexibility and support patients in choosing foods, focusing on favorite recipes, and picking nutritional supplements that are appealing and tolerable in the moment.

For people living with serious illness, individualized medical nutrition therapy (MNT) that is planned and implemented by an RD can decrease symptom burden.

RDs can help in many ways, including optimizing energy and protein intake via specifically planned recipes or with nutrient supplementation to help reduce fatigue and modulate muscle mass at certain stages of illness.

They may restructure eating into smaller meals and snacks and advise ways to decrease symptoms such as nausea and vomiting or taste changes by changing flavor profiles or food temperatures (e.g., savory over sweet, cold foods over hot), or by planning fluid intake separately from solids. Oral mucositis and pain may improve by eating food at room temperature and avoiding overly acidic or spicy foods.

The addition of certain flavors, spices, and herbs can aid people who are suffering from illness (or treatment)-induced taste and smell changes. Increasing soluble and insoluble fiber and planning fluid intake can help address constipation. Meal and recipe planning for those on dialysis can normalize fluid and electrolyte balance, meet protein needs, and reduce morbidity while improving life quality.

At the end of the day, each person living with serious illness may benefit from individualized MNT, that is tailored to their specific needs and symptoms, and early intervention is key to treatment success.

In palliative care, clinicians often consider when artificial nutrition and hydration (ANH) is not indicated; but it is equally important to clarify when it may be beneficial and necessary (e.g., selected obstruction, a known timeline where intake is not feasible, such as head and neck cancer treatment, or in the intensive care unit as a short-term bridge, or in potentially reversible conditions).

Discussions should also address criteria for discontinuation, including lack-of-benefit or a shift in goals. ANH is often not medically helpful and may be non–goal-concordant for diagnoses such as progressive cancer cachexia, advanced stages of dementia, when careful handfeeding is preferred, or when someone is dying.

As with any intervention, always review anticipated benefits and potential harms (e.g., line infection, fluid overload, diarrhea, aspiration). Use a shared decision-making approach that elicits patient goals, consider time-limited trials when appropriate, and establish when to stop.

Much like all aspects of caring for someone living serious illness, an interprofessional team approach is key when addressing malnutrition.

Consult an RD early and often. RDs can aid in proper diagnosis of malnutrition and provide medical nutrition therapy aligned with individual patient and caregiver goals. They can also help address symptoms, such as nausea, vomiting, and fatigue, and mitigate effects on quality of life, length of stay, or readmission.

Your team’s social worker is essential in coordinating nutrition care outside the home and helping ensure medically-tailored meals or grocery shopping support reach people with serious illness in the community. Food insecurity worsens malnutrition and has an especially strong impact during active treatment, such as chemotherapy or dialysis. The RD, social worker, and case manager can help develop individualized solutions for patients and reassess over time. Organizations can also take matters into their own hands by creating specialized food pantries for people undergoing care for a serious illness.

For those living with malnutrition and serious illness, the potential loss of the ability to enjoy food can be devastating. A social worker or chaplain may help them and their families navigate this unique type of grief.

Given the prevalence and impact of malnutrition on people with serious illness and their families, routine screening, timely assessment, and early intervention are essential. A practical clinical approach is to begin with screening, identify contributing factors, treat reversible symptoms, engage the interprofessional team, and reassess over time. Because nutrition is intricately linked to quality of life and personal identity, ongoing conversations via an interprofessional approach can help patients, families, and clinicians make informed, value-based decisions.

Below are some nutrition resources for you, your patients with serious illness, and their families.

• National Comprehensive Cancer Network (NCCN) Guidelines for Patients
• National Kidney Foundation, “Hemodialysis and Your Diet”
• NIH National Cancer Institute, “Nutrition During Cancer Treatment”
• American Cancer Society, “Nutrition and Physical Activity During and After Cancer Treatment”
• American Academy of Nutrition and Dietetics, “Find a Nutrition Expert" Directory