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Kindness, humanity, and respect—the core values of medical professionalism—are too often being overlooked in the time pressured culture of modern health care, says HarveyChochinov, and the A, B, C, and D of dignity conserving care can reinstate them
The late Anatole Broyard, essayist and former editor of the New York Times Book Review, wrote eloquently about the psychological and spiritual challenges of facing metastatic prostate cancer. “To the typical physician,” he wrote, “my illness is a routine incident in his rounds while for me it's the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity . . . I just wish he would . . . give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.”1
Broyard's words underscore the costs and hazards of becoming a patient. The word “patient” comes from the Latin patiens, meaning to endure, bear, or suffer, and refers to an acquired vulnerability and dependency imposed by changing health circumstances. Relinquishing autonomy is no small matter and can exact considerable costs.2 These costs are sometimes relatively minor—for example, accepting clinic schedules or hospital routines. At other times, the costs seem incompatible with life itself. When patients experience a radical unsettling of their conventional sense of self3 and a disintegration of personhood,4 suffering knows few bounds. To feel sick is one thing, but to feel that who we are is being threatened or undermined—that we are no longer the person we once were—can cause despair affecting body, mind, and soul. How do healthcare providers influence the experience of patienthood, and what happens when this frame of reference dominates how they view people seeking their care?
Answering these questions begins with an examination of the relationship between patienthood and notions of dignity. Although the literature on dignity is sparse, it shows that “how patients perceive themselves to be seen” is a powerful mediator of their dignity.5 6 In a study of patients with end stage cancer, perceptions of dignity were most strongly associated with “feeling a burden to others” and “sense of being treated with respect.”7 As such, the more that healthcare providers are able to affirm the patient's value—that is, seeing the person they are or were, rather than just the illness they have—the more likely that the patient's sense of dignity will be upheld. This finding, and the intimate connection between care provider's affirmation and patient's self perception, underscores the basis of dignity conserving care.8
Yet, many healthcare providers are reticent to claim this particular aspect of care, which is variously referred to as spiritual care, whole person care, psychosocial care, or dignity conserving care.9 10 11 12 This reluctance is often framed in terms of lack of expertise or concern about how much time this might consume. Yet, when personhood is not affirmed, patients are more likely to feel they are not being treated with dignity and respect.13 Not being treated with dignity and respect can undermine a sense of value or worth.5 Patients who feel that life no longer has worth, meaning, or purpose are more likely to feel they have become a burden to others, and patients who feel they are little more than a burden may start to question the point of their continued existence.14 15 16 Redressing the “incongruity” that Broyard raises—that is, the separation of humanity and compassion from healthcare delivery—requires that “treatment of disease takes its proper place in the larger problem of the care of the patient.”16
The notion of dignity conserving care, while emerging primarily from palliative care, applies across the broad spectrum of medicine. Whether patients are young or old, and whatever their health problems, the core values of kindness, respect, and dignity are indispensable. Just as the simple “A, B, C” mnemonic (airway, breathing, and circulation) effectively summarises the fundamentals of critical care, an easily remembered core framework of dignity conserving care—the A, B, C, and D of dignity conserving care—may remind practitioners about the importance of caring for, as well as caring about, their patients.16
“A”—attitude—underscores the need for healthcare providers first and foremost to examine their attitudes and assumptions towards patients. Attitude can be defined as an enduring, learnt predisposition to behave in a consistent way towards a given class of objects (or people), or a persistent mental or neural state of readiness to react to a certain class of objects (or people), not as they are but as they are conceived to be. The perceptions on which attitudes are based may or may not reflect the patient's reality. For instance, might an assumption of poor quality of life in a patient with longstanding disabilities lead to the withholding of life sustaining choices?17 Might ageist assumptions mean that conversations about intimacy are rarely initiated?18 Is a health worker more likely to assume intoxication in a confused, homeless patient, before considering whether they have a metabolic disorder? Do people with chronic mental illness provoke assumptions about malingering or somatoform disorders, even before an appropriate medical examination has been done?
Examining attitudes and assumptions is a deeply personal task, requiring approaches suited to the individual (box 1). At a minimum, healthcare providers must ask some basic questions, meant to help them understand how attitudes and assumptions can influence the way they deal with patients. They are reminded that “what [they] believe about [patients] and their potential may affect them profoundly. The attitude of an expert is contagious and can become limiting.”19 As a case in point, inordinately high suicide rates were reported among Scandinavian patients with advanced cancer, who were offered no further treatment or contact with the healthcare system.20 While the rationale for this may have been based on considerations of resource allocation or medical futility, the psychological and spiritual fallout is clear: people who are treated like they no longer matter will act and feel like they no longer matter. In other words, patients look at healthcare providers as they would a mirror, seeking a positive image of themselves and their continued sense of worth. In turn, healthcare providers need to be aware that their attitudes and assumptions will shape those all-important reflections.
A change, or at the very least an awareness, of one's attitudes can set the stage for modified behaviour—the “B” of dignity conserving care. Once healthcare providers are aware that they play an important role in mediating patients' dignity, several behaviours should logically follow (box 2). Healthcare providers' behaviour towards patients must always be predicated on kindness and respect. Small acts of kindness can personalise care and often take little time to perform.21 Getting the patient a glass of water, helping them with their slippers, getting them their glasses or hearing aid, adjusting a pillow or their bed sheets, acknowledging a photograph, greetings card, or flowers—these behaviours convey a powerful message, indicating that the person is worthy of such attention. Such behaviour is particularly important when caring for patients with advanced disease “both because of the physical threats of dying and because of the challenge to our sense of self worth and self coherence.”22
Certain communication behaviours, as outlined in box 2, enhance the trust and connection between patients and their healthcare providers. Certain intimacies of care require special mention—taking the time to ask patients their permission to perform an examination will make them feel less like a specimen to be poked and prodded and more like a person whose privacy is theirs to relinquish under mutually agreed conditions. This quality of professionalism and connectedness also increases the likelihood that patients will be forthright in disclosing personal information, which so often has a bearing on their ongoing care.
Attitude and behaviour can be examined within the realm of the intellectual, but compassion, the “C” of dignity conserving care, requires a discourse about the healthcare provider's feelings. Compassion refers to a deep awareness of the suffering of another coupled with the wish to relieve it. Compassion speaks to feelings that are evoked by contact with the patient and how those feelings shape our approach to care. Like empathy (identification with and understanding of another's situation, feelings, and motives),23 compassion is something that is felt, beyond simply intellectual appreciation. Healthcare providers arrive at compassion through various channels (see box 3). For some, compassion may be part of a natural disposition that intuitively informs patient care. For others, compassion slowly emerges with life experience, clinical practice, and the realisation that, like patients, each of us is vulnerable in the face of ageing and life's many uncertainties. Compassion may develop over time, and it may also be cultivated by exposure to the medical humanities (http://medhum.med.nyu.edu/), including the interdisciplinary field of humanities (literature, philosophy, ethics, history, and religion), social sciences (anthropology, cultural studies, psychology, sociology), and the arts (literature, theatre, film, and visual arts). Each of these will not speak to every healthcare provider, but they can offer insight into the human condition and the pathos and ambiguity that accompany illness.
Although the process of arriving at compassion can be difficult or complex, showing compassion often flows naturally and can be as quick and as easy as a gentle look or a reassuring touch. In fact, compassion can be conveyed by any form of communication—spoken or unspoken—that shows some recognition of the human stories that accompany illness. As Broyard stated in his wonderful way, “I'd like my doctor to scan me, to grope for my spirit as well as my prostate. Without some such recognition, I am nothing but my illness.”1
Dialogue, the “D” of dignity conserving care, may be the most—and the least—important component of this framework. Through a genuine examination of attitudes that shape patient care, a change in behaviour that draws from these insights, and the awakening of compassion, many fundamental aims of dignity conserving care will already have been achieved. The practice of medicine requires the exchange of extensive information, within a partnership whose tempo is set by gathering, interpreting, and planning according to new and emerging details. As such, dialogue is a critical element of dignity conserving care. At its most basic, such dialogue must acknowledge personhood beyond the illness itself and recognise the emotional impact that accompanies illness (box 4).
Several psychotherapeutic approaches (dignity therapy,24 meaning centred therapy,25 life review or reminiscence26) engage patients in more extensive, formatted dialogue, with the intent of bolstering their sense of meaning, purpose, and dignity (see further reading in box).27 Dialogue should routinely be used to acquaint the healthcare provider with aspects of the patient's life that must be known to provide the best care possible. Treating a patient's severe arthritis and not knowing their core identity as a musician; providing care to a woman with metastatic breast cancer and not knowing she is the sole carer for two young children; attempting to support a dying patient and not knowing he or she is devoutly religious—each of these scenarios is equivalent to attempting to operate in the dark. Obtaining this essential context should be a standard and indispensable element of dignity conserving care. It will also foster a sense of trust, honesty, and openness, wherein personal information and medical facts are woven into a continuous and rich dialogue informing care.
In his 1927 landmark paper “The care of the patient” Francis Peabody wrote: “One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”16 The A, B, C, and D of dignity conserving care may provide clinicians with a framework to operationalise Peabody's sage insight and relocate humanity and kindness to their proper place in the culture of patient care. Easy to remember and empirically based, this framework may be readily applied to teaching, clinical practice, and standards at undergraduate and postgraduate levels and across all medical subspecialties, multidisciplinary teams, and allied health professions. For anyone privileged to look after patients, at whatever stage of the human life cycle, the duty to uphold, protect, and restore the dignity of those who seek our care embraces the very essence of medicine.
Funding: HMC is supported by funding from the Canadian Institutes of Health Research and the Canada Research Chairs programme; his work is also supported by CancerCare Manitoba Foundation.
Competing interests: None declared.