Because Living Is So Much More Than Surviving...

Despite advances in cancer treatment that have led to higher rates of survival after treatment, the medical approach has continued to treat a patient with a disease, and though the disease often goes into remission, a patient remains. Helping cancer survivors restore their quality of life after treatment requires skill and a level of expertise that encompasses empathy, a focus on their quality of life, and is holistic in its approach. Nurses are the ideal professionals to lead this change.

Because Living Is So Much More Than Surviving...

Despite advances in cancer treatment that have led to higher rates of survival after treatment, the medical approach has continued to treat a patient with a disease, and though the disease often goes into remission, a patient remains. Helping cancer survivors restore their quality of life after treatment requires skill and a level of expertise that encompasses empathy, a focus on their quality of life, and is holistic in its approach. Nurses are the ideal professionals to lead this change.

The Way We "Do" Cancer

As an oncology nurse working in a hospital-based outpatient clinic, my tasks at work were specialized, but basic:

  1. check orders for chemotherapy
  2. rule out any contraindications to going forward with treatment
  3. assess the patient for adverse effects
  4. contact the oncologist with any concerns
  5. communicate with the lab and pharmacy
  6. do safety checks on orders and doses with another nurse
  7. administer premedications before treatment
  8. observe the patient during the infusion

While making the patient comfortable, doing my assessment, tapping their port or access device, and while the bags of chemo were infusing, there was time to talk and listen. What I heard from the patients and their family members were numerous concerns and questions that seemed to have been unaddressed by their oncologists, information that would enhance the patient's comfort, safety, and tolerance of their treatment regimen.

Much of that information seemed integral to the success and safety of therapy, such as vulnerability to infection, bleeding, electrolyte imbalances, or how they could expect to feel in the days after each infusion. Oncologists had heavy patient loads, were busy and tired from being on call, rushing from one hospital to another, coping with emergencies, and trying to keep up with their own documentation.

Based on the questions they asked, it was apparent that treatment was interfering with their lifestyles, and I wondered what would happen after they completed treatment, what their lives would be like afterward, when we no longer saw them on a regular basis, after their ports were removed, their hair grew back, and they attempted to return to the life they had before the shock of a cancer diagnosis.

Seeking and Resolving Unmet Needs

They had navigators to assist them with some of their needs during treatment, but after treatment had ended, patients were on their own. I started attending a cancer support group in the hospital basement in the evenings, wanting to know if there was a better way to help them with unmet needs.

Patients were happy with their doctors' care, but the lasting effects after treatment were interfering with their ability to return to their previous quality of life, activities, occupations, and relationships. Often, their entire lives had been upended, leaving them lost and unsure: "When will I feel better? Will I ever feel better?"

Few had been given survivorship care plans, but even those who did receive them were at a loss for how to proceed. Unprepared for what life would be like after treatment, their coping skills were inadequate to face what would be an extended and unpredictable recovery period. Survivorship care plans were little more than a schedule for follow-up medical care: scans, labs and screenings, for lengthening intervals until the five-year mark, then they were on their own. The plans appeared to be designed for the doctor's convenience more than for the patient's benefit.

They did provide some general guidelines that told patients to eat right, exercise, wear sunscreen, avoid stress, alcohol and tobacco, but they needed behavioral guidance. Fear and anxiety about cancer recurrence plagued them constantly, as well as fatigue and cognitive difficulties. They needed help restoring both their bodies and minds. Mental health guidance was all but absent.

A Community Approach

Doctors have neither the skill sets nor time to meet the needs of their newly created survivors, but patients came to them with problems they didn't know how to address. Patients fear being labeled hypochondriacs or sent away with antidepressants as the answer to their problems, without referrals to professionals in the community who might help them. A variety of mind-body therapies for functional restoration, such as physical and occupational therapists, exercise trainers, counseling, or other therapeutic modalities, can complement their medical needs during recovery.

Having a background in health, recreation and wellness education before I went into nursing, I realized that I was in an ideal position to be able to start addressing these issues. The frustration at the healthcare system acting so slowly and being so unwilling to risk innovation or listen to nurses' input was additional motivation for me.

My Own Innovation in Survivorship

I started my own business coaching people through some of these needs, offered a class in the community to encourage movement and physical activity in a supportive setting for cancer survivors, and began to write educational materials. As a nurse entrepreneur, I cherished the freedom and creativity, though it was, and still is, a financial struggle.

The Importance of Nurses

What became even more apparent being outside of the system, was the degree to which physicians and patients need nurses. Nurses are underutilized. While physicians fail to engage in learning about community resources that can help their patients, it is because they cannot do everything, and no one should expect them to. However, they should be informed and aware of what services are available in their communities and make the referrals so their patients can benefit from all options available to them to continue their recovery and return to their optimal quality of life.

Nurses see a whole person, and how their daily lives are impacted by medical intervention. It is long past time that nurses were listened to, and our input respected, valued and utilized. Just because insurance doesn't cover a service, or offered by a person with an MD, doesn't mean it has no merit. If physicians are so busy that they don't have time to learn about services to which they could refer patients, then they are doing patients a disservice. If it is a function of their work environment, then something needs to change and the onus is on physicians to alter the culture of medicine.

It takes a nurse to see the bigger picture and identify needs for change, because we are really the referees. Medicine is only part of the picture of cancer treatment and survivorship. Being satisfied that your patient survived is not enough. The nurse sees around and beyond the specter of medicinal treatment, with its benefits and adversities, to the whole patient and the environment in which they must recover and truly return to living.

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Alene Nitzky

About Alene Nitzky

Alene Nitzky, Ph.D., RN, OCN is an oncology nurse-turned entrepreneur. She is CEO & founder of Cancer Harbors (TM) and the FIERCE: Functional & Fit, Independent, Energized, Restored, Confident, & Empowered (TM) concept in restoring health after cancer treatment, and uses these programs to teach and coach cancer survivors in her community and online. She writes about running and healthcare, and is currently writing a book about transforming care for cancer survivors.

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Specializes in Pediatrics, Pediatric Float, PICU, NICU.

This is lovely what you are doing and trying to promote. My beautiful mother went through the shock of being a survivor, and the biggest fear was recurrence. Even a single sneeze or chest cold had not just her, but all of us, freaked out in the back of our head. 9 years after remission, that fear unfortunately became a reality that took her life. It would have been amazing to have someone or a program to help her transition and learn how to be in the survivor phase.

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I am sorry you lost your mother to cancer. People need so much support that the healthcare provider cannot possibly cover all of those needs. The providers should at least be aware of the resources that are available in their communities so they can make referrals, and be generous and thoughtful in those referrals.

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