She lies in the bed, covered in bruises with a pallor base tone, whispering “good morning” to me through blood-blistered, dry lips. I brought her a copy of her lab results, but she already knows she needs blood and platelets. It’s become a daily task, the focus of her days this month. I have done my job keeping her safe, educating her about how the results we read together likely make her feel and what to look out for.
She determines how she feels by the numbers I provide her with.
Her course of treatment is based on results, bad cells versus good, functioning ones, her body’s reaction to chemo, radiation and a prolonged hospitalization. I praise her on her ability to predict the numbers based on her symptoms. She starts saying things like; “I need blood today, and probably platelets because I had a nose bleed last night.” After three or so rounds of consolidation therapy, she has mastered the art of interpreting lab values and begins to mentor other patients on how to survive their battle. I am proud of her. She gives me a high-five but not too hard, because her “platelets are a little low.”
She tearfully thanks the entire staff for saving her life, and she and her family celebrate on their way out the unit doors for the last time! She is sent back into reality with her family, to return to her life as it was before cancer. As I watch her walk away, I am happy and scared for her.
Life and time go on… Six months pass.
No… I ruminate in our past as she slowly rolls by me on a stretcher, her face battered and bruised. I barely recognize her. She has a little hair now. She whispers through a half smile and busted lip, “I think I need some platelets.” I smile back, and tell her I’ll be in to see her soon.
I chat with her doctors and learn she fell and hit her face on the countertop at home because her counts were low. She got up too fast from the kitchen table. The team runs tests, and we find out, before I leave for the night, she is not a candidate for further treatment because her heart was severely damaged from the first round of anthracyclines. We get her settled into her room; give her some platelets and blood, and she sleeps.
The next morning, I walk in and find her sobbing silently to herself. I’ve brought her lab results and pre-meds for her blood transfusions but she can’t even look me in the eye. “They said my cancer came back and there’s nothing else they can do,” she explains through trembling words. Her voice trails as she looks away from me again, “I’m not ready to just give up. I did everything I was supposed to do.” I offer her and her family time before we begin to transfuse her, as she was just given horrible news.
She stops me and asks to go ahead with the transfusions because “I’ll feel better once I get my numbers up again.” I oblige.
Later that evening, I join the doctors for another family meeting with her about her options. Her lab results from the morning are on her bedside table. The rounding physician brings up hospice, describes it as a shift in her care, to focus on symptom management and comfort. Her family’s pain and emotional anguish creep into my soul and I fight back my own tears, recognizing my role has shifted as well. I’m now a provider of strength and emotional support.
Although sad, I feel like the conversation went well, and she and her family seem open minded about the idea. Everyone agrees she has had enough for the day, and we will move forward with plans for discharge home with hospice support in the next day or so. I thank God I am off the next few days, as the compassion fatigue is real and I need a breather.
The next week, she is still there. Shocked to see her name, I ask the team what happened. “She still wants blood products, so she refused hospice care,” they go on… “She doesn’t have any sort of palliative bridge-like program available in her area, or a local oncologist, and her family can’t transport her back and forth to our clinic for blood every day, so she is just going to stay here.”
Time passes, labs are drawn and blood products are given…
Her disease slowly infiltrates her lungs and takes over. Placed on comfort care for 24 hours before her death, she dies three weeks later in her hospital room. She leaves the unit for the last time on a gurney with decedent care, her family in a shocked state following behind, with her belongings in plastic bags.
Nurses are incredible educators. We are able to break down some of the most complex disease processes, medications and treatments and explain them to patients and families in the simplest terms. If your platelets are low, you can bleed to death. If you notice bleeding or bruising, let us know. You’ll feel tired when you need blood. Don’t stand up too fast because your counts are low and you might fall! Your white cells don’t work so you are at a huge risk for infection. It can feel like you have the flu because you have no immune system. Wear a mask! Wash your hands! Stay away from people who are sick. Don’t go to crowded places. Don’t eat fruits and veggies unless you can peel them or prep them safely.
To keep you safe, we’d likely package you up and put you in a bubble.
It is through this shielding education that we are creating a culture that eventually may rob patients of their chance to die with dignity. We are unintentionally doing them an injustice by reinforcing their dependence on numbers. Blatantly put, we tell them they need blood products to live. It is our job to keep our patients safe throughout their hospitalization. We hope to provide them with the tools they need to take care of and advocate for themselves when they leave the comforting walls of our intense, around-the-clock care.
But, what happens when the treatments don’t work? When the goals shift and they are approaching the end of their lives? If the cancer comes back and there are no treatments left to offer?
As an oncology nurse case manager, I have met with a countless number of families and patients who are afraid to take advantage of hospice care, because they rely so heavily on numbers, blood counts and transfusions. And who can blame them? We manage our days (and theirs) based on lab results. We draw blood, wait for results, and then act on them. It’s a very efficient system for use during acute phases of care, albeit a reactive one.
Why not change our methods and focus on being proactive instead of reactive? Start by asking patients how they are feeling… Help them prepare for the changes they will face during and after treatment. Shift your focus and realign your priorities, and theirs will follow. Discuss the importance of symptom recognition and management and let the numbers support your claims.
A simple flip of deliverance has the ability to shift a patient’s entire experience.
For example, notice the difference in your patient’s response to a provider who sits at the bedside versus one who has one foot out the door before they even come in. It may be difficult to hear any news from someone whose face is hidden behind a computer screen. There is a difference in managing the medical care of humans and taking a humanistic approach to medicine.
With the implementation of certain protocols, we have streamlined our time management and become more efficient. However, we have inadvertently removed the beauty and intricacies of individualized care. We have negated the importance of learning how to listen. I propose we bring back therapeutic communication, and start with a simple, face to face, “How are you feeling?”
There will be awkward moments of silence when implementing any sort of change. Embrace them. Learn to love them. Recognize that when given an acceptable amount of time to process any change, people transition through a multitude of reactions, thoughts, and inner disputes. Imagine the difficult conversations post-implementation, after encouraging our patients to become self-aware and autonomous. After taking the control away from the numbers and giving it back to our patients and their families. Here’s how a difficult conversation may go:
“Until recently, we have mostly managed your symptoms with blood product transfusions. Hospice applies effective methods, without blood products, to manage the same symptoms. Their goal is to focus, with you and your family, on your quality of life, away from the hospital. Think about what was important to you before cancer. We are not giving up, we are shifting our focus and giving you a chance to live out the rest of your life however you want to.”
I’m not promising that there will ever be an easy way to deliver nor accept bad news. Nor can I guarantee that a patient won’t change his or her mind about transitioning to hospice. We must respect their right to refute and refuse any aspect of their care. I am simply challenging you to try a different approach to patient education. Learn how to listen, and take advantage of the opportunity to soften abrupt transitions in care and encourage the natural flow of life along the cancer continuum.