Do you and your family need some time together to learn about managing the challenges of treatment and survivorship?

The Cancer Services of New Mexico offers a three-day escape from the day-to-day challenges of living with cancer this September when the whole family can take part in the Family Cancer Retreat.

The entire weekend is free, but is open only to New Mexico residents. 

• Cancer Family Retreat
• September 24-26, 2010
• LifeWay Glorieta Conference Center
• Glorieta, NM (near Santa Fe)

Supervised child care and recreational activities are provided for children and teens during the educational sessions so that parents can give their full attention to the program.

You can get an application online or from many oncology practices and cancer programs in New Mexico.  For more information call Mike at (505) 239-4239.

View a video about the program.

Some headlines from this issue:

• Palliative Care: Not Just for End of Life
• Listening to the Little Voice
• Patient to Patient Advice for Caregivers
• Health Care Reform & Cancer: Your Implementation Guide

You’ll also read testimonials from advocates who attended the C3 Call-on Congress in March and learn about the young, innovative researcher who is looking into new treatments for late stage colorectal cancer, thanks to a grant from C3.

To receive Momentum free at home, sign up at the C3 Action Center.

In other headlines, both patients and doctors liked virtual, computer videoconferencing visits, and the FDA reports that shortages of fentanyl patches have been resolved.

Research Reports

• Finding cancer at a late stage is more common in Illinois cities than in rural areas. Colorectal, breast, prostate, and lung cancers — are more common in the most densely populated areas of Chicago and follow a pattern of reduced risk as the area population decreases. There was a small increased risk in the most remote rural areas. Researchers used data from Illinois State Cancer Registry from 1998 through 2002. Even after accounting for socioeconomic differences and access to nearby health care facilities, the disparities between city and rural remained. Writing in the early view edition of Cancer published May 11, 2009, geographer Sara McLafferty, Ph.D. said, “The observed pattern of urban disadvantage emphasized the need for more extensive urban-based cancer screening and education programs.”
• Telephone calls and personally tailored printed diet and exercise information reduced the rate of functional decline in older, overweight long-term cancer survivors.  They lost weight and their physical activity, diet, and quality of life improved.  At the beginning of the year-long program both the group in the program and a control group had functional abilities averaging 75.7 on a 100 point scale.  During the year, overall scores declined 2.15 points for survivors in the program compared to a 4.84 loss for the control group.  Leg strength increased,while the control group’s leg function declined further. Program participants were over 65 and had survived cancer for more than five years. Miriam C. Morey, Ph.D. at Duke University reported the results of the study in the May 13, 2009 Journal of the American Medical Association.
• The caregivers of cancer patients show very real changes over time in blood markers of inflammation — both those that promote inflammatory changes and those that protect against it.   Family members caring for patients with a very aggressive form of brain cancer had blood and saliva tested.  A matched group of controls, similar in age and background but free of major life stresses, were also tested.   Psychological tests showed the caregivers were more stressed than the average population and had more depression.  Excess inflammatory response left them vulnerable to heart disease and other illnesses that are triggered by chronic inflammation.  Nicolas Rohleder and  his team from the University of British Columbia published their work in an early online edition of the Journal of Clinical Oncology on May 11, 2009.

Other Headlines

• Virtual visits with a doctor rated well with both patients and doctors.  Patients found talking with a doctor via desktop videoconferencing satisfactory in the time spent with the doctor, personal aspects, and ease of the interaction.  Patients in a study conducted at the Massachusetts General Hospital saw two different doctors, one via teleconferencing and one face-to-face.  They had similar evaluations for both encounters.  Another group saw two different doctors face-to-face without use of telemedicine.  The two doctors agreed on diagnosis 84 percent of the time in the first group, using both teleconferencing and face-to-face visits and 80 percent of the time when they both saw the patient only in their office.   Doctors Ronald Dixon and James Stahl wrote about their study in the Journal of Telemedicine and Telecare.
• The FDA  has announced that the shortage of fentanyl patches has been resolved and that the market is being supplied by five different firms.

The term compassion fatigue began to be used in the 1990′s to describe physical and emotional affects sometimes experienced by health care professionals caring for patients facing  limited possibilities of recovery.   It goes beyond empathy or feeling bad  for their patients and leads to setting up walls of distance from patients as a means of self-protection.

Researchers at Indiana University School of Medicine and Regenstrief Institute reviewed almost sixty studies of compassion fatigue, finding that it often takes a toll not only on the health care workers who experience it but in the places where they work.

People with compassion fatigue are tired and irritable.  They may drink too much or engage in other destructive behaviors. Sometimes they painfully re-live the deaths of their patients.

Compassion fatigue can lead caregivers to try to protect or insulate themselves by loss of compassion, cynicism, or boredom.  Other staff members may notice their decreased productivity and more frequent sick days.  Eventually, the syndrome leads to dissatisfaction and turnover.
Dr. Carney Doebbeling, a psychiatrist at the IU Simon Cancer Center asks,

How do you deal with compassion fatigue if you see patients every single day? In order to provide the best care to patients, the system, beginning with training in nursing and medical schools and residency, has to do a better job of helping those who go into cancer care learn what to expect and how to deal with it. On the job we need to create supportive work environments where supervisors and colleagues are aware that those who care for the sickest of the sick may be vulnerable to the triggers that could bring about compassion fatigue.

Dr. Doebbeling continues,

We are taught in medicine to be brave and to be strong, but there should also be a time and place for emotional expression, and perhaps even for crying. Doctors, nurses and other members of the healthcare team must be steady sources of support for patient. But when the patient encounter is over, at the end of the day, the doctor or nurse or social worker or clerk needs to be able to process everything they have seen and experienced. We need to support people who work with the sickest of the sick.

SOURCE: Najjar et al.,Journal of Health Psychology, Volume 14, Number 2, March 2009.

In busy practices we use the caregiver to make sure all appointment are kept, to ensure compliance with therapies, to watch and evaluate patients, and identify red flags about when to call or get concerned.

Caregiving is a full-time job. Sometimes this job is so overwhelming that you can often forget your own needs in favor of your loved ones. Whether you are caring for your spouse, partner, parent, child, or friend, you have an enormous responsibility and play a crucial role in the health care team. Every cancer patient and their family members know how important a caregiver is. We need to make sure that caregivers are taking care of themselves to allow to them continue to be caregivers.

Offering help to a family with a sick person is critical for the well being of the patient and his or her family. However it is impossible to describe a scenario that applies to all people with cancer and their families. The caregiver’s role will change as the treatment and disease changes.

What defines a caregiver? Some of the most important aspects are commitment and devotion.

The challenges of caregiving include physical and emotional stress which can lead into less time for personal and family life, often the need to balance job and caregiving responsibilities, financial hardships associated with caregiving, potential lack of privacy, and feelings of isolation and loneliness.  It is easy to understand that caregivers are feeling often stressed and overwhelmed.

In some cases the caregiver can feel angry, sad, or worried. It is normal to have these feelings of sadness and anger. Caregivers  may be angry at themselves or others, including family members. Caregivers need to talk with someone if their feelings get in the way of daily life. The doctor may also be able to help by identifying needs or stresses of the caregiver.

Most of the time caregivers are  family members or friends who provide constant physical and emotional care of a person with cancer. The majority of them are women (about 75%), and almost half are older than 50. They usually provide emotional support, administer medications, help control symptoms and side effects, provide proper nutrition, and report any problems to the doctor.

Our job is to make sure that caregivers can share their feelings with others who can help such as counselors or social workers. When seeing patients, we need to make sure that caregivers are also evaluated and included in the plan for the patient.

Caregivers should know that no one is perfect and it is okay to make mistakes.  You don’t have to pretend to be cheerful. It’s okay to show that you are sad or upset. Focus on things that are worth your time and energy. Let small things go for now. For example, don’t fold clothes if you are tired. Remind yourself that you are doing the best you can.

The most important thing is asking for help. Think about tasks you can give to others and let go of tasks that aren’t so important at this time. Asking for help also helps your loved one. Don’t be afraid to ask for help.  People may want to help you but don’t know what you need. Here are some things you can ask them to do:

Help with tasks such as:

• Cooking
• Cleaning
• Shopping
• Yard Work
• Childcare
• Eldercare

Help with driving errands such as

• Doctor visits
• Picking up your child

Cancer causes many caregivers to look at life in new ways. They think about the purpose of life, and they start to focus on what they value most. You and your loved one may question why cancer has come into your lives. However, you may also see good things that come out of it, such as it bringing you closer. There are support groups for caregivers at many cancer centers but also in Wellness Communities or online such as CancerCare. Check them out and find out what support is available for you as a caregiver.

In a study of over 12,000 Medicare beneficiaries, nearly 40 percent had someone come with them to their medical appointments. More than half were spouses, about a third were adult children. Other companions included roommates, friends, neighbors, and other relatives.

Older and less-educated patients and those who were in poorer health, were more likely to have someone come to the doctor with them. On average, accompanied patients had twice the Medicare medical expenses.

Companions helped with communication during the visit by

• Recording or writing down doctor instructions.
• Providing information about patient illness or needs.
• Asking questions.
• Explaining the doctor’s instructions.

Patients who rated their health the worst also had the strongest satisfaction with their doctor’s care if they were accompanied by someone else.

Jennifer L. Wolff, Ph,D. and Debra L. Roter, Dr.PH., MPH concluded,

Visit companions are commonly present in older adults’ routine medical encounters, actively engaged in care processes, and influential to patients’ satisfaction with physician care. More systematic recognition and integration of visit companions in health care processes may benefit quality of care for a particularly vulnerable patient population.

SOURCE: Wolff et al. Archives of Internal Medicine, Volume 168, Number 13, July 14, 2008.