Sunday, March 1, 2009

How Shall My Aunt Die?

The corollary to the question posed in the title of this blog is, “What Part Do I Play in Her Death?”

My aunt is 92 years old and has Myelodysplastic syndrome (MDS) of which she is never going to recover. Since oncological remedies are rigorous beyond what my aunt wishes to endure, she elected to live out her days with few medical innervations and spend her last days as comfortable as possible. To date, that includes a monthly blood transfusion, which is time consuming but not particularly an onerous procedure.

My aunt is a resilient woman. She was once on Hospice in northern California for her MDS condition, but recovered to such an extent that she was taken off Hospice. She again lived on her own doing everything for herself save driving. As bad luck would have it: she had a fall and injured an arm; ended up in the hospital; and subsequently spent a week or so in a rehab center. The hospital/rehab stint resulted in her deteriorating to the status of a bedridden invalid failing rapidly. The rehab center said that they could do nothing further and discharged her.

My aunt was in such a bad state that she was unable to be transported via a passenger car, and I had her transported 300 miles in an ambulance to my residence. By the time my aunt reached my house, she had dramatically improved. It is amazing what the mind can do when the person feels connected to caring family and not left in the charge of outside facility caregivers. Since her arrival five months ago, she has recovered much of her lost ground.

Now my aunt is enduring a hospital stint for a bout of pneumonia. The hospital admitting doctor took me aside and stridently argued for my aunt to again become a Hospice patient. His point was that she is never going to get better due to the MDS, and with the start of dementia, she is going to become a revolving door with pneumonia and other unspecified problems. He stated that he would not write an order for her to receive a blood transfusion.

I’ve got some problems with the doctor’s bleak assessment and his pushing of Hospice. Yes, he is correct in a long-term prognosis, but it is not, in my estimation, my aunt’s reality today. Her beginning dementia is greatly reduced with medication, and it is not possible to know her future mental condition. Today, she is mostly alert, lucid, cognizant as to time, date and place, and engages intelligently in conversation. Yes, she will brush her teeth and then forget that she has done so and brushes her teeth a second time. Most importantly, my aunt wishes to continue receiving her monthly blood transfusions. If my aunt is admitted to Hospice, the transfusions will cease. She must receive a transfusion soon or within a couple of weeks her hemoglobin count will drop into the “6” level, and she will be dead.

As I sit here by her hospital bed, the charge nurse advised me that a Hospice representative will be here in a few minutes to consult with us. Guess what? We are not going to be stampeded into Hospice on the word of one doctor, who has spent a total of 10 minutes with her over the duration of 24 hours.

I am my aunt’s legal/medical advocate. That means that I stand between her and a medical system that does not necessarily operate in her best interest. There are still medical procedures which are agreeable to my aunt and fit within her definition of an acceptable quality of life. My agreeing to Hospice would be a virtual signing of her death certificate. This is not the time, and Hospice is not happening now.

What happens to individuals who do not have an advocate to question, challenge and nullify a physician’s assertion?

Update 3/2/09: Hey Doc Your License Says MD Not GOD


LClark said...


My name is Leigh Clark and I am the patient educator for the Aplastic Anemia and MDS International Foundation. The foundation can help provide you with answers to your questions about MDS. Please contact me by calling 800-747-2720 or email I look forward to hearing from you soon.


Leigh Clark
Patient Educator
Aplastic Anemia & MDS International Foundation

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