Stopping nutrition and hydration at the end of life

INTRODUCTION — Palliative care aims to relieve suffering in all stages of disease and is not limited to the end of life. Patients receiving palliative care range from fully functional (especially if newly diagnosed with an incurable illness) to extremely limited with regard to their quality of life and prognosis. 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.

This topic will address the possibility of withholding or stopping artificial nutrition and/or hydration specifically as it applies to patients who are in the last days or weeks of life.

This topic will also address voluntary stopping of eating and drinking (VSED), ie, the cessation of ordinary (not medically assisted) food and liquid, since the ethical ramifications of such a choice are closely related to stopping artificial nutrition and hydration.

The role of artificial nutrition in patients who are 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 intubated critically ill adult 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 in the United States", section on 'Medical interventions that can be stopped'.)

DEFINITIONS — The following definitions will be used in addressing these interventions:

●Artificial nutrition – 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 intubated critically ill adult patients: Enteral nutrition" and "Inpatient placement and management of nasogastric and nasoenteric tubes in adults" and "Nutrition support in intubated critically ill adult patients: Parenteral nutrition".)

●Artificial hydration – Artificial hydration involves the provision of water or electrolyte solutions by any route other than the mouth. This can be achieved by intravenous, subcutaneous (hypodermoclysis) [1,2], and rectal (proctoclysis) administration [3-5]. Hypodermoclysis involves subcutaneous infusion of fluids using a small-gauge needle that is inserted into the thighs, abdomen, or arms. Evidence suggests that hypodermoclysis has minimal complications, is simple, low cost, and may be useful when hydration via intravenous catheter is not possible or desired [6]. Proctoclysis involves infusion of fluids via the rectum. Proctoclysis can be simple and comfortable with the use of a Macy tube particularly in resource-constrained settings where intravenous and sterile fluids are hard to come by [3-5].

●Voluntary stopping of eating and drinking – Voluntary stopping of eating and drinking (VSED) is the self-initiated, intentional decision to stop drinking liquids and eating food for the specific purpose of causing death. (See 'Voluntary cessation of intake' below.)

FLUID DEFICITS AT THE END OF LIFE — Fluid deficits in terminally ill patients are frequently multifactorial in etiology. The dying process is usually characterized by diminished oral intake, partly due to diminished perception of thirst and hunger. In addition, there may be a progressive accumulation of drugs (including opioids) and their metabolites, which can cause or exacerbate symptoms of fatigue, dizziness, myoclonus, sedation, and hallucinations which impair fluid intake [7,8]. These causes all result in total body water depletion and decreased renal function.

Dehydration (resulting from total body water depletion) and hypovolemia (due to loss of both salt and water, mainly from the extracellular space) may occur either separately or together. (See "General principles of disorders of water balance (hyponatremia and hypernatremia) and sodium balance (hypovolemia and edema)".)

While clinicians commonly associate several signs and symptoms with dehydration and hypernatremia (eg, thirst, anorexia, nausea and vomiting, fatigue, and irritability) or hypovolemia (eg, diminished skin turgor, orthostatic hypotension, and dizziness), these symptoms may not be highly specific in terminally ill patients [9-14]. Symptoms of thirst do not necessarily improve with artificial hydration in this patient population [12,13,15,16]. (See 'Use of artificial hydration' below.)

REDUCED NUTRITION AT THE END OF LIFE — It is common for patients who have cancer, neurodegenerative diseases, late-stage organ failure, or other terminal illnesses to consume less food and be malnourished. This may be due to poor dentition, dry mouth, oral ulceration, gastrointestinal obstruction, intestinal dysmotility, dysphagia, malabsorption, delirium, or side effects of medications [17]. Patients with cancer can also develop systemic inflammation. As a result of infection and tissue damage they experience release of proinflammatory cytokines that can cause suppression of appetite while also increasing metabolic rate. This results in altered protein turnover, loss of muscle mass and fat, increased acute phase reactants, insulin resistance, impaired glucose tolerance, and lipid oxidation leading to cancer related cachexia [18-20].

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:

●In a survey of nurses' experiences, hospice patients who stopped eating and drinking died an average of 10±7 days after stopping, and 85 percent of patients died within 15 days [21]. (See 'Voluntary cessation of intake' below.)

●In a separate study of 178 Dutch nursing home patients with dementia who had nutrition and hydration withdrawn, 59 percent of patients died within one week and 75 percent within two weeks [22]. Patients who were deemed to be more severely ill, had dyspnea, or had apathy were more likely to die within the week.

OUR APPROACH — We believe that clinically assisted nutrition and hydration should be considered medical interventions rather than basic provisions of comfort.

Defining goals of care — The first step in discussing stopping nutrition and hydration is to determine the goals of care with the patient and their loved ones. Discussing goals of care is a skill that should be distinguished conceptually from talking about prognosis or delivering bad news. While discussions about goals of care may involve some of the same principles as other difficult communication tasks, these discussions demand a different framework. (See "Discussing goals of care".)

Decision-making — Patients and their loved ones will vary in the amount of guidance they wish to receive and in the extent of responsibility they wish to shoulder in making treatment choices. Clinicians should thus be prepared to engage in shared decision-making that accommodates patient, family, and other surrogate decision-making preferences.

The important questions to consider in the decision-making process regarding hydration at the end of life include the following [23]:

●What are the relative benefits and risks of providing or forgoing hydration or nutrition for this patient?

●What are the views and preferences of the patient and loved ones?

●What are the individualized goals of care?

The emotional issues of family members or other loved ones, stemming from their concerns about the patient possibly suffering from starvation and dehydration, must be acknowledged and addressed [24]. Discussions should include simple explanations of common symptoms associated with the dying process, and an explanation of how patients are likely to feel when they do not receive nutrition and hydration. Patients and their loved ones 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.

Data consistently show that offering artificial nutrition and hydration for patients who are expected to die within days to weeks is generally not beneficial, as discussed below. 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 [25]. Some families or loved ones 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 in these situations, the decision to continue nutrition and hydration may not be viewed solely as a medical decision.

A majority of guidelines from North America, Europe, Australasia, and South Africa include consideration of withdrawal of nutrition and hydration, and highlight the need to respect patients' wishes and advance directives including the right to refuse treatment [26]. The American Association of Hospice and Palliative Medicine (AAHPM) guidelines do not recommend artificial nutrition and hydration at the end of life but recognizes that in some faith traditions artificial nutrition and hydration is considered basic sustenance and that, for some patients and families/communities, it is of symbolic importance, apart from any measurable benefits for the patient's physical wellbeing. Such views should be explored, understood, and respected, in keeping with patient's values, beliefs, and culture, once the prognosis and anticipated trajectory with and without artificial nutrition and hydration have been explained [27].

It can be helpful to provide information to families or loved ones that 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. Symptom management is addressed elsewhere. (See "Overview of managing common non-pain symptoms in palliative care".)

Use of artificial nutrition — We do not advocate the routine use of enteral or parenteral nutritional support in patients receiving palliative care at the end of life, based on the lack of evidence along with the potential for harm.

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 lack of well-designed studies to assess the benefit of artificial nutrition at the end of life [28].

Artificial nutrition appears to be of benefit to some patients with chronic illnesses, such as amyotrophic lateral sclerosis [29] and those in a permanent vegetative state [30]. 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 [31]. (See "Gastrostomy tubes: Uses, patient selection, and efficacy in adults" and "Nutrition support in intubated critically ill adult patients: Enteral nutrition", section on 'Monitoring and management of complications' and "Nutrition support in intubated critically ill adult 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 [32]. Representative findings in the literature include the following:

●Patients with advanced cancer often have clinical evidence of muscle wasting, known as cancer cachexia. While patients who are not in the terminal phase of cancer may benefit from nutritional support and other medical therapies for cancer cachexia [33], low-quality evidence indicates that the administration of enteral or parenteral nutrition in the last days to weeks of life rarely changes the course of the disease [34,35]. Observational data show that patients with late stage cancer associated with gastrointestinal obstruction or dysphagia may gain a few weeks of preserved functional status with assisted nutrition but those with cachexia are less likely to do so [36]. In a 2006 review of the literature on the role of artificial nutrition in patients with terminally ill cancer, the authors found little evidence to support its use [34]. However, there have been no randomized trials to help inform the assessment of the risks and benefits more clearly in this population.

Preclinical work suggests that the lack of benefit with parenteral nutrition in patients with cancer cachexia may be related to the release of cytokines that decrease protein synthesis and increase protein degradation [37,38]. Similar mechanisms relating to cachexia may exist in other diseases [39]. (See "Pathogenesis, clinical features, and assessment of cancer cachexia" and "The role of parenteral and enteral/oral nutritional support in patients with cancer".)

●Studies in patients with advanced dementia indicate that artificial nutrition does not prolong life [40-44], improve overall function [45], prevent aspiration [46,47], or reduce pressure sores [48]. Although high-quality data are lacking, multiple observational [40-43] and retrospective [47] studies consistently demonstrate the lack of benefit to artificial nutrition for these patients. While one might expect pressure sores to be reduced (in light of the importance of good nutritional status for wound healing), it is likely that immobility and incontinence undermine the potential benefit of tube feeding [49]. (See "Gastrostomy tubes: Uses, patient selection, and efficacy in adults".)

Use of artificial hydration — 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.

Multiple ethical analyses addressing the appropriateness of offering artificial hydration have provided ethical arguments for and against using artificial hydration and affirm the importance of respecting patient preferences [23,50-52]. However, multiple studies demonstrate that routine hydration generally does not improve outcomes for patients near the end of life [13,16,53-56].

The limited value of artificial hydration was most convincingly 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) [53]. The primary objective of this study was to prevent the onset of delirium. The main results were as follows:

●There was no difference between treatment and control groups in delirium scores or dehydration symptoms (a composite score of fatigue, myoclonus, sedation, and hallucinations), at day 4 or 7.

●There was no statistically significant difference in overall survival (median, 21 versus 15 days for patients undergoing hydration or placebo, respectively).

●Patients in both groups noted improvement in symptoms of dehydration at day 4, suggesting these benefits may be more related to either the increased frequency of visits and assessments by research nurses or a placebo effect rather than the provision of fluids.

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.

However, patients and their families or loved ones can have strongly held beliefs about assisted hydration, and these beliefs inform their interactions with health care professionals. In a separate report from this trial, interviews were conducted among patients on the hydration arm (n = 85) and their caregivers (n = 84) [24]. 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 [57].

VOLUNTARY CESSATION OF INTAKE — While many causes of malnutrition and cachexia in the course of terminal illness are involuntary, some patients may voluntarily choose or may be offered the option of stopping nutrition and hydration as they approach the end of life [58]. The reasons for such a choice are generally to hasten death in the setting of suffering that is refractory to optimal palliative interventions, avoid prolonged dying that the person finds intolerable, or avoid expected deterioration or suffering due to an irreversible illness that the person regards as unacceptable [59]. Voluntary cessation of nutrition and hydration includes voluntary stopping of eating and drinking (VSED) or stopping of artificially administered nutrition and hydration. The voluntary cessation of intake is an acceptable step that patients or their families or other caretakers (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 [60-64]. Some consider it to be an ethically superior alternative response of last resort to euthanasia or medical aid in dying [60]; however, others see it as a specific choice on the part of the patient to hasten death and therefore as morally wrong [64]. (See 'Issues specific to voluntary stopping of eating and drinking' below.)

●Prevalence – A systematic review of VSED reported a prevalence of 2.1 percent of deaths per year (on average 2800 deaths annually). Among 16 studies included in the systematic review, the main reasons for patients hastening death by VSED were: readiness to die, life perceived as being pointless, poor quality of life, a desire to die at home, and the wish to control the circumstances of death [65].

In a comparison of six European countries (Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland), in which a total of 20,480 deaths were reviewed, the percentage of deaths that were preceded by a decision to forgo artificial nutrition and hydration varied from 2.6 percent in Italy to 10.9 percent in the Netherlands [66]. In a national lookback study conducted in the Netherlands, clinicians received a questionnaire about end-of-life decisions for 6600 patients in three age groups: 17 to 64, 65 to 79, and 80 and older. Treatment of some sort was foregone for 37 percent of patients, and artificial nutrition and hydration were the most frequently withheld treatment in all age groups [67].

●Patient experience – In general, VSED lasts 10 to 14 days before death, but survival may vary depending on the underlying disease status, debility, and degree of hydration [21]. In a 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 [21]. The overall incidence was very low, with only 126 out of 40,000 patients identified by these nurses' reports. They reported that those choosing to cease oral intake were older and less likely to have been evaluated by a mental health professional than those who chose physician-assisted death. Among the 102 patients who ceased eating or drinking, the quality of the dying experience, as rated by nurses, was very good.

●Clinician involvement – Although VSED is seen as a choice that is almost entirely under the patient's control, in practice, clinician participation is critical in terms of both initial assessment and ongoing management. Key aspects of initial assessment are to ensure that the patient has decision-making capacity, the decision is not influenced by mental illness, the patient is fully informed of the risks and alternatives, and the choice is voluntary. Patients should understand that VSED may be difficult, suffering may worsen, and thirst may be difficult to manage. Patients embarking on VSED will need palliative care to manage the associated thirst and substantial caregiver support to respond to progressive disability.

Clinicians may, at times, have difficulty determining whether refusal of food is an expression of a competent and unforced choice. In these settings, clinicians must exercise careful judgment in determining how to respond.

Several health care associations have issued guidance on how to care for patients who choose VSED [59,68-70]. Practical strategies for deciding to pursue VSED and for planning, counseling, and comforting patients in this process have been well described [59,71].

LEGAL AND ETHICAL CONCERNS

Legal context — In the United States, the Patient Self-Determination Act (PSDA) clearly established the right of an individual patient or the patient's next of kin or designated surrogate 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) [72]. (See "Legal aspects in palliative and end-of-life care in the United States" and "Ethical issues in palliative care".)

Court cases in various states have consistently reflected an acceptance of decisions to forgo medically supplied nutrition and hydration, and advance directive statutes currently reflect that development [73]. While most state statutes are silent on this matter, some statutes only allow forgoing medically supplied nutrition and hydration if the patient has specifically refused them, or their wishes can be reasonably known or ascertained. States that restrict forgoing artificial nutrition and hydration require that they be provided only if necessary for comfort [73].

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 (ie, 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 [74,75].

Clinicians in the United States should also be aware that the Centers for Medicare and Medicaid Services (CMS) does not preclude the administration of artificial nutrition and hydration during hospice care. This means that patients or their surrogate decision-makers are not constrained regarding decisions about whether to continue or forgo nutrition and hydration when referring patients for hospice care at the end of life [76].

The ethical principles governing decisions to treat with, withhold, or withdraw from artificial nutrition and hydration in the United States are well articulated [77]:

●Autonomy – According to the principle of autonomy, adults have a moral right to follow a life path of their own choosing, with the authority to control their own bodies and be protected from unwanted intrusions. Competent adults have the right to decide for themselves whether to stop eating and drinking and whether or not they would like to withdraw or withhold artificial nutrition and hydration.

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 or other appointed decision makers should decide, bearing in mind what they believe the patient would want under the circumstances. (See "Assessment of decision-making capacity in adults".)

The concept of relational autonomy has been promoted to encourage appreciation of the reality that individuals have close ties to family and other loved ones who provide substantial support and advice [78]. Clinicians are advised to engage in shared decision-making with patients and their loved ones particularly when facing significant choices at the end of life [79].

●Beneficence and nonmaleficence – The concepts of beneficence and nonmaleficence require that the clinician's actions must benefit the patient and avoid harm, when possible. Therefore, decisions to withhold or stop artificial nutrition and hydration in patients approaching the end of life should be informed by evidence regarding its benefits and risks and should also take into account the wishes of patients and their loved ones.

Withholding versus withdrawal of artificial nutrition or hydration — While withdrawal of artificial nutrition and/or hydration may cause more emotional distress for clinicians as well as for patients and their families or loved ones than withholding such a treatment, there is no ethical or legal distinction between them.

Issues specific to voluntary stopping of eating and drinking — The ethical issues entailed in voluntary stopping of eating and drinking (VSED) differ somewhat from those entailed in limitation of artificial nutrition and hydration since the decision and its implementation may be independent of a medical professional. The principle of autonomy dictates that people have a right to refuse life-sustaining treatments, but because eating in response to hunger and drinking in response to thirst are natural processes, some argue that VSED is not analogous to discontinuation of life-sustaining treatment, such as artificial nutrition, hemodialysis, or ventilator support. Opponents would argue that VSED is similar to other types of self-harm that clinicians should not endorse; however, proponents of VSED argue that an informed adult with capacity, who understands risks and benefits, should be supported when attempting VSED. While patients can choose to pursue VSED without the involvement of a clinician, clinicians may be called upon to address symptoms that develop in the course of VSED. Likewise, because family members or other involved surrogate decision-makers may need to provide substituted judgment if an individual becomes delirious in the late stages of the process, these individuals should also be comfortable with the patient's choice of VSED. Thus it is advisable for patients, family members, or surrogate decision-makers to engage with clinicians in shared decision-making. Clinicians who are not comfortable with this choice should refer patients to other providers who are willing to endorse the choice and assist them [71]. (See 'Voluntary cessation of intake' above.)

Patient, family, and clinical participation in VSED has not been legally tested in the United States [64].

Clinicians should be aware that some religions, particularly Catholicism, may view VSED as an intentional shortening of life that is forbidden [80]. While Catholic scholars criticize VSED, they do recognize that the tendency of dying patients to stop eating and drinking should not automatically be interpreted as an act intended to hasten death, but rather as an understandable and acceptable response to anorexia, nausea, or discomfort [81].

Individual patients who wish to pursue voluntary stopping of eating and drinking are well advised to take the following helpful steps [82]:

●Document wishes to forgo or stop receiving nutrition and hydration in writing and attach them to an advance directive.

●Prepare a personal video tape stating the desire to stop nutrition and hydration.

●Receive a psychiatric evaluation to assess decisional capacity and to rule out depression or other conditions that may affect decision-making capacity (if the person is not terminally ill).

Some patients with a diagnosis of dementia may wish, while they are still competent to make decisions, to plan to stop eating and drinking at some future time when their dementia has progressed to the point at which they are no longer competent to decide. Under these circumstances, patients are well advised to prepare an advance directive that explicitly articulates this wish while they are still able.

Helpful recommendations for accommodating requests for VSED in the institutional setting include exploring the patient's concerns, reversing any problems that are remediable, engaging in interdisciplinary care planning, obtaining second opinions and hospice expertise as needed, documenting the patient's wishes, and training staff to provide the necessary supportive care in preparation for accommodating the patient's request [83].

When refusal of food is complicated by psychiatric illness or imprisonment — The ethical analysis of how to respond to an individual's desire to refuse food may be complicated and require attention to the circumstances motivating this choice.

As an example, providers may be involved in the care of patients with longstanding anorexia nervosa who are dangerously malnourished (body mass index [BMI] <15) but who refuse a feeding tube despite the possibility that such an intervention may be lifesaving. In such circumstances, patients may not understand the life-threatening nature of their condition or may lack adequate decision-making capacity [84].

Decisions about whether or not to force-feed such patients involve consideration of the attendant harms and benefits. Force-feeding may make a patient feel disempowered and bitter and involve discomfort; however, such feeding may be life-saving and restore patient autonomy [85]. Every effort should be made to try less intrusive measures, including nutritional counseling, behavioral management, and psychotherapy, before a decision is make to use or forgo a feeding tube (see "Anorexia nervosa in adults and adolescents: Nutritional rehabilitation (nutritional support)"). Increasing recognition of the value of palliative care for psychiatric patients may aid in decision-making in such circumstances [86]. A patient-centered approach, in which the goal of care is to improve quality of life, may allow the patient to improve sufficiently to resolve some of their pathological approaches to eating.

Clinicians working in prison settings may encounter caring for prisoners on hunger strikes. This situation, and the ethical issues involved, are discussed in detail elsewhere. (See "Clinical care of incarcerated adults", section on 'Hunger strikes'.)

PRACTICAL STRATEGIES TO PREPARE FOR AND MANAGE PATIENTS WHO ARE STOPPING NUTRITION AND HYDRATION — When a patient chooses to stop eating and drinking or when artificial nutrition and hydration are withdrawn, clinicians should be attentive to the following [59]:

Patients preparing for VSED

●Ensure that other approaches to symptom management have been explored and exhausted.

●Consider whether the patient is expected to die imminently; voluntary stopping of eating and drinking (VSED) may not be appropriate if death is expected within a shorter time span than the expected duration of VSED (7 to 21 days).

●Encourage enrollment in a hospice program if the patient is not already enrolled so that symptom management can be optimized.

Anticipate that VSED will involve three phases:

●Early – When the patient is oriented, able to interact, and able to articulate how they prefer to be comforted.

●Middle – When the patient is increasingly dehydrated; feeling fatigued, lightheaded, and begins to sleep longer; and may suffer from agitation, confusion, and hallucinations.

●Late – When the patient may lose consciousness as organ failure progresses.

Other preparatory steps:

●Medical consultation and support.

●Consultation with a death doula experienced with VSED who will support the patient and family throughout the entire process.

●Consider need for hiring caregivers, ideally those experienced with VSED.

●Legal consultation if there are concerns about family members' or others' support of patient's decision.

●Determining where the patient will reside while pursuing VSED.

●Obtaining necessary supplies and equipment, including mist humidifier, mouth lubricant, eye drops, small spray bottle, and mouth swabs.

●Informing chosen family members, friends, and others who comprise a person's inner circle of support of patient's decision, start date, and specific ways in which they can be supported.

Symptom management for all patients

●To manage side effects of medications and/or medication withdrawal, consider tapering nonessential medications; monitor drug dosages, particularly pain medications, because dehydration may be accompanied by reduced consciousness and reduced drug elimination; and consider nonoral routes of medication administration.

●Continue or encourage oral intake if it is compatible with the overall goals of care and comfort. Efforts to facilitate 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 [87]. If the effort to eat and drink becomes too draining or is not welcome, the patient should not be pressured to make this effort.

●To alleviate symptoms of dry mouth and thirst, mouth care should be administered, including oral cleaning, ice chips, popsicles, and the use of artificial saliva [88]. To moisten the lips, petroleum jelly, water-based lubricants, or lip moisturizers can be applied. Consider using air humidifiers. Engage the family or other loved ones in the use of mouth care, including sips of water when desired [89]. For patients in the intensive care unit (ICU), an "ICU bundle" of oral swab wipes, sterile ice-cold water sprays, and a lip moisturizer have been shown to decrease thirst intensity, thirst distress, and dry mouth [90]. These and other suggestions for palliating thirst in the ICU are outlined in the table (table 1). (See "Palliative care: Issues in the intensive care unit in adults", section on 'Symptom management in the ICU'.)

●Attend to the concerns of families or loved ones. Persons 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 they find reassurance that symptoms can be palliated. The family or other loved ones 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. Furthermore, iatrogenic overhydration can lead to pain and dyspnea from fluid retention. Giving a realistic estimate of the time until death can prepare loved ones to handle the ensuing time [21,22]. (See 'Voluntary cessation of intake' above and 'Legal and ethical concerns' above.)

●In later stages of voluntary stopping of eating and drinking (VSED), delirium may cause an individual to ask for food and drink, which needs to be anticipated and addressed in advance [71]. Caregivers need to be prepared to respond by interpreting whether a patient is lucidly expressing a change of preference or whether it is best to continue withholding liquids and alleviating the associated symptoms in a manner that is consistent with the patient's previously expressed wishes.

Rehydration — Progressive signs or symptoms of dehydration can be troubling to the patient, their loved ones, and caregivers. In response, clinicians may be asked to initiate fluids or nutrition in an effort to rehydrate the patient with hopes of providing symptomatic relief if not prolong life.

We do not advocate rehydration in these situations because there appears to be little or no symptomatic benefit associated with rehydration and it may introduce other adverse effects for patients at the end of life [54,91].

A 2023 systematic review reported there were insufficient data to determine whether artificial hydration improves quality of life or survival in palliative care patients [28].

Despite the lack of benefit, patients (or their families or loved ones) may request a trial of hydration, particularly to help manage delirium. The specific mode of hydration should be tailored to the specific patient's situation. However, artificial hydration should be discontinued if it becomes burdensome, leads to adverse effects, or if there is no perceived improvement. Before the trial is undertaken, it should be made clear that symptoms may not respond to fluids and that hydration can be 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 [7,50]. This finding may be due to decreased body weight, which results in the following:

●Decreased absolute water requirements

●Decreased insensible water losses as a consequence of reduced physical activity

●Decreased clearance of free water because of an increase of antidiuretic hormone (ADH) due to chronic nausea and cachexia (although only a small proportion of patients develop a full-blown syndrome of inappropriate secretion of ADH [92])

Burdens — The burdens of rehydration in patients with advanced terminal illness run counter to the goals of palliative care. These include [89,93]:

●Vomiting and/or diarrhea, due to increased gastrointestinal fluids

●Respiratory distress, including a choking and a drowning sensation, due to increased pulmonary fluid

●Onset or worsening of peripheral edema

●Increased urine output, which may require catheterization

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 [54,55,94].

Beyond the issue of volume to be infused, the practical aspects of maintaining intravenous (IV) access presents another unnecessary imposition 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:

●Pain associated with needle insertion

●The need for frequent site changes

●Potential difficulty in locating sites of venous access for patients without central access and those who lose central access

●The need for specific training in surveillance and care

●Potential restrictions on mobility

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.

●Thirst – The correlation between thirst and hydration status in terminally ill patients is modest at best. The sensation of thirst is an insufficiently specific indicator of hydration status in terminally ill patients [13,15]. In addition, there is a lack of high-quality data to ascertain whether IV fluids (or fluids administered via an enteral feeding tube) relieve thirst in patients with advanced disease, such as cancer [15,16]. By contrast, thirst symptoms can be alleviated with simple measures such as stopping medications with anticholinergic side effects and administering good lip and mouth care [9-11,15]. 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 [95].

●Delirium – Although delirium may be a sign of dehydration, it can also be due to other factors, including the accumulation of opioid metabolites and other drugs (due to worsening renal function as one approaches the end of life) [8]. Delirium is one of the most devastating symptoms for dying patients, their loved ones, and health care professionals [96]. Patients with agitated delirium appear to suffer, and even patients who have recovered from delirium and were never agitated remember the experience as very distressing [55,97]. (See "Overview of managing common non-pain symptoms in palliative care", section on 'Delirium'.)

Although dehydration should be a potentially treatable cause of delirium, a large trial evaluating the role of hydration in patients at the end of life did not show that it improved or prevented symptoms, including delirium. (See 'Use of artificial hydration' above.)

●Sedation and drowsiness – Sedation and drowsiness are common in terminally ill patients and may be in part related to accumulation of sedative opioid metabolites, particularly in patients with reduced renal function. In observational studies, hyperosmolarity (suggestive of dehydration) was a significant contributor to somnolence [94]. Parenteral hydration also may potentially increase the excretion of drug metabolites. While several preliminary studies and one small, randomized trial suggest a benefit for hydration in reducing sedation [55,98,99], the most rigorous randomized trial discussed above showed no improvement in symptoms (including sedation) with the administration of IV fluids [53]. There is no evidence that hydration reduces the risk of (or worsening of) fatigue, sedation, myoclonus, or hallucinations [53]. (See 'Use of artificial hydration' above.)

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics topics (see "Patient education: Medical care during advanced illness (The Basics)" and "Patient education: Advance directives (The Basics)")

SUMMARY AND RECOMMENDATIONS

●Context – Medically assisted nutrition and hydration should be considered medical interventions rather than basic provisions of comfort. (See 'Our approach' above.)

●Goals of care discussion – The discussion of stopping nutrition and hydration should start with determination of the goals of care. It should include consideration of the process and likely outcomes of continuing or forgoing nutrition and hydration. (See 'Defining goals of care' above.)

●Our approach to patients at the end of life

•For patients at the end of life, we suggest not providing artificial nutrition (Grade 2C). (See 'Use of artificial nutrition' above.)

•For most patients at the end of life, we suggest not providing artificial hydration, particularly for those with end-stage cancer (Grade 2B). However, decisions regarding artificial hydration should take into account the patient's values and preferences as some patients may find any gain in survival clinically meaningful. (See 'Use of artificial hydration' above.)

●Voluntary cessation – The voluntary cessation of nutrition and hydration is a medically, ethically, and legally acceptable step that patients or their families may choose. (See 'Voluntary cessation of intake' above.)

•Patients who wish to forgo artificial nutrition and hydration at the end of life should be encouraged to complete advance directives that comply with the specific requirements of their state. (See 'Legal and ethical concerns' above.)

•When a patient voluntarily stops eating and drinking or when artificial nutrition and hydration are withdrawn, clinicians should be attentive to comfort. (See 'Practical strategies to prepare for and manage patients who are stopping nutrition and hydration' above.)

●Trial of rehydration – If a patient at the end of life or their loved ones request a trial of rehydration, it should be provided, so long as they recognize that symptoms may not respond to fluids and that hydration is associated with certain risks (eg, peripheral or pulmonary edema). If rehydration becomes burdensome, adverse effects occur, or symptoms do not respond to this trial, rehydration should be discontinued. (See 'Rehydration' above.)