September’s “Ethics Forum” presented a complex case that explored the rheumatologist’s role in end-of-life decisions. This month, we discuss the case and its implications for physicians who treat chronic illness.
Concentrated in the outpatient arena, the rheumatic diseases are widely seen as archetypical chronic diseases, evolving gradually, often imperceptibly, over many years. Infrequently taxing the inpatient domain of medical practice, these patients only enter the world of intensive care in unusual circumstances. Nonetheless, owing to the multisystem nature of these disorders, as well as the application of increasingly aggressive therapy, life-threatening complications may arise. The clinical scenario discussed in September’s “Ethics Forum” serves as a stark illustration of such circumstances. Compounding the therapeutic challenges arising in this patient’s care, important ethical matters are also evident, so this case provides an opportunity to review a number of relevant concepts from the vantage of the medical ethicist.
Over the last 30 years, ethics consult committees and consultation services have developed approaches for dealing with ethical issues that arise in clinical practice. Indeed, the ICU is a fertile source of such consultation. For instance, in the case presented, consider the relevance of such ethically charged matters as medical futility, the limits of medicine, decisions to forego life-sustaining treatment, surrogate decision making, and the just allocation of resources.1,2 These are often the domain of the medical ethicist. More recently however, when the ICU ethos of “rescue” has been finally exhausted, palliative care specialists are increasingly consulted to help bridge transitions of care.
Owing to the patient’s age, the acuteness of her decompensation, and the family’s wishes, her care was aggressive. On purely clinical grounds, this approach was believed justified given her historically long period of therapeutic responsiveness. Heart–lung transplantation, the ultimate goal of her care, was believed to be a reasonable endpoint because it has been successfully employed in patients with comparable degrees of pulmonary hypertension.3 Nonetheless, after the patient had received weeks of ICU treatment, a collective view emerged among her caregivers. The limits of effective medicine had been reached and a shift in care to more palliative approaches was indicated.
Although commonplace in the ICU setting, this type of transition is often difficult because it involves a major reorientation of the goals of care (relinquishing of the notion of cure), but also the introduction of new caregivers. In contrast to ethics consultation, with its focus on conflict resolution (and involving no responsibility for care), palliative care introduces new members to the medical team, specifically individuals who will be assuming primary responsibility for the patient’s management. Changeovers of this nature may be met with suspicion, but in many circumstances, the ethos of palliation is most appropriate. Defined as “the comprehensive management of physical, psychosocial, spiritual, and existential needs of the patients (and families) facing life-limiting illness,” palliative care services, when broadly defined, offer vital expertise that goes beyond the relief of distressing symptoms. Data support that these services decrease the burden on patients with life-limiting illnesses.4,5
This case not only exemplifies a number of the common ethical challenges arising in the ICU, it also illustrates some of the problems inherent in end-of-life decision making. While not frequently encountered in the day-to-day practice of the rheumatologist, we should be familiar with these concepts because they may arise in the setting of rheumatic disease care.
Dr. MacKenzie is associate professor of clinical medicine and public health at Weill Cornell Medical College, Hospital for Special Surgery, New York.
References
- La Puma, Stocking CB, Silverstein MD, et al. An ethics consultation service in a teaching hospital: Utilization and evaluation. JAMA. 1988;260:808-811.
- Aulisio MP, Chaitin E, Arnold RM. Ethics and palliative care consultation in the intensive care unit. Crit Care Clin. 2004;20:505-523.
- Thacker J, Toyoda Y. Lung and heart-lung transplantation at University of Pittsburgh: 1982-2009. Clin Transpl. 2009:179-195.
- Higginson IJ, Finlay IG, Goodwin DM, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002;23:96-106.
- Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003;25:150-168.
