Helping Families Manage End of Life Pain at Home

In the oncology infusion clinic, sometimes I provide care for patients whose pain medication management is not under their control.

Typically, this patient has rapid disease progression, almost always with metastasis to the spine. They are easily identified by their need of mobility assistance. They are in pain even while lying in bed. Often they talk to you with their eyes closed. They are too sick to speak for themselves.

Also typically, a family member accompanies them. That person can recite by rote not only the name of all the patient’s prescribed medications, but the doses, and when they were last given. The caregiver provides a detailed report of the patient’s diet, stools, and urinary output. Glancing at the patient, I see he or she is freshly bathed, and dressed in clean clothes. Obviously they are well cared for.

Next, I assess for the fifth vital sign: pain. The patient’s body language prepares me for a high number. I am not surprised when they report an eight out of 10 or greater. I see on the home medication list that their oncologist has prescribed both a long-acting pain medication and a short-acting one for breakthrough pain.

I ask, “When did the patient last have pain medication?” The caregiver answers, “Last night.” I ask,  “Why didn’t patient didn’t have a dose in the morning before their appointment?” The answer is something like, “He needs to walk more.” “He doesn’t eat enough when he takes pain meds.” “I didn’t think he needed it,” and a long list more. Family members withholding a cancer patient’s pain medication are a common problem confronting hospice nurses.¹

It is my experience that when pointing out to this archetypical caregiver that their loved one is in pain, they begin crying. They almost always have the vial of long-acting pain medication in their purse or pocket. I get an order from the oncologist, and together, we treat our patient for pain.

I explain that the bone pain will not go away, it will only worsen. The patient will need more pain medication, not less. Then we discuss loss and grief, and how painful the feelings are. The caregiver sees their loved one floating away on a cloud of analgesics, and illogically thinks that withholding narcotics will keep them here longer. There may be other reasons the caregiver withholds pain medication, as well.²

How can an oncology nurse help this caregiver?

  • Provide a safe environment for the caregiver to talk about their grief.
  • Use the word “medications” when describing opioids and narcotics, instead of the word “drugs,” which has a negative connotation when associated with these necessary tools of pain management.
  • Is the patient eligible for home hospice care, which provides support and respite for the caregiver? If yes, provide the necessary referrals.

Encourage the caregiver to be brave. Appropriately treating their loved one’s cancer pain is a declaration of love.

And I say a little prayer for all of us.

Have you had similar experiences in your practice?


Alopecia And The Pirate

As I write this post, some scientists are searching for ways to prevent male baldness through genetic manipulation. Others are conducting similar research to cure cancer. Is hair really as significant a part of our identity as we are sold to believe?

My hair began falling out the 14th day after the first chemotherapy infusion. In preparation, I bought a wig, styled and colored the same as my real hair. Like a feral animal, it perched on its stand, awaiting an opportunity.

When I saw the first ungodly huge handful of fallen hair I was too stunned to cry. Instead, I mumbled, “F***,” repeatedly, like a demented chicken.

It didn’t fall out all at once. Each morning for a week, I’d step out of the shower holding gobs of hair in my hands to prevent clogging the drain. After blow-drying what was left on my head, I’d take a pair of manicure scissors, like a naughty three-year-old, and try to even it out and disguise the bald patches. When I no longer could, a coworker’s husband shaved my head while she collected the locks, tying them into small bundles with blue satin ribbons. Image

After a time, I stopped wearing the wig. I preferred to cover my baldness with a red bandana, pirate style.

It was summertime, and I was at downtown Portland’s Pioneer Square, when a young man wearing a pirate’s black hat, white blouse with buckskin laces, black britches, and boots approached me. He clutched an authentic-looking sword. This was years before Johnny Depp made pirates sexy. Despite fatigue and chemo brain, I understood: “Oh, no, this guy sees my bandana. Pirate guy thinks he’s found pirate girl.” There was no place to run.

He spoke to me. “Ahoy! Me beauty, how art thee this fine afternoon?”

“I art fine, thanks,” I replied. “Why are you dressed like a pirate? Is that sword real?”


He belonged to a club, of sorts, of people who dress like pirates and act out sword fights. I puzzled over what he wanted until he reached into his blouse and pulled up a goddess pendant dangling from a leather thong around his neck. He brought the goddess to his lips, kissed it, and then pointed to the carved turquoise goddess I had worn on a silver chain since my diagnosis.

“My fair Muse hails from Hungary, where she symbolized the female spirit of war and led her people to victory. I see you wear the Goddess yourself.” Doffing his hat, he bowed before swaggering back into the crowd.

He had approached because of the necklace, not the bandana. He hadn’t noticed that I was bald — or had he? Did I just have an encounter with an eccentric or a very kind man dressed as a pirate offering encouragement?

He left me smiling. There is more to each of us than what we look like.

This post was originally published by TheONC.

Tips for Learning Chemotherapy Administration

I attended a chemotherapy and biotherapy course. Most of the nurses attending had administered chemotherapy for years, but a group of nurses new to oncology sat at the far end of the table. By the end of the first day of class, none of them had spoken a single word after the morning’s introductions.

photo by jparadisi

photo by jparadisi

Concerned, I approached the instructor. She had noticed their lack of participation too and told me these nurses had expressed feeling overwhelmed by the amount of knowledge needed to safely administer chemotherapy.

I can relate. I recall, years ago as a pediatric ICU nurse, admitting a patient in anticipation of tumor lysis syndrome (TLS). Although chemotherapy certified nurses administered the chemo, I was responsible for the patient’s well-being in the ICU. I asked a lot of questions, probably too many. Weary of me, the oncology nurse coordinator remarked, “You worry too much. It’s just chemo.”

Somewhere between this coordinator’s cavalier attitude and the paralyzing fear of a nurse unfamiliar with oncology is the middle ground for teaching chemotherapy and biotherapy administration. Here are some suggestions:

Fear is the nurse’s friend. Fear makes you look up medications and regimens you are unfamiliar with administering. It makes you ask a more experienced coworker for help. It makes you call the oncologist for clarification of orders when you are unsure, but don’t let it paralyze you. Fear is your friend. Embrace it.

Build on what you already know. Safe administration of all medications, including chemotherapy, is founded on the cornerstone of The Five Rights:

  • Right Patient
  • Right Medication: In oncology, this includes becoming familiar with the overarching chemotherapy regimen ordered.
  • Right Dose
  • Right Route
  • Right Time

Right Now is what my husband, a hospital pharmacist, jokingly refers to as the “sixth right,” as in, “the doctor wants the chemotherapy given right now.” While promptness is a virtue, chemotherapy administration is similar to teaching a small child to safely cross a street: “Green means go when safe.” Don’t give the chemo until all the double checks are completed to satisfaction.

Teach evidence-based practice, not your old war stories. None of us older nurses are as entertaining to new nurses as we think we are. As a preceptor, keep your pearls of wisdom short and relevant to the teaching situation.
“Knowledge isn’t knowing everything but knowing where to find it,” said my ninth grade algebra teacher. Teach new oncology nurses the value of looking up medication administration information in your facilities’ policies and up-to-date references. Assuming the information provided by a coworker is reliable instead of looking it up yourself is unprofessional, and won’t hold up as your defense in a sentinel event review.
What helpful advice would you offer new oncology nurses?
What oncology references do you find particularly helpful?

Nurses: Telling Our Stories Can Help Others

In art school, I once presented a painting entitled, “Recuerdo (I Remember)” for class critique. The painting was inspired by my experiences as a pediatric intensive care nurse.

The image sparked an enthusiastic discussion among fellow students, during which I answered many questions about the role of nurses. One classmate told the story of her baby’s stillbirth decades earlier. She thanked me for the sensitive rendition, allowing her to share her story.

The instructor said, “You’ve got something here.”

Recuerdo (I Remember) by jparadisi

Recuerdo (I Remember) by jparadisi

Recuerdo appeared in the college’s continuing education catalog the following spring. I was pleased with the painting’s reception, but I realize it could as easily have had the opposite effect: bringing a classmate to tears. Nurses’ stories are proverbial double-edged swords. When wielded thoughtfully, they heal. Even so, they can easily cut someone else to the bone.

I am aware of the power of story when practicing oncology nursing. I was occasionally a patient at the infusion clinic where I now work. My coworkers view the story I bring from the experience favorably. That I can teach tying scarves into attractive head coverings for chemo-induced alopecia is a plus. However, through trial and error, I have gained judiciousness about telling patients I am a cancer survivor.

Here are some self-imposed rules I follow about story telling in the patient care setting:

  • Know your patient’s prognosis. It’s one thing to tell a newly diagnosed stage 1 breast cancer patient that you are a survivor, and that her hair will grow back. It’s something else entirely to say the same thing to a woman with metastatic disease. Tailor the story to the patient’s needs.
  • Talk about cancer treatment in universal terms. Some cancers do not have the same level of news exposure and financial support as breast cancer. Cancer patients should not feel they have a less “special” kind of cancer.
  • If you are not ready to answer questions about your experience, don’t bring it up. It’s natural for patients in similar circumstances to ask what treatment options you chose. If we’re talking about breast cancer, they may ask if you had a mastectomy. If so, one or two? They may ask about sexuality, too. You might be judged for your answers. You have to stay therapeutic anyway.
  • Allow patients to have their own experiences. Cancer treatment is not one size fits all. Do not assume that a patient shares your concerns. Exchanging information is often best done through asking questions rather than offering opinions. Let the patient direct the conversation.
  • Know when to let go. Being a cancer survivor does not make me the world’s best oncology nurse. The experience is simply a tool at my disposal. What’s best for most patients is a team of expert, compassionate caregivers bringing their unique experiences to the conversation.

Have you had a health condition that impacts your approach to nursing — or a coworker who has? What advice would you share?

New Year Resolution: Don’t Wait Until Late in the Afternoon

It was late in the afternoon when my patient arrived at the oncology clinic. The treatment

Kaboom (ceramic) by jparadisi

Kaboom (ceramic) by jparadisi

prescribed required more hours than we were open. The oncologist prioritized his treatment for that afternoon and scheduled a second appointment for the next morning to complete it. The only problem with this plan was my patient didn’t realize he needed two appointments until I told him. His eyes expressed disappointment, but it was an expletive that escaped his mouth. He immediately apologized. “I’m sorry; it’s just that I don’t have that kind of time anymore.”

I understood exactly what he meant.

It was on a New Year’s Eve when I discovered a lump in my breast. At that time, I was a pediatric intensive care nurse working 12-hour shifts and a single mother. Life as I knew it came to a grinding halt. Once chemotherapy started, my oncologist prescribed light duty.  No longer a bedside nurse, I worked on office projects for the PICU manager instead.

My oncologist was hopeful. Still, I remember hearing her say there was a 32 percent chance I would die in 10 years. I was afraid. However, as a PICU nurse, I knew life could be short. This knowledge helped me gain perspective on my predicament. I’d had a good life. If this were it, how would I spend the next 10 years?

Since childhood, I wanted to be an artist. At 15, I announced my plan at the dinner table. In his thick Italian accent, my father said, “Sweetheart, you are talented and can be whatever you want, but get a job first. You will gain life experience, and then you will have something to make art about.”

Eventually, I became a nurse.

I thought about this while my chemo-bald head perched like a cue ball on the armrest of the sofa, eyes staring at the ceiling. I still wanted to be an artist. If this was the last decade of my life, I would spend it making art. I needed to start right away, because I may not have that kind of time anymore.

After recovery, I enrolled in art school and then transitioned into adult oncology nursing. In 2009, I completed a certification in fine arts and became certified in oncology nursing.

Today I am an artist and an oncology nurse. Cultivating creativity not only adds joy and accomplishment to my personal life, but it also flows into patient care. I believe it sustains my love for nursing after 26 years of practice.

Are you setting aside your creativity until late in the afternoon of your life?

Are you waiting for retirement or for the kids to leave home?

What if you discovered you don’t have that kind of time anymore?

What would you change?


Diet As Tolerated: This Week’s Post for TheONC

Diet As Tolerated watercolor by jparadisi 2012

In yesterday’s post A Social License III: Nursing Synchronicity I write about an impromptu discussion with a young woman in a department store while shopping for work pants. It’s  common phenomenon for strangers to reach out to nurses even when we are off duty. I pair this post like a fine wine with my post this week for,  titled, Diet As Tolerated, which describes another off duty encounter, this time at a cocktail party in a trendy restaurant.

Started in February 2012, with almost 7,000 Likes on Facebook, is an online social forum where oncology nurses and cancer care teams can leverage their collective knowledge, nurture professional growth and emotionally support each other in a secure environment, as registration is required.

Moderated by oncology nurses and key opinion leaders, TheONC (The Oncology Nursing Community) features discussions and commentary covering key issues ranging from symptom management and palliative care to managing ethnic and cultural diversity.

Other resources in the community include:

  • A Library of resources including patient education materials and presentations by community members
  • Clinic Close-Up, where members can view video-based interviews with experts from large group practices, private practices, and academia covering a variety of topics
  • News items relevant to clinical practice
  • An interactive Quiz feature where nurses can test their diagnostic knowledge on a regular basis
  • A Calendar of national and regional events and meetings specific for oncology nurses and cancer support team members

TheONC is like having a weekly national oncology conference conveniently online. A wide range of topics have already been discussed, including Stem Cell Transplant, pediatric oncology, survivorship, nursing while going through cancer treatment, and much more. Once you’ve registered, posts can be saved for future reference.

Follow TheONC on Twitter @The-ONC, and Like us on Facebook.

Free Webinar on Thursday, July 12, 2012 “Melanoma: Beyond the Basics”

Just in time for the Summer, and with Melanoma on the Rise in the U.S.,  TheONC is hosting a very important webinar:  “Melanoma: Beyond the Basics,” on July 12, 2012 at 12:00 pm EDT. Here is the link to the webinar.

Key highlights of “Melanoma: Beyond the Basics” include:

•             Identifying common presentations of primary melanomas

•             Discussion about the importance of correct staging of primary melanomas

•             Learning about the current standards for treatment of early and later stage melanoma

•             Discussing the novel and investigation approaches currently being explored in advanced melanoma

•             A question and answer period following the presentation

When caught in its early stages, treatment of melanoma provides high rates of survival, but  left to metastasize, it becomes lethal. Recognition and assessment of patients for melanoma is useful for non-oncological care providers too. Click on the link above to register for this informative webinar.

What Drawing Has in Common With Nursing

Self-Portrait. Pencil on paper 2001 by jparadisi

Telling Our Stories to Benefit Others is my latest blog post for TheONC; the online community for oncology care teams. Registering for TheONC is free for oncology nurses.

Having the opportunity to write about creativity and its place in the oncology setting allows me to blog out loud the internal dialogues about painting, writing, and nursing I’ve had ever since I came out of the closet as an artist over a decade ago.  I have found these words of Goethe’s true:

“Whatever you do, or dream you can, begin it. Boldness has genius and power and magic in it.”

In my pursuit of living creatively, I frequently find magic in the convergence of science, humanity, and art. For instance, take this passage written by Peter Steinhart:

To draw anything you have to find a connection with it. You have to turn off the noise that keeps you from focusing. You have to let the object stir you to empathy or ennoblement or joy or compassion-even to fear. You must see that things are a part of your world in some special way before you can attend to them.

Now re-read the same passage, with a few simple changes:

To be a nurse, you have to find a connection with people. You have to turn off the noise that keeps you from focusing. You have to let patient care stir you to empathy or ennoblement or joy or compassion-even to fear. You must see that your patients are a part of your world in some special way before you can attend to them.

When making art, or practicing the art of nursing, it all boils down to focus and connection. Whichever you are doing today, find that focus and connection. Someone’s life will be better, because you did.

New Post for TheONC: Learn to Say No

The new post I’ve written this week for TheONC the Blog is  Learn to Say “No.” In it, I share how I learned to take back control of my time and relationships, the first step towards carving out the personal time necessary for creative growth.

TheONC is an online community for cancer care teams with blogs and discussions covering a variety of oncology topics such as spirituality, treatment regimens, research, and more. Individuals involved in the care of cancer patients can register for a site login, and join the conversation.

Shift Observations: That First IV Start After Vacation

photo: jparadisi 2012

Why does that very first IV start on the first shift back from a vacation always cause just a little apprehension?

My patient waits silently while I collect the supplies I need: a sterile IV pack, the angiocath, a normal saline flush. I tear a few small strips of tape and stick them to the edge of the bedside table, easily within reach, ready to secure the IV once it’s in the vein.

How many IV’s have I started over the past twenty-five years? Why does the first one after a vacation always feel like the first one ever?

My gloved fingers palpate the chosen vein one more time before I swab it clean, leaving a glistening sheen and contrasting shadow along its hill, a cairn on his forearm.

Collecting my thoughts, I focus on the vein until they are as sharp as the needle I use to puncture his skin and thread the catheter into the vein. A flash of blood tells me I’m in. Using one of the strips of tape, I secure the IV, then cover the site with a transparent dressing. It flushes easily.

I release my breath, which I realize I was holding.

I’m back.