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Institute of Medicine (IOM) Report Released: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs

As many of you know from experience, people with cancer and their family members are at increased risk for anxiety, depression, and elevated stress as a result of managing life with cancer. This newly released report explains why psychosocial health care is important and why the health care system should recognize these needs and connect patients to the right services. The Institute of Medicine provides unbiased, evidence-based, and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society, and the public at large.

Download the report brief for patients or providers or read the entire IOM report free online.

At NCCS, we understand the importance of comprehensive cancer care - which involves treating the entire person and not just the disease.  As the IOM states in its report brief for patients, cancer requires collaboration between the survivor, his/her support network, and the survivor's health care team.  Most importantly, as outlined by the IOM, survivors should expect to have:

  • Satisfying communication with doctors, nurses, and others treating his/her cancer;
  • Doctors, nurses, and others treating your cancer ask you about your needs for information and emotional and social support; and 
  • A health care person or team who works with you to develop and carry out a plan that:
    • links you to the information and support that you need;
    • coordinates your medical, emotional, and social care;
    • helps you to manage your illness, treatments, and health. 

NCCS has several resources to help survivors with these important issues outlined by the IOM:

  • Listen to NCCS's Cancer Survival Toolbox module on Communicating to learn useful skills for communicating with your health care team.
  • Read about the importance of speaking up for yourself in assuring quality cancer care.
  • Learn more about the importance of cancer care planning and how you can get your own treatment plan and summary.

 

Tell Your Story

You can also help yourself and others get comprehensive care by telling your story to your U.S. Representative.  It's easy and effective - simply add your experience to this webform that will be sent to your Congressperson.  The letter asks your Representative to cosponsor/endorse legislation, the Comprehensive Cancer Care Improvement Act, which provides Medicare coverage for cancer care planning. 

Leave a Comment

What strategies have you found effective in coordinating your psychosocial health care needs? Share your experience and read thoughts from others below. 

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Submitted by: lynn dennis
February 20, 2008

I have found coordinating psychosocial needs of my patients to be the most difficult aspect of my profession. I can be accountable and earn CEU's as I want to maintain my oncology nurse certification, however the psychosocial aspest of care is NOT SO straight foward. As a health care professional, I need back up in this area so that I am able to do what I do best..clinical nursing...psychosocial needs relate much better to an individual with a social work background.

 

Submitted by: Colleen Meegan RN MSEd MSN
December 4, 2007

If I had not been a health care provider myself, I know things would have been a whole lot worse. In the first place, the radiologist ignored the original order, which was to have a diagnostic, not screening, mammogram with ultrasound. This has been decided between my internist and I based upon my past medical history. She stood there arguing with me and she refused to do the ultrasound. Needless to say, she missed the tumor. Later, when I acquired the films to take to the "other" hospital, I discovered she had circled the tumor and wrote on the film "needs bx." My DCIS had spread to several lymph nodes! The sequelae were: I had to have radical mastectomy as opposed to tissue-sparing; chemotherapy; radiation therapy which burned me terribly, became infected, required extra surgical interventions and antibiotics; the disfigurement; the multiple surgeries; the infections; the pain; the depression and lonliness; the poorly run clinics and the long hours in the waiting rooms; the physicians stating, "my breast cancer patients just don't have pain." I could go on. Fortunately, towards the end when I started feeling like a person again and not MR#1300671, I was able to start being my own advocate. I wish I had had one when I was so weak.

 

Submitted by: Stanley C. Orner Jr.
November 30, 2007

The death of a loved one from the disease of cancer can be debilatating to the caregivers whose tireless efforts to make the sick person more comfortable sometimes seems a ritual a futility. My step father recently succombed to lung cancer, at home, and it was truly devastating. I don't think my mother is over the ordeal nor do I think she ever will be.

 

Submitted by: Kimberly Hutcheson
November 13, 2007

I was scared to death when I herad those words "I'm sorry to say you Do have breast cancer". I was so scared I then began having major unexpected panic attacks at random. In addition to the illness and the scary treatment I faced ahead I had insurance that maxed out at $100k/annually. After two surgeries it had eaten up a good chunk of $100K before chemo had even started.In the middle of chemo I had differnet places calling me about my lack of insurance and trying to determine how I was going to get the medicine & treatment needed. My Mom works at a hospital for 30 years and it took her talking to everyone she could to get to the CFO of the hospital and asking for whatever assistance he can provide before anyone offered to help w/the costs on top of the fight tobeta teh cancer. I was just diagnoised 2 months after Iturned 40. My Mom was stressed out & I was stressed out over evyerthing. After each treatment I I didn't think I could make it through another chemo treatment.I would cry & say I was quitting. It was extremely stressful. Thank goodness I come through and so far all is clear. Please support the Comprehensive Cancer Care Improvemnet Act.For those that come after me & those that come with me please help all humanity by supporting and passing this act. Thank you in advance. This could something youru family memebers needs someday , too.

 

Submitted by: Bill
November 11, 2007

I had prostate cancer in 2002, and had it removed that same year. My method of coping (beyond my loving family's support) was anger. "Cancer, you do not belong here, I want you out and we're going to take you out! Just a few more days to surgery and your a** is mine!" This helped me to feel a certain control and, if you will, revenge for what the cancer could do to me. After five years I remain cancer free, and have a certain confidence now that, with the help of my family and doctor, we could beat that thing.

 

Submitted by: Andria
November 10, 2007

When my Mother was diagnosed with Uteran cancer a few years ago. She said it wasn't serious and would have surgery to remove the cancer and all would be fine, and not to worry. Of course, I couldn't just stand by and wait to hear if the surgery was a success. So I flew up a few days before her surgery to spend time with her. Of course she tried to act brave and pretend like it was no big deal. Just before I left, she told me it was great having me there for those few days, because it took her mind off the worry of the surgery. She revealed she was more nervous than she wanted to seem. I know that people who are sick, don't want to be a bother to those who love them. They will often hide thier true fears and worries. It is only then, that they need you the most. Stress can impair the healing process. By something as simple as spending time with a cancer patient, it can speed the recovery and heal the soul.

 

Submitted by: Phillip Shepherd
November 10, 2007

I sometimes feel alone in my cancer treatment.It is very scary not knowing what to expect or what the results will be and maybe they dont know but it would be more reassuring if someone would take the time to explain some of the details about the treatment.

 

Submitted by: Bobbi de Cordova-Hanks
November 9, 2007

I'm a survivor of three different primary cancers. When I was diagnosed with advanced breast cancer in 1986, no one paid attention to any of our psychosocial health care needs. This has to change. I lost my job and incurred a 17-year medical debt due to the loss of my health insurance and my inability to find another job for two years. I have never been so terrified in my life. As a long-term survivor (21-years), no one told me that I would be at risk for high blood pressure, high cholesterol and ultimately, heart problems. There has to be more attention paid to the long-term effects of treatment. Please make these changes now.

 

Submitted by: Mark Reback
November 9, 2007

Cancer care calls for individual care for each different case and person involved. Please support the Cancer Care Improvement Act!

 

Submitted by: HILDA D. CARTER
November 9, 2007

I AM A CANCER SURVIVOR. BREAST CANCER. I AM IN MY 30TH MONTH. MY PROBLEM NOW IS, THE RADIATION BURNED THE LEFT VENTRCULE OF MY HEART. I NOW CAN NOT HAVE AN MRI OR OTHER TEST I NEED BECAUSE I HAD TO HAVE A PACE MAKER AND DEFIBRILLATOR IMPLANTED FOR MY HEART. I DON'T THINK MANY PEOPLE, OTHER THAN SURVIVORS UNDERSTAND THE MANY TRIALS THAT ONE GOES THRU. THE DAILY WORRIES OF WHAT IF IT IS NOW SOMEWHERE ELSE AND I CAN'T HAVE THE PROPER TEST TO FIND IT. CONGRESS NEEDS TO UNDERSTAND THAT MUCH RESEARCH AND MEDICAL HELP FOR THOUSANDS OF PEOPLE IS NOT BEING MEET. I JUST FOUND OUT TODAY THAT THE WIRES FROM MY DEFIBRILLTOR ARE DEFECTIVE AND NOW I AM FACING SURGERY AGAIN NEXT WEEK. WHAT ABOUT THE PEOPLE THAT DON'T HAVE INSURANCE AND HAVE TO CHOOSE TO LET WELL ENOUGH ALONE AND CAN'T GET THE MEDICAL ATTENTION THEY NEED. GOD HELP US ALL AND WAKE UP CONGRESS.

 

Submitted by: Frank D Coon, Jr
November 9, 2007

I am now a 5 1/2 year cancer survivor. Most of the problems I encountered came after my chemo & radiation therapies. I was diagnosed with approx. 15 "punctuate lesions" in my brain, similar to those experienced by chronic TIA patients and which caused all sorts of problems for me. It took about 2 years of Occupational Therapy for me to recover to about 95% of where I was before my cancer treatments. I was fortunate in that my doctors got right on everything very quickly, which I am certain prevented these problems from becoming worse. I was also very fortunate in discovering The Wellness Community. Both my wife and I went to their "Survivor" and "Care-Giver" support groups where we learned many coping techniques and other information that was invaluable for us. I hope this message helps someone.

 

Submitted by: Betty Grace McCollum
November 9, 2007

I was fortunate to have very knowledgeable doctors and care givers, as well as a great support group during my bout with breast cancer. I kept well informed and adapt my have adopted a healthier life style. I have been cancer free for 19 years.

 

Submitted by: Kathy K
November 9, 2007

Palliative care is now a recognized field of specialization by the American Medical Association. It is needed not only for cancer treatment but for many other medical conditions.

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Jasan Zimmerman, neuroblastoma and thyroid cancer survivor

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