Lack of adequate pain control
Kathy started on Taxol in August 1999. As the disease progressed, the doctor didn't believe it was progressing that quickly and dismissed kathy's remarks about increased pain. He treated her like she was overreacting and making it sound worse than it was. Eventually scans were done and to the Dr's amazement the disease had progressed significantly in the bones. The pain meds were finally increased giving her a little relief. But during the next few months she was still treated as if she was overreacting and the pain meds were kept low. We had to go to an outside doctor to get help with pain control.

Knowing this now, I would have called the HMO and insisted on a pain specialist.

Case Managers
When you have an illness like this you are supposed to have an HMO case manager. These are people you can call when there are problems. We didn't know about this until after her death and as it turns out it is the doctor who is supposed to set it up for you. So if he doesn't you don't get your case manager.

Knowing this now, I would pressure the doctor for the case manager. If it was not taken care of I'd contact the HMO.

Tests that should have been performed
after chemotherapy
After the initial lumpectomy, 4 cycles of chemo, and radiation, I've learned that many doctors do a lung x-ray to verify that the lungs are still clear and also many doctors perform a tumor marker test. It is up to your doctor to decide to do these tests. Since treating cancer before there is increased tumor burden is very important – I believe this would have shown the lung tumors before they had become plentiful. Her doctor chose not to perform the lung x-ray and I don't believe ever performed a tumor marker test. There is also a test called digital-infrared-imaging (Breast Thermography) that may show activity going on if there is cancer growing in the breast area.

Knowing this now, I would insist on a lung x-ray, tumor marker test, and would get a digital infrared-image every three months. And in the beginning, after surgery, maybe every month for the first three months.

Individualized in-vitro chemo sensitivity test
We were not allowed to get the Rational Therapeutics in-vitro chemo sensitivity test even though we would pay for it ourselves. This $2,500 test is 90% effective to choosing which chemo's NOT to use and 70% effective in the best choice to use. This may have saved her life, or at least given her a much longer survival.

The oncologist led my daughter to believe it was not reliable and wouldn't allow it. With chemo "one shoe does not fit all", and one chemo protocol does not fit all breast cancer. The protocols are based on a "best guess". This just doesn't work for me when there is a test that can predict with more accuracy the protocol to use.

The chemo choices the oncologist used failed. As it became obvious that the chemo's were not working we became insistant upon the Rational Therapeutics test. Again, the oncologist flately refused to allow it telling her she was strong and there were still many chemo's left to try. He led her to believe she had a minimum of 6 months to live but believed even longer. She only made it about 5 weeks until death. Had he allowed us to get this test I believe things may have turned out differently. We had the right to get this test especially since he had no guaranteed treatment.

In addition, during the 7 months of using chemo's which were unable to halt the disease, she was made sick for nothing. The side effects and her suffering from these chemo treatments really bring into question "quality of life" issues. You might want to read "Questioning Chemotherapy" by Ralph Moss.

Knowing this now, I would never do chemotherapy until I had first had the Rational Therapeutics test which is 90% effective to choosing which chemo's not to use and 70% effective in the best choice to use. The statistics from 2 clinical trials have just ended which clearly shows a significant survival advange to choosing chemo treatment using this in-vitro test.

Denial of oxygen
Approximately 4 to 5 weeks before she died, when both lungs' tumor burden were extreme she was denied oxygen at home. We kept begging for it but the doctor kept refusing. The reason was "it isn't bad enough – the HMO won't pay for it." At the time her left lung was 100% tumor and the right lung was more than 40% tumor. This one is pretty hard to believe I know, but it's true?

Knowing this now, I would be on the phone with the HMO and strongly demand the oxygen. But if they refused it I'd insist on a prescription from the doctor and pay for it myself. We did do this, I just regret that we didn't do it sooner so she would have had the oxygen for a longer period of time.

Not being listened to
Oncologist's consistent under-estimation of the aggressiveness of her disease and not listening to or taking her seriously.

Knowing this now, I would not be nice and I would not be quiet. I'd be very direct with the oncologist and if the problem was not handled I'd be on the phone with the HMO until the problem was solved. You might think why didn't you change oncologists. The answer is that there were limited choices of oncologists in her HMO and according to the other women she talked too, their doctors seemed to treat them equally if not worse than the treatment she was already getting. Her HMO was HealthNet, Hills Physicians Group.

Denial of medications and pain medications
When picking up medication from the pharmacy, frequently they would be denied. We'd have to plan ahead to be able to come home and call the insurance company and get them to approve it, then return to the pharmacy to pick them up. Running out of pain medication at this stage of this disease was totally an unacceptable thing to happen. The added stress of having to go through this to get meds was so stressful for Kathy. Sometimes she'd just be in tears. This was just so cruel.

Knowing this now, I believe if we had a case manager this problem would not have occurred. I'd also be calling the HMO constantly for a solution to this problem until it was solved.

Denial of hospice care until 3 weeks before death
Her oncologist didn't think she was sick enough to warrant hospice care and continually refused to sign the papers in the last 3 months of her life. He finally agreed 3 weeks before she died.

Knowing this now, I would be on the phone with the HMO until they had someone step in and reevaluate the situation. You are entitled to hospice care if you are within 6 months of death. Denying someone this ill the right to hospice care was also very cruel.

About California Medical Lawsuits
According to California Law:

1) You cannot sue an HMO for wrongful death unless you can prove the outcome would have been different.

2) You cannot sue an HMO for pain or suffering, therefore, no attorney will take this type of case.

3) A wrongful death suit or malpractice must be filed within 1 year or you lose your right to sue.

4) There is a ceiling on the amount you may be awarded from an HMO for wrongful death which I believe is $250,000. Several attorneys I talked with said that it would cost them a minimum of $60,000 to prepare the case and the award was not worth it to them.

HMO or PPO
I have switched to a PPO. The cost was about $50 more, but after seeing how the HMO's are protected from anything they do — the extra $50 is worth it to me. And I have a much larger choice in Doctors. I asked a doctor which one was the best and he said BlueShield.

< Previous

1 | 2 | 3 | 4 | Next >