When I think of the word "holistic", the next word that comes to mind is "alternative." Holistic medicine is defined as "a form of healing that considers the whole person—body, mind, spirit, and emotions&mdash;in the quest for optimal health and wellness." A doctor that practices holistic medicine often uses conventional and alternative therapies to treat patients; therefore, the association people have with "holistic" and "alternative" isn’t inaccurate. 

What then is holistic nursing? Holistic nursing is defined as "all nursing practice that has healing the whole person as its goal." Caring for the WHOLE person does not just involve the care of their physical body, but includes caring for their mind and soul as well. The field of nursing is an indescribably stressful one. When you work at the bedside, your focus is acute care. Striving to heal them of their ailments, you assess and then reassess your patients, take vital signs, and give medicine for 12 long hours. With sometimes less than ideal staffing ratios, nurses often only have enough time to address the required aspects of care. But what about how the illness is affecting the patient and family mentally, emotionally, and spiritually?  

I’m sure we can all agree that we’d like to provide the best care possible to our patients each and every day. No matter how rushed, stressed, and over-extended we may feel at times, making a conscious effort to practice holistic nursing will not only bless your patients, it will bless you as well. It is not necessarily about the quantity of time you spend with patients, it is about the quality of the interactions. Though you may be rushed, don’t let it appear that way. Make eye contact and use their name. Ask how they are doing and genuinely care when they respond. See them as an individual, not as the patient in Room 206. 

Working in the field of pediatric oncology nursing, the reality of the need for holistic nursing has never been more evident to me. Cancer is life altering on a level that no one can truly understand unless they’ve experienced it first-hand. The patient and family will likely never be the same again. We are doing our patients and their families a disservice if we just focus on acutely treating the cancer, following the treatment plan and not addressing anything else. What about how this new journey is affecting the patient and family emotionally, mentally, spiritually, and even financially? A patient's emotional and mental well-being have been proven to affect their physical well-being. The financial burden of cancer care can cause additional stress for the caregivers. Make an effort and get them the help they need, whether that be referring them to a counselor, calling in a chaplain, or connecting them with local organizations who provide financial assistance. This all seems so logical, but we often don’t make the effort for whatever the reason may be.

With the common and often immediate association between "holistic" and "alternative," further education on what holistic means exactly seems warranted. Though this association is accurate regarding holistic medicine, holistic nursing might be better understood if we looked at it as WHOLElistic, caring for the WHOLE patient. I encourage you to embrace WHOLElistic nursing as your new normal.    

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I’m sure we can all agree that we’d like to provide the best care possible to our patients each and every day.

WHOLElistic Care

Having worked at the bedside as a pediatric nurse for 15 years, I am well-versed in acute care and have a passion for pediatric oncology. I recently shifted my focus from acute cancer treatment to the needs that are sometimes under-addressed during treatment, as well what happens after treatment is over. I took on the exciting, yet sometimes challenging task of developing a childhood cancer survivorship program in our area. I now spend my days scouring research studies with the goal of taking care of the "whole" survivor, not just the survivor’s acute medical needs. Let me clarify also that we consider these children to be survivors from the moment of diagnosis. This is meant to encourage a sense of empowerment over something that, in reality, they have very little control over.

All that said, a resounding theme in all my research has been how important it is to address the survivor’s emotional needs from diagnosis to end of treatment and beyond. The cancer journey is an inexplicably stressful one. Stress and anxiety can manifest physically. A study conducted at the University of Utah in 2008 found that "people who have a poorly regulated response to stress are also more sensitive to pain." The cancer journey holds many painful experiences such as surgeries, accessing central lines, blood draws, and side effects from their treatment like neuropathy. Reducing patients' stress can help them physically.

Meditation, relaxation, and exercise are widely known and practiced as stress relievers. Yoga, a lesser-known stress reliever, has become increasingly popular in the last few decades. The movements and controlled breathing practiced in yoga have been shown to improve physical manifestations of stress such as pain and fatigue. Cancer patients experience all of the above! A Harvard Medical School Mental Health Letter reports that "yoga reduces stress and anxiety which in turn reduces heart rate, lowers blood pressure, and eases respiration. Patients who practiced yoga were also less sensitive to pain and therefore better able to tolerate treatment." According to Duke University, "patients at all stages of health, including cancer survivors, can benefit from yoga. And the benefits are both physical and emotional."

An unwanted side effect that often accompanies cancer treatment is fatigue. The normal response to this extreme tiredness is rest.  This can lead to a lack of physical activity. Exercise has been shown to reduce symptoms and improve quality of life. Yoga is becoming more and more popular with cancer survivors because it provides "a balanced form of whole-body exercise." It’s not strenuous, like we sometimes associate “exercise” with and benefits the cancer survivor not only physically, but mentally as well. 

But isn’t yoga for adults? Did you know there are yoga classes out there for children? I didn’t realize this until recently. It makes perfect sense though, that if yoga can benefit adult cancer survivors, why can’t it benefit childhood cancer survivors as well? Armed with this new knowledge, Yoga for Kids will be introduced at our center next month. Oncology nursing is so much more than giving chemotherapy. I challenge you to broaden your focus as well.

Yoga can benefit the cancer survivor both physically and emotionally.

Yoga and Cancer

We all have an identity, defined by Merriam-Webster as “the distinguishing character or personality of an individual.” With our identity comes labels such as mom, teacher, or in our case, oncology nurse. As nurses, taking care of others comes naturally to us. It’s what we do. It’s who we are, our identity. Our patients also have an identity, who they are, how they describe themselves. Three little words have the potential to disrupt that entirely: You have cancer. 

We know a cancer diagnosis is life-altering, but can we really fathom to what extent? Have you considered the possibility that your patient may be going through an identity crisis brought on by their cancer diagnosis? We have to treat the person as a whole, not just the disease. Cancer changes abilities, roles, relationships, and values. A patient once told me “The day I was diagnosed, I said goodbye to that person. I haven’t been the same since.” Can you imagine feeling as if you’re no longer “you?” Let’s try to understand.

Studies show that those affected by cancer often take on the identity of a survivor, patient, or victim after diagnosis.

The word “survivor,” in relation to cancer, is one that has been widely used and promoted in recent years. It is intended to promote empowerment, with “survivorship” meaning living after diagnosis. Some embrace the identity while others may be reluctant, fearful that they may not in fact be cured (the idea that you have to be cancer-free to be a survivor). Studies show that the survivor identity is most common and is correlated with a better psychological state.

Some simply identify as a “patient,” which is appropriate, during treatment. Feelings associated with this identity are often loss of control and/or hope. They are no longer in control of their own health. Continuing this identity after treatment though can hinder healing, both emotional and physical.

Lastly, some take on the identity of “victim.” They feel a loss of power and vulnerability. Some don’t want to be “labeled” and “just want to be treated normally.” Everyone’s journey is different and we must be sensitive to that.

Cancer has such an impact that it will likely be part of a person’s identity for the rest of their life. A person is never quite the same after their cancer journey, whether that be physically or emotionally. Physical scars or aches and pains are a constant reminder of what they went through. Doctor’s visits yield a whole new level of anxiety after the cancer experience. Is it going to come back? Am I ever going to feel “normal” again?

What can we do as healthcare providers to help them through this ever-evolving change in identity? Meet them where they are, at that minute. Help them adjust to the new change in their role at home, their decrease in or loss of abilities, and/or refer them for counseling that will help identify these changes and promote coping. Reflecting back on the question posed earlier (“Can you imagine feeling as you’re no longer ‘you’?”) I’m sure it’s safe to assume that most of us would answer “no,” but that’s where empathy comes into play. Try, for one minute, to imagine what it must be like to be in their shoes, and take care of them the way you would want them to take care of you. Address the person in their entirety, not just their cancer.

Have you considered the possibility that your patient may be going through an identity crisis brought on by their cancer diagnosis?

Who Am I?

“What about me?”  “Why is he getting all the attention?” These are hard questions to answer when one of your children has just been diagnosed with cancer. Your other children may not fully comprehend what’s happening. All they know is that suddenly mom and dad’s world revolves around their brother and him being “sick.”  I’ve heard the phrase “childhood cancer is a family diagnosis.” Truer words have never been spoken.

Parents are faced with the unthinkable task of deciding whether or not to tell their other children that their sibling has cancer, wanting to protect them.  In turn, children, noticing changes in their day-to-day routine, may be afraid to ask questions, fearing the answer. If parents decide to tell their other children, they often struggle with what to say and how to say it. Whether the other children are told about their sibling’s cancer or not, the impact of the illness on the family will be felt. It can impact the other children physically and emotionally, manifesting in a variety of ways, from emotional outbursts to withdrawing from family members.

How an individual deals with stressful situations is determined by many factors, one being age. Studies show that siblings below school age tend to experience behavioral problems immediately after diagnosis, but the symptoms tend to subside with time. School-aged siblings, on the other hand, tend to experience more problems which problems last longer. They can exhibit conduct problems, learning difficulties, and impulsive behaviors. Recurrent themes regarding the stress siblings experience are fear of death, fear of change, fear regarding their own health, and anxiety related to social isolation. In addition to these fears, they often experience jealousy, guilt, poor self esteem, decreased academic performance, and feel uninformed about their sick sibling’s health situation. 

Considering all this, what can be done to try and facilitate a more positive response to a sibling’s cancer diagnosis? Healthcare providers spend so much time focusing on the needs of the sick child that the sibling’s needs are often overlooked, that is, until they are already coping in the only way they know how, by acting out. If we, as healthcare providers, would keep that key phrase in the back of our minds — “childhood cancer is a family diagnosis” &mdash; we could possibly help lessen or alleviate the siblings distress. Providing age-appropriate education soon after the sibling’s diagnosis can make them feel more involved in what’s going on. This is especially important with school-aged siblings, who often report feeling uninformed. Knowing that decreased academic performance could occur, communication with the sibling’s school should be a priority. Providing the family with contact information of licensed counselors should be a priority during treatment. Older children often do not feel comfortable expressing their feelings to their parents, so providing an outlet where they can speak freely about how the change in their family is affecting them is so important. 

We, as healthcare providers, know all too well that cancer affects the entire family. Broaden your focus. Help these parents advocate for not only their sick child, but their other children as well.

Childhood cancer is a family diagnosis. Healthy siblings can often be overlooked when one child has cancer, leading to emotional issues. 

Lost in the Shuffle

When you hear the word “awareness”, what is the first thing that comes to mind?  For most of us, I think it’s safe to assume that “cancer” would be the answer. Probing further, I think as far as “cancer awareness” goes, “breast cancer awareness” would be the next thing that comes to mind. October is flooded with pink everything to bring awareness to breast cancer. Other cancers have their awareness months too, with Childhood Cancer Awareness month in September probably being the 2

 most recognized and publicized behind breast cancer.

But what does “awareness” mean exactly? According to Cambridge Dictionary, awareness is defined as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience.” Okay, great, we are aware of cancer. Of course we are, we’re oncology nurses. But is awareness enough?

Will being “aware” of this life-altering disease change anything? You can “like” posts on Facebook or even better, “share” one that talks about cancer. After that brief moment of being aware, your life goes on. But will that awareness bring back my grandad, my mother-in-law, my brother-in-law, your loved one? Absolutely not. You know what will bring about change? ACTION!

What does that look like? First, educate yourself. Do some comparisons. How much money is spent on cancer research? Just as an example, childhood cancer only receives 4% of the total cancer funding. 4%!  Let that sink in. Our children, our future, only receive 4% of the millions (some reports show it to be billions) of dollars set aside for cancer research funding. 

Armed with knowledge like this, what can you do? What sort of ACTION can you take? If you have been personally affected by cancer, whether yourself or someone you love, you know just how important ACTION is. These days, there are 5K’s for everything, with PurpleStride (pancreatic cancer) and Relay for Life (cancer in general) being just a few of the many. Seek one out that gives its proceeds specifically to cancer research.

If there is a specific cancer that has impacted your life, and it is unfortunately one that doesn’t receive much funding, write your congressman. Why is it the way it is? How can we change that? Advocate for yourself or someone you love.

Make a donation to a foundation that provides resources to individuals or families battling cancer. Help a family that is battling cancer, whether that be running errands, providing food, or helping financially. The costs of cancer treatment are unfathomable and can cripple a family. Talk about it. Don’t assume it’s never going to happen to you or someone you know. We as nurses know that cancer doesn’t discriminate. It destroys physically, emotionally, financially. 

Every day, when I wake up and am reminded that I can no longer see, hear, or hug my loved ones thanks to cancer, I have renewed resolve to take ACTION and not just be aware. Those who have been personally affected are plenty aware too, trust me.

Won’t you join me in making ACTION the new “awareness"?

When cancer "awareness" isn't enough, it's time to take action and become advocates.

Awareness? How about ACTION!

Cancer. It’s a word we hope to never hear in reference to ourselves or someone we love.  As a parent, it’s something I hope to never hear in reference to one of my children. But what if you are suddenly thrust into the world of childhood cancer? No warning; your child is now one of those kids, like the ones you see on TV on St. Jude’s commercials. What now?

The array of emotions must be endless. How did this happen? Why did this happen? Did I do something to cause this? Are they going to die? What about my other children? My job? Money? The list goes on and on. The families receive so much information in such a short amount of time, as the practitioner rushes to begin treatment. A whirlwind…that’s the only way I know to describe it. As a nurse, your heart aches for them. What if this was your child?

Somehow the patient and family make it through treatment, some seemingly unscathed, some battered and broken, and some in between. But what happens when “remission” becomes the new reality? The first year or so is still a little structured, with scheduled scans and blood draws, but after that time, the survivor and family are released back into the world. Things are expected to return to normal. But is life ever really “normal” after such a life-altering experience?

If your world was turned upside down, would it really be that easy to get back to “normal life”? There will be ongoing needs, for the survivor and for the family members. This is where Childhood Cancer Survivorship Programs can make a huge impact in helping them return to “normal life.” Do the parents remember each and every chemotherapy drug their child received? Not likely. Do they know how much radiation their child received? Again, not likely. By providing the child and their parents with the child’s treatment summary, we are empowering them. They now have a complete, though condensed, picture of what they went through. This treatment summary can be given to all future practitioners who care for them.

Also providing them with a survivorship care plan can help them identify short and long-term side effects from the treatment they received so they can seek care accordingly. These programs also provide much needed individual and family counseling. Cancer affects the entire family, the survivor, the siblings, and the parents. Financial counseling is also available because the financial impact on the family doesn’t end when treatment ends. These programs also offer education on proper nutrition so the survivor can live as healthy a lifestyle as possible. More than that, it can be a place where the survivor and their family meet people going through the same thing they are. Someone understands. Someone has been there. “We’re not alone in this.”

Survivorship starts from the moment of diagnosis. We often get so focused on acutely treating the cancer that we forget about all the other needs the family has during such a stressful time. Be the advocate these children and their families need. Get them plugged into a survivorship center in your area. If there’s not one, shouldn’t there be?

For survivors of childhood cancer, survivorship programs can offer assistance for their families as much as for them.