All Deaths Are a Great Loss

When I was in nursing school, an “elderly” instructor (she must have been at least 60)

Bones (Redivivus) by jparadisi

Bones (Redivivus) oil on canvas by jparadisi

asked our class,

“Is the death of a young person a greater loss than the death of an old person?”

The oldest student was maybe 30. Unanimously, we agreed that the death of a young person is the greater loss. The instructor’s expression let us know she did not agree,

“All deaths are a great loss. No one wants to die. As nurses, you’ll do well to remember this.”

My first nursing job was in pediatrics. I remained in pediatrics for 15 years, and my student perception of the death of a young person being a greater loss than the death of an old person was never challenged. However, now that I am an adult oncology nurse, I have a better understanding of what our nursing instructor was trying to teach us that day.

Few people would argue that the death of an older person is sadder than that of a young person, but that’s not what my nursing instructor had asked. She asked, “Which is the greater loss?” The losses are equal, but for different reasons.

The death of a young person is a great loss because the world loses a potential Picasso, Hemingway, or Madame Curie. The parents of the youth lose the legacy of grandchildren who may have been born to their child. If grandchildren are already born, they lose a parent. The dying youth loses a full lifetime of experiences, love, joy, and sadness — the bittersweet fruit of a ripe old age. A piece of hope dies with them.

When an old person dies, the world loses a Gandhi, Rosa Parks, or Mother Theresa. More commonly suffered are the loss of a spouse, a parent, a close friend, or confidant. We lose someone with whom we share common history and memories. Upon death, an old person takes a piece of life from those left behind. With this understanding, I sit at the bedside of elderly patients, holding their hands as they grieve out loud their cancer diagnosis and impending deaths. I grieve their loss as greatly as I did the loss of my pediatric patients.

Nurses know that every passing life is a loss and there’s peace in knowing there’s no need to judge.

Using Perspective As a Tool Against Nursing Burnout

The death rate for humans on the planet Earth is currently 100 percent. I know this is not a pleasant thing to read while enjoying your first cup of coffee this morning, or perhaps you’re enjoying a calming glass of wine later this evening. It’s unpleasant enough that perhaps you will not finish reading this post, but it’s true nonetheless.

Ravens by jparadisi

Ravens by jparadisi

Running parallel to our fear of dying is our pursuit of eternal youth. Cosmetic surgery and procedures are a billion dollar industry. Many men and women consider regular treatments for balding, teeth whitening, the prevention and removal of wrinkles, and coloring gray hair part of normal maintenance. Some choose to have  the evidence of time wiped from their faces by a surgeon’s scalpel.

The struggle nurses face in striking the right balance between hope and realistic outcomes for our patients is in part due to society’s mythical belief that death is preventable, when in fact, it’s inevitable. As humans, nurses buy into the myth to some extent also.

Discussing this, a nurse friend and I joked about gray hairs and wrinkles. She remarked, “Getting old is terrible.”

“No,” I said, “It’s not. It’s what nurses do for a living. We help people stay alive so they can grow old.”

See? It’s a matter of perspective.

Whenever someone asks, “Is it hard being a cancer nurse working with dying patients?” the above thoughts come to mind. The answer is, “I don’t see oncology nursing from that perspective.”

Yes, oncology nurses work with the dying, but I perceive our practice as helping people live to their fullest capacity.

Nurses cannot guarantee patients a cure or how long they’ll live, but by promoting prevention, treatment, and providing tools for managing chronic disease, we encourage them to pursue their best life possible as things stand. If nurses lose this perspective, how can we hope to share it with our patients?

There is balance in the realization that death is part of life. Death and loss cause grief, a normal response. Grief and loss are painful. We fear death and loss, but they are a natural occurrence of living. Maintaining a realistic perspective is a tool for burn out prevention among nurses.

All people die. Nurses are here to help patients live until that day.

I grieve their loss, and mine, because I glimpse my mortality too in the faces of the dying.

Thank you for reading this entire post.

Rethinking The Paradigm

A friend and I sat at a wine bar. Over a glass of Pinot Noir, the topic of blogging came up. I

photo by jparadisi

photo by jparadisi

told her I was writing a post about the need to teach nurses how to talk to patients about dying.

She said, “Oh, you can’t talk about that all in one conversation. You have to talk about things like that in short, repeated conversations. It’s too much for someone to take in all at once.”

My friend is a diabetic educator, and she is better prepared to discuss life-changing illness with her clients than most nurses are to talk to theirs. Talking about the life-threatening aspects of diabetes is in her job description. Therefore, she’s been educated to do it.

Unlike clinical educators, nurses are hired for what we do to patients, not for talking to them. Although documenting patient education is part of our job description, it doesn’t carry the same weight of importance as, for instance, administering chemotherapy. Assuring that nurses and physicians are competent to discuss dying with patients is not a priority in health care delivery.

What if nurses and physicians were taught and supported in the necessary skills to bring the process of dying the same respect given to the process of giving birth?

Envision patients, physicians, nurses, social service workers, and spiritual care, working together, creating the same level of compassion and purpose for dying that parents, midwives, nurses, and obstetricians have created for childbirth.

If education about childbirth empowers expectant mothers in labor, might not education about what to expect at death equip dying patients with a sense of control, lessening their fear and pain? What might these patients plan, given small conversations of education, over an adequate amount of time? Would they create personal soundtrack CDs of music? Choose poetry for loved ones to read? Decorate their rooms with art to view as their vision dims? Lie in beds wide enough so loved ones can hold them?

As it stands, we burden hospice nurses with guiding patients and families, who do not know what to expect, through the entire dying process. When there is not enough time, patients go without the necessary knowledge to find personal meaning in this eventual and unavoidable passage.

Shift Observations: The End of The Dinosaur

photo: jparadisi 2012

With the care of an archeologist sifting for fossils, I hold his right arm for a second time, turning it to and fro, sliding my fingers up and down searching for a vein suitable to accommodate an IV catheter.  I’ve already looked once, and now return after a fruitless search of his left arm. Decades of chronic illness, medications, and simply old age have done their work, leaving my patient with a spindly network of fragile veins shifting loosely under his skin.

“Everyone should be born with a spigot,” I think silently to myself. “Why doesn’t this patient have a port?” I know the answer without consulting his physician: he is very old, and his illness will likely overcome him. The IV infusion I will eventually administer will not save his life, only limp him along a bit longer.

Outside, cold grey clouds shower a mix of horizontal rain and snow beyond the window of the infusion clinic. An unseasonal storm threatens what promised to be an early spring.

With a slight shiver, my patient asks if I believe in a climate change so powerful it could wipe out life on Earth. Before answering, I take in the wrinkled, reptilian-like skin of his forearm, which I continue to study. Without looking up, I respond to his question, “You mean, like the Ice Age that killed the dinosaurs?” He nods.

Magically, I feel a small, but plump vein. The IV goes in slick as oil on the first stick. I can’t believe our luck. “Yeah, I believe in climate change, but this storm will not be our extinction.”

In the Absence of Clouds, Artists and a Nurse Discuss Death and Dying (or The Art of the Death Panel)

Bones oil on canvas by jparadisi

Outside, it was a rare, January day of cloudless sunshine. Instead of enjoying it, I sat on a bench towards the back of an art gallery in a vacant storefront, where I estimate thirty artists sat in a circle talking about death and dying. I was there because the artist moderating the discussion is a friend of mine, and because I wanted to hear what people who are not health care professionals have to say about death and dying. Their ages ranged from twenty-something to seventy-something. Some had family members who are terminally ill. Some had lost parents, grandparents, siblings or friends. No one said they were battling life-threatening illness themselves, or had in the past. A couple of the artists were studying physics. As far as I know, I was the only artist working in health care. Because of that, I decided to listen without participating in the discussion. As an oncology nurse, I get to talk about death and dying all the time.

People shared their experiences of death, and then quickly shifted to ideas about their own deaths. One thirty-ish looking man admitted that he thinks about it all the time, and is saving money for cryogenics. He wants his body frozen when he dies. Another person, older than middle-aged, said he hoped to convince a friend or family member to drown him should he be a victim of dementia. Dementia seemed more feared by the group than pain. Another person thought you couldn’t really know when you’ll wish to die until it happens to you. Several people said they have signed POLST forms.  I found it interesting that no one brought up physician-assisted suicide, which is legal in Oregon and Washington states.

The topic of caring for dead bodies was lively. Most of the group couldn’t imagine washing a dead body, and a few insisted that they don’t care what happens to their own remains. This was the part of the discussion I found keeping my silence difficult. I have lost count of how many bodies I have washed and dressed. All of them have been infants or children. I was a pediatric intensive care nurse during that period of my life. While it was always sad, I feel that washing and dressing those small patients for their parents and families to hold and say good-bye to was the most sacred service I have provided my patients.

A young woman said that she learned in an anthropology course there’s a culture “I can’t remember the name of,” which believes each of us dies three deaths: First, we die physically. Secondly, when the last person who knew us dies, and lastly, when our name is no longer spoken. I’m not surprised I heard this for the first time in a room full of artists.

There was one statement I considered profound. An artist said she doesn’t know if there’s an after life or not. “If there isn’t, there’s nothing to be afraid of, but if there is, I am not afraid of that either, because in that case, I have already been there.”

I came away from the conversation believing that the people who know the most about death and dying are the dying themselves. Now that I work in outpatient adult oncology, I no longer attend at the bedside of the dying like I did as a PICU nurse, but many of my patients share their thoughts about their impending deaths with me. Most are at least a little frightened of the unknown. Some have said it all went by so quickly. I have heard young patients say that their bodies have become burdens of maintenance and they look forward to being done with them.  The last time I saw him, an elderly patient said to me, “My Juliette, parting is such sweet sorrow,” and he made me cry.

Pick Me

Absence (installation 2009) by JParadisi

I am five years old, lying on a mat on the floor in a darkened room. Peeking out of the corner of tightly squinted, but not quite closed eyes, I watch Mrs. Sundeman, seated at a child-sized table, place gold stars on our morning’s work. She sits on a child’s chair. With the side of my face pressed against the mat on the floor, her black shoes with stout heels are in my direct line of view. I peer up towards her face, willing her to see I am a good napper. “Pick me, pick me,” I chant silently. “Please pick me.” I force myself to lie still on the uncomfortable mat.  It’s naptime in kindergarten, and I want to be the best napper so Mrs. Sundeman, the teacher will pick me to have the magic pencil. Then I will choose, one by one among the sleeping children, who will get off the mats first by tapping them on the shoulder with the magic pencil. With the magic pencil, I choose who returns to play and who stays on the uncomfortable mats.

I am not chosen. It is not enough to lie still with squinted eyes. Mrs. Sundeman prefers children who dream unconsciously to those who like me cannot lie still without thinking. I do not know how to lie still and not think of something. Even with my eyes tightly closed, I see swirly lines and arabesques in brilliant colors against the black backdrop of my eyelids. My thoughts are full of ideas for pictures I will draw and I struggle not to tell the child lying closest to me, because we are not supposed to talk during naptime.

I am an adult now. I am a Registered Nurse. I hang bags of chemotherapy on IV poles and attach it by tubing to the IV sites of cancer patients looking at me hopefully as if I am administering Jesus in a bottle. They come in hoping for a cure, but many would be satisfied with simple remission, allowing them another birthday, another holiday, another anniversary with their families. I can hear their silent chants, “Pick me, pick me.” I smile at them while setting the pump. I ask if they are comfortable in their lounge chairs. I bring them warm blankets and pillows.

She lies in a lounger. Her cancer refuses to go into remission, and we both know. She no longer chants “pick me, pick me.” I gently hug her body of skin stretched over fragile bones. I never had the magic pencil. I never will. I am not the one who gets to pick, and for that I am grateful.