The nursing home patients- bill of rights now found in federal Medicare and Medicaid regulations reflects public concern that the personal liberties of institutionalized elderly are often denied. The regulations provide for enforcement by: first, the nursing home administrator; and second, the governmental certification process. In addition, courts are beginning to permit enforcement litigation by nursing home residents; however, this remedy is not generally available. The solution proposed is a citation system of monetary penalties for violations of patients rights.
Nursing Home Patients' Rights
Are They Enforceable?1
Sally Hart Wilson, JD2
'Presented at the Annual Meeting of Gerontological Society Nov., 1977, San Francisco. 'Staff Attorney, National Senior Citizens Law Center, 1709 W. 8 St., Los Angeles, 90017.
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promulgated regulations establishing a set of patients' rights applicable to residents of all skilled nursing facilities that participate in the Medicare or Medicaid programs (42 C.F.R. 405.1121 (k) and (I), formerly 20 C.F.R. 405.1121(k) and (I)). This was followed by a roughly parallel set of rights applicable to intermediate care facilities (42 C.F.R.- 449.12 and 449.13, formerly 45 C.F.R. 249.12 and 249.13, March 29, 1976). Now that the passage of time has permitted the smoke to clear somewhat, we can examine the federal patients' bill of rights to see how effective it has proved to be and to make suggestions for improvement. Substantive Rights Contained in the
Federal Patients' Rights Regulations The rights set forth in the federal patients' rights regulations all relate directly or indirectly to the individual liberties and dignities of nursing home patients, rather than to the quality of health and personal care provided to them, which is generally dealt with elsewhere in the regulations. The specific areas of nursing home conduct covered in the patients' rights are those in which nursing home residents have experienced actual abuse in the past. Although the language of the patients' rights regulations has been criticized for being vague as to meaning, we are aided in understanding it by Interpretive Guidelines issued by HEW and by court decisions (few, to date) applying the regulations in specific situations. In the following pages, the skilled nursing facility regulations will be examined section by section (with a footnoted comparison to the intermediate care facility regulations), to obtain the clearest possible sense of their meaning.
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The deprivation of personal rights and I iberties is listed alongside poor medical care as a major "abuse" of patients by those who have studied and written about nursing home conditions in this country. Of course, conflicts between the individual's needf for freedom and the group's need for conformity are inherent in institutional living situations. And certainly, the imitation by long-term care institutions of the hospital treatment model, with its traditional authoritarianism (which may or may not be justified by the short-term stay and critical illness characteristics of the hospital patient population) has contributed to unnecessarily restrictive policies. However, we know that the psychological and ultimately physical effects of losing the dignity protected by personal freedoms are devastating, so that considerations of good health care as well as simple justice demand that steps be taken to protect the personal rights of elderly long-term care patients. In the early 1970s the development of "Patients' Bills of Rights" was seen by many as a solution to this problem. Consumer groups created ever longer and more lovingly detailed lists of "rights" which they felt should belong to all nursing home patients. Some of these lists were placed in bills before state and federal legislatures, and a number of states have enacted these bills into law. Most significantly, in 1974, the Department of Health, Education, and Welfare, without specific statutory instruction,
42 C.F.R. Section 405.1121, Condition of Participation — Governing Body. (k) Standard: Patients rights. The governing body of the facility establishes written policies regarding rights and responsibilities of patients and, through the administrator, is responsible for development of, and adherence to, procedures implementing such policies. These policies and procedures are made available to patients, to any guardians, next of kin, sponsoring agency(ies), or representative payees selected pursuant to Section 205(j) of the Social Security Act and subpart (q) of part 404 of this chapter, and to the public. The staff of the facility is trained and involved in the implementation of these policies and procedures.
These patients' rights, policies and procedures ensure that, at least each patient admitted to the facility: (1) Is fully informed as evidenced by the patient's written acknowledgment, prior to or at the time of admission and during stay, of these rights and of all rules and regulations governing patient conduct and responsibilities;3 The interpretive guidelines pertaining to this "right" explain that any special communication problems of individual patients must be dealt with in conversing with them about mutual expectations regarding rights and responsibilities. Thus, translation must be made for the non-English speaking and braille or a recording provided for the blind. Quite disappointing is the Guidelines' dilution of the requirement in the regulations that this discussion of rights be held before or at the time of admission, to a possible 5 work days after 'Essentially the same for ICF patients, 449.12(a)(1)(ii)(B)(1), with addition of provision for third party witness in the case of a mentally retarded individual.
(2) Is fully informed, prior to or at the time of admission and during stay, of services available in the facility, and of related charges including any charges for services not covered under Titles XVIII or XIX of the Social Security Act and are not covered by the facility's basic per diem rate (41 F.R. No. 61, p. 12883). The Interpretive Guidelines do not modify this requirement to allow notice to be given after admission, which is as it should be because of the difficulty of acting on such information after a patient has actually moved into a facility. Further (3) is fully informed by a physician of his medical condition unless medically contraindicated (as documented by a physician, in his medical record), and is afforded the opportunity to participate in the planning of his medical treatment and to refuse to participate in experimental research (essentially same for ICF patients, 42 C.F.R. This is essentially a repetition of existing laws concerning informed consent and human experimentation. It is interesting, however, in that it places a duty on the nursing home of insuring that patients' own physicians comply with the
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This introductory statement creates the framework within which the patients' rights are to be implemented in a facility. It has several significant features that are further emphasized in the Interpretive Guidelines: first, the facility's policies must be written; second, actual procedures must be instituted for effectuating the policies; third, responsibility for patients' rights must be assigned to specific personnel in the facility, ultimately residing in the administrator. The Interpretive Guidelines also make it clear that the reference in the regulation to patients' responsibilities cannot be used by facilities to create a code of patient obligations so onerous as to infringe upon the rights of patients set out in the regulations.
admission, since a patient who disagrees with the "responsibilities" imposed on him by a home has little recourse after he has actually moved into the facility. More questionable, however, is an exception not created in the regulations but added in the Interpretive Guidelines waiving this requirement "when medically contraindicated." The "medically contraindicated" exception pervades these rights and creates serious problems for patient advocates. First, it permits homes to avoid rights through bad faith collusion with a "captive" doctor, Second, it flies in the face of Constitutional protection of liberty against deprivation without due process hearings. Third, it appears to be used far more often than actually appropriate (as here, for example, where a patient might be physically unable to sign an acknowledgment of rights but would rarely be medically harmed by listening to a description of the rights). And fourth, it does not define what personnel are qualified to make such a "medically contraindicated" determination. (The ICF regulations are better in this area, in that they permit "medical" waivers only by a physician and/or a Qualified Mental Retardation Professional (same for ICF patients, 42 C.F.R. 449.12(a)(1 )(ii)(B)(2)).
law — a promising shift in the traditional chain of authority between facility and physician. The HEW Survey Procedures further require inspectors to check on the adequacy of physician "medically contraindicated" waivers, which is a needed safeguard against abuse. (4) Is transferred or discharged only for medical reasons, or for his welfare or that of other patients, or for non-payment for his stay (except as prohibited by Titles XVIII or XIX of the Social Security Act) and is given reasonable advance notice to ensure orderly transfer or discharge and such actions are documented in his medical records;4
(5) Is encouraged and assisted throughout his period of stay, to exercise his rights as a patient and as a citizen and to this end, may voice grievances and recommend changes in policies and services to facility staff, and/or to outside representatives of his choice, free from restraint, interference, coercion, discrimination, or reprisal (ICF regulations same. 449.12(a)(1)(ii)(B)(5)). Two very interesting affirmative duties are placed on nursing homes by this provision, according to the Interpretive Guidelines. First, 4 The ICF transfer regulations are found at 449.12(a)(1)(ii)(B)(4) and at 449.12(1)(1)(iii). The later section places a 5-day minimum o n notice of transfers, which is clearly too short, however, it does impose a duty to do transfer planning to "assure adequate arrangements . . . " .
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(6) May manage his personal financial affairs or be given, at least quarterly, an accounting of financial transactions made on his behalf, should the facility accept his written delegation of this responsibility for any period of time, in conformance with state law (ICF regulations are similar but omit quarterly accounting; they do require that a current account be maintained for inspection. 449.12(a)(1)(ii)(B)(6) and 449.12(a)(1)(iii). The omission of requirements that the facility maintain a separate bank account for patients' funds and {hat It provide bonded personnel are disappointing, although the reference to "conformance with State law" may incorporate them in many states. New regulations on patient trust account management are currently being drafted, which hopefully will establish stricter standards for both SNF's and ICF's. (7) Is free from mental and physical abuse, and free from chemical and (except in emergencies) physical restraints, except as authorized in writing by a physician for a specified and limited period of time, or when necessary to protect the patient from injury to himself or to others (ICF regulations generally the same. 449.12(a)(1)(ii)(A)(2) and 449.12(a)(1)
The Interpretive Guidelines make it clear that restraints are not to be used to limit patient mobility for the convenience of staff. (8) Is ensured confidential treatment of his personal and medical records, and may approve or refuse their release to any individual outside the facility, except, in case of his transfer to another health care institution, or as required by law or third-party payment contracts (ICF regulations less clear with respect
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The Interpretive Guidelines wisely apply these transfer protections to moves within a facility as well as to moves to the outside, in recognition of the equally traumatic effect such intrainstitution changes can have. The parenthetical reference to Titles XVIII and XIX was intended to prohibit a facility that is involved in a dispute about Medicare or Medicaid rates from construing the amount of the "inadequate" rate as nonpayment and transferring out patients on that ground. The big question left unanswered is how much advance notice of transfer is required. The ICF regulations' minimum of 5 days is clearly too short and most unfortunate. The SNF Interpretive Guidelines specify "far enough in advance that the patient may make his wishes known and participate in the planning for the move." At least one court has held that a minimum of 30 days is required (Carlson v. Morris, C.A. No. 35801, Superior Court of Washington for Skagit County, January 13,1976) and that seems reasonable, particularly given the provision for continuation of federal Medicaid payments 30 days after decertification to permit orderly transfer of patients.
they are required to inform patients of the facility of "issues or pending decisions of the facility that affect them" and to solicit patient views about them, which suggests a sort of participatory democracy in the administration of the home. Second, the facilities are required to aid patients in "identifying and obtaining services from community legal and social agencies, registering absentee ballots, etc." In addition, the interpretive Guidelines require a written grievance procedure, probably the same as that referred to above, in the introduction to 405.1121 (k), and that a written record of grievances and their dispositions be kept. Surveyors are supposed to review this grievance record and interview individual patients to verify it and the absence of retaliation.
social, religious, and community groups at his discretion, unless medically contraindicated (as documented by his physician in his medical records) (ICF regulations, 449.12{a)(1)(ii)(B)(13)).
to patients' right to release his own records to persons of choice. 449.12(a)(1)(ii)(A)(4); 449.12(a)
Civil libertarians and medical providers have long disputed the right of patients to gain access to their own medical records on behalf of a patient representative. The Interpretive Guidelines make it clear that SNF patients have this right to release "information contained in their records and charts to anyone they wish."
The Interpretive Guidelines require homes to actually "encourage and assist" patients to meet with community groups " i n or outside" the facility, which presumably includes providing groups with a place to meet and giving notices of meetings. The "medically contraindicated" waiver here raises the same problems as are discussed above. (13) May retain use of personal clothing and possessions as space permits, unless to do so would infringe upon rights of other patients, and unless medically contraindicated (as documented by his physician in his medical records); (ICF regulations same without limitations, 449.12(a)(1)(ii)(B)(14)).
(10) Is not required to perform services for the facility that are not included for therapeutic purposes in his plan of care (ICF regulations generally same,
Theft of patients' personal property is reported
The Interpretive Guidelines and Survey Procedures require that any performance of services by patients be entirely voluntary as well as therapeutic. (11) May associate and communicate privately with persons of his choice, and send and receive his personal mail unopened, unless medically contraindicated (as documented .by his physician in his medical records)5 This right is interpreted in the Guidelines as including not only a right on the part of patients to make contact with the community but also a right in "members of the community" to have access to patients, which is quite significant insofar as nursing homes occasionally do attempt to bar access to patients of consumer groups concerned about nursing home conditions. Such actions would seem to be prohibited by this provision in the federal patients' rights, as well as by the provision that follows. The "medically contraindicated" waiver included in the right seems both inappropriate, as there are few situations where actual medical harm might result from communication with other people, and likely to be abused by those nursing homes that have something to hide from members of the public.
as a pervasive problem throughout nursing homes. The Interpretive Guideline's requirements that a "safe location" and "secure storage" be provided arguably recognize that facilities are liable for the theft of patients' property when it occurs. (14) (If married) is assured privacy for visits by his/her spouse; if both are inpatients in the facility, they are permitted to share a room, unless medically contraindicated (as documented by the attending physician in his medical records); (ICF regulations same without limitations, 449.12(a)(1)(ii)(B)(15)). This section is self-explanatory. All rights and responsibilities specified in paragraphs (k)(1) through (4) of the section as they pertain to (a) a patient adjudicated incompetent in accordance with State law, (b) a patient who is found, by his physician, to be medically incapable of understanding these rights, or (c) a patient who exhibits a communication barrier — devolve to such patient's guardian, next of kin, sponsoring agency(ies) or representative payee (except when the facility itself is representative payee) selected pursuant to Section 205j of the Social Security Act and subpart (q) of this Chapter.6
(12) May meet with and participate in activities of,
The removal of patients' rights so cavalierly permitted by this section in situations (b) and (c) is not only inadvisable but also unconstitu-
'ICF regulations restrict this right when it "would infringe upon the rights of other residents/' but removes the "medical contraindication" waiver, which is sensible as it seems here particularly subject to abuse. 449.12(a) (1)(ii)(B)(12)
'The ICF regulations more closely limit the situations in which a patient can be deprived of his rights under this section, which indicates the degree regard. 449.12(a)(1)(ii)(C).
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(9) Is treated with consideration, respect and full recognition of his dignity and individuality, including privacy in treatment and in care for his personal needs (ICF regulations same. 449.12(a)(1)(ii)(B)(10)).
tional, as discussed earlier in this article. It is significant, however, that the first four rights are said to devolve to third persons, as this indicates some private cause of action for enforcement was intended by the regulations. Following the above described enumeration of rights is a separate Section, 405.1121(1) (quotation omitted), which seems designed to cause a blending of psycho-social considerations into the daily patient care policies of the institution. The method for doing this is the creation within each institution of a committee of professional personnel including a physician and registered nurse to establish such policies in the form of a written manual.
Many of the rights contained in the federal regulations are also found in preexisting state or federal law; for instance, the right to receive financial accountings is basic to state laws governing fiduciary relationships. Since they do not create a significantly new body of substantive rights, then, the most valuable role played by the enactment of the regulations would seem to be making existing rights more easily enforced. There are three levels at which the federal regulations pertaining to nursing home patients are primarily enforced. First, is by the administration of the home itself; second, is by the inspectors who survey nursing homes as a condition of participation in the Medicare and/or Medicaid programs; and third, is by individual patients who bring private lawsuits in state or federal courts. Enforcement by the Home The regulations themselves appear to contemplate a substantial enforcement effort within each nursing home, expressed in the language at the beginning of the section dealing with patients' rights This enforcement effort has three components: first, the establishment and use of a procedure in the home to protect rights; second, giving clear notice to the patients of their rights and said procedure; and third, educating the staff of the home to be aware of and observe patients' rights. The last two parts of this in-home enforcement process seem well developed by HEW in its Interpretive Guidelines, and the HEW survey procedures spell out clear steps to be followed during an inspection to document their observance by a particular home. However, the first element of in-home enforcement — develop-
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Enforcement by State and Federal Inspectors
Administrative responsibility for insuring compliance by homes with the Medicare and Medicaid nursing home regulations that include the patients' rights rests with both state and federal agencies. The federal regional Offices of Health Standards and Quality, in the Health Care Financing Administration of HEW, supervise the state agencies (usually Health Departments) which have been delegated the day-today responsibility for inspection and certification. HEW has promulgated interpretive guidelines and survey procedures to assist state inspectors in understanding the regulations and knowing what specific items to check as they go through a facility. In addition the federal inspectors conduct independent surveys of the same facilities on a sampling basis at the rate of perhaps 3% each year. A second aspect of the governmental enforcement process is responding to complaints about violations from individual patients. Regional offices of HEW are authorized to receive complaints and verify them; normally, they refer such complaints to the state survey agencies for investigation and report back to the regional office with respect to disposition. It appears that the government is actively enforcing the patients' rights regulations through the regular inspection process to the degree possible. Approximately 4% of all violations of standards that are currently found nationwide pertain to patients' rights.7 Among these, higher percentages pertain to the obligation to train facility staff about patients' rights (8%) and to the financial management and quarterly report obligations (another 8%). This may reflect the greater concrete visibility of the activities with which these kinds of rights are involved, 'Conversation with John Bird, Office of Health Standards and Quality, Health Care Financing Administration, Region IX.
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Enforcement of the Federal Regulations on Nursing Home Patients' Rights
ment of a complaint handling procedure — remains fuzzy and ill-defined in the HEW guidelines and survey procedures, which is particularly unfortunate since it is both the most difficult to implement, and the most important in achieving actual protection against violations of rights in individual cases. In fact, it appears that very few homes have a specific procedure for receiving and resolving complaints about individual violations of patients' rights and that inspectors are not presently enforcing that part of the regulations when they visit nursing homes.
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whether an enforcement action can be brought based on the federal patients' rights regulations per se. There are very few cases to date which have dealt directly with this issue, which is a result both of the relatively recent enactment of the patients' rights regulations (1974 and 1976) and the small number of court cases filed generally on behalf of elderly nursing home patients. The one area of nursing home patient interest in which there has been a considerable amount of litigation activity is that of involuntary transfers of patients. Such transfers occur for various reasons ranging from dissatisfaction of homes with Medicaid reimbursement rates to decertification of homes by governmental authorities for safety or other regulatory reasons. A number of cases have been brought during problem surely is the lack of visibility of this the past several years seeking to either halt federal complaint handling system, since it is such transfers outright or to require prior notice not described in the public Medicare and and hearing and/or careful planning to avoid Medicaid regulations. One simple way of transfer trauma effects.8 These cases have improving the situation would be to require typically pleaded causes of action based on information about the system to be given to the restrictions on transfer in the patients' rights patients along with their rights; this could regulations (20 C.F.R. 405.1121 (k)(4)) together result in an enormous increase in the re- with other legal theories such as violations of gional office workload of nursing home com- various constitutional and statutory provisions. Almost all have resulted in the issuance of orders plaints. A second weakness in the federal administra- prohibiting summary transfers, or settlements tive enforcement system is the lack of a achieving the same result, and so represent a disciplinary tool that is appropriate to violations series of victories for the nursing home patients. of individual rights. Under the current system, However, few have produced written and the government can only decertify a home for reported opinions of the courts that set out their noncompliance with federal standards, but it reasoning in ruling for the patients. Where they is highly unlikely that such a severe penalty have resulted in written opinions, the issue of would be imposed as a result of a violation the rights of patients to a private cause of of a single patient's rights. Although 4% of all action based upon the patients' rights regulaviolations of "standards" pertain to patients' tions has not been addressed frontally. During the last 6 months, however, two rights, a facility is normally decertified only when it has violated a "condition," which is additional cases have squarely confronted this composed of a number of component "stan- private cause of action question. Stella Fuzie v. dards." Thus, the government is essentially Manor Care, Inc. (Civil No. C 77-265 (N.D. without a disciplinary tool for the regulation Ohio, 1977)), is a class action filed against both a nursing home and the State of Ohio by a of individual patients' rights. group of patients who were told by the home, with the informed concurrence of state perEnforcement by Private Litigation sonnel, that they must move because the home There are a variety of traditional legal remedies that, at least theoretically, could be pursued with respect to violations of the •Peterson v. Berger, C.A. No. , Supreme Court of the State of New particular rights contained in the federal York, County of New York (December 16, 1975); Fields v. Berger, CA. No. Supreme Court of the State of New regulations, even in the absence of the regula- York, County of New York (December 3, ,1975); Mabel Dunn Rest Home, Inc., v. Weinberger, C.A. No. 75-0162 (D.R.I. tions. For example, a tort case under state 1975); law might be filed to obtain damages for a Carlson v. Morris, C.A. No. 35801, Superior Court of Washington for County (January 13, 1976); violation of the right to informed consent, Skagit Horn v. Hartwyck at Plainfield, Inc., C.A. No. 76-117 (D.N.J., March 9, 1976); which is also found in the federal regulations Houghton v. Stewart, C.A. No. 76-1455 (E.D. La., May 29, 1976); Shumate v. Parham, C A No. 76-838A (N.D. Ca., February 22, 1977); at 20 C.F.R. 405.1121(k)(3). Kane v. Parry, No. 256, New York Court of Appeals (April 28, 1977); Klein v. Mathews, 430 F. Supp. 1005 (D.N.J., 1977). Our question in this paper, however, is so that their violation is easily seen by inspectors. It is probably true that ease of policing makes status-type rights a natural area of concentration for inspectors and that conversely, the less tangible rights such as exercising citizenship, recommending changes, etc., (20 C.F.R. 405.1121 (k)(4)); being treated with respect for dignity and individuality (20 C.F.R. 405.1121 (k) (9)); and participating in community groups, (20 C.F.R. 405.1121(k)(12)), are less well enforced through the regular inspection process. The other side of the federal enforcement process — responding to complaints about individual violations of rights — appears to be far less effective in the current system. The number of complaints received is quite small; the HEW Region IX office processes approximately three complaints per month. A major
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wanted to reduce its Medicaid patient popula- of rights is emerging from all of this litigation, tion. Interim orders were issued by the federal at least as a theoretical possibility. However, district court restraining the home from trans- very real practical obstacles to the bringing ferring any patients among plaintiffs' class, and off such suits remain: the elderly nursing home the defendant home moved to dismiss the case patient whose rights have been aggrieved is for failure to state a cause of action — e.g., prevented from bringing suit by his isolation for lack of a legally enforceable right not to be from the community, including lawyers; his transferred. The court denied the defendants' lack of physical energy and psychic combativemotion to dismiss and stated there was a remedy ness; the problems of proof where staff will under state law to enforce the patients' bill of unite against aged and drugged complainants; rights based on the contract between home and the law of damages which places small value state, of which each patient was a third party on injury to those whose actuarial life expecbeneficiary, if not a direct party, because the tancies are zero; and his probable lack of contract incorporates by reference an obligation money to pay for legal representation. on the part of the home to abide by all Medicaid regulations including the patients' rights. Stronger Enforcement of Patients' Rights The Fuzie court refused to find sufficient Through an Administrative Citation System state action on the part of the nursing home to A stronger administrative enforcement proevoke constitutional protections against its cess for the patients' rights regulations has actions, and also refused to find a private federal been proposed in legislation currently before cause of action created by the federal regula- the Congress, H.R. 9720, introduced by Repretions under the test set forth by the U.S. Supreme sentative Cohen of Maine. This legislation Court in Cort v. Ash, 422 U.S. 66 (1975). requires the establishment by HEW of a clearly A similar case, Hazel Berry v. First Healthcare defined system for prompt investigation of Corporation, etal. (Civil No. 77-208 (D.C. N.H., complaints from individual patients, with a 1977)), is currently pending in the federal mandatory, prompt response including the district court for New Hampshire. Here plaintiffs imposition of monetary fines that accrue to the sued the nursing home and the state when the patient when violations are found. The rights former, with the latter's tacit compliance, of nursing homes are protected by opportunities attempted to enforce a "2-year rule" requiring for hearings prior to the imposition of fines, all private pay patients who received Medicaid and subsequent judicial review, as well as the assistance when their own funds were exhausted opportunity to collect for attorneys' fees when to transfer unless they had been private pay suits are brought for harassment purposes. If the patients' bill of rights concept is to patients for at least 2 years. In denying the motion to dismiss, Judge Bounds held, in mean more to the elderly than a show of good addition to the sort of contract cause of action intentions, it is vital that some means of enforcefound in the Fuzie case, that a private federal ment which is accessible to patients be estabcause of faction to enforce the Medicaid pa- lished. In this paper, we have seen that there tients' rights regulations does exist. While is no effective enforcement procedure in the the court in the Fuzie case held that the home itself; that administrative enforcement regulations contemplated a scheme of exclusive efforts of HEW are limited by the nature of the enforcement by the governmental agencies, thus inspection process and of the inappropriate excluding suits by private individuals, (except penalty of decertification; and that private to enforce state contractual rights), the court in litigation, while becoming recognized as Berry relied on the fact that HEW has provided legally viable, is practically unavailable to the no effective mechanism for enforcement of the average elderly nursing home patient. For patients' rights as a rationale for permitting these reasons, an administrative complaint system with power to issue citations is needed private federal enforcement suits. It does appear that the validity of private to give real meaning to the nursing home causes of action to enforce the patients' bill patients' bill of rights.
Nursing Home Patients' Rights
Are They Enforceable?1
Sally Hart Wilson, JD2
'Presented at the Annual Meeting of Gerontological Society Nov., 1977, San Francisco. 'Staff Attorney, National Senior Citizens Law Center, 1709 W. 8 St., Los Angeles, 90017.
Vol. 18, No. 3, 1978
promulgated regulations establishing a set of patients' rights applicable to residents of all skilled nursing facilities that participate in the Medicare or Medicaid programs (42 C.F.R. 405.1121 (k) and (I), formerly 20 C.F.R. 405.1121(k) and (I)). This was followed by a roughly parallel set of rights applicable to intermediate care facilities (42 C.F.R.- 449.12 and 449.13, formerly 45 C.F.R. 249.12 and 249.13, March 29, 1976). Now that the passage of time has permitted the smoke to clear somewhat, we can examine the federal patients' bill of rights to see how effective it has proved to be and to make suggestions for improvement. Substantive Rights Contained in the
Federal Patients' Rights Regulations The rights set forth in the federal patients' rights regulations all relate directly or indirectly to the individual liberties and dignities of nursing home patients, rather than to the quality of health and personal care provided to them, which is generally dealt with elsewhere in the regulations. The specific areas of nursing home conduct covered in the patients' rights are those in which nursing home residents have experienced actual abuse in the past. Although the language of the patients' rights regulations has been criticized for being vague as to meaning, we are aided in understanding it by Interpretive Guidelines issued by HEW and by court decisions (few, to date) applying the regulations in specific situations. In the following pages, the skilled nursing facility regulations will be examined section by section (with a footnoted comparison to the intermediate care facility regulations), to obtain the clearest possible sense of their meaning.
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The deprivation of personal rights and I iberties is listed alongside poor medical care as a major "abuse" of patients by those who have studied and written about nursing home conditions in this country. Of course, conflicts between the individual's needf for freedom and the group's need for conformity are inherent in institutional living situations. And certainly, the imitation by long-term care institutions of the hospital treatment model, with its traditional authoritarianism (which may or may not be justified by the short-term stay and critical illness characteristics of the hospital patient population) has contributed to unnecessarily restrictive policies. However, we know that the psychological and ultimately physical effects of losing the dignity protected by personal freedoms are devastating, so that considerations of good health care as well as simple justice demand that steps be taken to protect the personal rights of elderly long-term care patients. In the early 1970s the development of "Patients' Bills of Rights" was seen by many as a solution to this problem. Consumer groups created ever longer and more lovingly detailed lists of "rights" which they felt should belong to all nursing home patients. Some of these lists were placed in bills before state and federal legislatures, and a number of states have enacted these bills into law. Most significantly, in 1974, the Department of Health, Education, and Welfare, without specific statutory instruction,
42 C.F.R. Section 405.1121, Condition of Participation — Governing Body. (k) Standard: Patients rights. The governing body of the facility establishes written policies regarding rights and responsibilities of patients and, through the administrator, is responsible for development of, and adherence to, procedures implementing such policies. These policies and procedures are made available to patients, to any guardians, next of kin, sponsoring agency(ies), or representative payees selected pursuant to Section 205(j) of the Social Security Act and subpart (q) of part 404 of this chapter, and to the public. The staff of the facility is trained and involved in the implementation of these policies and procedures.
These patients' rights, policies and procedures ensure that, at least each patient admitted to the facility: (1) Is fully informed as evidenced by the patient's written acknowledgment, prior to or at the time of admission and during stay, of these rights and of all rules and regulations governing patient conduct and responsibilities;3 The interpretive guidelines pertaining to this "right" explain that any special communication problems of individual patients must be dealt with in conversing with them about mutual expectations regarding rights and responsibilities. Thus, translation must be made for the non-English speaking and braille or a recording provided for the blind. Quite disappointing is the Guidelines' dilution of the requirement in the regulations that this discussion of rights be held before or at the time of admission, to a possible 5 work days after 'Essentially the same for ICF patients, 449.12(a)(1)(ii)(B)(1), with addition of provision for third party witness in the case of a mentally retarded individual.
(2) Is fully informed, prior to or at the time of admission and during stay, of services available in the facility, and of related charges including any charges for services not covered under Titles XVIII or XIX of the Social Security Act and are not covered by the facility's basic per diem rate (41 F.R. No. 61, p. 12883). The Interpretive Guidelines do not modify this requirement to allow notice to be given after admission, which is as it should be because of the difficulty of acting on such information after a patient has actually moved into a facility. Further (3) is fully informed by a physician of his medical condition unless medically contraindicated (as documented by a physician, in his medical record), and is afforded the opportunity to participate in the planning of his medical treatment and to refuse to participate in experimental research (essentially same for ICF patients, 42 C.F.R. This is essentially a repetition of existing laws concerning informed consent and human experimentation. It is interesting, however, in that it places a duty on the nursing home of insuring that patients' own physicians comply with the
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This introductory statement creates the framework within which the patients' rights are to be implemented in a facility. It has several significant features that are further emphasized in the Interpretive Guidelines: first, the facility's policies must be written; second, actual procedures must be instituted for effectuating the policies; third, responsibility for patients' rights must be assigned to specific personnel in the facility, ultimately residing in the administrator. The Interpretive Guidelines also make it clear that the reference in the regulation to patients' responsibilities cannot be used by facilities to create a code of patient obligations so onerous as to infringe upon the rights of patients set out in the regulations.
admission, since a patient who disagrees with the "responsibilities" imposed on him by a home has little recourse after he has actually moved into the facility. More questionable, however, is an exception not created in the regulations but added in the Interpretive Guidelines waiving this requirement "when medically contraindicated." The "medically contraindicated" exception pervades these rights and creates serious problems for patient advocates. First, it permits homes to avoid rights through bad faith collusion with a "captive" doctor, Second, it flies in the face of Constitutional protection of liberty against deprivation without due process hearings. Third, it appears to be used far more often than actually appropriate (as here, for example, where a patient might be physically unable to sign an acknowledgment of rights but would rarely be medically harmed by listening to a description of the rights). And fourth, it does not define what personnel are qualified to make such a "medically contraindicated" determination. (The ICF regulations are better in this area, in that they permit "medical" waivers only by a physician and/or a Qualified Mental Retardation Professional (same for ICF patients, 42 C.F.R. 449.12(a)(1 )(ii)(B)(2)).
law — a promising shift in the traditional chain of authority between facility and physician. The HEW Survey Procedures further require inspectors to check on the adequacy of physician "medically contraindicated" waivers, which is a needed safeguard against abuse. (4) Is transferred or discharged only for medical reasons, or for his welfare or that of other patients, or for non-payment for his stay (except as prohibited by Titles XVIII or XIX of the Social Security Act) and is given reasonable advance notice to ensure orderly transfer or discharge and such actions are documented in his medical records;4
(5) Is encouraged and assisted throughout his period of stay, to exercise his rights as a patient and as a citizen and to this end, may voice grievances and recommend changes in policies and services to facility staff, and/or to outside representatives of his choice, free from restraint, interference, coercion, discrimination, or reprisal (ICF regulations same. 449.12(a)(1)(ii)(B)(5)). Two very interesting affirmative duties are placed on nursing homes by this provision, according to the Interpretive Guidelines. First, 4 The ICF transfer regulations are found at 449.12(a)(1)(ii)(B)(4) and at 449.12(1)(1)(iii). The later section places a 5-day minimum o n notice of transfers, which is clearly too short, however, it does impose a duty to do transfer planning to "assure adequate arrangements . . . " .
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(6) May manage his personal financial affairs or be given, at least quarterly, an accounting of financial transactions made on his behalf, should the facility accept his written delegation of this responsibility for any period of time, in conformance with state law (ICF regulations are similar but omit quarterly accounting; they do require that a current account be maintained for inspection. 449.12(a)(1)(ii)(B)(6) and 449.12(a)(1)(iii). The omission of requirements that the facility maintain a separate bank account for patients' funds and {hat It provide bonded personnel are disappointing, although the reference to "conformance with State law" may incorporate them in many states. New regulations on patient trust account management are currently being drafted, which hopefully will establish stricter standards for both SNF's and ICF's. (7) Is free from mental and physical abuse, and free from chemical and (except in emergencies) physical restraints, except as authorized in writing by a physician for a specified and limited period of time, or when necessary to protect the patient from injury to himself or to others (ICF regulations generally the same. 449.12(a)(1)(ii)(A)(2) and 449.12(a)(1)
The Interpretive Guidelines make it clear that restraints are not to be used to limit patient mobility for the convenience of staff. (8) Is ensured confidential treatment of his personal and medical records, and may approve or refuse their release to any individual outside the facility, except, in case of his transfer to another health care institution, or as required by law or third-party payment contracts (ICF regulations less clear with respect
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The Interpretive Guidelines wisely apply these transfer protections to moves within a facility as well as to moves to the outside, in recognition of the equally traumatic effect such intrainstitution changes can have. The parenthetical reference to Titles XVIII and XIX was intended to prohibit a facility that is involved in a dispute about Medicare or Medicaid rates from construing the amount of the "inadequate" rate as nonpayment and transferring out patients on that ground. The big question left unanswered is how much advance notice of transfer is required. The ICF regulations' minimum of 5 days is clearly too short and most unfortunate. The SNF Interpretive Guidelines specify "far enough in advance that the patient may make his wishes known and participate in the planning for the move." At least one court has held that a minimum of 30 days is required (Carlson v. Morris, C.A. No. 35801, Superior Court of Washington for Skagit County, January 13,1976) and that seems reasonable, particularly given the provision for continuation of federal Medicaid payments 30 days after decertification to permit orderly transfer of patients.
they are required to inform patients of the facility of "issues or pending decisions of the facility that affect them" and to solicit patient views about them, which suggests a sort of participatory democracy in the administration of the home. Second, the facilities are required to aid patients in "identifying and obtaining services from community legal and social agencies, registering absentee ballots, etc." In addition, the interpretive Guidelines require a written grievance procedure, probably the same as that referred to above, in the introduction to 405.1121 (k), and that a written record of grievances and their dispositions be kept. Surveyors are supposed to review this grievance record and interview individual patients to verify it and the absence of retaliation.
social, religious, and community groups at his discretion, unless medically contraindicated (as documented by his physician in his medical records) (ICF regulations, 449.12{a)(1)(ii)(B)(13)).
to patients' right to release his own records to persons of choice. 449.12(a)(1)(ii)(A)(4); 449.12(a)
Civil libertarians and medical providers have long disputed the right of patients to gain access to their own medical records on behalf of a patient representative. The Interpretive Guidelines make it clear that SNF patients have this right to release "information contained in their records and charts to anyone they wish."
The Interpretive Guidelines require homes to actually "encourage and assist" patients to meet with community groups " i n or outside" the facility, which presumably includes providing groups with a place to meet and giving notices of meetings. The "medically contraindicated" waiver here raises the same problems as are discussed above. (13) May retain use of personal clothing and possessions as space permits, unless to do so would infringe upon rights of other patients, and unless medically contraindicated (as documented by his physician in his medical records); (ICF regulations same without limitations, 449.12(a)(1)(ii)(B)(14)).
(10) Is not required to perform services for the facility that are not included for therapeutic purposes in his plan of care (ICF regulations generally same,
Theft of patients' personal property is reported
The Interpretive Guidelines and Survey Procedures require that any performance of services by patients be entirely voluntary as well as therapeutic. (11) May associate and communicate privately with persons of his choice, and send and receive his personal mail unopened, unless medically contraindicated (as documented .by his physician in his medical records)5 This right is interpreted in the Guidelines as including not only a right on the part of patients to make contact with the community but also a right in "members of the community" to have access to patients, which is quite significant insofar as nursing homes occasionally do attempt to bar access to patients of consumer groups concerned about nursing home conditions. Such actions would seem to be prohibited by this provision in the federal patients' rights, as well as by the provision that follows. The "medically contraindicated" waiver included in the right seems both inappropriate, as there are few situations where actual medical harm might result from communication with other people, and likely to be abused by those nursing homes that have something to hide from members of the public.
as a pervasive problem throughout nursing homes. The Interpretive Guideline's requirements that a "safe location" and "secure storage" be provided arguably recognize that facilities are liable for the theft of patients' property when it occurs. (14) (If married) is assured privacy for visits by his/her spouse; if both are inpatients in the facility, they are permitted to share a room, unless medically contraindicated (as documented by the attending physician in his medical records); (ICF regulations same without limitations, 449.12(a)(1)(ii)(B)(15)). This section is self-explanatory. All rights and responsibilities specified in paragraphs (k)(1) through (4) of the section as they pertain to (a) a patient adjudicated incompetent in accordance with State law, (b) a patient who is found, by his physician, to be medically incapable of understanding these rights, or (c) a patient who exhibits a communication barrier — devolve to such patient's guardian, next of kin, sponsoring agency(ies) or representative payee (except when the facility itself is representative payee) selected pursuant to Section 205j of the Social Security Act and subpart (q) of this Chapter.6
(12) May meet with and participate in activities of,
The removal of patients' rights so cavalierly permitted by this section in situations (b) and (c) is not only inadvisable but also unconstitu-
'ICF regulations restrict this right when it "would infringe upon the rights of other residents/' but removes the "medical contraindication" waiver, which is sensible as it seems here particularly subject to abuse. 449.12(a) (1)(ii)(B)(12)
'The ICF regulations more closely limit the situations in which a patient can be deprived of his rights under this section, which indicates the degree regard. 449.12(a)(1)(ii)(C).
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(9) Is treated with consideration, respect and full recognition of his dignity and individuality, including privacy in treatment and in care for his personal needs (ICF regulations same. 449.12(a)(1)(ii)(B)(10)).
tional, as discussed earlier in this article. It is significant, however, that the first four rights are said to devolve to third persons, as this indicates some private cause of action for enforcement was intended by the regulations. Following the above described enumeration of rights is a separate Section, 405.1121(1) (quotation omitted), which seems designed to cause a blending of psycho-social considerations into the daily patient care policies of the institution. The method for doing this is the creation within each institution of a committee of professional personnel including a physician and registered nurse to establish such policies in the form of a written manual.
Many of the rights contained in the federal regulations are also found in preexisting state or federal law; for instance, the right to receive financial accountings is basic to state laws governing fiduciary relationships. Since they do not create a significantly new body of substantive rights, then, the most valuable role played by the enactment of the regulations would seem to be making existing rights more easily enforced. There are three levels at which the federal regulations pertaining to nursing home patients are primarily enforced. First, is by the administration of the home itself; second, is by the inspectors who survey nursing homes as a condition of participation in the Medicare and/or Medicaid programs; and third, is by individual patients who bring private lawsuits in state or federal courts. Enforcement by the Home The regulations themselves appear to contemplate a substantial enforcement effort within each nursing home, expressed in the language at the beginning of the section dealing with patients' rights This enforcement effort has three components: first, the establishment and use of a procedure in the home to protect rights; second, giving clear notice to the patients of their rights and said procedure; and third, educating the staff of the home to be aware of and observe patients' rights. The last two parts of this in-home enforcement process seem well developed by HEW in its Interpretive Guidelines, and the HEW survey procedures spell out clear steps to be followed during an inspection to document their observance by a particular home. However, the first element of in-home enforcement — develop-
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Enforcement by State and Federal Inspectors
Administrative responsibility for insuring compliance by homes with the Medicare and Medicaid nursing home regulations that include the patients' rights rests with both state and federal agencies. The federal regional Offices of Health Standards and Quality, in the Health Care Financing Administration of HEW, supervise the state agencies (usually Health Departments) which have been delegated the day-today responsibility for inspection and certification. HEW has promulgated interpretive guidelines and survey procedures to assist state inspectors in understanding the regulations and knowing what specific items to check as they go through a facility. In addition the federal inspectors conduct independent surveys of the same facilities on a sampling basis at the rate of perhaps 3% each year. A second aspect of the governmental enforcement process is responding to complaints about violations from individual patients. Regional offices of HEW are authorized to receive complaints and verify them; normally, they refer such complaints to the state survey agencies for investigation and report back to the regional office with respect to disposition. It appears that the government is actively enforcing the patients' rights regulations through the regular inspection process to the degree possible. Approximately 4% of all violations of standards that are currently found nationwide pertain to patients' rights.7 Among these, higher percentages pertain to the obligation to train facility staff about patients' rights (8%) and to the financial management and quarterly report obligations (another 8%). This may reflect the greater concrete visibility of the activities with which these kinds of rights are involved, 'Conversation with John Bird, Office of Health Standards and Quality, Health Care Financing Administration, Region IX.
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Enforcement of the Federal Regulations on Nursing Home Patients' Rights
ment of a complaint handling procedure — remains fuzzy and ill-defined in the HEW guidelines and survey procedures, which is particularly unfortunate since it is both the most difficult to implement, and the most important in achieving actual protection against violations of rights in individual cases. In fact, it appears that very few homes have a specific procedure for receiving and resolving complaints about individual violations of patients' rights and that inspectors are not presently enforcing that part of the regulations when they visit nursing homes.
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whether an enforcement action can be brought based on the federal patients' rights regulations per se. There are very few cases to date which have dealt directly with this issue, which is a result both of the relatively recent enactment of the patients' rights regulations (1974 and 1976) and the small number of court cases filed generally on behalf of elderly nursing home patients. The one area of nursing home patient interest in which there has been a considerable amount of litigation activity is that of involuntary transfers of patients. Such transfers occur for various reasons ranging from dissatisfaction of homes with Medicaid reimbursement rates to decertification of homes by governmental authorities for safety or other regulatory reasons. A number of cases have been brought during problem surely is the lack of visibility of this the past several years seeking to either halt federal complaint handling system, since it is such transfers outright or to require prior notice not described in the public Medicare and and hearing and/or careful planning to avoid Medicaid regulations. One simple way of transfer trauma effects.8 These cases have improving the situation would be to require typically pleaded causes of action based on information about the system to be given to the restrictions on transfer in the patients' rights patients along with their rights; this could regulations (20 C.F.R. 405.1121 (k)(4)) together result in an enormous increase in the re- with other legal theories such as violations of gional office workload of nursing home com- various constitutional and statutory provisions. Almost all have resulted in the issuance of orders plaints. A second weakness in the federal administra- prohibiting summary transfers, or settlements tive enforcement system is the lack of a achieving the same result, and so represent a disciplinary tool that is appropriate to violations series of victories for the nursing home patients. of individual rights. Under the current system, However, few have produced written and the government can only decertify a home for reported opinions of the courts that set out their noncompliance with federal standards, but it reasoning in ruling for the patients. Where they is highly unlikely that such a severe penalty have resulted in written opinions, the issue of would be imposed as a result of a violation the rights of patients to a private cause of of a single patient's rights. Although 4% of all action based upon the patients' rights regulaviolations of "standards" pertain to patients' tions has not been addressed frontally. During the last 6 months, however, two rights, a facility is normally decertified only when it has violated a "condition," which is additional cases have squarely confronted this composed of a number of component "stan- private cause of action question. Stella Fuzie v. dards." Thus, the government is essentially Manor Care, Inc. (Civil No. C 77-265 (N.D. without a disciplinary tool for the regulation Ohio, 1977)), is a class action filed against both a nursing home and the State of Ohio by a of individual patients' rights. group of patients who were told by the home, with the informed concurrence of state perEnforcement by Private Litigation sonnel, that they must move because the home There are a variety of traditional legal remedies that, at least theoretically, could be pursued with respect to violations of the •Peterson v. Berger, C.A. No. , Supreme Court of the State of New particular rights contained in the federal York, County of New York (December 16, 1975); Fields v. Berger, CA. No. Supreme Court of the State of New regulations, even in the absence of the regula- York, County of New York (December 3, ,1975); Mabel Dunn Rest Home, Inc., v. Weinberger, C.A. No. 75-0162 (D.R.I. tions. For example, a tort case under state 1975); law might be filed to obtain damages for a Carlson v. Morris, C.A. No. 35801, Superior Court of Washington for County (January 13, 1976); violation of the right to informed consent, Skagit Horn v. Hartwyck at Plainfield, Inc., C.A. No. 76-117 (D.N.J., March 9, 1976); which is also found in the federal regulations Houghton v. Stewart, C.A. No. 76-1455 (E.D. La., May 29, 1976); Shumate v. Parham, C A No. 76-838A (N.D. Ca., February 22, 1977); at 20 C.F.R. 405.1121(k)(3). Kane v. Parry, No. 256, New York Court of Appeals (April 28, 1977); Klein v. Mathews, 430 F. Supp. 1005 (D.N.J., 1977). Our question in this paper, however, is so that their violation is easily seen by inspectors. It is probably true that ease of policing makes status-type rights a natural area of concentration for inspectors and that conversely, the less tangible rights such as exercising citizenship, recommending changes, etc., (20 C.F.R. 405.1121 (k)(4)); being treated with respect for dignity and individuality (20 C.F.R. 405.1121 (k) (9)); and participating in community groups, (20 C.F.R. 405.1121(k)(12)), are less well enforced through the regular inspection process. The other side of the federal enforcement process — responding to complaints about individual violations of rights — appears to be far less effective in the current system. The number of complaints received is quite small; the HEW Region IX office processes approximately three complaints per month. A major
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wanted to reduce its Medicaid patient popula- of rights is emerging from all of this litigation, tion. Interim orders were issued by the federal at least as a theoretical possibility. However, district court restraining the home from trans- very real practical obstacles to the bringing ferring any patients among plaintiffs' class, and off such suits remain: the elderly nursing home the defendant home moved to dismiss the case patient whose rights have been aggrieved is for failure to state a cause of action — e.g., prevented from bringing suit by his isolation for lack of a legally enforceable right not to be from the community, including lawyers; his transferred. The court denied the defendants' lack of physical energy and psychic combativemotion to dismiss and stated there was a remedy ness; the problems of proof where staff will under state law to enforce the patients' bill of unite against aged and drugged complainants; rights based on the contract between home and the law of damages which places small value state, of which each patient was a third party on injury to those whose actuarial life expecbeneficiary, if not a direct party, because the tancies are zero; and his probable lack of contract incorporates by reference an obligation money to pay for legal representation. on the part of the home to abide by all Medicaid regulations including the patients' rights. Stronger Enforcement of Patients' Rights The Fuzie court refused to find sufficient Through an Administrative Citation System state action on the part of the nursing home to A stronger administrative enforcement proevoke constitutional protections against its cess for the patients' rights regulations has actions, and also refused to find a private federal been proposed in legislation currently before cause of action created by the federal regula- the Congress, H.R. 9720, introduced by Repretions under the test set forth by the U.S. Supreme sentative Cohen of Maine. This legislation Court in Cort v. Ash, 422 U.S. 66 (1975). requires the establishment by HEW of a clearly A similar case, Hazel Berry v. First Healthcare defined system for prompt investigation of Corporation, etal. (Civil No. 77-208 (D.C. N.H., complaints from individual patients, with a 1977)), is currently pending in the federal mandatory, prompt response including the district court for New Hampshire. Here plaintiffs imposition of monetary fines that accrue to the sued the nursing home and the state when the patient when violations are found. The rights former, with the latter's tacit compliance, of nursing homes are protected by opportunities attempted to enforce a "2-year rule" requiring for hearings prior to the imposition of fines, all private pay patients who received Medicaid and subsequent judicial review, as well as the assistance when their own funds were exhausted opportunity to collect for attorneys' fees when to transfer unless they had been private pay suits are brought for harassment purposes. If the patients' bill of rights concept is to patients for at least 2 years. In denying the motion to dismiss, Judge Bounds held, in mean more to the elderly than a show of good addition to the sort of contract cause of action intentions, it is vital that some means of enforcefound in the Fuzie case, that a private federal ment which is accessible to patients be estabcause of faction to enforce the Medicaid pa- lished. In this paper, we have seen that there tients' rights regulations does exist. While is no effective enforcement procedure in the the court in the Fuzie case held that the home itself; that administrative enforcement regulations contemplated a scheme of exclusive efforts of HEW are limited by the nature of the enforcement by the governmental agencies, thus inspection process and of the inappropriate excluding suits by private individuals, (except penalty of decertification; and that private to enforce state contractual rights), the court in litigation, while becoming recognized as Berry relied on the fact that HEW has provided legally viable, is practically unavailable to the no effective mechanism for enforcement of the average elderly nursing home patient. For patients' rights as a rationale for permitting these reasons, an administrative complaint system with power to issue citations is needed private federal enforcement suits. It does appear that the validity of private to give real meaning to the nursing home causes of action to enforce the patients' bill patients' bill of rights.
