The Concept of SolidarityThe term solidarity has been defined and employed in various ways by bioethicists or other academics working on bioethical questions over the last two decades.
As per the working definition suggested in a report commissioned by the Nuffield Council on Bioethics, solidarity signifies “shared practices reflecting a collective commitment to carry ‘costs’ (financial, social, emotional, or otherwise) to assist others.”
The definition consists of three tiers starting with a conceptualization of how individuals come to engage in practicing solidarity. At this level,
solidarity comprises manifestations of the willingness to carry costs to assist others with whom a person recognizes sameness or similarity in at least one relevant respect … It entails the awareness of being associated—by choice, by fate, or other circumstances, with others. It is, … an instance of seeing one’s own potential or actual fate, or that of loved ones, in the fate of another.
Accordingly, in the current context, solidarity involves recognition of the respect(s) in which PLCC patients are similar to “us.” Such respects may be their being human creatures or their fate against which none of us is immune. A similar idea can be found in the Jewish thought as represented by the interpretation held by many commentators to the commandment “love thy neighbor as thyself”—“love thy neighbor (for) he is like yourself.”
The principle of solidarity is enacted especially with the most vulnerable in society, and in particular with those who cannot help themselves.
Obviously PLCC patients are totally dependent on other people to care for all their needs; but, on the other hand, by definition they are (or are presumed to be) unaware of their situation, nor do they experience their weakness and dependence. Paradoxically, patients who have no cognitive capacities at all may be less vulnerable than others, less incapacitated. For example, the elderly demented are considered as “a weak group who cannot always administer their personal freedom on a par with others”
; but PLCC patients are most likely unable to form any autonomous will, thus they cannot feel deprived of the ability to administer their personal freedom. What follows is that we cannot tell if they would prefer to die or to be kept alive in their state; if life has any benefit for them, or if they would be better off dead. These circumstances cause doubts as to what course of action should be taken to answer the needs of these patients.
Caring for the worst-off is necessary for us as a society. “We care for the neediest because need is a basis of moral duty; the public weal is grounded in this moral sentiment.”
This moral sentiment is known in European ethics as the fundamental value of solidarity;
in American bioethics it may be referred to as the principle of equality,
the commitment to equal human worth stands as the basis of a welcoming community—one that assures all living human beings, even those in a disabled or diminished state, that their lives still have meaning, worth, and value for all of us. It assures them that we would not prefer them dead even if we would like to see an end to the suffering that marks their present condition.
Apparently, the principle of equality requires society to respect the full dignity of PLCC patients. However, this may not be true for those who believe that “… for the human to be treated as a member in full standing of the human moral community—there must be integrated functioning of mind and body.”
At any rate, the principle of equality “still leaves us with the difficult discernment of deciding what is truly in the best interests of patients,” as written by Erik Cohen in relation to persons with dementia.
But, since we do not know most of the facts that are necessary to overcome this difficulty, we will try to seek guidance in further aspects of solidarity.
As indicated by Sass, solidarity “can also be used to identify interpersonal and professional duties and obligations that appeal to an ethos of behavior within that private or professional setting.”
As such, solidarity may well lead us to focus on our care for PLCC patients, especially the elderly with end-stage dementia, as a reflection of the ethos of our society. Do we wish to live in a society that cares only for those who are capable of communicating and expressing their needs, or in one that cares for all its members all through their life cycle? Do we prefer an ethos of caring for those who are not even aware of how weak and helpless they are as much as they would have been cared for had they been conscious, or an ethos of withdrawing sustenance or life-maintaining care or of caring for such people as if they were already dead?
As articulated by (former) Vice-President of the Israeli Supreme Court, Menachem Elon, in the leading case in the issue under discussion,
the ethos of Judaism is based on the concept of man’s creation in God’s image.
The Torah begins with this, and Jewish law deduces from it fundamental principles about human worth—of every man as such—his equality and love, … we do not have the authority, nor do we have the right, to distinguish in any way whatsoever with regard to human worth between rich and poor, healthy and disabled, sane and insane. All human beings, because they were created in G-d’s image, are equal in their worth and quality.
This principle has been accepted and is also used as a basis for the supreme value of human life in many different cultures and legal systems. It should be noted that this principle is not identical to the paradigm of vitalism according to which life should be maintained always, at any expense. Moreover, as Kasher says,
we have a “preciousness” conception of human life that does not rest on any view of the intrinsic value of human life or of a divinely endowed value of human life. This conception rests on the simple observation that being alive is a precondition for being a participant in societal arrangements that embody values and norms and distribute rights and duties. … According to this conception, protection of human life is protection of what is a necessary element of any valuable societal arrangement.
In other words, any society which values solidarity should protect the life of all its members. Even if PLCC patients will not be deemed as “persons” in the full sense of the word, their moral status is very similar to a person, and we do have at least secondary moral duties towards them, since we encounter them “at a very high point on the slope of dignity protection.”
Applying the Concept of Solidarity to the Medical Care of PLCC Patients
The direct conclusion from the analysis above is that solidarity entails a moral obligation to give PLCC patients optimal medical and nursing care, using the same medical judgment and considerations as for any other dependent patient. This involves two perplexing issues—the suffering and dignity of the patient—which must be addressed in order to determine whether and which life-sustaining treatment is indeed the “best care” for a given patient (according to Cohen, “best care” encompasses both the solidarity and obligations of the caregiver to the patients, and the “best interests” of the patient).
Life-sustaining treatments range from antibiotics and artificial nutrition and hydration to mechanical ventilation and dialysis. Each intervention should be considered separately according to the patient’s condition and prognosis, applying relevant evidence-based medicine. This means that the duty to sustain the lives of PLCC patients does not necessarily entail an obligation to use every available modality in every case.
If we accept as a guiding principle that the fact that the patient is mentally deficient does not make his/her life less worthy, these considerations should be taken into account just as they are considered for cognitively competent patients. Thus, any suffering entailed in the treatment and its outcomes should be given due weight. Certainly, if the patient is enduring pain and suffering that cannot be alleviated, it may be permitted and in certain circumstances even obligatory to refrain from prolonging life. However, in the case of PLCC patients, there is no indication that being in this state as such involves suffering; however notwithstanding, when a PLCC patient seems to be in pain or to be suffering otherwise, this should be adequately treated.
Looking further into what might positively serve the well-being of the patient, it would be advisable to use the formula suggested by Jox,
according to which, life-sustaining treatment should be continued if the well-being associated with this option is superior to the well-being associated with allowing the patient to die. Due to the epistemic gap regarding the well-being of PLCC patients, just as the value of (their) life after death, to which Jox relates in his formula, and since the only known parameter in the formula is that life in itself has a positive ethical value, it turns out that life-sustaining should be presumed to serve better the well-being of these patients. Moreover, compassionate care for such unresponsive patients is an expression of unconditional love, which is a great privilege for the caregivers, which might also give the patients an opportunity to experience (if and as much as they can) the feeling of this rare kind of love.
The Dignity of the PLCC Patient
The dignity of the PLCC patient is a tougher issue, due to both the calls for “death with dignity” and the high value placed by Western society on cognition as an integral aspect of an individual’s dignity (in accordance with the Kantian reading, which sees dignity as based on rationality).
However, dignity has other interpretations, relating to all human lives being created in the image of God, and having a human genome.
In this regard it would be worthwhile to refer to two authorities from two different cultures that follow the principle of the equal worth of all human lives:
Nordenfelt described four notions of human dignity: the dignity of merit, the dignity of moral or existential stature, the dignity of identity, and the universal human dignity (Menschenwürde).
The basic notion of dignity, Menschenwürde, which is the grounds for all human rights, pertains to all human beings to the same extent and cannot be lost as long as the person exists. By definition, the dignity of PLCC patients in this sense is definitely preserved. “According to this interpretation, loss of dignity cannot be used as an argument for euthanasia in persons with severe dementia.”
Moreover, it may be plausible to argue that the same is true for loss of dignity according to the other interpretations just as well. Loss of dignity of merit is a common phenomenon, and loss of dignity of moral stature also happens sometimes, but by no means can they be used as an argument for euthanasia, not even in its passive form. Both kinds of dignity can come and go, but they can, on the other hand, continue to exist to some extent despite loss of cognitive capacities, at least as they do for the dead.
Loss of dignity by PLCC patients relates to “dignity of identity” which “is tied to the integrity of the subject’s body and mind, and in many instances, although not always, also dependent on the subject’s self-image.”
Yet, under this definition there is no difference between PLCC and other disabled patients! The latter’s loss of dignity may be even harder due to their preserved self-awareness. Hence they should be treated similarly.
Menachem Elon, of the Israeli Supreme Court, in citing the words of Ramsey, “the phrase dying with dignity is a contradiction in terms,” stressed that “There is a conflict between the death of a person and the dignity of a person. By contrast, the life of a human being is itself the dignity of man, and there is no conflict between the life and dignity of man, nor could there be a conflict.”
Also, “Protection of human life is one dimension of protection of human dignity.”