SHOULD CANCER CENTERS EDUCATE FAMILY CAREGIVERS? -- THE FAMILY CAREGIVER PROJECT

What role should cancer centers play in family caregiving? Should they be shining examples of how to manage cancer, by providing family caregivers with the education, support, and resources that will help them keep cancer patients on the right track, or should they hang back and let families fumble through cancer care? Is a "Come What May" approach the most sensible thing?


In search of cancer programs that are taking the lead in this important endeavor, I came upon the City of Hope. This organization hosts what I think is the quintessential offering -- The Family Caregiver Project. The goal of the project is to create a national education program that will strengthen the abilities and capabilities of family caregivers, as a means of improving the outcome of oncology patients. Oncology teams from across the country are participating in the effort to develop family caregiver programs.


If I told you that the March and July courses were already full, what would you take away from that? Cancer centers are getting serious about learning how to help families manage cancer and live better?


What are the classes and presentations offered? Here's a partial list:


Improving Quality of Life and Quality of Care for Oncology
The Challenge of Quality Care for Family Caregivers in Adult Cancer Care
The Challenge of Quality Care for Family Caregivers in Pediatric Cancer Care
Physical Well Being and Family Caregivers: Family Members Providing Care and Caring for Themselves
Models of Excellence: Physical Well Being
Serving Diverse Cultures of Family Caregivers
Review of Family Caregiver Resources
Physiological Well Being and Family Caregiving
Models of Excellence: Psychological Well Being
Family Caregiving Research
Sexuality Concerns
Diverse Family Caregiver Communities
Spousal Caregiving
Distance Caregiving
Communications
Social Well Being and Family Caregiving
Models of Excellence: Social Well Being
Assessment of Psychological Symptom/Screening of Family Caregivers
Spiritual Care
Pediatric Family Caregiving
Support Group and Family Meeting
Communications
The Future of Geriatric Oncology and Implications on Family Caregivers
Spiritual Well Being and Family Caregivers: Deriving Meaning and Faith in Caregiving
Spiritual Well Being


If you are a cancer patient, you should take hope in the fact that oncology teams are recognizing that your quality of life with cancer can be improved through family education and support. If you are a family caregiver for a cancer patient, you should take hope in the fact that oncology teams are recognizing that you are an important part of the quality of life your loved one experiences. And if you work for a cancer center and there is no effort to provide programs to family caregivers, you should get moving and encourage your oncology team to join the effort.


When I look at the offerings for The Family Caregiver Project, I am struck by several things. First, the City of Hope effort understands there is a difference between providing care for an adult and a child. There is also a difference between providing care for a family member and a spouse. Relationships are complicated by the ties that bind us, and it's important to help couples navigate that difficult terrain, in order to improve patient outcome. Second, the City of Hope effort understands that there is a need to work with patients of different cultures. If the family caregiver is an integral part of cancer management, it's important to work with the strengths of the culture. Many societies have strong familial bonds that could and should be utilized in family caregiving. It's important to respect beliefs and understand differences, because the big goal is to help all cancer patients manage the disease and find quality of life.


As more and more cancer patients survive the disease, their needs for family care change. There will be times when cancer patients thrive on their own, but other times when they are bogged down by the physical and psychological burdens of cancer. Knowing that family caregivers are directly impacted by the cancer of a loved one and making strides to overcome the obstacles is an important goal. The Family Caregiver Project is a great start to helping families survive cancer. Cancer families, ask your cancer center if it is participating in the effort, and if not, question why.

BAD DAYS

A funny thing happens over time when you're part of a cancer family. You start to care about others who are going through the experience. At first, it's people you know from the cancer center. You sit with them in waiting rooms. You start up conversations with them in hallways or in the parking lots. Over time, you share stories. Sometimes, when the news is good, you celebrate. When it's bad, you mourn.

As time goes on, you meet more and more people away from the cancer center, and when you find out they, too, have cancer, you feel connected to their struggle as well. The more immersed you are in the big cancer picture, the better you get at recognizing the signs of cancer in others -- that skin pallor that comes with chemotherapy, the weight loss from the disease and its treatment, and even the hair loss hidden by a cap or kerchief. These are the people in your community with cancer.

When I go to the gym, I often see cancer survivors. Some are doing well, working out. They've regained their lost muscle and they are looking healthy again. Others are moving slowly towards their recovery. You send up a silent prayer for them, hoping that whatever comes, they will have what they need.

Yesterday, I was working out on a climber, trying to keep myself motivated. Far across the gym floor, I spied a woman I know has been through cancer treatment. Her hair has grown back now, thick and full. She's no longer flesh and bones. But yesterday, as she walked through the gym, I saw something new. There was pain etched into her face and my first thought was she just received word her cancer has spread. This stranger, whom I've never even met, has had very grave news. As I watched her go through her half-hearted exercise routine, I thought about the change in her. She had been doing so well for so long. Perhaps the sadness that seemed to fill her soul wasn't about her cancer. There are other things in life beyond the disease, aren't there?

Why am I sharing this with you? Because cancer families should know that there are people who care in their communities, sending up silent prayers, hoping for the best. We are strangers who, when we see the signs of the disease and its treatment, can't help but feel connected, even if we never meet. We know the pain our own loved ones endured. We know their struggles, so we can understand the struggles of others we see. We hope they have better days ahead. Maybe the next time I see this woman, the pain will be gone from her face, and the sorrow that seemed so deep will have faded from her soul. But I will still wonder how she is doing. I will still hope for the best for her. That's what the cancer community is really all about.