Updated: 3/31/18

Withholding Diagnosis From Patients 
 

I’ve been a nurse for 30 years, and so have my best friend been a nurse for 30 years. We have worked at many hospitals together, and we have taken care of so many patients with all kinds of diagnoses. We have a laugh together, we have cried together, and we have rejoiced together. Many times patients will have a terminal diagnosis and the family is torn about whether or not to tell the patient the diagnosis. 

     About nine years ago, she moved down south to care for her aging parents and to allow for her teenage girls to be raised in a more subtle environment. My friend grew up in the South West and she felt as if the quality of life was much better. My friend and her husband got very good jobs in the area and they settled into their routine.

Pancreatic cancer survivor story

 

       Although my friend’s parents were retired, they lived very active lives. They both worked full-time jobs and they helped my friend care for their grandchildren. My friend, their children, and Grandparents often went to local events. About three weeks ago, my friend’s mother complained of leg pain that was so bad she could hardly walk. She basically had to limp back to the car. When my friend got home, she looked at her mother’s leg and she immediately knew that something else besides arthritis was wrong. Her left leg was swollen from the knee to the foot and it was warm to the touch. My friend immediately took her mother to the emergency room where she was diagnosed with a DVT or a clot in her leg.

 

      The usual treatment was done which included a Doppler study of her legs, and she was started on a heparin drip. Heparin is a blood thinner that is given intravenously to basically thin the blood. Her mother also had slight shortness of breath which would lead the doctors to do a CAT scan of her chest to see if she has a pulmonary embolism. Sure enough, she had a pulmonary embolism. She stayed in the hospital for about four days and her heparin was eventually changed over to Eliquis. Eliquis is a new generation blood thinner that does not require the patient to have frequent lab work. She was also found to have elevated glucose. Her HgA1C was 12 which indicated an out of control blood glucose for a while.

    My friend would go over to her Mom’s house and make sure she knew how to check her fingerstick readings, and to make sure she was taking her medications. About one week after her Mom came out of the hospital, my friend came over and she was ‘fishing” for words and my friend immediately recognized she was having a stroke.

She immediately took her to the emergency room and the stroke was diagnosed. However, she was not a candidate for TpA because she was already taking a blood the blood thinner Eliquis. TpA is a clot buster that is given to patients within 4 hours of the onset of symptoms.

Her Mom was not eligible for TpA anyway because it was not known how long she had symptoms.

    She was transferred to a stroke center in a nearby city. They did a complete workup. They reinforced why she was not a candidate for TpA therapy. They also did another chest CAT scan to assess the pulmonary blood clot. The only deficits the patient had was expressive aphasia. Expressive aphasia occurs when the brain attack happens in the frontal area of the brain where the speech center is.

Expressive aphasia is when the person can understand what is being said to them, but they are unable to “express” their thoughts fluently. For example, in the person’s mind they might want to say “my leg hurts”, but it might come out as “my arm hurts”, or something completely irrelevant. The following day the doctor came into the patient’s room and said, “ I have bad news”. My friend immediately said to the doctor “let’s talk outside”. The patient did not comprehend what the doctor said. When they went outside to talk, the doctor told my friend her mother had PANCREATIC METASTATIC CANCER. What? What? What do you mean? This is “just” a blood clot? My friend told the doctors do not tell her mother right away because my friends knew her mother’s fragile state.

    The patient remained on heparin intravenously because of the blood clot. Later that night my friend observed her mother was sleeping more, and her right side was weak. She notified the doctors and the nurses and they sent the patient down for a CAT scan of the head. The patient now has a subdural bleed, and the patient was transferred to the neuro-intensive care unit.

     Miraculously, the patient recovered from the hemorrhage in the blind and was transferred back down to the step-down unit. This is when the doctors brought back up diagnoses of the pancreas cancer.My friend’s mother continues to progress, and her speech patterns became more clear.

My friend and her mother decided that she would go to rehab to continue her speech therapy. The doctors had a meeting with my friend to talk about why my friend did not want her mother to know about the pancreas cancer diagnosis. The doctors told my friend that it was their ethical duty to tell the patient. My friend told the doctors that she knows her Mom and her Mom could not handle that diagnosis at this time. The doctors told my friend that she was too weak to go to rehab and they should consider palliative care. My friend told the doctor that she would get medical power of attorney. The patient went to rehab without knowing her diagnosis of pancreas metastatic cancer.

    I have worked with physicians in all specialties form over 30 years. Sometimes they get so involved in the “physical” aspects of medicine, they forget about the “emotional” part of healing. What do you think? Should patients ALWAYS be told immediately of their diagnosis? Do patients have the right to know their diagnosis? 

Updated:

3/30/18

The patient was discharged from the hospital without knowing her diagnosis. She was admitted to a rehab center where she quickly deteriorated. After 7 days she died peacefully in her bed at the rehab center. She was never told her diagnosis, however, after talking to her daughter, we think she knew something was wrong.

    

    

 

 

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