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Disclosures: Marion Danis, MD Nothing to disclose. Robert M Arnold, MD Consultant/Advisory Boards: Board of nonprofit Vital Talk [Palliative care communication (Vital Talk app)] Don S Dizon, MD, FACP Employee of UpToDate, Inc.
Contributor disclosures are reviewed for conflicts of interest by the editorial group. When found, these are addressed by vetting through a multi-level review process, and through requirements for references to be provided to support the content. Appropriately referenced content is required of all authors and must conform to UpToDate standards of evidence.
INTRODUCTION — Palliative care aims to relieve suffering in all stages of disease and is not limited to the end of life. Patients in palliative care range from fully functional (especially if newly diagnosed with an incurable illness) to extremely limited (particularly at the end of life). Palliative services, including setting patient-centered achievable goals for medical care and aggressive symptom management, should be routinely offered alongside curative and disease-modifying treatments for patients with serious illnesses.
Medically-assisted nutrition and hydration should be considered medical interventions rather than a basic provision of comfort. Promoting early discussions with the patient and family about the goals of care and treatment choices, including the expected benefits and burdens of artificial nutrition and hydration based upon the best available evidence, is ethically appropriate, respects family and patient autonomy, and facilitates informed decision making.
This topic will address the role of artificial nutrition and/or hydration specifically as it applies to patients in palliative care who are in the last days or weeks of life. The issues involving the cessation of hydration and/or nutrition are most relevant to patients at the end of life, where there is little evidence that nutrition or hydration offers any benefit.
The role of artificial nutrition in patients not at the end of life is discussed elsewhere. (See "The role of parenteral and enteral/oral nutritional support in patients with cancer" and "Nutrition support in critically ill patients: Parenteral nutrition".)
In addition, the ethical and legal issues surrounding withholding and withdrawing of other forms of medical treatment at the end of life are discussed elsewhere. (See "Ethical issues in palliative care" and "Legal aspects in palliative and end of life care", section on 'Historic perspective'.)
DEFINITIONS — The following definitions will be used in addressing both interventions:
Artificial nutrition involves non-oral enteral or parenteral delivery of nutrients. Enteral approaches include nasogastric (NG), percutaneous endoscopic gastrostomy (PEG), percutaneous endoscopic gastrostomy jejunostomy (PEG-J), or gastrojejunostomy tubes. Parenteral delivery can involve peripheral intravenous access or central venous access. (See "Nutrition support in critically ill patients: Enteral nutrition" and "Nasogastric and nasoenteric tubes" and "Nutrition support in critically ill patients: Parenteral nutrition".)
Artificial hydration involves the provision of water or electrolyte solutions by any route other than the mouth. This can be achieved by intravenous, subcutaneous, dermal (dermoclysis), and rectal (proctoclysis) administration.
FLUID DEFICITS AT THE END OF LIFE — Fluid homeostasis is the maintenance of a relatively constant and stable composition of body fluids. It is achieved in normal individuals by matching daily water intake to fluid losses. The average amount of water lost (and consumed) per day in the average adult is about 2500 mL. The most important means by which the body loses water is through the kidney. Hormonally-controlled mechanisms regulate water balance by controlling the rate of urinary excretion of water and electrolytes. Other sources of fluid loss include the GI tract, lungs, and skin (insensible water loss), which account for approximately 800 to 850 mL of water per day. (See "Maintenance and replacement fluid therapy in adults", section on 'Water balance'.)
Fluid deficits in terminally ill patients are frequently multifactorial in etiology. However, regardless of the cause, the end result is total body water depletion and decreased renal function. There are two broad categories of fluid deficit disorders, dehydration and hypovolemia, which may present separately or together (see "General principles of disorders of water balance (hyponatremia and hypernatremia) and sodium balance (hypovolemia and edema)"):
Clinical manifestations — The dying process is characterized by diminished oral intake, progressive fluid deficits, and progressive accumulation of drugs (including opioids) and their metabolites, which can cause new symptoms or exacerbate existing ones (eg, fatigue, dizziness, myoclonus, sedation, and hallucinations [1,2]). This in turn leads to a further decline in the individual’s ability to obtain and/or drink fluids. During this process patients have diminished awareness which may decrease their perception of thirst and hunger as they naturally progress toward coma and death.
While clinicians commonly associate several signs and symptoms with dehydration (eg, hypernatremia, thirst, anorexia, nausea and vomiting, fatigue and irritability) or hypovolemia (eg, diminished skin turgor, orthostatic hypotension, and dizziness), they may not be highly specific in terminally ill patients [3-8]. As examples:
OVERVIEW OF THE ISSUES — As clinicians and families collaborate in the care of dying patients they should recognize and respect the varied perspectives each contribute to decisions about the use and cessation of nutrition and hydration.
While it is logistically difficult to systematically study treatment interventions at the end of life, the data consistently show that offering artificial nutrition and hydration for patients who are expected to die within days to weeks generally is not beneficial. At the same time, there are culturally divergent approaches to end-of-life decision making worldwide that influence choices about the use of artificial nutrition and hydration in terminally ill patients .
Some families may view nutrition and hydration as a source of support and a sign of respect and caring, rather than a medical intervention, even when provided by artificial means. Clinicians should recognize that for such families, the decision to continue nutrition and hydration may not be viewed solely as a medical decision.
Defining goals of treatment — The major goal of artificial nutrition should be to provide nourishment to patients whose quality of life or life expectancy can be improved. Unfortunately, both goals may not be realistic for patients at the end of life.
The administration of artificial nutrition and/or hydration has been used in an effort to prevent or reverse distressing symptoms in patients at the end of life. These objectives suggest that decisions about artificial nutrition and hydration may arise separately and the merits of these interventions may need to be evaluated separately.
Artificial nutrition — Although there are data to support the use of artificial nutrition in cases where patients desire to prolong life at earlier stages of a serious illness, there is a consistent lack of benefit to support the use of artificial nutrition at the end of life . Coupled with the potential for harm, we do not advocate the routine use of enteral or parenteral nutritional support in patients receiving palliative care.
Artificial nutrition appears to be of benefit to some patients with chronic illnesses, such as amyotrophic lateral sclerosis  and those in a permanent vegetative state (PVS) . In these populations, nutrition can extend survival by months to years. In addition, patients with cancer who are unable to eat due to cancer- or treatment-related complications (eg, patients with head and neck cancers, those undergoing intensive radiation therapy, those undergoing hematopoietic stem cell transplant, and those with gastrointestinal obstruction at their initial presentation), may benefit from parenteral nutrition, particularly when they are newly diagnosed . (See "Gastrostomy tubes: Uses, patient selection, and efficacy in adults" and "Nutrition support in critically ill patients: Enteral nutrition", section on 'Complications' and "Nutrition support in critically ill patients: Parenteral nutrition", section on 'Complications'.)
Beyond these clinical settings, studies indicate that artificial nutrition has no effect on prolonging life or improving functional status in the setting of many advanced illnesses . Representative findings in the literature include the following:
Artificial hydration — Multiple ethical analyses addressing the appropriateness of offering artificial hydration provided the ethical arguments for and against using artificial hydration and affirm the importance of respecting patient preferences [31-34]. However, we do not advocate the routine administration of artificial hydration as a means to maintain intravascular volume for patients at or near the end of life. This is supported by multiple studies that demonstrate routine hydration generally does not improve outcomes for patients near the end of life (table 1).
The limited value of artificial hydration was shown in a 2013 randomized trial that included 129 patients with advanced cancer receiving hospice care, who were randomly assigned to receive parenteral hydration (1 L of normal saline over four hours daily) or placebo (100 mL per day) . In this trial, the primary objective of this study was to prevent the onset of delirium. The main results were:
While this study is the best thus far to show that hydration had little impact on symptoms or survival for patients at the end of life, these results should be interpreted cautiously, as some patients may find a potential six-day increase in survival at the end of life meaningful. In addition, it should be noted that this trial excluded patients with severe dehydration (eg, those presenting with hemodynamic instability or altered mentation) and patients with a diagnosis other than end-stage cancer. Therefore, it is not clear if we can extrapolate these results to other populations.
In a separate report from this trial, interviews were conducted among patients on the hydration arm (n = 85) and their caregivers (n = 84) . The main finding was that among this group, artificial hydration was viewed as a means to enhance comfort, quality of life, and dignity by reducing symptoms (eg, fatigue) and increasing alertness. Although these findings must be interpreted cautiously, since the views of patients who did not receive hydration (and their family members) were not ascertained, they emphasize the importance of taking the patient’s specific diagnosis, wishes, and hopes into consideration when discussions about the role of artificial hydration arise.
Impact of palliative care location — The administration of artificial hydration may depend on where the patient is living out his or her final weeks of life. The vast majority of patients with advanced cancer who die in acute care hospitals receive hydration until shortly before death [1,31], while most patients who die in hospice or at home receive no fluids [3,37].
This finding is at least partly related to reimbursement issues. For example, in the US, without a need for IV therapy, utilization rules from third party insurers make it difficult to justify billing solely for inpatient hydration; in addition, the per diem hospice funding mechanism makes the administration of parenteral fluids outside of an inpatient facility difficult to finance. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Structure'.)
VOLUNTARY CESSATION OF INTAKE — The voluntary cessation of nutrition and hydration is a medically and legally acceptable step that patients or their families (on behalf of patients who are no longer competent) may choose as a response of last resort for patients at the end of life facing intolerable suffering [38-41]. It is also considered an ethically superior alternative response of last resort to euthanasia or physician assisted suicide . This includes the decision to stop normal eating and drinking or artificially-administered nutrition and hydration.
While everyone stops eating and drinking at some point prior to death, voluntary cessation with the intent of hastening death is rare . However, it is always difficult to judge the impact of a chosen approach to dying on the quality of the dying experience because the choice is not random.
In one survey of over 300 hospice nurses, approximately 30 percent reported that they had taken care of a patient who had made this choice within the prior four years . The overall incidence was very low, with only 126 out of 40,000 patients were identified by these nurses’ reports. The main results were:
WITHHOLDING AND WITHDRAWAL OF ARTIFICIAL NUTRITION AND HYDRATION — While the withdrawing of artificial nutrition and/or hydration may cause more emotional distress for clinicians as well as for patients and their families than the withholding of such a treatment, there is no ethical or legal distinction between them.
The Patient Self Determination Act (PSDA) clearly established the right of an individual patient or the patient’s next of kin or designated surrogate in the United States to decide whether or not to forgo medical interventions (ie, life-sustaining or life-prolonging treatment), including the rights not to have artificial nutrition and/or hydration administered (withholding) and to stop the administration of such support measures (withdrawal) . However, there are legal and ethical issues that must be considered in decisions regarding the withholding or withdrawal of artificial nutrition and/or hydration. (See "Legal aspects in palliative and end of life care" and "Ethical issues in palliative care".)
Legal issues — It is important for clinicians to be familiar with the state regulations where they practice. Patients who wish to forgo artificial nutrition and hydration should be encouraged to complete advance directives, in addition to a living will, that comply with the specific requirements of their state. The National Hospice and Palliative Care Organization provides state-specific information and advance directive forms at Caring Connections .
Within the US, federal regulators take no stand on the right to refuse artificial nutrition and hydration and leave this issue to be decided under state law . However, the laws regarding whether artificial nutrition and hydration are medical interventions (rather than basic provisions of comfort) vary on a state level. In states that deem these to be provisions of comfort (rather than “life-sustaining” or “life-prolonging” interventions), patient wishes as covered by the PSDA may not specifically apply. A listing of all state living will statutes is available online. In addition, further information including a state-by-state list of medically supplied nutrition and hydration legal cases and attorney general opinions is available .
Ethical issues — The ethical principles governing decisions to treat with, withhold or withdraw from artificial nutrition and hydration in the US are well articulated :
Decisions for patients who lack decision-making capacity should be made in accord with advance directives and/or persons designated by the patient to hold durable power of attorney. When no advance directive exists, family members should decide, bearing in mind what they believe the patient would want under the circumstances.
Length of survival after stopping nutrition and hydration — In general, patients who go without nutrition or hydration in the context of a terminal illness only live for a short time. As examples:
REHYDRATION — For patients who are not undergoing hydration at the end of life, progressive signs or symptoms of dehydration can be troubling, both to the patient, his or her family, and caregivers. In response, clinicians may be asked to initiate fluids or nutrition in an effort to rehydrate the patient with hopes to provide symptomatic relief if not prolong life.
Although there is only low-quality evidence available, we do not advocate rehydration in these situations because there appears to be no symptomatic benefit associated with rehydration and it may introduce other adverse effects for patients at the end of life. A 2011 systematic review that reported there were insufficient data to determine whether artificial hydration was of benefit in this setting . Subsequent studies not included in the systematic review also illustrate the lack of benefit with rehydration:
Despite the lack of benefit, patients (or their families) may request a trial of hydration, particularly to help manage delirium. Given that such fluids are unlikely to harm the patient and the qualitative data suggest that it is of psychosocial benefit to families, many clinicians will agree to a trial. This approach is discussed in more detail below. (See 'Trial of rehydration' below.)
Burdens — The burdens of rehydration in patients with advanced terminal illness run counter to the goals of palliative care. These include :
However, while relatively large hydration volumes can worsen or lead to pleural effusion and/or excess bronchial secretions, low volumes (<1000 mL daily) appear to be safely tolerated [50,52,53].
Beyond the issue of volume to be infused, the practical aspects of maintaining intravenous (IV) access presents another unnecessary task for patients receiving hospice care because IV sites may be difficult to maintain in the home environment, especially if they are peripherally inserted rather than a centrally-placed catheter. Reasons for this include:
Furthermore, the presence of an IV may increase agitation, and prompt a need for restraints, especially if patients experience delirium.
Impact on target symptoms — Whether rehydration has an impact on symptoms attributed to fluid deficits is unclear and studies have yielded conflicting results.
APPROACH TO MEDICAL DECISION MAKING — The two important considerations in the decision-making process regarding hydration at the end of life include :
We believe it is inappropriate to use artificial hydration and/or nutrition in a terminally ill patient to prevent or treat thirst, hunger, or an emotional concern that a loved one will “dehydrate to death.” As an example, more than two-thirds of patients with advanced cancer complain of thirst or dry mouth, yet in contrast to healthy individuals, thirst seems unrelated to dehydration and serum sodium, and is unrelieved by fluid therapy . The emotional issues of family members, stemming from their concerns of seeing their loved one suffering from starvation and dehydration, must be acknowledged and addressed . Discussions should include simple explanations of common symptoms associated with the dying process, including the frequency of delirium and its causes.
Many symptoms such as thirst, dry mouth, and fatigue are not specific for hydration status, and hydration is not likely to be of any benefit. There is no evidence that hydration reduces the risk of (or worsening of) fatigue, sedation, myoclonus, or hallucinations . Patients and their families should be made aware of the data showing a lack of benefit of artificial hydration at the end of life. In addition, they should be reassured that it is ethical to withhold and withdraw artificial hydration.
Most palliative care clinicians promote the use of mouth care, including sips of water, when desired, rather than parenteral hydration in this setting . This allows the family to feel like they are doing something for the patient and to be involved in his/her care.
PRACTICAL STRATEGIES FOR MANAGING PATIENTS WHO HAVE STOPPED NUTRITION AND HYDRATION — When a patient stops eating and drinking or artificial nutrition and hydration are withdrawn, clinicians should be attentive to comfort. These include the following:
If the patient is able, continue or encourage oral intake if it is compatible with the overall goals of care and comfort. Efforts to encourage oral intake should include hand-feeding, providing sufficient time to feed the patient; selecting food that has appropriate temperature taste and consistency (using thickeners as needed); offering foods with strong flavors; using techniques such as placing the food well into the mouth; varying the size and frequency of the meals; promoting good cough after each swallow to reduce aspiration; and avoiding distractions while eating .
In this situation, it is also important to attend to family concerns. Families who consider nutrition and hydration to have symbolic value that extends beyond the bounds of medical care should have their point of view respected so long as it does not conflict with the patient’s previously expressed wishes. In general, families and loved ones appreciate an explanation of what is happening with their loved one as it relates to the dying process, and find reassurance that symptoms can be palliated. The family should be helped to understand that artificial nutrition and hydration is a medical treatment that is often not indicated when the patient is dying and will not improve the patient’s condition. Giving the family a realistic estimate of the time until death can prepare them to handle the ensuing time [42,47]. (See 'Length of survival after stopping nutrition and hydration' above and "Survival estimates in advanced terminal cancer".)
Trial of rehydration — Despite the lack of benefit, patients (or their families) may request a trial of hydration, particularly to help manage delirium. Given that such fluids are unlikely to harm the patient and the qualitative data suggest that it is of psychosocial benefit to families, many clinicians will agree to a trial. The specific mode of hydration should be tailored to the specific patient’s situation. However, artificial hydration should be discontinued if there is no perceived improvement. (See 'Rehydration' above.)
Before the trial is undertaken, it should be made clear that symptoms may not respond to fluids and that hydration is associated with risks (eg, peripheral or pulmonary edema). Adequate hydration usually can be accomplished with much lower volumes (≤1000 mL per day) than are routinely recommended for medical and surgical patients [1,31]. This finding may be due to decreased body weight, which results in:
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