Caregivers’ Ability to Deal with Suffering

Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile

In his article "Is Suffering the Enemy?" (Hastings Center Report, 2002, 32, 2: 40 – 44) Gunderman makes a challenging statement: "Contemporary medicine’s ability to ‘fix’ certain types of suffering has produced a gradual shift in caregivers’ attention toward those types of suffering that are most fixable. Physicians tend to feel most competent when addressing conditions that they can understand anatomically, physiologically, and biochemically – the conditions for which pharmacological interventions are most readily available." (p. 42).

Even though Gunderman is referring to a general tendency in contemporary medicine, his statement invites us to reflect on one of the dangers to which palliative care may be exposed today. Palliative care would loose its very identity if it is reduced to the "technique of controlling symptoms". To understand the care for the terminally ill as a mere technique would endanger the innovative potential entailed in palliative care’s holistic approach to the person. Over the past decades palliative medicine has learned to effectively control a variety of symptoms. But many aspects of suffering have proven more resistant. Medications have not assuaged the helplessness and frustration that accompany end stage disease. And perhaps one of the most disturbing aspects of end stage disease is the patient’s sense of loss of personal integrity and independence. And to pretend that this does not exist may result in an insidious form of degradation, enmeshing both caregivers and patients in a web of mutual deception. "What torments Tolstoy’s Ivan Illich most is not the physical pain he suffers, but the web of deception that ensnares him, his family, and his caregivers […] To deny suffering is to trivialize another person’s experience, to diminish its scope and lessen its significance. It is to falsify and invalidate the other person as a person" (p.43 – 44).

When patients complain about issues like loosing their ability to walk, to prepare their own meals, to feed themselves, dress themselves, handle their toileting, etc., caregivers may be tempted to minimize or even ignore these complaints. But these issues represent important sources of suffering to patients. A failure to acknowledge and appreciate the depth of a patient’s suffering may even aggravate the situation. It is therefore important to constantly check the ability of palliative caregivers to deal with the various kinds of sufferings experienced by terminally ill patients.

In the context of terminally ill patients, we may regard ‘depression’ as a medical condition warranting antidepressant therapy. But it is important not to forget that ‘anguish’ and even ‘despair’ can be justifiable responses to a difficult human situation. Experience shows that patients are able to endure great sufferings if they can discover a meaning, a purpose. And conversely, lesser degrees of suffering may be intolerable is the patient regards them as essentially meaningless. Thus, palliative caregivers have to keep in mind that it is not suffering what destroys patients, but suffering without meaning. Indeed, perhaps the most devastating aspect of despair is the inability to find meaning. Hence, even though symptom control is an important aim of palliative care, it is not enough. The palliative care team is also called to help the patients in their search for meaning. And in order to be able to help others in this search, each member of the team should be first able to deal him/herself with suffering.

Suffering is not something we can welcome, and we would probably condemn anyone who sought to promote it. And yet we cannot really claim that it is all bad. "What of the patients and families who look back on periods of suffering with a sense that they learned something trough the course of their travails? What of the countless people who have emerged from suffering with their outlook on life transformed – the sense that, by virtue of having endured, they are actually leading more meaningful lives? Is this merely a self-serving reflex [...]? Or is the larger truth to be found in the words of Aeschylus: ‘It is only through suffering that we achieve wisdom’ (Agamemnon, ll. 177 – 78)?" (Gunderman, p. 41). Ironically, it is sometimes only in the midst of sorrow that we bring forth the greatest truth we have to share.

Thus, even in irremediable suffering there is something noble, to which caregivers should attend. Suffering is part of the human condition and should be seen more as a burden to bear than as an irritation to be cast off or ignored. Hence, it would be wrong to say that virtue consists in suppressing suffering. Indeed, efforts to excise suffering pharmacologically sometimes denigrates the whole experience. Caring for terminally ill patients does not always mean relieving all their sufferings; sometimes it means sharing their suffering, helping them to shoulder the burden.

Dr. Paulina Taboada, MD, PhD
Palliative Care and Bioethics