On February 25, 1992, the Department of Mental Retardation petitioned the Probate Court to apply the doctrine of substituted judgment and order hemodialysis treatment for R.H., a thirty-three year old mentally retarded resident of the Fernald State School in Waltham who
1. The background facts. The following facts are based upon the judge's "Findings of Fact/Conclusions of Law/Judgment," as amended after reconsideration on August 6, 1993, and supplemented where necessary by uncontested evidence from the trial transcript and exhibits. R.H. was born on October 13, 1958, and has resided at Fernald since August, 1961. She has Down's Syndrome and is moderately mentally retarded. As a result of her mental retardation, she is not and has never been competent to manage her personal and financial affairs or provide informed consent for any medical treatment.
Most significantly for the present inquiry, she has a degree of communication and comprehension skills. She can make verbal requests for her wants and needs, answers the telephone correctly, communicates both at Fernald and at work in brief, simple conversations, and uses sign language to express more abstract ideas (e.g., she has been able to inform her program supervisor, who can understand her speech, when she needs more work and whether she wants her work station moved to a warmer location because she is cold). She has participated in a diet workshop program in the course of which she made known her understanding of the basic concepts of dieting and nutrition.
Over the years, R.H. has had a variety of medical problems, treatment of which has ranged from ingestion of antibiotics to surgery and postsurgical rehabilitation involving lengthy restrictions on her movement. In all of her medical treatments she has been cooperative and well behaved. Her only serious health problem has been chronic kidney failure caused by chronic pyelonephritis, for which she has been monitored and treated since 1979, mainly through a special restricted diet and drugs. Monitoring her condition
Hemodialysis, one of the two types of dialysis, is the only form of aggressive treatment which the judge believed was a medical option for R.H.
R.H.'s mother has consistently and vehemently opposed the initiation of any dialysis treatment, expressing concern that R.H. would be unable to tolerate it. The two physicians responsible for R.H.'s health care at Fernald (one presently and the other formerly), who saw her several times a week and were experts in treating patients with mental retardation, felt differently. They recommend dialysis for her, based upon their long-term knowledge of her condition and behavior and their experience with other mentally retarded patients who had received dialysis. They opined that she could cooperate successfully in dialysis treatments, that she would not experience any more pain than she normally felt when her blood was drawn, that dialysis would give her ten or twenty more years of "a good quality life," and that it was their ethical obligation to give her the opportunity to continue to enjoy her life for as long as possible.
A hospital dialysis unit director who examined R.H. and her medical history before trial and had treated mentally retarded patients with more severe mental and behavior problems than hers, believed that dialysis would be a medically reasonable form of treatment for her. He agreed with her treating physicians that she could tolerate the process, that the pain involved would be no greater than that associated with needle insertion, and that it would not be a particularly difficult treatment for her to undertake. He felt that, except for the problems of scheduling the dialysis treatments, she would not only be able to continue her work and other
Opposed to these opinions were those of two physicians expert in the diagnosis and treatment of kidney disease, one her treating nephrologist for several years and the other a consultant who examined her in May, 1992. Neither felt that R.H. was a suitable candidate for dialysis because of their anticipation that she could not be expected to cooperate with or tolerate the treatment, could not understand its purpose, and could not cope with the ensuing pain and discomfort. Both of these physicians had experience treating mentally retarded persons with dialysis, with apparent success in several cases, but deemed it medically inappropriate for R.H. The consultant physician felt it would be "cruel and unusual punishment" to subject her to dialysis.
In addition to these several opinions, the judge received the recommendation of the attorney who had been appointed R.H.'s guardian ad litem, whose investigations led him to conclude and recommend that the substituted judgment decision should be against dialysis treatment. He acknowledged, however, that in reaching this determination he had met R.H. only twice; had never discussed or attempted to communicate with her regarding either her illness or the proposed treatment; could not resolve the conflicting opinions of the several physicians; and had therefore given paramount weight to the preference manifested by her family that she not receive the "unpleasant" dialysis treatment. Although the guardian ad litem observed that it probably made sense to attempt a brief trial of dialysis treatment, he ultimately decided not to recommend it primarily because he felt obliged to defer to the
Based upon all of this evidence, the bulk of which he set forth in findings, the judge made the ultimate finding (number 55) that R.H.:
He went on to restate the proper legal framework of decision in substituted judgment cases, but then concluded, with no intermediate analysis, that "if suddenly competent [R.H.]would choose to forego the provision of dialysis." He also concluded that no compelling State interest overrode this substituted judgment. Our review of the entire record before the Probate Court convinces us that these conclusions and the process by which the judge reached them were erroneous as matter of law.
2. The applicable law. The Supreme Judicial Court has recently provided us with a useful restatement of the basic principles that must govern a substituted judgment inquiry once the issue of incompetence has, as here, been determined:
Care & Protection of Beth, 412 Mass. 188, 194-195 (1992).
The court has carefully described the process, as well as the substance, of a substituted judgment determination. The judge must document his analysis of the various relevant factors not merely by making specific written findings of fact on every material issue, as would normally be required. See
The judge's effort, conscientious as it was, unfortunately fell short of satisfying these exacting standards.
a. The patient's expressed preferences. Although the Supreme Judicial Court has not mandated any formula establishing the relative weights of the relevant substituted judgment factors, either generally or in any individual case, it has provided sufficient guidance to satisfy us of the nonpareil significance of the consideration that is always first enumerated, the patient's expressed preferences. That primacy flows directly from the fact that "the primary goal of the substituted judgment standard is `to determine with as much accuracy as possible the wants and needs of the individual involved.'" Brophy v. New England Sinai Hosp., Inc., 398 Mass. 417, 433 (1986), quoting from Superintendent of Belchertown State Sch. v. Saikewicz, 373 Mass. 728, 750 (1977).
Even if the patient has been "profoundly retarded and noncommunicative [her] entire life ... both the guardian ad litem in his recommendation and the judge in his decision [must]... attempt[ ] to ascertain the incompetent person's actual interests and preferences." Saikewicz, 373 Mass. at 751-752. "[T]he effort to bring the substituted judgment rule into step with the values and desires of the affected individual [however retarded or incompetent] must not ... be abandoned," id. at 751, because "[her] expressed preference `must be treated as a critical factor in the determination of
The judge's findings omit entirely the issue of R.H.'s expressed preferences regarding her illness and treatment options. The record is devoid of evidence that any attempt was ever made to discuss those matters with her. Neither the judge nor the guardian ad litem appears to have inquired beyond the conceded fact of R.H.'s mental incompetence. Decisional authority, however, requires further probing, since even a legally incompetent, mentally retarded individual may be capable of expressing or manifesting a choice or preference in such situations. See Matter of Moe, 385 Mass. 555, 567-568 (1982); Matter of Hier, 18 Mass.App.Ct. 200, 209 (1984); Matter of Moe, 31 Mass.App.Ct. 473, 478-479 (1991).
The issue of the ascertainment of R.H.'s preferences is especially significant in the present circumstances. Unlike virtually every prior case in the area, the patient here is neither comatose, vegetative, brain dead, or otherwise incapable of communication or volitional activity. To the contrary, the evidence and findings show that R.H. is not merely capable of some degree of communication by speech and gesture, but in fact does communicate more or less successfully in her restricted circumstances. She has further exhibited the capacity to understand to the extent of having been fully cooperative with every medical and dietary treatment in her past, including invasive and prolonged interventions. Furthermore, her history of interaction with others and her outward observable behavior, including a record of successful adaptation to change and participation in many enjoyable activities, offer powerful, objective evidence of her desire to continue living — a desire that our law essentially presumes in circumstances such as these. See Guardianship of Roe, 383 Mass. at 447.
Against this background, it was doubly important to investigate R.H.'s possible preferences, because the substituted
b. Impact on patient's family. The guardian ad litem appears effectively to have delegated the treatment decision to R.H.'s mother and family by giving essentially outcome-determinative deference to their anti-treatment preferences. This approach did not discharge the guardian's obligation diligently to "present to the judge, after as thorough an investigation as time will permit, all reasonable arguments in favor of administering treatment to prolong the life of the individual involved." Saikewicz, 373 Mass. at 757. Matter of Spring, 380 Mass. 629, 641-642 (1980). To the extent that the judge relied on the guardian ad litem's no-treatment recommendation — and that is unclear, although the judge included that recommendation as a basis for his ultimate finding — such reliance was inappropriate. See id. at 630. ("[I]t [is] error to delegate the [treatment] decision to the attending physician and the [incompetent] ward's wife and son").
Further, there is no evidence in the record to support the finding that the success of R.H.'s dialysis would depend on the support and participation of her family, none of whom appears from the record to have been involved in her prior medical treatments. Such evidence as exists suggests that it would be someone involved in the ongoing care of R.H., probably a Fernald staff member, who would assist or participate in the course of the dialysis. Finally, there is nothing in the record to establish the need for R.H.'s mother personally to attend each of her treatments, a factor which the judge may have found significant, since he noted that the mother did not think she "could handle" such a burden. If these considerations regarding R.H.'s family received weight in the ultimate finding, it would have been inconsistent with the admonition to "be careful to ignore the desires of institutions and persons other than the incompetent `except in so
c. Prognosis without treatment. The judge observed that R.H.'s death was inevitable within three years, and perhaps much sooner, without treatment. However, no specific findings appear regarding the relationship of this factor to the critical issue of R.H.'s preferences or regarding its significance in the over-all mix and balancing of considerations that gave rise to the ultimate finding and conclusions. The "probab[ility] that most patients would wish to avoid a steadily worsening condition," Rogers, 390 Mass. at 506, as well as the need to ascertain to the extent feasible the unique perspective of the patient involved, id., required examination of this factor with greater precision and explicitness.
d. Prognosis with treatment. The present situation is additionally unlike the vast majority of substituted judgment cases because the medical testimony was not uniformly consistent with the judge's critical ultimate findings. Contrast, e.g., Matter of Spring, 380 Mass. at 640 (in which the medical consensus was that continued dialysis not only exacted a significant physical toll on the seventy-nine year old senile and disruptive ward, but also offered no hope whatsoever for improving either his mental or physical condition, or the "quality" of his life, which continued to deteriorate despite the treatments). See also Matter of Spring, 8 Mass.App.Ct. 831, 838 (1979), S.C., 380 Mass. 629 (1980). Here, R.H.'s two treating physicians and a dialysis expert
Beyond stating the respective positions of these physicians, the judge provided no discussion or analysis of the contending medical opinions. The findings do not reflect whether he simply disregarded the opinions of the pro-treatment physicians in favor of those opposed to dialysis, or gave more weight to the latter for some particular reason. Nor do the findings indicate that the judge gave any consideration to the implications of the fact that the two anti-treatment physicians had personally enjoyed apparent success in treating other mentally retarded patients with dialysis, or to the question whether those experiences yielded any insights on the issue of the appropriateness of dialysis for R.H.
The ultimate finding, that R.H. could not cooperate with or tolerate and would not benefit from dialysis, was not expressly related to any of the medical evidence and does not reflect the explicit effort the governing standards require in order to assay divergent medical opinions, to determine their relative weight, to balance them carefully, and to specify which ones the fact finder relies on and why. Such painstaking analysis is in order not only because of the serious nature of the decision involved, but also because of the very fact that "professional opinion may not always be unanimous regarding the probability of specific benefits being received by a specific individual upon administration of a specific treatment." Guardianship of Roe, 383 Mass. at 448. The judge's conclusory ultimate finding (no. 55) and his legal conclusion based upon it (no. 16), exercising substituted judgment against dialysis treatment, accordingly cannot stand.
On the issue of prognosis with treatment, the findings may be additionally faulted for their incompleteness with respect to the issue of R.H.'s possible treatment by kidney transplantation.
Finally, despite the need to weigh each benefit of the proposed treatment against any disadvantages, the findings do not undertake such balancing, nor fully discuss how R.H. would respond to the proposed treatment. Against the background of findings that R.H. had no medical conditions contraindicative
3. Disposition. The judgment is vacated, and the case must be remanded to the Probate Court for further findings and, if necessary, further evidentiary presentation, in light of and consistent with this opinion. We do not have to belabor the obvious by emphasizing that time is potentially crucial in this situation, and such further proceedings should take place at the earliest possible moment and with the utmost expedition.
In the meantime, we conclude that the present situation is of such urgency and the risks posed by further delay so imminently life-threatening
We make this order primarily on the basis of our conclusion that the judge's decision against undertaking trial dialysis is unsupported by the evidence and clearly erroneous, for the reasons that it failed to accommodate the State's overriding interest in the preservation of life
We shall retain jurisdiction over this matter pending the outcome of the remanded proceedings in the Probate Court and further order of this court. Any party may petition this