Remember in second grade when you realized that you could say the word “giraffe” 25 times and it would lose its meaning, shed the image of that gawky creature and turn into a little pile of meaningless sound? You know, when you had your first insight into the wonders of language?
I was reminded of this experience when, at a conference about patient engagement in health care, the word “dignity” was used over 50 times in the first 90 minutes (I counted after a while, prompted by irritation), and I was left with a little pile of meaningless sound where I had expected to find something important. Since then, I have been on hyper-alert for “dignity.”
As you surely know, patient-centered care intends to ensure that we are treated with dignity (and respect). Some institutions will “respect patients’ dignity.” Researchers investigate the relationship between various diseases (e.g., heart failure, Parkinson’s) and dignity. You can purchase a “Dignity Toolkit.” One foundation supports research on “dignity-driven decision-making.” And generic conversations about improving people’s experience of their care are often lent gravity by calling for dignity as an attribute we possess that must be recognized.
I like the word “dignity.” All those hard consonants give that nice, solid, clean-catch feel to a word often matched with more squishy feel-good ones like “respect” and “autonomy.” Plus, the frequency of its use means that perhaps dignity isn’t just a trendy new catchword making the rounds at patient related conferences.
Here’s the problem: Upon reflection, I find that I don’t know what dignity means, not generally (“a dignified Southern gentleman”), nor specifically, such as when it is used to refer to me when I’m a patient.
The published literature on dignity in health freely admits that confusion collects around this word. And although a few researchers and commentators have attempted to define it, these definitions tend to tend toward the philosophical and conceptual.
I’m looking for a more useful understanding. What is dignity — or, more important, what is my dignity? How do I know when I’m being treated as though I have some? And if I can’t define it, how can I protect/defend it or ask to be treated with it?
I don’t mean to be testy about this — the rhetoric describing patients is littered with outcast and outdated words — remember the “sick role“? “Salutogenesis“? But I have a suspicion that dignity is something that does matter a great deal to me. Careless use of the word allows the subject to be named, but because it’s not defined, it serves as a placeholder. It doesn’t count; it can’t be measured and interventions can’t be designed to increase or decrease it. And thus, no one can be held accountable for me being treated as though I have it. Nor can I tell if I am recognizing it in others.
I combed thorough health-related definitions of dignity and of generic dignity. I rejected the subjective definitions that define dignity as feeling “worthy, honored and esteemed.” I steered away from the one that sees dignity as “the acknowledgement of a value; a moral principle based in the usefulness of the human being, and not in his use as a means to an end.” This just doesn’t do it for me: “feeling valued and comfortable psychologically with one’s physical presentation and behaviour, level of control over the situation, and the behavior of other people in the environment.” And I don’t understand those who say they only know what dignity is when they feel they have been treated as though they have none.
Left to my own devices, I define dignity as “public recognition of my self-worth.” At its simplest, dignity for me says that individuals have many roles and hold many responsibilities; we are never only the client or the customer or the parent or the patient.
For a clinician to treat an individual as only a lung cancer patient or only a person with diabetes or only as the mom of a kid with asthma diminishes us in our own eyes and in the eyes of the beholder. It limits our understanding of the magnitude of the challenge we face in caring for ourselves and it limits how we imagine solutions to the barriers we face in doing so.
To treat a patient with dignity means to acknowledge that she may be a mathematician or mom of a kindergartener. She may be a divorced single parent with no friends or family around. A member of the PTA. A dog walker. A closeted alcoholic. President of a company. Employee in danger of losing her job. A physician. An artist. Whatever.
The specific details are rarely all critical. Far more important is that my clinician recognizes that a rich collection of events, skills, talents and experiences has brought me to seek her expertise. It is from this collection that we will together figure out what I bring to the current task of caring for myself, mindful of both my strengths and weaknesses. Sometimes what I will need to do is fairly straightforward: taking the next steps relies only on my knowing what to do and how to do it. But making good use of health care generally requires more from us than simply reporting on symptoms and complying with directives in response.
For my clinician to treat me with dignity is to acknowledge that my actions — making appointments, showing up, coordinating records, taking medications, nudging communication among clinicians — play a central role in the effectiveness of my care, and that figuring out what I can do for myself and what I need help with in order to benefit from the specific tools of health care is the focus of our time together. Treating my disease and maintaining my health is an enterprise I share with my clinician, and my dignity is found in the recognition of our mutual commitment and trust do to the best we can to help me live as well and as long as I can.
Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs on the Prepared Patient blog.