CancerCare - Chronic Myelogenous Leukemia (CML)

CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.

Today, I listened along with over 850 other participants to a CancerCare Telephone Education Workshop describing updates on Chronic Myelogenous Leukemia (CML) from the American Society of Hematology (ASH) Annual Meeting. Below is a summary of what I learned.

Chronic myelogenous leukemia (CML) is a form of leukemia linked to a chromosome abnormality. This blood cancer occurs when genetic material is displaced from one chromosome to another. Parts of chromosome 9 and chromosome 22 switch places. This chromosomal translocation is known as the Philadelphia chromosome.

At the 48th annual ASH (American Society of Hematology) meeting that took place in December, leading hematologists presented the latest findings in research. CML can be treated with tyrosine-kinase inhibitors and there are exciting new findings about the success of clinical trials. Sometimes mutations occur that cause resistance to the tyrosine-kinase inhibitors used to treat CML. To overcome this resistance and to increase responsiveness to inhibitors, agents have been developed to block several cancer causing proteins.

Side effects of treatment include fluid retention and pleural effusion (fluid in the chest cavity), as well as fatigue and gastrointestinal problems.

Comfort Zone

image: Copyright © 2008, TIMOTHY MCCONNACHIE Embrace









Part of being a Nancy's Friends volunteer is providing support to patient's families. Having a loved one living with a serious illness and being hospitalized is a huge responsibility for the patient's caregivers. Making trips back and forth to the hospital is a tremendous stress for some. Taking care of pets, keeping finances in order, and getting medications are just some of the responsibilities that friends and relatives may have to take over.

The Comfort Zone is another volunteer program at New York Presbyterian - Cornell that offers caregivers support, information, companionship and rest. It is free of charge and is located on the 4th Floor of the Greenberg Pavillion. If you meet family members on our unit that you feel will benefit from this service, please refer them! I will leave additional information on the Comfort Zone in the binders.

Physician's Assistant

What is a Physician's Assistant (PA)?

PAs obtain medical histories and perform examinations and procedures, order treatments, diagnose illnesses, prescribe medication, interpret diagnostic tests, refer patients to specialists when appropriate and first-assist in surgery. PAs may practice in any medical or surgical specialty, and have the ability to move to different medical and surgical fields during their careers.

PAs are licensed to practice medicine with physician supervision, which may be either in person, by telecommunication system or by other reliable means. The physician supervision, in most cases, need not be direct or on-site, and many PAs practice in remote or underserved areas in satellite clinics. Their scope of practice and autonomy are only limited by their supervising physician's scope of practice, the physician's comfort level, and the PA's clinical experience.*
*Quoted from Wikipedia

Physician's Assistant was selected as one of the Best Jobs in America by Money Magazine in 2007. For details: Money Magazine

For information on historical background, Current State of PA Education, and Future Directions and Controversies:
Physician Assistant Education in the
United States
P. Eugene Jones, PhD, PA-C
Academic Medicine, Vol. 82, No. 9 / September 2007

CHANGES TO DOCUMENTATION BINDER!!

Thank you to those volunteers who were able to attend the Focus Group last Thursday - it was a great success! Several points were made regarding documentation and the following changes have been made as a result:

• The coordinator will be the only person to add new Friends (F) and Acquaintances (A) to the patient census.
  o Volunteers will continue to carry over Friends and Acquaintances from last census to updated census.

• If a nurse or other staff member makes a recommendation for you to visit a patient not marked on the census, please fill out Documentation form and add to “Recommendations” tab in back of binder.
  o I will follow up with the recommendation and make notes or enroll accordingly.

• Documentation forms should be filled out for ALL patients visited (Friends and Acquaintances).

• The Documentation form has been revised. Check off box when you complete an intervention and elaborate on what you did with the patient under Visit Notes in space provided below.
  o Please check off if the patient has any needs and if the patient was receptive to your visit.

• Notes to Fellow Friend has been edited to include those patients visited and not visited.
  o This page is for brief notes of why a patient was not seen (sleeping, off floor, etc.) or for recommendations for a patient to be visited again later in the day.
  

Patient Safety Fridays

Beginning Friday, January 11, 2008, all Fridays are set aside as Patient Safety Days across NewYork-Presbyterian. This is to ensure that every member of New York Presbyterian is doing their best to "Put Patients First." Between 9am-11am, you may see management staff going around the unit and checking for various issues of Patient Safety. These will include Environmental and Clinical Tracers such as Fire Safety and HIPAA compliance. Please make sure you are up to date on RACE and PASS protocols. =)

CancerCare - Marrow or Cord Blood Transplant as a Treatment Option

CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.

Yesterday, January 17th I listened in on a Telephone Education Workshop discussing transplant. There were over 900 people listening in on the call from all over the world!

A bone marrow or cord blood transplant (also called a BMT) replaces diseased blood-forming cells with healthy cells. Diseases that may be treated with a bone marrow or cord blood transplant include: Leukemias and lymphomas, Multiple myeloma and other plasma cell disorders, Severe aplastic anemia, Sickle cell disease, and Myelodysplastic syndromes

I wanted to share with you some of the information that I learned:

There are two types of transplant:

• Autologous - stem or blood cells are collected from an individual and are given back to the same individual. Also know as "full-dose" or traditional transplant.
• Allogeneic - stem or blood cells are collected from another individual (donor). Also called "reduced-intensity" or mini-transplant.

Things to consider when thinking about transplant as an option: disease type, timing during treatment, age, any other medical problems, and reactions to prior treatments.

Advances in treatment have improved outcome for transplant:

• Improvement in supportive care such as growth factors to encourage blood cell growth and recovery of white blood cell counts.
• New antibiotics
• Anti-fungal agents
• For allogeneic transplants, donor options have improved - donors can be someone other than a patient's relative (although relatives are preferred).

One risky side effect of transplant is Graft vs. Host Disease (GVHD). In GVHD, the donor immune cells (T-cells) recognize the patient's cells as foreign and try to attack it. It can happen anywhere in the patient's body and its severity can range from mild to life-threatening.

As volunteers, you should keep in mind that the patient is away from home for an extended amount of time (usually several weeks). In some cases, a patient who has come to NYP for a transplant may live somewhere far away because a transplant center is not available near their home. That means that friends and family have to travel long distances to see their loved one. As volunteers, you lead an important role of being there for the patient when they are alone during this difficult time.

HIPAA Reminder

In light of an incident yesterday, where patient information was found in the volunteer locker room, it is necessary to remind everyone of the hospital confidentiality policy. According to the Health Insurance Portability and Accountability Act (HIPAA) not only can you not talk about patients to others, you must be extra careful to shred all documents containing patient information.

When you write down which patients you are going to see, be sure not to leave the list in your smock pocket or in your locker. There are big gray "Shred-It" boxes with a slit that you can slip in the paper to be shredded. You can find these boxes by the copy machines on the unit in the report room. There is also one located in the volunteer department waiting area.

In addition, remember not to mention patient names in public places of the hospital (the elevator or the hallway).


Thank you!

Focus Group

All volunteers should have received an e-mail that a date has been set for the focus group:

Thursday, January 17th at 7:00pm in the Conference Room next to my office on Greenberg 10.

The purpose of this focus group is to discuss the following topics: changes to the Documentation Binder, this blog, informational sessions on topics of interest (oncology, medical professions, etc.) and anything else that you feel needs to be addressed.

I am excited to get active Nancy’s Friends volunteers together to discuss how the program can move forward in 2008. This meeting is an important opportunity to provide your input based on your volunteering experience. Even if you are new to Nancy’s Friends, I encourage you to get involved!

Please RSVP as soon as possible via e-mail or phone!

For Cancer Patients, Empathy Goes a Long Way

In keeping with the theme of empathy...this article was brought to my attention. The topic of this article is how physicians may feel empathy, but have trouble communicating it to their patients. Some physicians could not read between the lines and ended up rambling in technical terms when all the patient wanted to know was "Am I getting better? or worse?" Interestingly, researchers also found that cancer patients did not always share their emotions with their oncologists.

The New York Times
By DENISE GRADY
Published: January 8, 2008

For Cancer Patients, Empathy Goes a Long Way


See below for the research paper published in Journal of Clinical Oncology, Vol 25, No 36 (December 20), 2007: pp. 5748-5752© 2007 American Society of Clinical Oncology.

Kathryn I. Pollak, Robert M. Arnold, Amy S. Jeffreys, Stewart C. Alexander, Maren K. Olsen, Amy P. Abernethy, Celette Sugg Skinner, Keri L. Rodriguez, James A. Tulsky

Oncologist Communication About Emotion During Visits With Patients With Advanced Cancer

Cancer patients find strength in numbers

Click the link below to view the article that NF volunteer Linda suggested.

Cancer Patients Find Strength in Numbers

By Marilyn Elias, USA TODAY

Understanding Empathy

I wanted to share this article with you from the New York Times. The author is a physician here at Weill Cornell Medical School. As volunteers, you are learning to interact with and understand patients. What appeals to me about this article is that the author points out, "What is critical to understanding someone is not necessarily having had his or her experience; it is being able to imagine what it would be like to have it."

As you volunteer, you develop empathy as you listen to people tell stories of their struggle with illness. Being an empathetic person is not only important if you are looking to develop your bedside manner, but is essential in forming connections with others.

Do you agree with what this doctor has to say? How does volunteering influence your understanding of empathy?

Understanding Empathy: Can You Feel My Pain?

By RICHARD A. FRIEDMAN, M.D.
Published: April 24, 2007