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Cancer Tip Sheet: Taking Pills to Treat Cancer – The Importance of Doing it Right

By Stacy Collins, MSW, Senior Practice Associate
National Association of Social Workers
  

The Changing Landscape of Cancer Treatment
Treating Cancer With Pills
What Is Adherence?
Why Is Adherence to Cancer Medication So Important?
The Challenge of Adherence
Ways to Incorporate Medication-Taking Into a Busy Life
Special Considerations for Older Adults With Cancer
Ways to Improve Cancer Medication Adherence With Old Adults
Resources
The Changing Landscape of Cancer Treatment

Most cancer treatment involves regular visits to an oncology office or hospital for intravenous, or IV, chemotherapy.   But cancer treatment is changing and more and more, cancer treatment involves taking pills.   Oral chemotherapy – taking pills to treat cancer – offers many benefits: fewer office visits; less time away from work and family and less interference with personal schedules.   Patients welcome the absence of painful needle sticks that IV chemotherapy requires.   But the advantages of oral chemotherapy are balanced – if not outweighed by – the responsibility for self-treatment of a serious disease.    

Treating Cancer with Pills

When a person receives IV chemotherapy, the oncologist knows exactly how much medicine a person receives because the treatment is closely supervised by medical and nursing staff.   But when treatment is done at home, the responsibility for adherence – ensuring that cancer medication is taken as prescribed – falls on individuals with cancer and their caregivers.  

What Is Adherence?

Adherence means taking medications safely, timely, faithfully and accurately.   It also means that:  

  • No doses are skipped
  • No extra doses are taken
  • No doses are taken in the wrong quantity, at the wrong time, or under the wrong conditions (e.g., with or without food)

Adherence is very important in cancer treatment.     However, many adults have a poor track record with adherence. Recent research shows that more than 50 percent of Americans do not take prescription medicine as instructed.   The numbers are even worse with cancer drugs – it's estimated that only 30 percent of people with cancer take their medication as prescribed.     Non-adherence (not using medication as prescribed) is associated with more doctor visits, more hospital admissions, and longer hospital stays – all of which contribute to rising health care costs.     The estimated cost to the U.S health care system of non-adherence to prescription medications is $100 billion – and rising.  

Why Is Adherence to Cancer Medication So Important?

With any medication, non-adherence can have a serious impact on a person's health.   But the stakes are often higher in cancer treatment.     Not taking cancer medication as prescribed may mean that that drug won't work, since a certain amount of medication (referred to as a "therapeutic level") needs to be in the body in order for the drug to be effective.   In many cases, cancer may return if a person takes the cancer medication occasionally, or stops taking it altogether.   Non-adherence can also affect how the doctor views the patient's illness, and may result in unexpected changes to a patient's treatment.  

The Challenge of Adherence

As simple as it sounds, adherence can be challenging.     Many people have difficulty fitting medication-taking into a busy lifestyle, which may include work, family, and other obligations.     Some people fear that cancer treatment will take away enjoyment and pleasure in life; others may feel burnout or "treatment fatigue" from long-term use of cancer medication.  

Ways to Incorporate Medication-Taking Into a Busy Life
  • Use weekly pill containers – These inexpensive tools allow you to organize your medications into daily doses, and are especially helpful if you are taking multiple medications or planning to travel.
  • Explore electronic adherence tools – such as cell phone text reminders.
  • Identify pill-taking cues – Consider taking your medication when you do other regular activities, such watching certain TV shows or brushing your teeth.
  • Develop an action plan for unexpected and special events - such as weekends, vacations and celebrations.
  • Ask your loved ones for help– Adherence is always easier when you have support from others.
Keep in mind – medication adherence is
difficult and everyone makes mistakes
at times.
  •   Understand how your cancer drug interacts with food and other medications you are taking – A pharmacist is an excellent resource if you have questions about food and medication interactions.   
  • Maintain regular phone or face-to-face contact with your health care provider.   Cancer medication instructions are often complex.   Talk to your health care provider if you have any questions about your treatment.     And remember to report side effects, as these can also affect adherence to your medication.
Special Considerations for Older Adults with Cancer

Older adults face special challenges in maintaining good adherence.     Having more than one illness at the same time (often referred to as "co-morbidity") is one such challenge.       For older adults, having multiple conditions (such as cancer and heart disease or diabetes) increases the number of prescription medications, which makes adherence more difficult.   Older adults are also at increased risk for dementia or other cognitive problems, and may forget to take their medications or become confused about medication instructions.   They may also have arthritis or other functional difficulties, which may make it challenging to open pill bottles.

Adherence decreases as the number of
daily medications increase.

Ways to Improve Cancer Medication Adherence With Older Adults

Make sure to have clear instructions for all cancer drugs.   A doctor or nurse should review the instructions in the office and also provide written instructions to take home.     Be sure to ask questions if anything is unclear or confusing.  

  • Caregivers and loved ones should fully understand the medication instructions.       Cancer medication instructions are often complicated, so it's helpful for caregivers and family members to understand the instructions as well, even if the person with cancer can take the medication without assistance.
  • Have an updated, written list of medications in hand, when talking with health care professionals and caregivers.
  • Ask the pharmacy to provide easy-to-open medication caps, pre-loaded medication dispensers and large print medication labels.
  • Use a pharmacy that provides home delivery of medications, such as specialty pharmacies that ship overnight.
Resources

The National Transitions of Care Coalition (NTOCC) has some helpful tools to help you organize your medications.   NTOCC has created My Medicine List for persons who take multiple medications or visit the doctor often, to help manage their medications and medical appointments.   Visit www.ntocc.org/Portals/0/My_Medicine_List.pdf   for more information.  

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Bio:  

Stacy Collins, MSW, is a Senior Practice Associate at NASW, specializing in adult and pediatric health care issues. Ms. Collins has over 20 years of experience in health care advocacy, education, and direct service with national and community-based organizations.     As one of the NASW staff covering oncology, Ms. Collins developed a web education course for social workers on promoting adherence in oral chemotherapy, in conjunction with the National Coalition for Cancer Survivorship.   Prior to joining the NASW staff, she was the project director for a federally –funded initiative to develop community engagement strategies for large-scale cancer clinical trials.   Ms. Collins holds an MSW from the Catholic University of America and a BA from the University of Virginia.

Hispanic Heritage Celebration 2008

Introduction

We asked several outstanding Hispanic social workers to tell us why they chose social work as their profession and what they see as challenges to serving the Hispanic community today.

Aida Rodriguez, MSW, LCSW
Mental Health Social Worker
St. Louis, Missouri

Ms. Rodriguez and her son Zach

Q.  What is your area of expertise?

My name is Aida Rodriguez, and I am a Cuban-born citizen of the United States. My family emigrated here in 1960, but since then I have lived not only in the United States, but also in Spain for five years, and in Uruguay for two. I have lived in Saint Louis, Missouri, since 1991.

My area of expertise as a social worker is mental health. I currently work as a medical social worker at an inner city clinic, where I also do counseling with patients. In the recent past I worked as a sex offender treatment specialist through the Missouri Sex Offender Treatment Program at Farmington Prison in Missouri, where I was hired because of their need at the time to have a Spanish-speaking therapist who could conduct group therapy in Spanish for a small contingent of incarcerated Hispanics. For two of the three years I worked extensively with English-speaking offenders, and in addition I helped to integrate a small but very diverse group of Spanish-speaking offenders into the therapeutic community environment, and led classes and therapy groups for them in Spanish. I saw significant change occur as those men learned about the many factors which led to their inappropriate behavior, and about the role of personal choice and personal responsibility in all matters. For some, it was the first time they had contemplated such ideas, or developed friendships and dared to tell their stories to anyone. All of them struggled with their demons, and with cultural notions which could only come out into the open by doing therapy in Spanish with a therapist whose native language is the same as their own.

Today, most of my clients are low-income immigrants, and most of them are undocumented but have children who are born in the States. While I do counseling with these clients as well, it is of a different nature, often directed at cultivating self-esteem, improving domestic relations, and at developing parenting skills.

Q.  Why did you choose social work as your profession? 

I came to social work "later" in life after being a stay-at-home mom for a number of years, and my interest initially was simply to enter the field of mental health and develop a private practice as a psychotherapist. Having experienced the psychological and emotional drama of immigration myself as a child, I had early on developed an intense desire to understand how people think, why cultures are so different, and why folks behave the way they do. Social work seemed to be a great way to scratch that itch, and turned out to lay the perfect groundwork for what I wanted to do professionally.

During my years at George Warren Brown School of Social Work at Washington University I learned that I also had a keen interest in community development studies, and in international social work as well. It was a revelation when a professor said one day that in order to do International Social Work one no longer had to travel, so great was the influx and diversity of immigrants and refugees into the United States. All my interests somehow came together and astoundingly, a path in this career has indeed been unfolding as I put my skills and interests to work. Being a bilingual Hispanic has been key thus far, and I believe it will continue to be so up ahead.

Q.  What do you believe are the biggest challenges to serving our growing Hispanic population?

Dealing with the results of a history of trauma is and will be one of the greatest challenges of serving our Hispanic population. While this topic is not often addressed in an open way, it is an important underlying issue for our Hispanic populations. A great many Latin American countries that have experienced devastating political instability, terrorism, extreme poverty, family disruption, and the decay of hope over time. Those places and their bleak realities may seem far away, but the people of those countries are right here among us in the Unites States mowing our lawns and installing our roofs. They hail from El Salvador, Nicaragua, Mexico, the Dominican Republic, Honduras, Guatemala, Cuba, and Argentina, and more. Besides the anxiety and mood disorders with which much of the general public is now to some extent familiar, many of these people have a history of traumatic stress and PTSD or are strongly impacted by a loved one who suffers from these conditions. Their psychological and emotional experiences are complicated by a wide variety of practical problems, not the least of which have to do with immigration and language, as well as economic factors.

Also, as the newer influx of Hispanics see their children grow up bilingual they will struggle with the cultural gaps that immigrant families experience when the second and third generations come around. There will be great challenges for the aging population, a great many of them who are illegal immigrants, some of them quite uneducated and even illiterate, who worked hard, but were never able to save for retirement or pay into Social Security. They will become dependent on their American-citizen children for their financial support, but it is unclear whether many of these youngsters will have the educational preparation to support them here. Many of the older generation will return to their countries, and hopefully be able to retire on what money they were able to save, if any, and hopefully receive money from their children living abroad.

The separation of families due to labor immigration has impacted the cohesion of Hispanic families profoundly, and we are seeing and will continue to see the burgeoning phenomenon of the single Hispanic mother, and the need for Hispanic men to find meaning to their lives in a culture where marriage and family cohesion are not the norm. This will impact the new generation too, and hopefully it will result in children who will grasp the opportunity to become self-made individuals, taking the best that their backgrounds offer, and discarding the rest.

I believe that the social work principle of EMPOWERMENT will play a key role in our work with Hispanic individuals and those of other cultures. As social workers we should strive to reassure our clients that healing is theirs to have if only they reach for it. We must work to remind our clients that they can learn to dream again – or perhaps, learn to dream for the first time, ever.

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