What is “Dignity”?
The English word dignity comes from the Latin word, dignitas, which means “worthiness.” Dignity implies that each person is worthy of honor and respect for who they are, not just for what they can do. In other words, human dignity cannot be earned and cannot be taken away. It’s an inalienable gift given to us by God, and every other good thing in life depends on the safeguarding of our fundamental dignity. As the Universal Declaration of Human Rights puts it, “recognition of the inherent dignity…of all members of the human family is the foundation of freedom, justice and peace in the world.”https://2020dev.agingwithdignity.org/what-is-human-dignity/
The inherent dignity of each individual just because of who they are does not easily survive intact when encountering the U.S. medical system and that has been a significant struggle for me as I encounter life as a lifelong patient. Our dignity as individuals is taken away the moment we enter the cancer centers and are tagged with bracelets and badges; told to sit there and wait to be escorted to the next stop; told to remove our clothing and given gowns instead, without being told why; our time is considered to be not our own but belonging to the medical system and we are treated as if we cannot even make our own decisions, not even when we are to be cut open and body parts removed. Informed consent is ignored, brushed aside, and the only people “explaining” complex legal issues are the front desk minimum wage employees who are not qualified to do so.
Does this seem hyperbolic?
Or perhaps only treatment reserved for children or those without the ability to understand what was going on?
I’ve encountered personally each of these scenarios, sometimes all in one day or in one appointment or in a series of encounters with single departments. The amount of times I have to tell the schedulers or other staff that I’m a person with a schedule, children, etc., that they can’t possibly know, that I am more than just this part of my body or treatment, is just astonishing. Every time I talk to any supervisors or administrators, I’m assured over and over that the rule is for patients to be consulted on appointments, that “this is not how we do things,” and yet it happens over and over and over that I’m simply handed or sent pages of appointments that I know nothing about.
I get super angry when this, and other things that infringe on my dignity as a human being, happens in order to cover up the feelings of powerlessness that are compounded every time I have to encounter the medical system.
It doesn’t cost anything to treat other people like human beings.
Or does it?
I’ve met with a variety of people in a variety of positions at my cancer center since starting treatment there. You see, when I encounter these issues, I don’t have the ability to leave it alone. When I encounter an issue, I report them. I fill out the surveys and if I don’t get a response or see a change, I take the issue to the next leadership level and the next if not successful. Yes, I realize not everyone has the energy to do this and I often don’t either, but it does give me a sense of purpose, to be the agitator and squeaky wheel for change, a dear friend’s nickname for me is “Captain Abigail the Shenanigator.”
In talking with those in leadership positions, I have seen first hand the tension between patient care and the business side of healthcare. That we have a price tag attached to us as patients is simply inescapable in the American healthcare system, even though there are those with the best of intentions attempting to bridge the gap. Despite the best efforts of those involved, some of the most important things to preserve the dignity of a human being is not translatable to a spreadsheet and efficiency. If there isn’t a line item for a task or something to avoid; if there isn’t an objective way to measure a task or something to avoid; if it doesn’t fit neatly into a box, then it is often lost.
How does one measure empathy? Trust? Rapport? Respect?
I can’t say that I have all the answers; at the same time, the suggestion I share with schedulers and other front desk people is this … “If someone you loved/trusted/respected was experiencing this, what would you think?” If the person is younger, I ask them if they’d want their mom treated this way. Reminding others of our humanity, of our basic dignity as human beings can be as simple as reminding them of someone they love.
But it’s exhausting.
No person should have to deal with the hardest challenge of their lives and have to scrabble and scrape for basic human kindness. The trauma of cancer or other illness is sufficient and heavy enough without having to deal with the way the system itself removes our autonomy and individuality.
I had the honor of expounding on some of my favorite subjects and this idea of dignity with Kristianne Stewart on her podcast, In Her Lane, in January of 2021. You can access our discussion here. We can each be part of changing this system by speaking up and identifying the issues and insisting on change.