Human Dignity and Bioethics: Essays Commissioned by the President's Council on Bioethics

Chapter 19: Human Dignity and the Seriously Ill Patient

Rebecca Dresser

Respecting human dignity is a central moral and social aim when it comes to either health policy or everyday medical care. Yet like other important concepts, such as "happiness"¹ and "fairness," the meaning of dignity can be difficult to pinpoint.

At the same time, one attraction of the dignity concept is that it lacks a settled interpretation. Elasticity in the definition of dignity creates the possibility for rich and diverse scholarship about the concept, such as the essays in this volume. As the essays illustrate, writers may examine the meaning of dignity from a variety of vantage points. They may explore the concept from a broad, comprehensive perspective, or consider dignity in a single context. They may approach the concept from a historical, religious, biological, or humanistic vantage point. They may consider dignity at the abstract level, or apply it to individual cases. They may describe dignity, defend it, or criticize it.

Many of the writers in this volume consider questions related to the proper subjects of human dignity. Should we extend dignity to humans in the early stages of development? Should we extend it to potential future beings with enhanced, "superhuman" features? Should we extend it to certain nonhuman animals or intelligent machines? And how can we defend the idea that humans are owed dignity, when contemporary science and theory seem to undercut the traditional religious justifications for this idea?

My question is different. If human dignity applies to anyone, it applies to people experiencing serious illness. Every author in this volume would agree that human patients should be treated with human dignity.ⁱ But what does this mean today? What constitutes dignified treatment for patients receiving care in the context of contemporary medicine?

In this essay, I examine dignity from the bottom up. I consider how the concept of dignity bears on the treatment of patients with serious illness. I argue that dignity merits more scholarly attention in bioethics, that it is no less problematic than other bioethics concepts, and that it is a central concern for patients and caregivers in the clinical setting. My analysis draws on scholarly work and on my personal experience as a cancer patient.

The Bioethics Critique

For many years, certain bioethics scholars, medical professionals, and policy officials have embraced preservation of human dignity as a clinical and policy goal. Securing a "Death with Dignity" for patients was an early preoccupation of the bioethics field.² The need to preserve human dignity has also been recognized in work on the new reproductive technologies, genetics, medical training, and research on human subjects.³

Yet the concept of dignity has recently come under attack. The sharpest critique comes from philosopher and bioethicist Ruth Macklin, who claims that "appeals to dignity are either vague restatements of other, more precise, notions or mere slogans that add nothing to an understanding of the topic." In the worst case, she argues, dignity acts as a slogan to substitute for substantive argument favoring a particular position. In other cases, Macklin sees appeals to dignity as redundant, adding nothing to the analysis. For example, in the end of-life context, she contends that appeals to dignity are actually appeals to promote patient autonomy in decisions about life-sustaining treatment. Appeals to dignity may also stand in for other principles, such as respect for persons, confidentiality in the doctor-patient relationship, or bans on "discriminatory and abusive practices." Macklin concludes that dignity "is a useless concept in medical ethics and can be eliminated without any loss of content."⁴

Macklin's provocative challenge has generated many responses and in that sense has served as a useful trigger to further examination of the dignity concept. Although some writers share Macklin's disdain for the concept, others see human dignity as a distinct ideal, one that is both morally and practically significant. I am part of the second group. Like any other moral arguments, appeals to dignity may be inappropriate or superficial, or they may mask inadequately supported claims. But it does not follow from this that bioethics should abandon appeals to dignity.

Macklin's argument that we should eliminate dignity from bioethics analysis is unpersuasive for at least three reasons. First, the claim that the concept of dignity is too vague to be useful implies that other bioethics concepts are free of this problem.⁵ Yet many bioethics concepts are imprecise. Examples are the concepts of justice, fairness, and rights.⁶ All of these concepts are defined and applied in a variety of ways by different groups and individuals. Indeed, the proper meaning of the concepts Macklin prefers, such as autonomy, respect for persons, discrimination, and abuse, are sufficiently imprecise to generate extensive scholarly debate over how they should be defined and applied. Macklin sets up a double standard in demanding a clear and widely accepted definition of dignity.

Second, Macklin's critique is premature. It is true that individuals and groups invoking dignity in bioethics do not always supply a clear account of its meaning. And bioethics scholars have not devoted much effort to discussing the concept.⁷ Yet these are not reasons to abandon dignity. Rather, they are reasons to pay more attention to it. The shortcomings of the existing literature should attract more scholarly work and policy debates over the proper meaning and applications of human dignity.

Other writers make similar arguments. While acknowledging that dignity can mean different things to different people, Ann Gallagher contends that Macklin's argument "urges us.not to throw dignity out but rather to reclaim it, embrace it, draw on and develop existing theoretical and empirical work.."⁸ Timothy Caulfield and Audrey Chapman conclude that "a pronouncement that something infringes human dignity should be viewed as an opportunity to debate the values at play and the cultural underpinnings of the concern."⁹ What is needed, then, is more work on the dignity concept. It is too early to consign dignity to the scrapheap.

A third shortcoming in Macklin's claim is its lack of respect for the individuals and groups that see dignity as a significant bioethical concern. As Gallagher puts it, "In response to Professor Macklin's question, 'Why, then, do so many articles and reports appeal to human dignity, as if it means something over and above respect for persons or for their autonomy?' it might be asserted 'Because it does mean something over and above respect for persons and autonomy.'"¹⁰ A belief 's popularity is not necessarily evidence of its validity, of course. But widespread popularity is a reason for critics to consider that belief carefully, instead of dismissing it outright.

Dignity from the Patient's Perspective

There are many ways that we could learn more about the meaning of human dignity. The concept deserves further theoretical and empirical investigation from a variety of vantage points. One possibility would be to conduct surveys of different individuals and groups to elicit their views on the matter. Such surveys might identify similarities that suggest empirical agreement on the meaning of dignity in various settings.

In the remainder of this essay, I adopt a form of this approach. I present my own and other writers' views of how dignity concerns arise in medical care. Human dignity is implicated when patients and families face decisions about ending life, but it also is implicated before that, when patients are undergoing treatment for serious illness. During this time, the patient's dignity can be honored or compromised in numerous ways. Here, I describe how privacy, communication, personal knowledge, and dependence connect to dignity for people facing serious illness.

The concerns I describe are separate from the bioethics concepts Macklin invokes. As Miles Bore observes, "While [patients] might voluntarily agree to a medical procedure, be well informed of the procedure, have their records of the procedure kept in strict confidence, be unharmed by the procedure and actually benefit from the procedure, they might still incur and feel a loss of dignity."¹¹

Dignity concerns arise in connection with the broader area of personal privacy, but contrary to Macklin, they go beyond protecting the confidentiality of medical communications. Patients enter a world of forced and one-sided intimacy with strangers. Besides the physical exposure that goes along with clinical care, there can be unwanted exposure to members of the public.

Patients feel a loss of dignity when care intrudes into areas raising particular privacy concerns. Having to wear "flimsy and revealing hospital gowns" and being gossiped about by staff are some of the violations that can occur.¹² Other examples include being bathed, using a bedpan, and receiving an enema.¹³ Being wheeled through the halls in a wheelchair or on a gurney feels undignified too, especially when the halls are public places with visitors and others who cannot resist staring at the sight. Having medical students and residents troop into a hospital room to make one an object of study can also be experienced as an indignity. Having to open one's bedroom to home care professionals is yet another example of the forced intimacy patients endure.

Although some personal invasions are probably unavoidable, clinical care should minimize them as much as possible. The ordinary norms governing physical privacy should be observed unless there are good medical reasons to deviate from them. Clinicians and students entering the examining room, hospital room, or home should acknowledge the intrusion and undertake compensatory efforts to preserve the patient's dignity. As I discuss below, communication, respect for personal knowledge, and responses to dependency can reduce the indignities accompanying the loss of privacy that illness brings.

Communication can have a lot to do with preserving patients' dignity. The outward signs of illness create a heightened need to be treated in a dignified manner. Hair loss, severe weight loss, and other unwelcome changes make patients sensitive about appearing in public. Small actions, such as making eye contact with a skinny, bald cancer patient, are ways to confer dignity on such patients. Other methods of reaching out, in person or in writing, can make a huge difference in how a patient experiences the burdens of illness.

It is all too tempting to look away from people who are obviously ill, in part because they are reminders of human frailty and mortality. But the person inside still needs to be recognized, to be honored and valued. If dignity is "a psychospiritual connection.that involves empathy, presence, and compassion,"¹⁴ sincere efforts to communicate are essential to establishing this connection.

Another dimension of dignity is respect for the patient's personal knowledge. Being diagnosed with a life-threatening illness is life-altering. Priorities, relationships, and social roles undergo drastic change. Patients face mortality in ways that healthy people cannot imagine. In this sense, patients know more than the relatives, friends, and clinicians around them. Many patients suffer through chemotherapy, radiation, surgery, and other burdensome interventions, and this demands a kind of strength never before required. Dignity is promoted when others honor the patient's ordeal and look up to the person enduring the assaults of illness and treatment.

Serious illness also brings a new kind of dependence, and being dependent feels undignified to many people. Sometimes clinicians respond to a patient's desire for independence by giving her too much responsibility for decisions she is unequipped to make. Telling a patient that it is up to her to decide whether her symptoms merit hospitalization is inappropriate when the patient lacks the medical expertise needed to make such a choice. Expecting patients on high doses of pain medication to exercise full autonomy is inappropriate, too. On the other hand, pressuring patients to accept beneficial treatments they are resisting can be appropriate.

Clinicians and informal caregivers respect human dignity when they attend to patients' needs for help in navigating the complicated course of a serious illness. Thoughtless invocations of autonomy can conflict with patients' dignity interests. Patients are persons deserving of high-quality care, and sometimes this requires others to assume or share with them the authority for making difficult medical decisions.

Conclusion

Patients may have the freedom to decide about treatment, yet still feel subjected to indignities. Patients' interests in confidentiality and being protected from abuse and discrimination may be adequately addressed, but they may still experience care as impersonal and demeaning. Many dignity violations occur when patients feel they are regarded as objects, rather than as persons worthy of equal respect. In this situation, it would be dangerous to tell clinicians (and bioethicists) that they need not worry about the dignity of seriously ill patients.

The bioethics field has existed for several decades, but many people still feel devalued when they receive medical treatment or are hospitalized. This is the case even though patient autonomy is much more respected than it used to be. One could argue that bioethicists' failure to emphasize protection of dignity has hindered efforts to improve the medical experience for patients. In support of this view, Hilda Bastian argues that dignity's place in medical ethics must be recognized: "Maybe when there's no indignity possible in illness or medical procedures, when all caregivers, policymakers and members of ethics committees are superhumans incapable of having lapses in empathy, then retiring this notion from active duty could be considered."ⁱⁱ

The good news is that many clinicians do treat patients with dignity. The doctors and nurses in this group would be horrified by the notion that dignity no longer matters. For them, treating patients with dignity seems to be part of their character, as well as their sense of professional integrity. People concerned with bioethics should join them in recognizing dignity as a crucial component of ethical patient care.

For patients, dignity is a precious possession. Serious illness threatens one's place in the human community. Ordinary activities fall by the wayside and relationships are no longer the same. How should the patient, clinicians, loved ones, and others respond to this disruption, this new vulnerability? These matters are fertile ground for the inquiry into human dignity. They deserve a high priority in bioethics scholarship and teaching.

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FootNOTES

i. As the contributions by Gelernter, Meilaender, and Sulmasy suggest, however, there may be disagreement over what constitutes dignified treatment for permanently unconscious individuals like Theresa Schiavo or for advanced dementia patients.

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EndNOTES

1. Miles R. Bore, "Dignity: Not Useless, Just a Concept in Need of Greater Understanding," BMJ Rapid Responses , February 17, 2004 (available online at http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

2. See Rebecca Dresser, "Precommitment: A Misguided Strategy for Securing Death with Dignity," Texas Law Review 81 (2003): 1823-1847.

3. See Ruth Macklin, "Dignity is a Useless Concept," BMJ 327 (2003): 1419-1420, and Timothy Caulfield and Audrey Chapman, "Human Dignity as a Criterion for Science Policy," PLoS Medicine 2 (2005): 736-738 (available online at www. plosmedicine.org).

4. Macklin, op. cit.

5. Mary C. Beach, Patrick Duggan, and Gail Geller, "Don't Confuse Dignity with Respect," BMJ Rapid Responses , January 21, 2004 (available online at http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

6. Anthony Staines, "What is Dignity?" BMJ Rapid Responses , December 25, 2003 (available online at http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

7. Exceptions are Deryck Beyleveld and Roger Brownsword, Human Dignity in Bioethics and Biolaw (Oxford: Oxford University Press, 2001), and Leon R. Kass, Life, Liberty and the Defense of Dignity: The Challenge for Bioethics (San Francisco, California: Encounter Books, 2002). See also Richard E. Ashcroft, "Making Sense of Dignity," Journal of Medical Ethics 31 (2005): 679-82; Matti Häyry, "Another Look at Dignity," Cambridge Quarterly of Healthcare Ethics 13 (2004): 7-14; and "Dignity at the End of Life (Thematic Issue)," Journal of Palliative Care 20 (2004): 133-216.

8. Ann Gallagher, "Defending Dignity," BMJ Rapid Responses , January 12, 2004 (available online at http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

9. Caulfield and Chapman, op. cit., p. 738. See also Häyry, op. cit, pp. 11-12.

10. Gallagher, op. cit.

11. Bore, op. cit.

12. Alexander M. Capron, "Indignities, Respect for Persons, and the Vagueness of Human Dignity," BMJ Rapid Responses , December 31, 2003 (available online at
http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

13. Hilda Bastian, "An Offensive Slogan," BMJ Rapid Responses , December 19, 2003 (available online at http://bmj.bmjjournals.com/cgi/eletters/327/7429/1419).

14. Stanley M. Giannet, "Dignity Is a Moral Imperative," BMJ Rapid Responses, December 25, 2003 (available online at http://bmj.bmjjournals.com/cgi/eletters/ 327/7429/1419).

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