The Definition of Dignity by Christina Knowles

According to the Oxford English Dictionary, the definition of dignity is “the state or quality of being worthy of honor or respect.”

Death has been on my mind lately. We see it every day in the news, pandemics, violence, cancer, but mainly it’s been at the forefront of my mind recently because my mother is dying. She is less than a month away from being 83 years old, so it is not surprising that she suffers from a variety of maladies due to age. I lost my father about a year and a half ago, and honestly, most of us (my brothers and sisters) did not expect her to live much longer after she lost him. They were together 61 years, and she took it pretty hard. He was the love of her life.

My mother is a strong believer in God and follower of the Christian faith, so she fully expects to be reunited with my father in heaven when she dies. I’m not so sure I share this belief, but I’m glad she has it. I do believe, however, that each person’s death is extremely important, and can be one of the most beautiful things we ever experience in our lives.

First let me preface this with a clarification of the kind of death to which I refer. I’m talking about the kind of death that is expected, somewhat drawn out, and is actually positively anticipated. Tragedies that steal lives long before their time suddenly with no preparation, no chance for goodbyes; those are terribly catastrophic, or deaths which come far too soon in a life yet unlived, those who should have had many more years to come. I would also like to clarify that I am not suggesting that people should needlessly suffer. But for those people who know their deaths are imminent, are able to put their affairs in order, say goodbye to loved ones, and whose pain is managed, the knowing, and even the experience, can be a gift.

Of course, I can only imagine since I have never been diagnosed with a terminal illness, but I have witnessed death first-hand and found it beautiful and profound for both the dying and those who were present in the end. I had the privilege of helping my husband care for his dying mother in her last days, and it was indeed a privilege. We often hear stories of people who want to avoid prolonged death, who say they do not want to be a burden, endure the humiliation of being incapable of doing even the simplest things for themselves, or do not want to put their relatives through that kind of pain. I can understand fear, fear of pain, fear of the unknown, fear of what the afterlife, if there is one, holds, but facing these fears could be the most important thing we’ve ever done. However, I do not understand the common fears regarding the humiliation and the burdening of loved ones. It’s simply not true from my perspective.

From what I have witnessed, knowing those who’ve died with loved ones nearby and from those who’ve cared for them, these fears are unwarranted. A dying loved one is not a burden, not in the slightest. It is hard, it is exhausting, it is painful, but it is also wonderful. Being present to hear those last words of wisdom or just words of love and to impart them yourself is precious beyond words. Caring for someone you love in the most intimate of ways, doing everything for them that they cannot do themselves is beautiful beyond comparison. There is nothing humiliating about it for the person receiving or for the person giving. Never in my life have I been so close to my mother as when I bathed her, never have I been so close to my father as when I spoon-fed him his dinner, never have I felt so much love flowing from me to another person through a simple act. The smile on the face of my mother as I bathed her, the smile on the face of my father as I fed him, tell me they felt the same. I wouldn’t trade these experiences for the world.

And then there are the words. For days before my father died, my whole family sat by his side, hanging on his every word, knowing whatever he said in those moments, knowing he could go at any moment, would likely be the most important things he would ever say. He spoke to each of us individually, saying what he loved about us, calling us by our special names. We asked him questions, things we knew we’d never have another chance to ask. Moments of incoherence happened, yes, but those about to die have surprising moments of clarity as well. I am honored to have been there for his last days.

My mother has had many close calls, so we are always hesitant to start the process of acceptance. Right now she has congestive heart failure; her heart rate drops to 20 and goes back up. She is refusing any care except comfort measures. She is ready to go be with her love. Knowing it can be any time is a gift. We don’t waste a moment. Sitting by her side, I ask her to tell me the stories of her childhood, to clarify things for me so I can have an accurate memory of her life. She enjoys this as well, recounting a life well-lived. Mostly I get to hold her hand and talk about how much I love her and how she has always been the best mother anyone could have.

I think death can even be this way for younger people with terminal illness although it is infinitely more unfair and tragic. I also know what it’s like to lose someone long before they should go, and what it’s like to be left behind. I know what it feels like to grieve so long it seems you’ll never stop. But knowing when, or approximately when we will die, makes us zero in on what’s important; it magnifies every moment, it makes every word precious and every touch significant.

Brittany Maynard, recently in the news for choosing a date to end her life to avoid a long drawn out and painful death in hospice care, says she would rather “die with dignity.” Although I support her right to make the choice and understand wanting to avoid the worst, I think it is a mistake. There is nothing undignified about dying surrounded by loved ones in hospice care. Her loved ones don’t care about her “singed off hair” and they would be able to keep her comfortable. However, I do believe it is her choice.

This may sound strange coming from someone who isn’t even sure if there is an afterlife, but I know if there is a heaven, my mother is surely going there, and if there isn’t, she’ll never know, so she won’t be disappointed. As for me, I don’t hold out hope to see my loved ones again after this life, which is all the more reason why I cherish every moment with them and treasure the privilege of helping to care for them; witnessing the so-called undignified—it couldn’t be further from the truth. And hopefully when I am very old and my death is just around the bend, I will remember that the very fact that there is someone willing to care for me through till the end is the very definition of dignity, and I will participate in every profound moment of my dying experience without guilt or reservation.—Christina Knowles