Cancer Cachexia and its Impact on Patient Dignity: What Nurses Need to Know

Abstract

Noted physician, Sr. William Osler, is credited with saying, “Care more particularly for the individual patient than for the special features of the disease”. Osler understood that each patient for whom we care is first and foremost a person, who also happens to be living with a particular illness. In addition to understanding the nature of the patient’s illness, therefore, it is also critically important that we come to understand the patient’s unique story and set of circumstances. Doing so allows us to engage with patients in a way that affirms their sense of dignity and personhood. Drawing on the exemplar of cancer cachexia, this editorial reminds clinicians of the importance of Osler’s sage advice to attend to patient dignity and personhood, and provides nurses with direction about how they can do that in practice.

Nurses caring for those with advanced malignancies are likely quite familiar with the appearance of patients who have developed cancer anorexia-cachexia syndrome (CACS). These patients often look like victims of famine-skeletal and frail.[1] However, do nurses know how the changes in appearancepatients experience as a result of illness affects their sense of dignity — their sense of being worthy, honored, or esteemed?[2]

Research evidence can help clinicians understand the effect of disease-related variables on patient dignity. A cross-sectional study of 213 terminally ill cancer patients rated their sense of dignity, pain and symptom distress, independence in activities of daily living, quality of life, desire for death, hopelessness, and anxiety. Patients who indicated that loss of dignity was a great concern reported significantly more physical and psychological symptom distress, heightened dependency needs, and loss of will to live. The most significant predictor of a decreased sense of dignity, however, was perceived change in appearance.[3] Given its impact on appearance, individuals with CACS are clearly at risk of having their sense of dignity eroded.

What can nurses do to help support patient dignity? We need to be mindful that how patients come to see themselves is very much affected by the nature of the interactions they have with the clinicians who care for them.[4] Research speaks to the need to be sensitive to issues of privacy, communicate respectfully, and reassure patients that they are not a burden to care for.[5,6,7] We need to acknowledge the patient as a person not merely a disease. To accomplish this, nurse scan ask the patient dignity question (PDQ): “What would you want any staff member walking in this room to know about you as a person?” Research has been conducted examining the impact of this question on patients and families, and its influence on health care providers (HCPs). Chochinov et al. invited 66 palliative care in-patients and 60 family members to respond to the PDQ.[8] After summarizing the responses and ensuring their accuracy, permission was requested to place the answers to the PDQ on patients’ charts. The majority of patients and families (93%) felt that the information was important for HCPs to know and 99% recommended the PDQ for others. A total of 137 HCPs completed evaluations of 293 individual patient PDQ summaries. The PDQ summaries taught HCPs things they didn’t know about the patient (90%), affected them emotionally (64%), and influenced their sense of empathy (59%) and their care (44%).[8]

Bolstering patient dignity by attending to personhood is neither expensive nor time-consuming. It requires a willingness to transcend impersonal routinized approaches to care so that patients feel valued, respected, and cared for. Is not that what nursing is all about?