Long-term psychiatric care in Ontario: the Homes for Special Care Program J.A. Sylph, ma, dip soc admin; M.R. Eastwood, mb, ch b, md, H.B. Kedward, ma, mb, ch b, md, mrc psych, frcp[c]
During the last decade in Ontario large numbers of patients with chronic psychiatric disorders have been discharged from the mental hospitals and are now scattered throughout other psychiatric facilities. The Homes for Special Care Program offers privately run but government-
funded accommodation for severely disabled patients with relatively stable and socially acceptable behaviour, who require residential or nursing care but are thought unlikely to benefit from further hospital treatment. Salient features of the program include the formal discharge of patients from hospital and their legal reinstatement as "persons", the cessation of active psychiatric treatment, and the provision of ongoing care and supervision by largely untrained personnel. Medical
care is provided by general practitioners and the program looks to volunteer agencies to provide recreational and other activities for residents. cours de la derniere decennie, dans la province d'Ontario, un grand nombre de malades souffrant de troubles psychiatriques chroniques ont ete renvoyes des hopitaux mentaux et repartis. dans d'autres organismes psychiatriques. Le Programme de Maisons de soins speciaux, dirige par des particuliers a moyen de subsides gouvernementaux, permet de loger des malades severement atteints mais stabilises du point de vue de conduite sociale, qui ont encore besoin ou d'hebergement ou de soins
Au
infirmiers, mais qui, il
est
estime\
n'auraient pas beneficte d'un traitement
plus prolonge a I'hdpital. D'apres
ce
programme les malades recoivent leur conge formel de I'hdpital et ne sont plus en tutelle; ils ne recoivent plus de traitement psychiatrique actif, mais ils recoivent des soins et une surveillance par un personnel non specialement entraine. Les soins
proprement medicaux sont dispenses par des
omnipraticiens, et les responsables du programme doivent
chercher des volontaires pour fournir residents des activites recreatives
aux
et autres. From the Clarke Institute of Psychiatry, Toronto Reprint requests to: Dr. H.B. Kedward, Clarke Institute of Psychiatry, 250 College St., Toronto, ON M5T 1R8
mrc
psych,
In the past decade in Ontario, as else¬ where, large numbers of psychiatric patients were moved out of the mental hospitals owing to improvements in medication, changes in psychiatric phi¬ losophy, awareness of the eroding ef¬ fect of institutionalization, and evolu¬ tion of economic and other priorities in the health care system.1 Gradually the mental hospital came to be seen as a place of active treatment, with goals comparable to those of the general hospital. However, not all patients were able to change with the times: a sizable minority remained unimproved by any treatment but could not be discharged home because many had no relatives or none willing to accept them. In different countries and in dif¬ ferent Canadian provinces other solu¬ tions2"5 were sought to the problem of the intractable psychiatric patient with no home to go to. In Ontario during the 1960s a number of programs were established or expanded to offer ac¬ commodation to the homeless mentally
disabled. Such accommodation con¬ sisted of "residential units", subsequent¬ ly phased out, "approved homes" and "homes for special care" (HSC). Ap¬ proved homes accept patients who are considered to have at least some re¬ habilitation potential, and HSC provide "nursing, sheltered and residential care"6 for the remainder. Though community-based and freed from many of the former administrative and other re¬ straints, the HSC in fact inherit the mental hospitals' earlier custodial role. This paper reviews the history and achievements of the program.
frcp[c];
Financial assistance from the provin¬ cial government and later, in 1966, from the Canada Assistance Plan pro¬ vided further impetus for the discharge of chronically ill patients from the hos¬ pitals. This was effected first by the transfer of suitable patients to newly designated residential units and by the expansion of the Approved Homes Program, which had been functioning on a modest scale since the 1930s. However, these developments were in¬ sufficient to cope with the number of eligible patients and accordingly, with the passing of the Homes for Special Care Act in 1964, a new type of facility was created. The need to place patients with physical disability or requiring nursing care was given priority. Beds in existing nursing homes were made available to the program, and residential facilities for ambulant and more so¬ cially competent patients were intro¬ duced later. At present there are some 7000 HSC residents in Ontario in 281 residential and 245 nursing homes. Since 1965 over 14 000 patients have been admit¬ ted to the HSC Program, having been transferred from Ontario hospitals and facilities for the mentally retarded, often by way of residential units. The number of HSC beds increased sharply until 1969, then levelled off (Fig. 1). While the number of admissions during the past 10 years has been erratic, the number of patients leaving the program through death (25%), readmission to a
psychiatric hospital (12%) or discharge to the community (5%) has remained relatively constant (Fig. 2), with a ratio of admissions to discharges of 2.5:1 Development of the program over the decade. The high death rate This program was set up primarily may be attributed to the large number to relieve overcrowding in the Ontario of geriatric patients placed by the pro¬ hospitals, in response to the Dymond gram in its early days and also to the Report of 1959,7 which also recom¬ presence in the nursing homes of phy¬ mended a retreat from purely custodial sically infirm patients. Despite an aver¬ car§ of the chronically ill. Approxi¬ age attrition rate of 40% over the past mately 9% of the province's mental decade, there has been an accumulation hospital population was estimated to of patients in the HSC. While the bed/ require no further active treatment but population ratio for the public mental lacked "immediate provision for care hospitals in Ontario in 1971 was 1.3/ and lodging" elsewhere. The retention 1000, the inclusion of HSC beds in of these patients in hospital was con¬ this statistic would increase the ratio sidered to overtax staff resources,8 and to 2.2/1000.10 their removal, it was hoped, would en¬ Custodial population able the hospitals to function more ef¬ Since the main features of the HSC as "active treatment, training fectively and research centres".9 Program are the cessation of active CMA JOURNAL/FEBRUARY 7, 1976/VOL. 114 233
treatment, discharge and permanent placement outside hospital, evaluation of the program must take into account the population for whom this regimen has been prescribed. Under the terms of the HSC Act, explicit criteria for eligibility consist only of being in need of "nursing, sheltered or residential care" and having been an inmate of an Ontario hospital or residential unit. Suitability for the program is assessed by the hospital treatment team and the HSC fieldworker, though the selection process appears to be informal and placement depends ultimately on the availability of a bed. After consultation with relatives or next of kin the field¬ worker makes the final decision, weigh¬ ing the appropriateness of the currently available placement facilities and the needs of the individual patient. Though the criteria and mechanisms of patient selection are not clear-cut, they might reasonably be expected to produce a population in the homes that differs from that in the hospitals. Dur¬ ing a series of studies,1'10 carried out by the epidemiology section of the Clarke Institute of Psychiatry, the HSC popu¬ lation in the Toronto area was sur¬ veyed. A 1-day census of psychiatric patients receiving long-term care within the ambit of one Ontario hospital was carried out, and demographic and diag¬ nostic information was collected on the HSC group and others receiving dif¬ ferent types of care, including inpatient treatment, day care and after care (Table I). The source of data, including most recently assigned diagnosis, was hospital records. Long-term care was defined as a minimum stay in a hospi¬ tal or other psychiatric facility of 2
Table I.Characteristics of patients from types of long-term care
Characteristic Sex
Ontario
hospital receiving different
Hospital inpatient (n 100)
Type of patient, Receiving day care (n 90)
48.0 52.0
56.7 43.3
73.7 26.3
47.3 52.7
47
44
51
56
13
7
12
15
65.0 14.0 21.0
78.9 3.3 17.8
78.9 7.9 13.2
60.4 30.8 8.8
=
Male (%) Female (%)
Mean age (yr) Mean duration of
hospital stay (yr) Diagnosis Schizophrenia (%) Organic (%) Other (%)
the population was noticeably older, had a longer mean hospital stay and had a different diagnostic picture than patients managed directly by the hos¬ pital. Though schizophrenia was the most commonly assigned diagnosis in each group, the proportion of HSC patients with organic illness was pro¬ nounced. The consistency of the hos¬ pital diagnosis was studied separately in a sample of patients receiving long-term
care, most of whom were hospitalized, smaller numbers being drawn from other facilities, including the HSC. Mental state was assessed with the Present State Examination (PSE),11 and a project diagnosis based on the PSE findings and the previous history was arrived at by consensus among research psychiatrists. There was 85% agree¬ ment between hospital and project diag¬ nosis for organic syndromes and 87% concordance for diagnoses of schizo¬ phrenia; these two diagnoses accounted for most of the sample. Physical, social and psychological state were also as¬
years, or five or more admissions in 10 years. In the HSC group there were slightly more females than males, and
one
Receiving (n 38)
In home for
after care
=
special care (n 91)
=
=
sessed. Psychological impairment, af¬ fective flattening, slowness, disorientation and memory loss were more common among HSC residents, who were also functioning socially at a much lower, more dependent level than patients in other facilities.
Operation
of the program The status of HSC residents differs from that of former hospital patients living in other facilities for long-term care. On discharge from hospital a pa¬ tient entering the HSC Program is no longer designated a patient, has his name removed from "the books" of the hospital and becomes a "resident" or "person". Financial and other respon¬ sibilities for this person are shifted from one branch of the Ministry of Health to another, and medical super¬ vision passes into the hands of com¬ munity general practitioners. This is in contrast to a resident of an approved home who, though often much less dis-
Residential Homes
Returned to
Discharges
1964 1965
66*
H
68
FIG. 1.Number of beds
69
70
71
72
71
occupied by homes for special
(HSC) residents, Ontario. 1965-73.
234 CMA JOURNAL/FEBRUARY 7,
65
66
67
68
69
70
71
72
73
hospital
74
Years
care
1976/VOL. 114
FIG. 2.Number of admissions, deaths, readmissions to a psychiatric hospital and discharges to the community of HSC residents, Ontario, 1965-74.
abled, retains his patient designation for extended
and continues to be the direct respon¬ sibility of the hospital. Not all contact is severed, however, between the HSC resident and the hospital. Continuing liaison is provided by fieldworkers, largely psychiatric nurses or social workers, who are usually based within an Ontario hospital. There are two types of HSC nursing and residential. Both are privately run but must conform to stand¬ ards laid down by the HSC Act and the Nursing Homes Act, 1972. Residen¬ tial homes are intended to provide a good homelike atmosphere and regula¬ tions are few. The maximum number of residents recommended is 12, though a number of larger homes continue from the program's early days. The homes operators should be healthy, come from a "wholesome background" and demonstrate appropriate personal qualities; they receive no training in residential or long-term care but are informally assessed for suitability by the HSC fieldworker. Requirements for nursing homes are more stringent, ac¬ cording to the Nursing Homes Act. Two levels of nursing care, interme¬ diate and extended, with different staff/patient ratios and costs, are pro¬ vided according to the needs of indi¬ vidual patients. Residents unable to support themselves in HSC homes are maintained by the Ministry of Health, which supplies all medical and personal items. Homes are also required to "estab¬ lish and implement on a regular basis organized programs of social, physical and recreational activity"12 suited to residents' needs, and various recrea¬ tional supplies should be present in each home. No financial help whatsoever is available for this and it is recommended that volunteers supply the necessary recreational services. In practice it is often impossible to imple¬ ment this section of the act. Great efforts are made by some operators of residential homes but lack of money and staff and, in some cases, geo¬ graphic isolation of the home may preclude the provision of any stimulating activity for residents. Even informal outings may be impossible for the more disabled residents because of staffing deficiencies and lack of transportation. Many of the operators, particularly in rural areas, are keenly aware of these limitations and would welcome the presence of a workshop or other sheltered activity in the locality. Medical care for residents is pro¬ vided by a local physician selected by the operator of the home. Apart from responding to calls, his duties include regular physical examination of res¬ idents and reassessment of suitability
.
care. He also assumes signed to the care of the entirely psychiatric supervision, though he untrained. may consult the hospital psychiatrist The fundamental logic of the pro¬ or obtain information from hospital gram is in fact economic: scarce re¬ files; in practice this is infrequent. De sources of trained manpower are confacto continuity of psychiatric care is served for those whom they can bene¬ vested in the fieldworker, who is al¬ fit. Yet cost-benefit arguments can be ready absorbed in a wealth of adminis¬ seen to be losing ground with regard trative and social service tasks, relating to other groups equally in the grip of in some detail to the physical, social, apparently irreversible processes, such emotional, legal and other needs of as the aged and the dying. Enhance¬ several hundred patients in 20 to 30 ment of the quality of life of the other homes. terminally ill and the aged is now re¬ If a patient's mental state deterior- garded as an aim worthy of staff re¬ ates so that he cannot be managed sources and research effort, though in the home any longer, communication little can be expected in terms of must be established between the phy¬ material gains to society. Again, many sician, the home operator, the HSC other groups were once considered fieldworker and the hospital treatment "unlikely to benefit from active treat¬ team. The low readmission rate im¬ ment" and were accordingly written off plies that this situation is infrequent, as fit only for passing their days in but some hospitals are reluctant to re- institutional or other seclusion. The admit their former patients from the outlook for epileptics, paraplegics and program. Home operators in these the mentally retarded has changed con¬ catchment areas are obliged to tolerate siderably since their conditions began all but the most grossly disturbed be¬ to be regarded as suitable objects of haviour in residents, and even then clinical and research effort. Under¬ readmission may not be conceded with¬ standing of the natural history of out an administrative struggle. Without schizophrenia is far from complete and the safeguard of continuing "patient" it would seem premature to assign the status HSC residents have no guar¬ status of "beyond active treatment" to anteed right of re-entry into the hos¬ any major group of patients. All mental hospitals have their population of pa¬ pitals. tients for whom everything has been Logic of the program tried without success, yet no one in Such continuity of care as is exer¬ other fields, for example in cancer re¬ cised by the mental hospital that search, would suggest that a problem discharged the patient is limited to that does not yield itself to ready solu¬ contingencies. Heavy responsibility in¬ tion be abandoned altogether. It is not clear, even within the limits evitably devolves upon the home oper¬ ator. In many cases she is ill equipped of present knowledge, that nothing to make decisions concerning the psy¬ further can be done with the patients chiatric status of residents. While nurs¬ consigned to the HSC Program, nor ing homes are staffed by those with indeed that everything possible has al¬ at least some nursing experience, ready been done. A count of treatment though not necessarily psychiatric ex¬ modalities offered to patients over their pertise, residential homes are most entire hospital stay was carried out as often run by people with no medical part of the chronic psychosis studies training whatsoever. Yet this in no way at the Clarke Institute. Despite their runs counter to administrative policy lengthy stay in a home, the HSC pa¬ with regard to the program. Residents tients sampled had received fewer types are persons, not patients, and when of treatment than patients in other they enter the homes, accompanied by facilities. Modalities such as ECT, psy¬ only the sketchiest documentation, chotherapy, industrial and occupational their psychiatric past is put behind therapy were least likely to have been them. offered to HSC patients and a small At first glance, the rationale behind number had never been treated with such thinking appears admirable: to pharmacotherapy. None had received reinstate the individual as a person newer therapies such as implanted flurather than a patient and compensate phenazine hydrochloride, though in two for the dehumanizing indignities of in- thirds the diagnosis was schizophrenia. stitutionalization. Yet it is a curious During the study, recommendations for paradox that the single group of pa¬ further treatment were made. These in¬ tients requiring long-term care to whom cluded trial in a sheltered workshop, such dignity and freedom is accorded transfer to the more stimulating envir¬ consists of those who, by definition, are onment of a city approved home, be¬ the most seriously disabled and presum¬ haviour modification therapy, further ably the most incapable of appreciating clinical investigation, and, in two thirds their fortunate civil status. It is inter¬ of the sample, review of drug therapy. esting also that such patients are con- Only occasionally had medication been
their
CMA JOURNAL/FEBRUARY 7, 1976/VOL. 114 235
adjusted since discharge, but it continued to be supplied routinely. The small sample described above may be unrepresentative of the HSC population; none the less, the system of psychiatric supervision established for the program does not encourage optimism. There are many difficulties, as Engelsmann13 pointed out, in evaluating programs of long-term care such as this, that cannot have as an objective the rehabilitation, resocialization or discharge of its patients. The stated goal of the HSC Program was to reduce the pressure on the mental hospitals by providing nursing, residential and sheltered care; to this end the program cannot be faulted. Much of the care provided is dedicated, humane and kindly, and gross abuse, though a popular topic with the press, is uncommon. The question is whether any more can reasonably be done to improve the well-being of these patients. In many cases the answer must be no. It cannot be regretted that they are no longer languishing in noisome back wards, yet it has been suggested14 that the present situation of such patients may constitute little real improvement on the traditional theme of being "put away", preferably in delightful rural surroundings, but without psychiatric supervision and the occupational and recreational amenities of the hospital. A basic weakness is perhaps that the HSC Program was conceived of as an explicitly terminal arrangement for the chronically ill. This may be regarded as merely realistic; however, in the era of the back ward such a negative view of patients did little to raise or maintain standards of care and seems unlikely to do so in this new community setting, particularly when the caretakers are no longer even partially trained. At present the outlook for recovery of many HSC patients may be poor, but this is not sufficient reason to deny them specialist attention, though it may no longer be needed frequently. Psychotropic medication needs careful monitoring and adjustment, and only periodic psychiatric review can provide the necessary control. That the condition of patients is not totally static is implied by the 12% readmission rate and the 5% rate of discharge from the homes to the community. Although social factors relating to home circumstances and changes in physical state may account for a proportion of this movement, these rates nevertheless suggest that some patients do get better and others worse. Many patients not accounted for by these statistics may lead an unduly vegetative existence that might be substantially improved by adjustments of medication and encouragement of activity.
Yet the real issue is the status of long-term care within the health services. The name chronic-care hospital still carries the stigma of therapeutic detritus and defeat, and chronic illness of all kinds is still considered an anomaly that perversely refuses to conform to the proper illness-treatment-cure model.15 Underinvestment, lack of professional respect, low status and benign neglect are its sequelae. Changing the name of the mental hospital from asylum to active treatment centre does not alter the needs of the chronically mentally ill or reduce their numbers, though we would like to have it so and indeed, by no longer calling them patients we can make it appear so. All that has happened is that the function of the mental hospital has been restricted and a proportion of its most severely disabled patients has been swept out of sight, out of the reach of therapeutic innovation, of all but the most strenuous research effort, and even of routine psychiatric supervision. The generous cooperation of the many individuals responsible for the HSC Program, in particular Dr. F.H. Ellingham, formerly chief adviser and medical consultant, extended health care, Ontario Ministry of Health, and F.W. Males,
regional supervisor, HSC Program, and his staff, is gratefully acknowledged. The study was supported by Ontario Health Council Grant DM 105. References 1. ALLODI FA, KEDWARD HB: The vanishing chronic. Can I Public Health 64: 279, 1973 2. CAPSTICK N: Group homes: rehabilitation of the long stay patient in the community. Proc R Soc Med 66: 1229, 1973 3. THOMPSON K: A concentrated psychiatric placement program. Ment Hyg 53: 295, 1968 4. TOLL iF, GREEN C: Sheltered boarding care. I Psychiatr Nurs 4: 440, 1966 5. SCULTHORPE WB: Multiple placements of pay' chotic patients. Soc Casework 41: 517, 1960 6. Homes for Special Care Act, 1964, chap 39, section 29, Statutes of Ontario, 1963-64, To. ronto, Queen's Printer 7. DYMOND MB: Proposed revision of mental health program in Ontario, Ontario Ministry of Health, 1959 8. HOLLING SA: Homes for special care. Can Ment Health 17 (2): 20, 1969 9. Homes for Special Care, Ontario Ministry of Health, Sept 25, 1973 10. KEDWARD HB, EAsTwooo MR, ALLODI FA, et al: The evaluation of chronic psychiatric care. Can Med Assoc 1 110: 519, 1974 11. WING JK, BIRLEY JLT, COOPER JE, et al: Reliability of a procedure for measuring and classifying "present psychiatric state". Br J Psychiatry 113: 499, 1967 12. The Nursing Homes Act, 1972, chap 11, Statutes of Ontario, and Ontario Regulation 196/72, 1972, Toronto, Queen's Printer 13. ENGEL5MANN F, Mua.n. HBM, TCHENGLAROCHE FC: Criteria for the post-hospital adjustment of mental patients in sheltered settings. Can Psychiatr Assoc 1 19: 375, 1974 14. MURPHY HBM, PENNER B, LUcHINs D: Foster homes - the new back wards? Can Ment Health 20: suppi 71, 1972 15. Wairra NF: The disability spectrum. An approach to the chronic patient problem. Paper presented to Canadian Psychiatric Association annual meeting, Oct 1974
Technique evaluation of foster care in chronic psychiatric disorders TERENCE J. HEINs,* MB, BS, M SC, FRCP; ALEXANDER S. MACPHERSON, MD, M SC, FRCP[C]
Foster care received by 178 patIents with chronic psychiatric disorders discharged from Hamilton Psychiatric Hospital In the years 1966 through 1969 was studied by technique evaluation. Residents were followed for 3 years by means of health records. The achievement of operational objectives of the program (Homes for Special Care) was compared with two typos of outcome - emergency
From the departments of psychiatry and clinical epidemiology and biostatistics, McMaster University, Hamilton An earlier version of this paper was presented at the 55th annual meetini of the Ontario Psychiatric Association, Toronto, Feb. 1, 1975. The study was supported by Health and Welfare Canada under National Health Grant 606-1025-22. Reprint requests to: Dr. A.S. Macpherson, Department of community health, The Montreal General Hospital, 1650 Cedar Ave., Montreal, PQ H3G 1A4 *Permanent address: Dr. T. Hems, Department of psychiatry, University of Adelaide, GPO Box 498, Adelaide, SA 5001, Australia
readmission to hospital and discharge to the community. Emergency readmission was associated with rural location of the foster home, inferior quality of the home operator and smaller size (I.e., fewer residents) of the home. Discharge to the community was more common among younger, female residents whose previous psychiatric hospitalization had been relatively brief. In general, prescription audit was not a fruitful way of evaluating quality of health care. Les soins re;us en foyer d'h6bergement par 178 patients atteints d'affectlons psychiatriques chroniques, et ayant obtenu leur cong6 du Hamilton Psychiatric Hospital entre 1966 et 1969, ont et6 6tudi6s par 6valuation technique. Les penslonnaires furent suivis sur une periode de 3 ans au moyen de leurs dossiers m6dlcaux. L'attelnte des objectifs op6rationnels
CMA JOURNAL/FEBRUARY 7, 1976/VOL. 114 237