Reverence for Life in Clinical Practice

C. D. Bessinger, Jr MD

Reverence for Life in Clinical Practice. J SC Med Assoc. 1987, February. 83: 69-71.
(c) SC Medical Association. Internet publication by permission.


The usual algorithms for clinical decision-making are in a sense "reductionist". They mostly rely on identification and classification of a problem according to its constituent parts, and attempt to follow with ever-narrowing focus a branching network ("decision tree") toward a precise protocol for action in the particular case. Such a "rules-based" method may be quite helpful in dealing with well-structured problems in simple systems. Yet reductionist methods are not as well-suited to dealing with interacting systems or poorly structured problems. [1]

The clinical case which presents an ethical challenge is typically quite complex, and places the decision maker in a field influenced by many interacting forces. The principle forces are: science (the full spectrum of knowledge bearing on the problems), technology (the tools available and the pressure to use them), economics (the costs and benefits to all concerned), and law (the rules and regulations defining limits). Of course in this context, ethics refers not to a code of rules, but to the whole enterprise of making correct decisions.

In the clinical situation, the lives of the patient, clinicians, family members and others are all interrelated. All of the "forces" mentioned above bear in some measure on each of them. The system is too complex to yield "correct decisions" from a structured protocol alone. In the complex system, the decision maker is concerned less with the "parts" than with the whole. The ethical thought system becomes not reductionist, but holistic or global. It must be developed from an ethical principle which defines the attitudes of all involved and at every level. It must govern the whole field and provide the basis for self-testing of proposed solutions.

In a recent communication [2], this author examined the application of Albert Schweitzer's philosophy of reverence for life to current problems in medical ethics. Reverence for life is an ethical attitude that arises from the awareness of one's own existence and of "will-to-live". This innate and unconscious dynamic for survival is shared by all life. All life is complexly interrelated in its dependance on other life.

Ethics consist in becoming conscious of this interrelatedness, and in "experiencing the compulsion to show to all will-to-live the same reverence as I do to my own." [3] Further, it is good, not simply to preserve and to promote life, but also "to raise to its highest value life which is capable of development." [4]

Can such an "attitudinal ethic" be translated into a practical guide for ordinary decisions in everyday clinical practice? In this study we shall analyze a complex clinical situation in the light of Schweitzer's concept of reverence for life.

Case Report

A white male was born in 1956 after a normal gestation and an uncomplicated labor. He was the only child of his 31 year old mother and 38 year old father, and weighed 7 lbs 1 oz (3.2 kg) at birth. At birth he was considered normal. At age six weeks cranial enlargement was described, but there was no other evident congenital deformity.

At age 26 months, a Holter valve was implanted when rapid growth in head size followed a period of stability. It functioned poorly and was revised at age 28 months. The child had not sat unsupported or crawled. His extremities were "stiff", but without evidence of spasticity, and there was no evident motor defect. Focal motor seizures were recorded at age 3 years, and recurred periodically throughout his life.

During his childhood and teenage years, the patient continued to be cared for by his parents at home, though there were several hospital admissions for pneumonia. He gradually developed multiple secondary deformities including extreme kyphoscoliosis and limb contractures. He was incontinent of urine and feces, and required total care. He developed some ability to talk, and eventually received a certificate of completion of twelve years of home instruction.

At age 22, during a hospitalization for pneumonia, emergency ventilator support via endotracheal intubation was instituted. Tracheostomy was done later, and the patient was eventually weaned from the respirator and discharged. Feeding was maintained by nasogastric tube after feeding gastrostomy proved technically impracticable due to the anatomic distortion. After discharge home, he returned to oral liquid formula feedings but continued to require the tracheostomy due to sleep apnea and to increasingly severe pulmonary restriction by the kyphoscoliosis.

At age 29, a custom length tracheostomy appliance was ordered because weight gain had exacerbated the distortion of the neck and prevented maintaining a proper fit of standard appliances. The patient became apneic enroute to the hospital for that replacement procedure, but was resuscitated by his parents. The new appliance functioned well, but the patient could not be discharged due to his restrictive impairment.

That impairment lead to increasing hypoxia and hypercarbia, and the patient remained in hospital until his death two months later. At the parents' insistence, the patient was placed on the ventilator. Several attempts to wean him were unsuccessful, and subsequent aggressive efforts in the intensive care unit included venous cutdown, multiple antibiotics and vasopressors, multiple consultants, and multiple monitoring modalities.

Case Analysis

This severely handicapped patient far outlived his life expectancy due in large measure to the dedicated and loving care of his parents. In their efforts they were motivated by, and sustained by, their strong fundamentalist faith. There seems from the medical record to have been an initial reluctance to seek neurosurgical consultation, in part in expectation of a miracle. Yet in subsequent years, there was full reliance on medical skill and technology, and firm insistance that every means of survival be sought. The parents maintained throughout that "everything possible should be done." It was.

The ethical issues raised in the earlier years of this patient's life were not particularly complex. The hydrocephalus was palliated by the available appropriate procedure, and the situation did not present critical "Baby Doe" issues. The family made the adjustments necessary to deal with a difficult situation, with support from various specialists as necessary.

The author made first contact with the patient at the time of his tracheostomy. The patient was already being ventilated by endotracheal tube in response to acute respiratory failure, with the prospect for weaning which was eventually accomplished. There was considerably more discussion about the advisability of attempting gastrostomy which was recommended by the attending physician and readily accepted and advocated by the parents. The surgeon's (author's) note reflected concern that the extensive deformity raised the operative risk in an irreversible situation, and noted that the (eventually unsuccessful) attempt was considered more palliative for the parents than the patient. However, the parents viewed the prospect of not attempting something that might be helpful as a threat to the patient's survival.

The ethical issues presented during the last few months of life were considerably greater. The paramount ethical issue in patient care is the character of the professional approach to the patient and the family. For most of the physicians and nurses caring for him, the patient was the most deformed they had encountered, yet they responded effectively and supportively.

The more complex issues dealt with treatment choices. During the time of multiple adjustments of tracheal appliance, attempts were made to educate the parents that the respiratory problem was not only irreversible but progressive. The response was to urge continued efforts, and to insist on ordering a customized appliance. Yet even the design of such an appliance presented an ethical question. Should the device be uncuffed to maintain an airway so long as the patient could breathe naturally, or should it be cuffed to facilitate eventual artificial ventilation?

Despite the uncuffed tube, ventilation was eventually initiated at the insistance of the parents. Yet how invasive and how aggressive must one be in an irreversible situation? To what extent may the parent's wishes override medical judgement about what is effective treatment? To what extent is an ineffective treatment harmful? In this context, is isolation from parental support of an aware and dependant patient in an intensive care unit a valid harm? Is expenditure for ineffective care a valid harm?

Discussion

The parents of this patient did not specifically express their philosophy in terms of "right to life", but the rigid insistance on efforts toward survival at all costs seem consistant with that approach. The ethic of "right to life" focuses on the immediate clinical problem of the particular patient, and chooses specific measures according rules of protocol. Reduced to its most basic "rule", the ethic of "right to life" asks whether the patient is alive. If so, all measures must be taken in the hope of survival.

By contrast, the ethic of "reverence for life" as presented by Schweitzer is more reflective. While no less dedicated in its respect for life, it sees individual lives within the context of all life. It realistically accepts life and its limitations, and the limitations of medical therapy. It acknowledges that each life interacts with other life. It accepts that since all lives must live at the expense of other life, choices must inevitably be made. It governs the attitude in which choices are made. It provides the standard against which choices may be evaluated.

Solving clinical problems in accordance with reverence for life requires posing appropriate questions rather than applying rules. It does not rely on purely subjective determinations such as "quality of life" or utilitarian rating scales. Reverence for life is instead an attitude which prompts asking whether a proposed action will help promote, preserve or develop life. It asks whether some alternative would be more effective. It asks to what extent an action will harm the life in question, and other lives.

If all parties to this patient's care, including the parents, had proceeded in accordance with "reverence for life" rather than "right to life", the results of treatment would have been the same: the patient would have died of his irreversible disease. However, there could have been important differences in his clinical management.

The patient's condition had been acknowledged to be irreversible and progressive at the time mechanical ventilation was initiated. At that point, "reverence for life" would have accepted with equanimity the limitations of life processes and of therapy. It would have sought to support the dignity of the remaining life, while seeking to avoid the harms inherent in inflicting ineffective and unnecessary interventions. Such harms include the pain and discomforts of the treatments themselves, the emotional pain of isolation from family support, and the useless expenditure of financial resources of family and society.

There is of course a critical distinction between witholding a treatment that may serve to promote or preserve life, and witholding one because it is judged to be ineffective for that purpose. Reverence for life always seeks to preserve life and never seeks the taking of it. Yet it understands that life processes and medical treatment have their natural limits, and does not confuse the witholding of an ineffectual treatment with the taking of life.

The ethic of reverence for life is well-suited to deal with complicated clinical problems because it is derived from awareness of the interactions of all life. The very breadth of its global view forces a new approach to the traditional problem-focused clinical encounter. Considering the global or holistic view does not provide an easy formula for ethical problem-solving. It does, however, provide a helpful perspective from which to make "correct decisions" in today's complex clinical situations.


References

1. Pople HE Jr: Heuristic Methods for Imposing Structure on Ill-Structured Problems: The Structuring of Medical Diagnostics. In Artificial Intelligence in Medicine (Szolovits P, editor). Boulder: Westview Press, 1982.

2. Bessinger CD Jr: Medical Ethics and Reverence for Life. Journal of the South Carolina Medical Association. (Accepted for publication June 1986.)

3. Schweitzer A: Philosophy of Civilization (1923). New York (Macmillan) 1949. Reprint 1981, Tallahassee (University Presses of Florida). p 309.

4. Schweitzer A: Out of My Life and Thought. New York (Henry Holt) 1933. p 188.


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