American Journal of Law & Medicine

Barriers to forgoing nutrition and hydration in nursing homes.

In the two decades since the Karen Quinlan case(1) first brought the issues that now go under the heading of the "right to die" to the attention of the courts and the public, a well-accepted legal consensus has developed about the law governing the forgoing of life-sustaining medical treatment.(2) Law and clinical medical practice do not always run in tandem, however, and what law prescribes does not always occur in practice.3 One aspect of the legal consensus--that artificial nutrition and hydration is a medical treatment and thus may be withheld or withdrawn according to the same procedures and standards as other life-sustaining medical treatments--is probably less well accepted than the remainder. For reasons that I will explain, this is understandable. But what is puzzling is that this element of the consensus seems to be even less well accepted in nursing homes than in acute-care hospitals.


The commentary on the ethical and legal considerations in forgoing(4) life-sustaining treatment in general, and feeding tubes,(5) in particular is extensive, so much so that I will refrain from including at this point the ordinarily obligatory footnote citing all the literature. One of the cornerstones of the consensus about forgoing life-sustaining treatment is that feeding tubes are a medical procedure, and '"in general, their use or discontinuation should be governed by the same principles and practices that govern other forms of medical treatment.'"(6) When competent patients7 decide that they no longer wish to be kept alive by tube-feeding, it is legally permissible for feeding to be withheld or withdrawn,(8) and liability may be imposed if the patient's wishes are ignored.(9) When the same decision is made by the surrogate of a patient who no longer possesses decisionmaking capacity, and when the appropriate standard for decisionmaking(10) is satisfied, tube-feeding may also be withheld or withdrawn.(11)

The fact that artificial nutrition and hydration constitutes a medical procedure is well accepted in law does not mean, however, that it is well accepted in practice. Although studies suggest that large numbers of people die in hospital when treatment is limited or forgone altogether,(12) there is also evidence that health care professionals are reluctant to allow patients to die from the limitation of treatment, even when it is legally permissible to do so.(13) This is often the case with feeding tubes, probably because of "the 'emotional symbolism' of food."(14) When other kinds of life-sustaining treatment are forgone, it is usually said that the cause of death is not the termination of treatment but the patient's underlying illness or injury, or that the patient died a natural death,(15) an explanation which is more successful as an example of sanitizing language than as an example of logic.

When a ventilator or dialysis is withheld or withdrawn, it is easier to persuade oneself (though successful persuasion is by no means guaranteed) that the patient has died from the underlying disease process rather than from the removal of treatment. Although the same explanation can be given when artificial nutrition and hydration is terminated,(16) it is intuitively more difficult to accept. It is more difficult to obscure the fact that the patient has died from lack of nutrition and hydration,(17) or to put it less politely, that the patient has starved to death.(18) The response is sometimes given that it is still the disease which ends the patient's life because it is the disease that prevents the patient from obtaining nutrition and hydration, just as it is the terminal condition that prevents a ventilator-dependent patient from breathing without assistance.(19)

My impression is that the discomfort about the termination of tube-feeding generally runs deeper among health care professionals when the patient is in a nursing home (or as nursing homes are formally known, "long-term care facilities") than when the patient is in a hospital.(20) I phrase this as an "impression" because I cannot substantiate this in the way that social scientists usually do or would like to--namely, by reference to well-designed and conducted empirical studies.(21) Simply comparing the numbers of appellate cases about forgoing artificial nutrition and hydration arising in hospitals and nursing homes is not a good guide. Although there are a number of such cases in which surrogates of incompetent patients had to resort to the courts to have tube-feeding withheld or withdrawn because of a nursing home's refusal to honor such a request,(22) or possibly because of uncertainty about whether a judicially appointed guardian(23) or a common law surrogate(24) had the authority to terminate any life-sustaining treatment, there are a larger number of cases in which the same resistance has been encountered in hospitals. Even if the number of nursing home cases were larger than the number of hospital cases, this would not establish that the reluctance to forgo tube-feeding was greater in nursing homes than in hospitals; any number of other factors might explain the differential numbers.(25)

Although rigorous evidence is lacking, my discussions with lawyers, nursing home administrators, health care professionals, and especially with families of nursing home residents, make it clear that my impression is not idiosyncratic. What these people tell me is that it is devilishly difficult, if not impossible, to have tube-feeding withheld or withdrawn from a nursing home resident who is no longer able to be fed by mouth. Nursing homes will not admit people who are unable to be fed by mouth unless a feeding tube is first inserted; they will transfer a resident to a hospital to have a feeding tube put in if the patient stops eating by mouth. If a resident's family protests the implantation of a feeding tube, the nursing home will threaten to report the family for abuse to the appropriate governmental agency, threaten to discharge the resident, or simply have the feeding tube inserted despite the objections. Even the existence of a clear advance directive will not always prevent these actions.

Of course, I have also heard stories about patients in hospitals whose wishes, expressed personally or through their families, to have treatment forgone (and not just feeding tubes) either have met with resistance or have been simply ignored. But there is something about the telling of these stories that makes me believe that, as a general rule, however hard it is to have life-sustaining medical treatment withheld or withdrawn in a hospital, it is many times more difficult in a nursing home, and especially so when that treatment is a feeding tube.(26)

In this Article, I first examine the source of the reluctance of long-term care facilities to permit the forgoing of tube-feeding. I then turn to the federal and state statutory and regulatory provisions relevant to the forgoing of life-sustaining medical treatment, including artificial nutrition and hydration. Next I review the consensus that has developed in state case law and statutory law--and that is reflected in the federal long-term care regulations--concerning the forgoing of artificial nutrition and hydration as well as similar provisions of advance directive statutes. Finally, I consider the case law specifically addressing the application of the legal consensus to the nursing home setting and the relationship between the case law and the statutory and regulatory provisions regulating nutrition and hydration and abuse and neglect in long-term care facilities.

My conclusion is that the forgoing of artificial nutrition and hydration in long-term care facilities is governed by the same substantive principles of law as in other health care settings(27) and that the heightened reluctance to forgo artificial nutrition and hydration procedures in long-term care facilities has no basis in law. Thus, when nursing home administrators and their employees, or the physicians who abide by the nursing home's policies, refuse to permit the forgoing of artificial nutrition and hydration, they unlawfully restrict the right of competent nursing home residents to refuse treatment and the well-accepted right of incompetent residents to have their surrogates decline treatment on their behalf.(28) Long-term care facilities should adopt policies that recognize the legal right to forgo artificial nutrition and hydration, and they should make these policies available to residents, their surrogates, and their families pursuant to their obligations under the federal Patient Self-Determination Act (PSDA).(29)


If my hypothesis is true that it is more difficult to have tube-feeding stopped (or not started) in a nursing home than in a hospital, then why? The reason most frequently mentioned in cases involving the termination of tube-feeding in nursing homes for not honoring a request is conscience--sometimes the conscience of those caring for the patient (e.g., doctors, nurses, nursing assistants, nutritionists) and sometimes the conscience of the nursing home management.(30) As one nursing home physician explained to me, those caring for the patient "feel like they are killing someone in these situation [sic]."(31) While this might explain the reluctance to permit the forgoing of artificial nutrition and hydration in nursing homes, it does not explain what I believe to be the greater reluctance to do so in nursing homes than in hospitals.

It is possible that conscience does play a more significant role in nursing homes than in hospitals because there is a greater opportunity for health care professionals to get to know the patients.(32) For many nursing home residents, the emphasis is as much on "home" as it is on "nursing"; they have lived there for a considerable time, and they will remain there until they die. This may explain why many nursing home employees view it as their duty to see to it not only that nursing home residents have enough to eat but also that they in fact receive adequate nutrition and hydration.33 Less sophisticated nursing home personnel who give the most direct care to residents may be especially prone to such a belief.(34)

There are other explanations for the difficulty of forgoing tube-feeding in nursing homes, including a general uncertainty about whether the law permits it,(35) more explicit fears about civil and/or criminal liability,(36) and fears about harm to the reputation of the institution.(37) However, most if not all of these reasons apply equally in hospitals, and thus do not explain the enhanced difficulty in having tube-feeding withheld or withdrawn in nursing homes.

Another possible reason, though never mentioned in appellate opinions, is the level of reimbursement that a nursing home receives for providing tube-feeding to a resident. This payment factor might play a greater role in nursing homes than in hospitals. Unlike hospitals, most nursing homes are for-profit businesses,(38) and "money is surely a powerful persuader in an industry dominated by investor-owned corporations and small profit-making businesses . . . ."(39) The reluctance to permit the forgoing of tube-feeding might be economic in origin if nursing homes receive a higher level of reimbursement for providing it. In fact the reimbursement rate for providing tube-feeding depends on several factors including whether there is third-party payment, the type of third-party payment, and the formula used for reimbursement of the long-term care facility by the state Medicaid program.(40) Although there may be a financial incentive to provide tube-feeding in some cases,(41) there may be a financial disincentive in others.(42)

A related consideration is that many nursing home residents have difficulty eating and therefore must be fed. This can take a great deal of time and increase staffing costs for the nursing home without any increase in reimbursement. Consequently, there is a strong incentive for nursing home managers(43) to favor tube-feeding of residents who cannot feed themselves or who cannot adequately do so.(44)

Finally, physicians play a far less central role in the operation of many, if not most, nursing homes than they do in hospitals.(45) If it is true, as some assert,(46) that physicians generally are not opposed in principle to forgoing tube-feeding if legal standards and procedures are followed, and more willing to do so than nurses and nurses aides,(47) this may help to explain the differential willingness to allow the forgoing of tube-feeding in hospitals in comparison with nursing homes.(48)

As plausible as all of these explanations are, they do not seem complete. When I reflect on the discussions that I have had with knowledgeable lawyers, nursing home administrators, and health care professionals, a factor that is unique to nursing homes stands out. Nursing homes, unlike hospitals, are subject to a special set of federal regulations (adopted under the authority of the federal Medicaid statute)(49) which are often supplemented by state statutes and regulations,(50) and which are implemented by state regulatory authorities. These regulations, the tragic history of abuses of nursing home residents which prompted their adoption, and the severe consequences that can ensue from a citation for their violation(51) are, I have come to believe, the predominant factor responsible for the difficulty in terminating any kind of life-sustaining medical treatment in a nursing home, and feeding tubes in particular, without recourse to litigation.(52) This factor is sometimes mentioned in reported cases as a reason why a clinical case has been no more so than the other factors that motivate litigation(54) and usually in combination with one or more of these other factors. Nursing home personnel might not even realize the role that these regulatory concerns play in their decision not to permit the forgoing of tube-feeding. Rather, they probably dig in their heels out of a more generalized fear of legal sanctions and bad publicity.

The next section examines the combined federal and state nursing home regulatory process in an attempt to determine the reason for the enhanced difficulty in having tube-feeding terminated in a nursing home.


There are several provisions of federal and state law that form the basis for the belief that the withholding or withdrawal of artificial nutrition and hydration from residents of long-term care facilities is impermissible, or at the least, is governed by law different from that which is applicable in hospitals.(55) The primary basis for this belief is Medicare and Medicaid legislation and regulation, particularly the program participation requirements for long-term care facilities. Various provisions of the federal Older Americans Act(56) and related state statutes, as well as other state legislation, play a supporting role.(57) Although these statutes and regulations are an important source of the conclusion that the forgoing of tube-feeding in nursing homes is not permitted, other provisions of the federal nursing home regulations (discussed below in part IV.C.) clearly support the opposite conclusion.


In order to be reimbursed for the costs of caring for Medicare and [T]he home's administrator testified that Manor House was taking no position on the parents' petition, and that the home would comply with the decision of the court. Throughout the proceeding, however, Manor House made clear its concern that the home remained subject to state and federal regulation and sanction regardless of the decision of Sue Ann's family and doctors. Id. at 36; DeGrella v. Eiston, 858 S.W.2d 698 (Ky. 1993). This case is not in court because there is a dispute between thMedicaid recipients,(58) the long-term care facility must be a certified Medicare/Medicaid provider. To be a certified provider, long-term care facilities must comply with "conditions of participation" in the Medicare and Medicaid programs set forth by the federal Health Care Financing Administration (HCFA).(59) A single set of conditions applies for participation in both programs. In addition, many of the federal requirements are reiterated in state statutes and regulations,(60) some of which contain additional requirements.(61)

The conditions of participation establish dietary standards that require long-term care facilities to provide adequate nutrition and hydration to residents.(62) The federal statute goveming grants to states for Medicaid programs mandates that "a nursing facility must provide (or arrange for the provision of) . . . dietary services that assure that the meals meet daily nutritional and special dietary needs of each resident."(63) This statute is implemented by the following regulatory provisions:

(i) Nutrition. Based on a resident's comprehensive assessment, the facility must ensure that a resident . . . [m]aintains acceptable parameters of nutritional status, such as body weight and protein levels, unless the resident's clinical condition demonstrates that this is not possible ....

(j) Hydration. The facility must provide each resident with sufficient fluid intake to maintain proper hydration and health.(64)

These provisions impose an obligation on long-term care facilities to "provide" adequate nutrition and hydration to patients, thus creating a right to have adequate artificial nutrition and hydration. What was intended to be a resident's right (to have a healthful diet), however, has unwittingly been transformed into an obligation to accept nutrition and hydration. A decision of a competent resident or surrogate to forgo tube-feeding constitutes a waiver of the right to be provided with adequate nutrition and hydration. However, nursing home surveyors and nursing home managers are ignorant of or choose to ignore the fact that competent residents may waive rights, and that in almost all jurisdictions surrogates may waive rights on behalf of incompetent residents.(65)

1. Background to the Legislation and Regulation

The purpose of these statutory and regulatory provisions is not hard to imagine, especially in light of the tragic and not-so-distant history of the abuse and neglect of nursing home residents. Reports of abuse and neglect of nursing home residents were widespread in the 1960s and 1970s. A 1974 United States Senate subcommittee report noted that

In many cases [nursing home residents] have not even received humane treatment. And in an alarming number of known cases, they have actually encountered abuse and physical danger . . . . [S]ubcommittee transcripts are replete with examples of cruelty, negligence, danger from fires, food poisoning, virulent infections, lack of human dignity, callousness and unnecessary regimentation, and kickbacks to nursing home operators from suppliers. The net impact is that far too many patients have needlessly sustained injury and, in some cases, death.(66)

The fear of under-fed or even starving nursing home residents is not, unfortunately, a fanciful one. The Senate subcommittee investigating nursing homes in 1974 reported that it received complaints of substandard food that ran "the gamut from watery soup and small portions, all the way to charges that unwholesome food was served," and that "the uneaten portion of meals was being scraped off one patient's tray and put on a new plate for a second person; that some meals consisted of one-half slice of bread, a little squash and coffee ... "(67) "[O]ne [nursing home) administrator spent 54 cents per patient per day for food while jails in the Chicago area spent 64 cents a day."(68) Although the Senate hearings and resultant legislation and regulations have done much to improve conditions in long-term care facilities, reports of serious neglect(69) and abuse,(70) including inadequate food for residents, still occur.(71) However, the standards for adequate nutrition and hydration included in the Medicare/medicaid conditions of participation were formulated to prevent practices such as these rather than to affect residents' rights to refuse treatment.

2. The Enforcement Process: State Medicaid "Surveys"

The federal Medicare/Medicaid standards are enforced by state Medicaid programs in a process known as a Medicaid survey; the state employees who conduct these surveys are referred to as Medicaid "surveyors."(72) The Medicaid surveys are conducted annually,(73) using federally prescribed forms.(74) In the initial survey of a nursing home, as part of the assessment of dietary services, surveyors are required to examine whether "[t]he facility provides a hygienic dietetic service that meets the daily nutritional needs of patients, ensures that special dietary needs are met, and provides palatable and attractive meals."(75)

Part B of the survey is used for surveys after the initial one, on a sample(76) of residents in each long-term care facility. In the section on Nursing Services, Part B inquires about the nursing staff s awareness of residents' needs for nutrition and hydration. Specifically, part B asks whether "[t]he facility has an awareness of the nutritional needs and fluid intake of residents and provides prompt assistance where necessary in feeding residents"(77) and whether "[e]ach resident is provided with the amount of food and fluid on a daily basis necessary to maintain their minimum average weight."(78)

A portion of Part B is designed to be filled out for each resident in the survey sample. The surveyor is to "[o]bserve each resident in [the] sample to identify ADL [activities of daily living] needs and potential problems [and c]heck appropriate blocks."(79) One of the categories on this form is "Tube Feeding." The surveyor is required to check a list of items, one of which asks whether the tube-feeding is nutritionally adequate."(80) Surveyors must report violations of the regulations, such as inadequate nutrition and hydration, to the state office of ombudsman.(81) The results of the surveys are public information.(82)

Although difficult to document, there is little doubt among those familiar with the operation of long-term care facilities that administrators of even the best-run nursing homes live in fear of Medicaid surveys which are supposed to be conducted without prior notice.(83) Administrators fear that surveyors will cite them for infractions of regulations which, if sufficient in number or severity, will lead to the loss of their Medicaid certification, and consequently, the loss of Medicare and Medicaid reimbursement. This might mean that the nursing home will be shut down unless or until the deficiencies are corrected.(84) Lesser sanctions include fines and probibitions on admitting new residents until deficiencies are corrected.(85) Although some states have receivership programs that allow nursing homes to continue to operate so that residents are not suddenly without a place to live and be cared for,86 the result for the nursing home owner can be the same because of the loss of financial control of the facility and negative publicity.

Citations for infractions of nutrition and hydration standards are not formally any more serious than a violation of any other standard. But as a practical matter, surveyors are likely to take evidence of inadequate nourishment of residents very seriously, especially if it is widespread, systematic, or seemingly motivated by the desire of the nursing home administration to economize by providing residents with inadequate food.(87)

The net effect is that nursing home administrators have a substantial incentive to bend over backwards to satisfy regulatory standards.(88) Of course, this is precisely what the standards are intended to achieve. Because nursing home administrators are especially concerned about being cited for infractions of regulations requiring the provision of adequate nutrition and hydration if a resident is undernourished, there is a strong incentive to see that residents are adequately fed. It is easy to imagine a nursing home administrator saying, "How can I be faulted for feeding someone?" It is equally simple to imagine the same administrator thinking how he would be vilified in administrative and judicial proceedings and possibly in the press by "allowing someone to starve to death." The unintended but very real consequence is that tube-feeding becomes very difficult to forgo even when such a decision is a lawful one.(89)


Another source of the belief that artificial nutrition and hydration procedures cannot be withheld or withdrawn from residents in long-term care facilities is state legislation and regulations intended to protect the elderly from abuse and neglect. An important impetus for the adoption of these statutes is the contingent availability of federal funding under the Older Americans Act.(90)

The primary purpose of the Older Americans Act is to make social and health services available to the elderly in their communities and homes.(91) In order to be eligible for federal funds under the Act, states must develop a plan for providing these services. One of the requirements is the establishment and operation of an "Office of the State Long-term Care Ombudsman."(92) Unlike the Medicare and Medicaid statutes, the Older Americans Act applies only incidentally to long-term care facilities; however, the duties of the ombudsman's office include the investigation and resolution of complaints by or on behalf of older individuals who are residents of long-term care facilities,(93) including complaints about the abuse of residents. Although the Act does not specifically state that the failure to provide nutrition and hydration constitutes abuse, the Act's definition of abuse--"the willful ... infliction of injury ... or deprivation by a person, including a caregiver, of goods or services that are necessary to avoid physical harm, mental anguish, or mental illness"(94)--is broad enough to encompass the failure to provide adequate nutrition and hydration.

Thus, at least in the case of elderly nursing home residents, the ombudsman mechanism of the Older Americans Act provides another incentive for nursing homes to refuse to forgo tube-feeding even in the face of otherwise lawful requests from competent residents or the families of incompetent residents to terminate feedings. An investigation by an ombudsman for abuse--a term with automatically negative connotations--can lead to extremely bad publicity for the nursing home. For example, in New Jersey, in the wake of a series of state supreme court cases permitting the forgoing of artificial nutrition and hydration(95) and prescribing the ombudsman's role in making decisions in individual cases, there were headline articles in the state's newspapers for more than a year about the ombudsman's investigatory process.(96) While the articles were often critical of the practices of the ombudsman's office, some also reported information that could do nothing but contribute to the public's fears about the conditions and practices in specific nursing homes or nursing homes in general. Regardless of the content of these particular articles, the juxtaposition of the terms abuse and nursing homes is almost certain to have this effect.

In addition, many states have enacted statutory protections of the rights of nursing home residents.(97) Some of the provisions of these statutes parallel federal law in protecting patients against abuse.(98) Other state statutes, or pursuant regulations, contain specific provisions requiring the provision of adequate nutrition and hydration.(99) At the same time, state legislation and/or regulation usually contain provisions acknowledging a patient's right to refuse treatment.(100)

On balance, the Older Americans Act and state statutes and regulations for the protection of the elderly tend strongly to bias nursing home administrators--and possibly physicians, nurses, and other health care personnel working in nursing homes--toward not permitting the forgoing of nutrition and hydration. However, these statutes and regulations are only a piece of the entire story. Other state statutory and regulatory provisions applicable to nursing homes recognize the right to refuse treatment, and they ought to work against that bias. However, these latter provisions rarely if ever mention specifically the refusal of nutrition and hydration. Consequently, nursing home personnel are faced with a clear mandate to feed patients and an amorphous right of residents to refuse "treatment," which the nursing home personnel might not even assume includes a feeding tube. Any uncertainty that feeding tubes are treatment and that there is a robust right to refuse them is dispelled by state case law, with some, though less clear, support from state advance directive statutes, as discussed in Part IV.


A widely accepted legal consensus has developed over the past two decades that competent patients have a virtually absolute right to refuse medical treatment and that the surrogates of incompetent patients may decline treatment on the incompetant patients' behalf.(101) More recently, it has become increasingly certain that an important part of this consensus is that the forgoing of tube-feeding is to be treated the same as the forgoing of any other medical treatment. The consensus--about both forgoing life-sustaining medical treatment in general and artificial nutrition and hydration in particular--first developed in the courts (discussed in Part IV. …

Log in to your account to read this article – and millions more.