Kicked out of Hospital and Medicines ceased

[Niro]

Below the 5 dotted breaking line is a short version of the story without the back log.

A brief summary. My sister-in law was diagnosed 3 months ago. As one usually finds out after a run in into the hospital for something seemingly unrelated. Having reviewed her blood samples, a week later it was also discovered her alkaline phosphatase was high, therefore the specialist nurse prescribed Septrin at 160mg/ 800 mg (Forte tablets co-trimoxazole). 5 days later the specialist nurse asks to see her 2 days earlier than scheduled due to further results reviewing  her albumin (protein) had reduced. So he wanted to draw further blood to compare to the previous week, in order to determine whether the protein levels had lessened further.

2 days later she is asked to come into the hospital; this time the specialist nurse hands over the care of my sister-in-law to a Consultant. The consultant informs her that the reason they wanted to see so quickly again; is she is becoming a bit anemic, her blood and protein levels are low. At this meeting she reviews that after a week of taking Septrin her mouth is sore, her gums are bleeding, lost a lot of appetite and as a result some weight. On close inspection the Consultant locates mouth thrush. She also says the food sticks down her throat, and doesn't feel like eating. She mentions her psoriatic skin seems clearer, however she also notices fungus on her thumb (something she has never experienced). It now had been 16 months since her first ever psoriasis breakout. She also complains of feeling tired, a lot more than usual, and low energy levels. She emphasizes this several times during this meeting.

After the meeting the Consultant prescribes  some fluconazole (only for a week/ 1 capsule per day) to treat the thrush, keeps the Septrin. Without the resistance test results the Consultant is tempted to get her better quicker and therefore prescribes her Truvada 200mg/ 245mg (film-coated tablets), Darunavir/ Prezista 800mg (film-coated tablets) and Norvir/ Ritonavir 100mg (film-coated tablets). Saying if need be drugs can be changed in the following weeks.

The consultant informs her she should be better in 2 to 3 months time, on this combination of drugs. She should have a at least a small snack with the food because one of the drugs is less effective on an empty stomach. The consultant further explains once the medicines start to work, she would start to feel physically better. When the medicines get it to her system, she should get more energy.

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To cut the story short, what transpired is she had got weak and weaker over the past 3 months. 1st further reduction in energy levels to the point go being unable to lift a filled out tea mug. Then her speech slightly slurred (1.5 words in a given sentence). Her pace of movement slowed. When climbing her home stairs she now had to place her hands down (all four limbs on) in order to support her movement. Further low levels of energy and wanting to rest-sleep most hours.

These symptoms gradually progressed throughout the weeks (during this time she had regular reviews with the consultant, every 2 weeks). The consultant maintained the prescribed drugs were not the cause of these symptoms and it is just coincidental that their appearance coincided with the advent of the prescriptions.

Although her physical condition seemed to worsen the Consultant observed the viral loads and immune levels were improving for the better. So were the protein levels.

Due to the continued progression of the previous mentioned symptoms. She was admitted and a CT scan and X-Ray carried out. This is 2.5 weeks ago. The results determined she had experienced PML/JC Virus Infection. To treat this the hospital staff decided upon using steroids in order to control swelling in the brain. This method was chosen without informing the next of kin. Perhaps they thought the visitor in their presence when they were explaining this was a next of kin. During her time in hospital the symptoms further heightened (Neurological deficits) to the point were by her only physical action is node and blink to questions. Bed ridden to a feeding tube. (Which has be put and replaced several times, citing it was not well placed. If after an 18 hour use, it may get misplaced. Prior to this she had endured 4 days without eating or drinking, due to the medical staff being unable to correctly place  the feeding tube.)

Fast forward this week:

Upon quietly deliberating between themselves the Consultants and Doctors, wish to only offer palliative treatment and have ceased to give her, her medication. Declaring the situation terminal they wish to send her to a Hospice or Nursing Home.

What would in your opinion be viewed as the best course of action from here on?

The family are set to discuss with this group of doctors, on what they have proposed. What would be your important line of questioning?

[Jeff G]

Welcome to the forums ... and Im sorry that its a person you care deeply about that brought you here .

Its difficult to say with any accuracy what your sisters prognosis is and why her doctors think hospice is the best course of action . PML is a devastating condition and can do much damage to the brain before its diagnosed sometime .

Correct me if I am wrong but you are asking us if hospice is better than a hospital and what questions to ask the doctors ?

[buginme2]

I'm sorry to hear about your sister and law.  This is tragic.  PML is a horrible condition.  Your sister and her family can always as for a second opinion from another Infectious Disease doctor.  I have no experience with this specifically so can just hope it works out.

[Niro]

Welcome to the forums ... and Im sorry that its a person you care deeply about that brought you here .

Its difficult to say with any accuracy what your sisters prognosis is and why her doctors think hospice is the best course of action . PML is a devastating condition and can do much damage to the brain before its diagnosed sometime

Correct me if I am wrong but you are asking us if hospice is better than a hospital and what questions to ask the doctors ?

This is correct, for I intend to clear as much up as much as I can regarding the whole situation. Seeking answers on their chosen decision? The reasons behind them? Why stop the medication? If they suggest it is because she can not swallow a tablet, is anyone familiar with a way of placing the medicines into a feeding tube or IV? Is their an alternative liquid form based medicine, we could switch to? Must really quit her medication?

Any other questions you believe would be helpful to ask, this doctors?

Thank you for you welcome Jeff G.

[Niro]

I'm sorry to hear about your sister and law.  This is tragic.  PML is a horrible condition.  Your sister and her family can always as for a second opinion from another Infectious Disease doctor.  I have no experience with this specifically so can just hope it works out.

Thank you. Does this have to be from a doctor from the same hospital or can I obtain someone from a different hospital to come and make a second observation?

[mecch]

The title of your thread suggests you feel that it is a violent action and maybe an unjust action by her doctor(s). 

I can guess that all the diagnosis out of the blue and the rapid mortality must be a shock.

Since PML is fatal, calling for hospice and palliative care may not be wrongheaded, just the unfortunate reality. There are so many considerations that doctors (and by extension also hospitals and insurance plans) go through in pronouncing a fatal prognosis.  From a distance, its quite difficult for someone to have input on a situation we know little about.

I am very sorry you have to go through this.

I can't speak to why or why not continue the HAART at this point.  Can't you ask the good and direct question you asked us, above (why stop, or why not continue) directly to the doctor and get a response?

[Niro]

You observe well, With the chosen title thread. I am very thank you for you balanced view Mecch. It is helpful a lot. I ask as you have suggested.