"An Epidemic of Needless Suffering"
THE COLD, HARD TRUTH ABOUT CANCER PATIENT CARE

Editor's Note: This is a review of the book "Mind, Body, and Soul" by the author Nancy Hassett Dahm.

- Needless suffering Indifference to patient pain - Write-off patients used for "add-on" procedures Families left out of the loop and powerless. This is the front-line view of cancer patient care; from a woman who knows. My name is Nancy Hassett Dahm, a registered nurse and author of MIND, BODY AND SOUL: A Guide to Living With Cancer. I have cared for over 400 cancer patients, most of whom were enduring the end-stage of the dreaded disease. While the heartbreak and tragedy I sought to alleviate daily was enormous, the most surprising thing I discovered is a shocking lack of effective and compassionate care afforded to patients. The bottomline, as I see it: "There is no real cancer 'care."

Physicians focus on treatments, and most ignore pain management and the emotional and psychological needs of patients. In many cases, patients are forced to endure intense pain while consumed with fears and stress. Physicians treat the disease, not the patient; and in most cases, there is absolutely no attention paid to the 'whole person' and his/her family. Having cancer is devastating; being treated only as a patient - not a person with needs and fears - is a needless and heartbreaking tragedy.

I am dedicated to empowering patients with the knowledge they need to take an active role in their own treatment. Part of this process, as outlined in MIND, BODY AND SOUL, is to understand some cold, hard truths about the current state of cancer patient care. Some of the things you need to know are:
� Most physicians are woefully under-educated about pain management, and display a shocking indifference to patient pain.
� Most hospitals cannot adequately care for end-stage cancer patients because of a pervasive lack of knowledge, staff, and understanding of the needs of cancer patients. Isolation is not the answer to patient privacy.
� Some physicians treat terminal cancer patients as "write offs," and use them as proving grounds for their "pet procedures."
� The emotional and psychological impact of cancer - fear, stress, anxiety and depression - is largely ignored by physicians and nurses, even though control of such issues is relatively simple and can dramatically affect patient quality of life and recovery.

I've seen too much needless suffering in cancer treatment, and an appalling lack of attention paid to the very essence of what makes us human - mind, body and soul. While the medical establishment tries to "treat and cure" cancer, an epidemic of preventable patient misery is happening right before our eyes. It doesn't have to be this way, and it won't be this way for my readers.
What is the general care that an average cancer patient can expect? Could it be better? The general care is just that, general. You get tested and you have a consultation with your doctor. He/she gives you treatment options, and you, the patient, have to choose which treatment you are going to use. Will the physician help you with your fear, your pain, your stress, or financial concerns? With the exception of a few well-known cancer treatment centers, there is no whole person cancer care. Our medical system is fragmented, and care is almost entirely focused on treatments and procedures. There is no one single place where patients can go to get everything they need.

There are many reasons for the current state of affairs, but two reasons are predominant. The first is that cancer is a multi-billion dollar business. As with any business, the primary emphasis is on profit. Time is money. In the cancer business, profit comes at the expense of patient care. Treatment centers and doctors' offices are designed to minimize time spent with patients. Many times (and this is well documented in the literature), treatment is given with indifference, and insensitivity. The second reason is specialization. Doctors today are so specialized in various aspects of cancer detection and treatment that they do not have the time, the inclination, or the training needed to treat the whole person.
Could it be better? Absolutely! First, however, it will require that every nurse and physician take responsibility for being accountable for the care they give. Cancer care is only as good as the person who gives it. Patients and families need to speak up! Patients accept the current system because they feel that they have no power to change it. They listen to their doctors with faith. We are still bound by our cultural upbringing in which it is a taboo to question or even to speak up about what the doctor has said. His/her word is law. Well, it isn't law. This same physician to whom you have shown courtesy and respect, could be the same one who would have you undergo a colonoscopy hours before your death. Patients are angry and they voice their complaints, but never to their doctors-the ones who need to hear them the most.

What can hospitals and physicians do to improve care? Every hospital and every physician specializing in cancer care should employ nurses and social workers to work as a team to aggressively manage the many concerns of patients and families. These professionals would be specially trained to assess, develop and initiate individualized care plans that focus on reducing fear, stress, depression, and pain, while increasing the patient's potential for better nutrition, coping and improved sense of well-being. The goals are specifically designed to maximize quality of care and quality of life.
It is not the responsibility of physicians to provide all aspects of cancer care. It is, however, their responsibility to manage and advocate for the care needs of their patients. Cancer patients and families need a tremendous amount of support and aggressive intervention in terms of counseling, symptom management, strategy and coping skills, resource entitlements, etc. Having cancer is devastating; treating only the disease and not the person is a needless and heartbreaking tragedy. Giving care without compassion isn't care at all-it is academics with indifference.
Until the medical system changes, it is essential that you understand what it is that you will likely receive as care, versus what it is that you need and deserve. Whether you are newly diagnosed or have lived with cancer for years, you will benefit from what I have written. It could change your life. It will change the way you look at life. It is the first book of its kind, to combine science with spirituality and philosophy for the soul.

MIND BODY AND SOUL: A Guide to Living With Cancer, has received international acclaim, and is available at Barnes and Noble, Borders, and online booksellers. For more information about the book, visit www.cancerbook.com

Filed January 2003.