Artificial Nutrition and Hydration Near the End of Life

Background

Artificial nutrition and hydration (ANH) were originally developed to provide short-term support for patients who were acutely ill. For patients near the end of life, ANH is unlikely to prolong life and can potentially lead to medical complications and increase suffering. Researchers have found that ANH often leads to complications in patients nearing the end of life. Patients with advanced, life-limiting illness often lose the ability to eat and drink and/or  interest in food and fluids. Ethical issues may arise when patients, families, or caregivers request ANH even if there is no prospect of recovery from the underlying illness or to accrue appreciable benefit.

Statement

AAHPM endorses the ethically and legally accepted view that ANH, whether delivered parenterally or through the gastrointestinal tract via a tube (including nasogastric tubes), is a medical intervention. Like other medical interventions, it should be evaluated by weighing its benefits and burdens in light of the patient’s clinical circumstances and goals of care. ANH may offer benefits when administered in the setting of acute, reversible illness, or as a component of chronic disease management, when the patient can appreciate the benefits of the treatment and significant burdens are not disproportionate. Near the end of life, some widely assumed benefits of ANH, such as alleviation of thirst, may be achieved by less invasive measures including good mouth care or providing ice chips. The potential burdens of ANH depend on the route used and include sepsis (with total parenteral nutrition), aspiration, diarrhea (with tube feeding), pressure sores and skin breakdown, and complications due to fluid overload. In addition, agitated or confused patients receiving ANH may need to be physically restrained to prevent them from removing a gastrostomy tube, nasogastric tube, or central intravenous line.

AAHPM advocates respectful and informed discussions of the effects of ANH near the end of life among physicians, other healthcare professionals, patients, and families, preferably before the patient is close to death. It is incumbent on physicians, and other healthcare providers, to describe the options that exist when considering the implementation, continuation, or discontinuation of ANH, and establish goals of care with the patient and/or surrogate decision maker. Before the patient or family specify their preferences, the physician or other palliative care provider should ensure that they have adequate information to make a decision. The patient and family should also understand that appropriate medical interventions would continue, even if ANH is not implemented. Ideally, the patient will make his or her own decision about the use of ANH based on a careful assessment of potential benefits and burdens, consistent with legal and ethical norms that permit patients to accept or forgo specific medical interventions. Such choices are best made in concert with family, and should routinely be communicated to the patient’s healthcare proxy. For patients who are unable to make or communicate decisions, the evaluation of benefits and burdens should be carried out by the patient’s designated surrogate or next of kin, using substituted judgment whenever possible, in accordance with local laws.

AAHPM recognizes that in some faith traditions ANH is considered basic sustenance, and for some patients and families, ANH is of symbolic importance, apart from any measurable benefits for the patient’s physical well-being. Such views should be explored, understood, and respected, in keeping with patient and family values, beliefs, and culture. Good communication is necessary to allow caregivers to learn about patient and family fears about “starvation” and other frequently expressed concerns. At the same time, communication is essential to explain the patient’s clinical condition and that the inability to eat and drink can be a natural part of dying that is generally not associated with suffering. Judicious hand feeding and, in some situations, particularly if there is uncertainty about whether a patient will benefit from ANH, a time-limited trial of ANH may be useful. When a time-limited trial of ANH is pursued, clear, measurable end points should be determined at the beginning of the trial. The caregiving team should explain that, as with other medical therapies, ANH can be withdrawn if it is not achieving its desired purpose.

Key Elements

• Recognize that ANH is a form of medical therapy that, like other medical interventions, should be evaluated by weighing its benefits and burdens in light of the patient’s goals of care and clinical circumstances.
• Acknowledge that ANH, like other medical interventions, can ethically be withheld or withdrawn, consistent with the patient’s wishes and the clinical situation.
• Establish open communication between patients/families and caregivers, to assure that their concerns are heard and that the natural history of advanced disease is clarified.
• Respect patient’s preferences for treatment, once the prognosis and anticipated trajectory with and without ANH have been explained.