Cancer - information and care planning

Health care providers are hesitant to use words life "curative" or "palliative" with their patients.  Hope is a strong component of healthcare, especially when outcomes are unsure, unknown and still being researched for diseases for which we don't know causes, best practices for cures, etc.  That's cancer.  And this lack of information is difficult for families and patients -- just ask me and my husband, who are going through radiation and chemo for brain cancer.  But we can -- and need to -- make choices that have some element of reality.  Symptoms are very real during radiation and chemo, as well as following surgery. 

Here are some thoughts to spur your thinking and questions for your healthcare team:

There's more to supportive cancer care than radiation, surgery or chemotherapy.  There's also a tremendous need for quality information for the medical team as well as the patient and the family. Chemotherapy information includes risks, benefits, symptoms, side effects, and treatment intent [curative or palliative]).

Patients with cancer who underwent chemotherapy and, prior to chemotherapy, were informed about the risks and benefits of treatment, including likely symptoms and side effects, and whether the treatment intent is curative or palliative.  This information and care has a bearing on patient outcomes:

• End of Life Care
  
• Getting Better
  
• Living with Illness

Although great strides have been made in cancer treatment, over one-third of patients with advanced stage cancer will die within 6 months of diagnosis.  BUT, two-thirds DON'T! 

While much of the oncology literature focuses on the prevention and early, potentially curative treatment of malignancies, palliation of the symptoms of metastatic cancer and its treatment and end of life care are essential for half of the people diagnosed with cancer.

We all die sometime, of something... but cancer isn't always the cause for a cancer patient's death.  Symptoms, however, are a big part of the cancer patient's reality, their daily life, and have an impact for months, if not years.

Because symptoms are common and high impact, better symptom management offers a critical opportunity to relieve the burden of living with cancer. Systematic reviews identify among the most common symptoms:

• pain
  
• fatigue
  
• anorexia, and
  
• breathlessness
  

Pooled estimates for the prevalence of symptoms in patients with advanced cancer range from 74% for fatigue to 11% for rash and for diarrhea

• pain 71%
• anorexia 53%
• depression 39%
• constipation 37%
• insomnia 36%
• dyspnea 35%
• nausea 31%
• cognitive symptoms 28%
• oral symptoms 20%
• vomiting 20%

Improving Pain is a National Priority

Pain remains strikingly common and may affect more than a third of patients with earlier stage disease and more than two-thirds of patients with advanced cancer. The Institute of Medicine targeted improving cancer pain as a national priority.

Quality Supportive Care

Good supportive care encompasses four important areas:

(1) treatment of cancer-related symptoms

(2) prevention and treatment of the side-effects associated with cancer treatment,

(3) recognition of and support for patients' experiencing psychosocial distress and

(4) end of life care.

Cancer Quality-ASSIST Indicator Set

The Cancer Quality-ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) indicator set was developed to provide tools to assess the extent to which cancer care addresses the symptomatic and informational needs of patients and families.