When patients reach the advanced stages of serious illness, changes in appetite and weight often become a major concern for both clinicians and families. Terms like anorexia and cachexia frequently arise in these conversations, but what do they really mean? Why do they happen? And how can we support patients and their loved ones through this challenging experience, especially during the holidays?
We asked Dr. Kristina Conner, Palliative Care specialist and DynaMed Section Editor, to share key insights on how families can best support their loved ones during this time. Dr. Conner is a practicing palliative care physician caring for patients with oncology and other illnesses.
How common are anorexia and cachexia in advanced illness?
Anorexia (loss of appetite) and cachexia (weight and muscle loss) are extremely common in advanced illness. They occur across a wide range of conditions, including advanced cancers, HIV/AIDS, pulmonary and cardiac diseases.
In fact, almost any serious illness in its later stages can lead to these changes. They are part of a broader physiological response, not a matter of choice.
Why Does Anorexia and Cachexia Happen?
These symptoms are driven by complex neurohormonal and inflammatory signals that tell the body: "Don’t eat." This is not voluntary. Even if patients try to eat, they may still lose weight because cachexia involves metabolic changes that cause fat and muscle loss regardless of calorie intake.
I often explain it this way: Think about the last time you had severe flu. Eating was probably the last thing on your mind. Advanced illness triggers similar but far more persistent signals.
Does Early Satiety or Appetite Fluctuations Play a Role?
Patients often experience “early satiety,” feeling full after just a few bites. Appetite may improve if the underlying illness responds to treatment, but in many cases the decline is difficult to reverse. There is no “magic bullet” to restore lean body mass; the best intervention is treating the underlying disease, which is often not possible in late stages.
How Is This Different from Starvation?
Families sometimes fear their loved one is “starving.” In everyday language, starvation implies choice or lack of access to food. In contrast, anorexia and cachexia are involuntary. The body actively rejects food through hormonal signals. Patients are not choosing to refrain from eating; they are unable to eat comfortably, and forcing food can cause distress.
When Is It Time to Stop Offering Food?
Families often ask: Is there a point where offering food is no longer helpful? My answer is yes, usually when a patient begins the active dying process, which is marked by:
- Sleeping most of the time
- Minimal interaction
- Profound weakness
At this stage, the body no longer signals hunger. It’s not the same as you or I going without food for days; the body is shutting down naturally. Forcing food does not prolong life and can cause discomfort.
Instead, shift the focus to comfort and pleasure. If a patient wants food or drink, offer it. If not, that’s okay. I’ll never forget a 40-year-old patient with advanced Huntington’s disease I cared for during my hospice training. He was six feet tall and weighed less than 100 pounds and barely ate for weeks—except for one day when he drank three cartons of milk and ate two cookies. That small intake sustained him for nearly three weeks. At the end of life, eating becomes about comfort, not nutrition.
What About the Emotional Weight of Food?
Food is more than calories; it’s love, comfort, and connection. Across cultures, feeding someone is an act of care. When illness disrupts this, families often feel helpless or guilty. They may ask:
- What can I do to make them eat?
- Should I prepare different foods?
- Is there a medication to increase appetite?
These questions are natural, but they can lead to tension and sadness when patients cannot eat. Shared meals are deeply social experiences, and their absence during holidays or family gatherings can amplify feelings of loss.
Can Medications Help?
In palliative care and oncology, we sometimes use medications to stimulate appetite, but none offer long-term restoration of muscle mass. Short-term options include:
- Steroids: Can boost appetite and reduce nausea temporarily, but benefits plateau quickly and side effects limit long-term use.
- Mirtazapine (Remeron): Often used for depression, which can contribute to poor appetite. It can also improve mood, sleep, and appetite.
- Other antidepressants (SSRIs): Helpful when depression is a factor.
These medications are typically used for symptom relief or to address underlying conditions, not as a cure for cachexia.
Artificial nutrition and hydration is another topic that requires careful discussion. I typically only recommend feeding through artificial nutrition if it's a bridge to something else, like using a gastrostomy tube for someone with ALS or a patient who will not be able to swallow for the duration of their treatment for esophageal cancer.
How Can Clinicians Support Patients and Families?
Practical and compassionate approaches include:
- Validate feelings: Acknowledge that food is emotional and this struggle is common.
- Educate: Explain the biological reasons for anorexia and cachexia.
- Focus on comfort: Encourage patients to eat what they can, when they can.
- Avoid pressure: Forcing food can cause discomfort and strain relationships.
- Consider medications cautiously: Appetite stimulants offer limited benefit.
A Holiday Message: Connection Beyond the Table
During this holiday season, if you have a loved one with a serious illness who is struggling with appetite or weight loss, approach them with compassion and openness. Meet them where they are in terms of their ability to eat and drink.
Don’t be offended if they aren’t devouring their favorite holiday dishes. Instead, connect in other meaningful ways, through conversation, shared memories, music, or simply being present.
Patients with serious illnesses want connection more than anything. Food is one way we express love, but it is not the only way. There are countless ways to create moments of comfort and belonging that do not involve eating.
Key Takeaways:
- Anorexia and cachexia are common in advanced illnesses and are driven by complex biological processes.
- These symptoms are not voluntary and differ from starvation.
- Appetite may fluctuate, but reversing cachexia is rare without treating the underlying disease.
- Medications can help short-term but have limitations and side effects.
- At the end of life, the goal is comfort and quality of life, not forcing intake.
- Food is deeply tied to emotion and social connection: families need support and understanding.
As clinicians, we can help families navigate this difficult terrain with clear information, empathy, and practical guidance. For patients, the priority should always be dignity, comfort, and honoring their experience –not calorie counts.
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Dr. Kristina M. Conner is the Section Editor of Palliative Medicine at DynaMed and Chief of Palliative Medicine at Exeter Health Resources in Exeter, NH. Dr. Conner received her medical degree from Columbia University and completed Family Medicine residency and a Palliative Medicine fellowship at Brown University and is a certified hospice medical director.
