The following is an ABN Literature review as of July, 2010 and should not be interpreted as legal advice on ANH
Artificial nutrition and hydration (ANH) is a medical treatment that supplements or replaces ordinary eating and drinking. ANH allows a person to receive nutrition (food) and hydration (fluids) when they are unable to take them in by mouth. ANH is used for individuals who for some reason cannot eat or drink enough to sustain life. Since ANH is defined as a medical treatment, competent adults may refuse ANH, even if death occurs as a consequence. However, when a patient is judged to be incompetent withholding or withdrawing ANH becomes more controversial.
Artificial Nutrition and Hydration (ANH) is used with individuals unable to ingest fluids and foods for whatever reason. It can include:
- Intravenous administration routes which can deliver enough fluids into the veins to sustain daily requirements for hydration, but cannot deliver substantial nutrition;
- Hypodermoclysis, which is subcutaneous infusions into body tissue of less than a liter of fluid per day;
- Nasogastric tubes, which are placed through the nose into the stomach can provide enough nutrition and fluids to meet a patient’s daily needs and are usually placed during acute episodes of illness; and
- Percutaneous endoscopic gastrostomy (PEG), which is the introduction of a tube through the abdomen directly into the stomach and is used when it is anticipated that patients will not be able to resume oral feedings for many weeks. Less commonly, a jejunostomy tube is introduced through the abodomen into the jejunum of the bowel. Both can provide adequate daily nutrition and fluids.
The effectiveness of ANH depends on the patient’s overall condition and the reason that ANH may be indicated in the first place. ANH can work very well for patients with temporary swallowing or gastrointestinal tract issues and may also benefit individuals with certain chronic disabling conditions. ANH may also prolong life and allow time for accurate assessment of a patient’s chance of recovery in cases where a patient’s prognosis is uncertain. If a patient is dependent upon ANH for adequate nutrition, and that patient enjoys the life they lead, ANH is clearly not only physiologically useful, but qualitatively useful as well. When weighing the benefits of ANH, however, the burdens must also be carefully considered. ANH is often associated with significant complications including: bleeding, infection, and the use of physical restraints to prevent the patient from removing the tubes (Fine 120).
The principles that guide artificial nutrition and hydration decision-making are the same four principles depended upon in many clinical ethics decisions: autonomy, beneficence, nonmalfeasance, and justice. Autonomy, referring to patient’s or authorized surrogate’s right to self-determination, includes the right to make decisions about initiating, withholding, or withdrawing ANH. Beneficence requires that a clinician’s actions must benefit the patient, indicating that it is appropriate to provide ANH if it will help the patient meet clinical and quality of life goals. Nonmalfeasance, the avoidance of harm and the alleviation of pain and suffering, requires that if the harms of ANH outweigh the potential benefits, then ANH should not be initiated or should be withdrawn. Justice refers to the fact that healthcare providers should make decisions in a nondiscriminatory manner, meaning that the decisions about ANH should not be dependent upon factors such as chronological age or economic situation (Geppert, Andrews, & Druyan 80). As always, these principles may come into conflict, generating an ethical dilemma requiring appropriate resolution.
Cases and considerations shaping current laws and policies:
- Karen Ann Quinlan Case (1976): First legal case of removal of life-sustaining therapy (a respirator)
- Barber v Superior Court (1983): This was the first reported case in which it was held that withdrawal of ANH was allowed. The court also stated that physicians are not criminally liable for following the wishes of the surrogates of incompetent patients to discontinue ANH if the patient is unlikely to recover (Geppert, Andrews, & Druyan 82).
- President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983): Found no distinction between artificial nutrition and other life-sustaining medical treatments.
- Baby Doe case and resulting “Baby Doe Directives” (1984): Stated that it should be considered medical neglect to withhold medically indicated nutrition and hydration from handicapped infants and newborns. These directives, aimed at preventing child abuse made some physicians reluctant to ever discontinue ANH in newborns. Since the time of the Baby Doe case, however, the US Supreme Court has said that in most situations the parents have the decision-making prerogative. Ethicists and attorneys have concluded that the emphasis should be on the words “medically indicated” and that ANH is a treatment that may be withheld or withdrawn in certain circumstances (Geppert, Andrews, & Druyan 81; O’Sullivan 877).
- Cruzan v Director, Missouri Department of Health (1990): The Supreme Court ruled that individual states have the right to determine the level and nature of “clear and convincing evidence” necessary in proceedings where a guardian seeks to discontinue ANH for a patient. The court also found that a competent person has the right to refuse ANH, even if they will die as a result. Since this case, ANH has increasingly been considered to constitute medical treatment, and can therefore be accepted or rejected similarly to any other medical treatment. (Geppert, Andrews, & Druyan 82).
- Theresa Schiavo case (2000-2005): In 2000 a judge determined that the Florida standard of verbal clear and convincing evidence was satisfied and that Terri Schiavo met the definition of permanent unconscious; removal of the feeding tube was ordered. Her parents appealed the decision, but the appellate court reaffirmed the original decision and artificial feeding was halted. Her parents then presented physician testimony to a different judge and ANH was resumed. ANH was again stopped in 2003—six days later the FL governor and legislature passed “Terri’s Law” and ANH was resumed. In 2004 the FL Supreme Court issued a decision that Terri’s Law was unconstitutional as a “violation of separations of powers” and the tube feeding was again stopped. Terri died in 2005. In the end the principle of autonomy prevailed in this case, but it demonstrated that the withdrawing of ANH is still an unresolved legal and ethical issue (O’Sullivan 875)
Current Law and Arizona Law
ANH has been established as medical treatment by the courts, and can therefore be declined by competent adults, even if death may result (Ganzini 136). Rulings in the cases of Cruzan and Schiavo established that “ANH can be withdrawn in a PVS patient when the diagnosis is confirmed and the patient requests such removal through either an advanced directive or an authorized surrogate” (Geppert, Andrews, & Druyan 85).
The Schiavo case resulted in a number of state legislatures introducing bills that would require a higher standard of “clear and convincing evidence” to be met before ANH can be withheld or withdrawn (Geppert, Andrews, Druyan 86). The Arizona Revised Statutes section 36-3231 states that, “A surrogate who is not the patient's agent or guardian shall not make decisions to withdraw the artificial administration of food or fluid.” (For more information on Arizona’s legal definition of a surrogate: http://www.azbioethicsnetwork.org/resources/encyclopedia/patient-surrogate-decision-making. This statute does not, however, specify that the authorization of withholding ANH has the same limitations. In addition if a patient is in an irreversible coma or persistent vegetative state and has left no directions behind as to his or her preferences, Arizona law assumes that the patient would prefer ANH, unless “while competent the patient manifested the patient's intent that medically invasive life prolonging treatment, including the artificial administration of food or fluid, not be administered in the case of an irreversible coma or a persistent vegetative state that is irreversible or incurable” (A.R.S. sec. 36-3206).
Informed consent is the “process by which patients who are advised about a medical treatment agree [to] or decline an intervention such as a PEG [percutaneous endoscopic gastrostomy] tube” (Ganzini 136). When patients lack decision-making capacity, for ANH or any other medical intervention, others may decide for them. If the patient named a proxy in a durable power of attorney for healthcare document, that assignment will take precedence. If a surrogate has not been named, the individual state’s surrogate decision-making hierarchy should be followed. However, “in some states the role of withholding or withdrawing life-sustaining treatments, especially ANH, must be specifically assigned by the courts” (Ganzini 136). (Information regarding Arizona’s surrogate consent statute may be found at http://www.azbioethicsnetwork.org/resources/encyclopedia/patient-surrogate-decision-making
“The patient’s ethical and legal right to self-determination as guaranteed by the informed consent doctrine is not absolute. The state, or other institutions, may exert powers to limit the right of personal liberty on the basis of several concepts: preservation of life, prevention of suicide, protection of innocent third parties, especially children, and protection of the ethical integrity of the health professional” (O’Sullivan 876).
Withholding vs. Withdrawing
There is no ethical or legal difference between withholding and withdrawing treatment. If the net burden from ANH is found to be greater than the net benefit or if ANH is no longer meeting the intended goals, then treatment should be withdrawn with consent of the patient or legal surrogate. If a patient or legal surrogate withdraws consent for the treatment, it is appropriate to stop the intervention (Geppert, Andrews, & Druyan 82).
In the case of vague diagnoses or prognoses, it may be helpful to implement a time trial for the intervention in question. The goals of the patient or surrogate can be defined, a time limit can be agreed upon, and a trial of treatment performed. At the conclusion of the trial time, the efficacy of the intervention should be evaluated and it should be discontinued if it is not proven beneficial (Geppert, Andrews, & Druyan 82; Monturo 211).
Despite widespread agreement on the issue, many clinicians feel that withdrawing treatment feels different to them than withholding treatment. Not starting a treatment in the first place may be perceived as allowing a natural death, while withdrawing a life-sustaining treatment, such as a PEG tube may feel like “killing” the patient. This attitude can be detrimental for patients and may represent a barrier to a potentially beneficial trial of ANH if clinicians fear that they cannot withdraw ANH once it has been initiated (Ganzini 137).
Specific Medical Conditions
Guidance on Persistent Vegetative State (PVS)
American Academy of Neurology Definition of PVS: “A form of eyes-open permanent unconsciousness in which the patient has periods of wakefulness and physiologic sleep/wake cycles, but at no time is the patient aware of himself or his environment. Neurologically, being awake, but unaware is the result of a functioning brainstem, and the total loss of cerebral cortical functioning. This loss of function also renders the patient unable to feel pain or suffer consciously” (Bacon, Williams, Gordon 1098).
“The AAN recommends referring to the patient’s state as a ‘permanent state of unresponsiveness’, if there are certain temporal and neurological criteria. The AAN proposes the designation ‘minimally responsive or conscious state’ to denote patients in whom there is some residual cognitive function. These distinctions have important implications for ANH, as the ethical standard for withholding or withdrawing ANH may be higher than for patients with the worse prognosis of confirmed PVS than in the minimally conscious state” (Geppert, Andrews, & Druyan 86).
ANH can definitely be life-prolonging for patients in a PVS, and it is prudent to provide ANH when the diagnosis is uncertain (Geppert, Andrews, & Druyan 86).
Use of ANH in Advanced Dementia
In advanced dementia patients frequently experience difficulty swallowing, aspiration when swallowing, inability to self-feed, resistance to feeding, and inappropriate responses to hunger. This frequently leads to malnutrition, with tube feeding (usually PEG) initiated with the goal of improving nutritional status, preventing or healing pressure ulcers, and preventing aspiration pneumonia. At times, healthcare facilities may suggest PEG placement to meet their needs rather than those of the patient since hand-feeding a dementia patient takes more time and staff interaction than tube feeding. Additionally, nursing facilities receive higher reimbursement rates for tube-fed patients than hand-fed patients.
Research suggests using PEG feeding to improve nutritional status does not alter the course of pressure sore development or healing and does not reduce the risk of pneumonia in patients with dementia. Short term mortality following the insertion of a PEG tube is high, ranging from 4%-54%. Overall, PEG feeding has no proven long-term benefit in these patients (Geppert, Andrews, & Druyan 85).
For the highest quality of life, it is recommended that patients with advanced dementia be kept in the least restrictive environment possible. Effort should be made to remove dietary restrictions and provide hand-feeding, as this is one of the pleasures available to these patients. If it is determined that it would be justified to place a feeding tube, specific and limited goals should be set. If these goals are not being met, withdrawal of the tube should occur (O’Sullivan 877).
ANH and Terminal Illness
Patients imminently dying of a terminal illness often experience decreased appetite and may be unable to eat. It is commonly believed that death by dehydration/malnutrition causes unnecessary suffering for the patient, so ANH may be routinely used. However, those who have experience caring for the dying provide testimony that death with dehydration is palliative rather than punitive. Decreased intake of food and fluids results in symptom amelioration such as relief from choking and drowning sensations, less need for catheterization, fewer bouts of vomiting and diarrhea, and decreased edema. Patients with advanced dementia who are on ANH often have to be placed in restraints in order to keep the tubes in place, which can be uncomfortable. The majority of dying patients reportedly do not experience hunger or thirst. The main adverse effect of dehydration is dry mouth, which is easily handled with good mouth care. Also, there is no evidence that medically assisted hydration at the end of life prolongs survival. The metabolic changes which take place with dehydration have a sedative effect, allowing the patient to become sleepy before death. “From an ethical perspective, it is humane to allow death to proceed in the absence or cessation of the provision of ANH in terminal patients” (Geppert, Andrews, & Druyan 84).
Cultural and Religious Considerations
The controversy that continues to surround feeding tubes may be attributable, at least in part, to the symbolism and meaning that surrounds ideas of food and feeding for humans. While the predominant medical view is that feeding tubes are medical interventions, similar to other life-saving treatments such as mechanical ventilators, others may view feeding tubes as basic humane care. While it may be medically appropriate to withdraw ANH that has proven to be unbeneficial, an emotional interpretation of this action is that it is “starving” someone. From a disability rights perspective, the feeding tube may be seen simply as an accommodation to disability, and the withdrawal of a feeding tube could be viewed as a violation of the patient’s civil rights. Having an appreciation and understanding of the wide range of perspectives concerning feeding tube may help clinicians communicate more productively with patients and families (Brashler, Savage, Mukherjee, and Kirschner 75-76).
There are some religions in which the belief system calls for rejection of the practice of withdrawing artificial nutrition in certain circumstances. These include Catholics, Greek Orthodox, Muslims, and Orthodox Jews. It is important to be aware of the position of major religious groups regarding ANH, but it is also essential to remember that no group is homogeneous and individual beliefs may vary even within a religion (Geppert, Andrews, & Druyan 80; Monturo 207).
Decisions about ANH require careful deliberation between healthcare providers and the patient or surrogate. The patient or surrogate needs to be given sufficient information about ANH to be able to make a truly informed decision. The goals of ANH need to be defined and agreed upon (Geppert, Andrews, & Druyan 83).
Casarett, Kapo, and Caplan recommend that physicians emphasize three key points when discussing ANH with patients or surrogates (2608):
- ANH is not a basic intervention that can be administered by anyone. It is a medical therapy administered for a medical indication.
- Unlike the provision of food or other forms of comfort, the procedures required for ANH are associated with uncertain benefits and considerable risks and discomfort.
- The goal of ANH is not to increase the patient’s comfort. If a patient receives high-quality palliative care, symptoms of hunger and thirst generally resolve in a short time or can be managed effectively without ANH.
If the physician, patient or family, or institution supporting the care are unable to come to an agreement, and the physician is unable to support the decision that the patient or family makes, the physician should consider transferring the patient’s care to another physician or institution. Hospitals and healthcare facilities should support physicians in doing so (Casarett, Kapo, and Caplan 2608). Wherever possible, clinicians and others should avail themselves of opportunities for ethics consultation and conflict management.
In the 2010 publication of Oral Feeding Difficulties and Dilemmas, the Royal College of Physicians gives the following recommendations:
- A multidisciplinary nutrition support team of healthcare professionals, ideally but not inevitably led by a doctor with special expertise in nutrition, should be available to work with patients and their families when oral feeding difficulties occur. A member of theteam should be available by telephone at weekends as well to provide advice.
- Such teams should be collaborative in nature and not be made up of independent professionals who are focused only on their area. The patient should be at the centre of their efforts.
- The first question should be ‘what are we trying to achieve’?
- Oral intake, modified as necessary, should be the main aim of treatment. Nutrient-dense foods or special provision of food (in hospital the ‘red tray’ system) is helpful.
- Even when tube feeding is necessary, this should be additional whenever possible. At the end of life, even if deemed to have an ‘unsafe swallow’ a risk management approach may offer the patient the best quality of life. If in doubt, a trial of nasogastric feeding with clearly agreed objectives may be appropriate. Tube feeding should then be withdrawn if failing to achieve the objectives. ‘Nil by mouth’ should be a last resort, not the initial default option.
- When artificial nutrition and hydration are required for the medium term or longer, this should be managed by the multidisciplinary team together with other health professionals, the patients themselves and their family/carers, at home if possible. The setting may be a care home if the patient has other medical problems.
- All trusts and care homes should ensure there are sufficient staff, especially at mealtimes, to assist and feed those patients who require a long time to eat an adequate meal.
- The full facts of the situation should be understood by all involved to enable a patient-centered decision about artificial nutrition and hydration and the means of delivery. This should never be based on the convenience of the staff or carers or be required as a criterion for admission by any institution. We believe that to be unethical and bad practice.
Policy and Law
Casarett, Kapo, and Caplan give 5 recommendations to help ensure that patients and their families retain the right to make decisions about ANH and that these decisions are supported at the bedside by healthcare providers, the law, and the healthcare system (2610):
- The typical informed consent process for ANH is inadequate—clinicians need to be better able to engage patients and families in meaningful discussions. Healthcare providers should receive better education to prepare them for these discussions. Reimbursement will need to be increased proportionally because these discussions can be time-consuming.
- Decision making about ANH in nursing homes should be shielded from financial and regulatory pressures. Nursing homes should not be reimbursed at higher rates for residents receiving ANH and nursing homes shouldn’t be cited when a patient loses weight after a decision to forgo ANH.
- State laws should allow the same standard of evidence of a patient’s preferences for decisions about ANH as they do for other decisions.
- Patients should complete advance directives and include ANH preferences with attorneys, physicians, and other healthcare providers encouraging and helping patients to do so.
- Healthcare facilities should ensure that preferences are respected in all healthcare settings. Information should be transferred between institutions.
American Academy of Neurology Position Statement:
“The AAN opposes all state and federal legislation that would presume to prescribe a patient’s preferences for artificial hydration and nutrition. The AAN further opposes all state and federal legislation that limits the ability of patients to declare their preferences for health care through the use of living wills and advance directives or by discussion of their wishes with their families or surrogate decision makers. The AAN opposes all state and federal legislation that gives legal standing to elected officials (or their designees) to intercede in private decisions regarding the use of ANH. The AAN opposes all state and federal legislation that expands judicial intervention in a patient’s decisions regarding the use of ANH. The AAN supports state and federal legislation that promotes a better understanding of patient preferences for medical care (including the development of advance directives, living wills, and durable power of attorney declarations; the creation of health care directive registries; and the indication of such information on official identification cards) in accordance with existing AAN policies. The AAN is committed to providing its members access to educational resources so that they can competently and sensitively discuss decisions regarding the provision of ANH with patients who are writing an advance directive, and with families or surrogate decision makers who are contemplating such decisions on behalf of patients” (Bacon, Williams, & Gordon 1099).
The above recommendations, along with the position statements of healthcare professional organizations, deliberations of presidential ethics committees, guidelines from ethics institutes such as the Hastings Center, and state law can provide direction to organizations on how to develop ANH policies (Geppert, Andrews, & Druyan 86).