Managing Changing Nutritional Needs at the End of Life

If you are a family member or caregiver to someone who is dying, you may be concerned about hunger and thirst at the end of their life. You may wonder if your loved one should be receiving intravenous (IV) fluids through a vein or tube feedings.

You may be concerned that the person you've been caring for will be hungry and will suffer if they are unable to eat. After all, providing food and fluids is fundamental to the role of caregiver.

However, IV fluids and tube feedings are not typically recommended in dying patients. They carry serious risks and there's a lack of evidence that they can improve symptoms of dehydration, quality of life, or survival at the end of life.

This article explores why IV fluids and tube feedings are often not the best options in dying patients and how to find additional support if you are a caregiver for a dying loved one.

Artificial Nutrition and Hydration

Artificial nutrition is delivery of nutritional support that does not require a patient to chew and swallow. It can mean total parenteral nutrition (TPN), which is given through a vein, a nasogastric tube (NG tube) that passes from the nose to the stomach, or a gastrostomy tube (G-tube or PEG tube) inserted into the abdomen. 

Artificial hydration refers to fluids given intravenously (through a vein).

Artificial nutrition and hydration have risks. The procedures can be uncomfortable or painful and there are risks of complications such as infections, mineral or electrolyte imbalances, or even death. These risks usually outweigh any benefits for someone who is dying.

End of Life Hunger and Thirst

Loss of appetite and weight loss is a normal part of the dying process. It is gradual for some and sudden for others, but most patients with a life-limiting illness stop eating and drinking at some point.

Patients, caregivers, and healthcare providers have reported that nutrition at this point is sometimes a non-issue. Patients are often just not hungry at the end of life.

Some people are thirsty during this time. They may experience dry mouth. This is best treated with lubricants and good oral hygiene, such as using oral swabs to help clean the inside of the mouth. Studies have shown that IV hydration isn't effective in alleviating common symptoms of dehydration.

Other symptoms of dehydration, such as muscle spasms, are rare and can be treated with sedatives if they occur.

It's important to keep in mind that your loved one will die from their underlying disease or condition and not starvation or dehydration.

Making Difficult End-of-Life Decisions

If you are faced with making the decision to withhold or withdraw artificial feedings and/or hydration, talk with a healthcare provider about the benefits and risks of each one. These will be unique to each person.

It's also important to honor any medical preferences your loved one has expressed. Take time to consider the options. You may also want to find some additional support.

Goals of Care

Whenever possible, the place to begin when considering life-prolonging treatments is based on a person's stated medical preferences and intended goals of care. Ideally, they have spelled these out before they are facing a medical crisis or dying. Plan ahead and have open conversations with loved ones related to their personal values and preferences.

Legal Documents and Forms

In addition to discussing preferences with close family members, it's also important to put medical preferences in writing.

• Advanced directives are legal documents with instructions about medical preferences and who should be responsible for your medical decisions if you lack decision-making capacity.
• A living will is a type of advance directive that includes preferences related to which medical treatments a person wants or doesn't want. This often includes preferences related to various forms of life support, or any treatment that may prolong life without curing or reversing the underlying medical issue.
  
• Preferred intensity of care and/or preferred intensity of treatment forms may be used in facilities such as nursing homes. They list preferences regarding medical care and treatment.
• Physician orders for life-sustaining treatment (POLST) are portable medical orders that can be presented to medical providers in any setting. These list preferences regarding intensity of treatment and forms of life support typically given.

Preferences related to life support may include artificial nutrition or hydration, mechanical ventilation, kidney dialysis, chemotherapy for cancer treatment, and antibiotics for bacterial infections.

Support for Caregivers

Being a caregiver for someone with a chronic or life-limiting illness is stressful, exhausting, and at times confusing. Once the ill person starts the dying process, the task becomes more demanding and the emotions more intense. You may find yourself wondering if you’re doing the right thing, saying the right thing, and even thinking the right thing.

The Caregiver's Action Network offers resources for all types of caregivers to support and connect you with other caregivers. There is also a free help desk where you can ask questions via chat, e-mail, or phone.

Summary

Artificial nutrition or hydration is not typically recommended in dying patients since risks often outweigh any potential benefits. Establishing goals of care and listing medical preferences in legal documents and forms before any life-threatening illnesses or even upon a diagnosis will help ensure that your preferences are followed.