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Caregiver burden and the medical ethos

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Abstract

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos should indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases.

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Notes

  1. It is customary in the literature to distinguish between formal and informal caregivers. Unlike formal or professional caregivers their informal counterparts typically are neither paid nor trained for their job (see also "Caregiver burden in the literature" section). In this essay we will be dealing with informal familial caregivers only.

  2. As we use it here, “caregiver burden” denotes the negative effects of the activity of caregiving on the carer’s well-being or quality of life. This definition is bound to be controversial since people widely disagree over the right definition of caregiver burden; (cf. Bastawrous 2013, p. 433). Our definition mirrors an observation made by George and Gwyther,. They write that “‘caregiver burden’ and ‘caregiver well-being’ are but opposite sides of the same coin” George, Gwyther (1986, p. 253). Although we believe that this idea is basically correct, we will not defend it here.

  3. We will use the term “medical” in connection with terms such as “ethos”, “obligation”, or “decision” as referring to physicians only.

  4. Exceptions can be found in feminist and care ethics as well as in intercultural bioethics. For reasons of space we won’t consider them here and concentrate on the mainstream of western bioethics.

  5. “Patient-centeredness” sometimes marks a moral claim about the doctor-patient relationship demanding that physicians should focus on their patient’s wants and not on what they believe the patient should want; cf. e.g. Duggan et al. (2006). For obvious reasons this usage is different from the one we are discussing.

  6. PC2 to PC4 are formulated as necessary conditions since we take it that physicians are not required to help suffering caregivers against their will. That is, we assume that the ethical legitimacy of medical interventions in favor of caregivers presupposes their informed consent.

  7. Even if helping the caregiver doesn’t harm the patient it might still harm the physician herself by, e.g., reducing her spare time. Although this consideration touches on an important ethical question, viz. that of ascertaining the right “work-life balance” for physicians, we will leave it aside in the present discussion.

  8. Chiong argues for the validity of such a claim to defend a specific solution to a problem in the ethics of clinical research; cf. (Chiong 2006, p. 41).

  9. A colleague of ours, a pediatrician, reported in private conversation that she couldn’t even imagine not to console the parents of seriously ill children.

  10. Beauchamp and Childress seem to agree; cf. (2013, p. 321).

  11. This would, to a certain degree, emulate what happens in palliative care teams already today, as one of our reviewers made us aware. In such teams not the physician but the psychologist or the social worker address the needs of the informal caregivers involved. We agree that such a division of labor could serve as a model for organizing future care for caregivers.

  12. One might think that suffering from marital problems shouldn’t be classified as caregiver burden since the latter is defined as suffering caused by the activities of caregiving (see above, note 2). But as we will presently explain, many marital problems arise from or are at least aggravated by activities of caregiving. Therefore we propose to subsume the marital problems the spouses in our study report under a wide notion of caregiver burden.

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Authors and Affiliations

  1. Institut für Philosophie, Universität Duisburg-Essen, Universitätsstr. 12, 45141, Essen, Germany

    Karsten Witt

  2. Forschungsstelle Ethik, Uniklinik Köln, Universitätsstr. 91, 50931, Köln, Germany

    Johanne Stümpel & Christiane Woopen

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  1. Karsten Witt
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  2. Johanne Stümpel
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Correspondence to Karsten Witt.

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Witt, K., Stümpel, J. & Woopen, C. Caregiver burden and the medical ethos. Med Health Care and Philos 20, 383–391 (2017). https://doi.org/10.1007/s11019-017-9757-2

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