Hospice Patients Alliance: Consumer Advocacy


DENINE SHARPE'S HOSPICE EXPERIENCE

(A Mother's Report)

Denine was our middle child of three. She was an outgoing and happy girl who had many friends. She had a good sense of humor and was funny and laughed a lot. When she was 6 years old, I gave her her first cat "Dixie." She loved animals and people.

She and her brother were in the Civil Air Patrol when she was younger. They searched for lost aircraft. Denine loved sports: ice skating, tennis, and usually won firstplace at trackmeets. She was also very artistic and did painting and sculpting. As she grew older, we took tennis lessons together and she was active in numerous sports including skiing, baseball, tennis and handball.


Denine Ruhoff Sharpe We traveled together to Europe, visiting Poland, Germany, and Paris, France. She also went to London with friends. She traveled all over the U.S. and backpacked in various States.

Denine and I enjoyed going to plays and concerts. We saw Phil Collins, Michael Bolton, the show "CATS" and "Fiddler on the Roof," and many others.

Denine had so many friends and enjoyed life very much. Every day was a new experience to look forward to. We belonged to health clubs together. She was always interested in health and staying healthy. There weren't enough hours in the day, because she wanted to do everything. She even took auto mechanics in school and could change her car's brakes by herself!

When she entered college, she couldn't decide what she wanted to major in. She wanted to major in everything but decided on a double-major: environmental science and criminal justice. She graduated from Western University in 1992.

She began work at the County Jail in the intake department and met her husband Rodney who also worked there. Denine wanted to have many children.

But Denine started feeling sick with abdominal cramps in October of 1994. She went for examinations at the local HMO in Grand Rapids, Michigan where an appointment was arranged with "the doctor." He told her she had ulcers and prescribed various medications. She continued to have abdominal cramping and began losing weight. Diarrhea and constipation became a serious problem.

The HMO "doctor" just told her to take MOTRIN for the pain. Then in January, 1995, she started having rectal bleeding and increased fatigue. When she went back to the "doctor" at the HMO, many times, he told her she was "making too much of this" and said, "there's nothing wrong, you have hemorrhoids."

When Denine's pain became more severe, and she mentioned it to the "doctor," he made her feel as if she were a hypochondriac. Finally, after several visits, and much time, her girlfriend Kristy and I told her she needed to demand further tests. The "doctor" had been continually refusing to take x-rays or a CAT scan. Finally, in June of 1995, he agreed to an X-Ray. Two days later he ordered a CAT scan, and two days later from that, she was seen by a cancer specialist who diagnosed her as having cancer. She had surgery the following day, June 15, 1995.

After her surgery, we found out that this person at the HMO who everyone was calling "doctor," wasn't a medical doctor at all, but was only a physician's assistant (a "P.A.").

All those months when she was suffering severe abdominal pain and rectal bleeding, my daughter Denine had never even been seen by a real medical doctor! And all the nurses there called him "Doctor!" How were we to know he wasn't a medical doctor???

The first time she saw the HMO's real medical doctor was the day following her surgery in the hospital. He actually had the nerve to come to the hospital to see her, but when she visited the HMO, with all her physical problems, he never had the time to see her.

I want to know why all the nurses were calling the Physician's Assistant "Doctor." I want to know why the HMO allowed their staff to call him "Doctor" when he was NOT a doctor! Denine relied on the staff there and believed he was the doctor.

When the cancer specialist diagnosed cancer, he told us he was "sure" he could remove all of the cancer because of Denine's age. We were all so scared. Her sister, Sheryl, her brother Brian and his wife Tammy, her close girlfriends Kristy, Diana and Robin, and I, we were all so scared!

Then, after surgery, the doctor came out of surgery and walked over to me and said what every mother dreads, and my life stopped. He said, "I'm sorry, I never dreamed I'd find this...She's going to die!...She has three or four months" [to live]. I coudn't stop screaming. That's all I really remember. I don't even know how I got home. But I do remember crying all night. Everyone was crying and screaming when we were at the hospital. It was a "nightmare from hell." And it was just beginning.


Denine on left with sister Sheryl My beautiful fun-loving daughter, my daughter who loved everything in life, was dying! I prayed every night that God would cure her and that he would take me instead. I wanted to die. "Please!" I thought and begged. It's so difficult to live now and go on with daily life. I miss her SO much!

Within a matter of four days, from the time the "doctor" finally agreed to have an X-Ray taken, up to the time of the surgery, we arrived at the end of all our lives as we knew them.

About three days after Denine's surgery, June 18, Rodney proposed to her and on July 7th, they were married. She was beautiful. A beautiful bride...and so happy, yet so sad, because she knew that unless God granted her a miracle, she would only live a few months more. Rodney made her happy.

Denine and Rodney lived with me from July, 1995 through April 1996 at my home. Then, they moved into the home they had had built. I didn't want Denine to move. I wanted to take care of her, but I also knew she needed as normal a married life as was possible, under the circumstances.

Chemotherapy started about 6 weeks after her surgery, but soon she was unable to eat. The doctor inserted a central IV line that was placed into her heart. She was fed totally by Intravenous TPN from November 1995 onwards. We watched as Denine grew weaker and weaker, and finally, we called in a local hospice to help care for her.

Rodney had learned to give Denine all her medications by IV, and between Rodney and myself (I'm an R.N.), we gave her all the IV meds and TPN she needed.

Denine had extremely severe pain and started to develop tremors at times too. Her attending physician refused to increase the pain medications when we called to beg for pain relief. Even some of the on-call doctors refused to increase the pain medications enough. We felt there was no one to help us, no doctor who would listen. The doctor even yelled sometimes on the phone, telling us not to bother him and refusing to increase the pain medications.

Denine was in such severe pain, but always kept her eyes on God and loved everyone. She didn't want any of us to feel badly because of her pain, but she couldn't help herself, and cried out moaning in severe excruciating pain. The doctors never gave her real relief from pain, and they even refused point-blank to order an anti-seizure medication she needed to prevent a seizure. She had a Grand Mal seizure at the end and passed on. She never needed to suffer that way, because the doctors had refused to order what she needed to relieve her pain and seizures she developed toward the end. I've heard that when patients are younger, they often need more pain medications to relieve their pain, but the doctors wouldn't listen.

The hospice management refused to intervene on Denine's behalf. They didn't want to upset the doctor who belonged to one of the largest oncology groups in the area, because they thought they might lose the referrals of terminally ill patients to them. So they kept quiet and told all the nurses not to "offend" the doctor. What did they care about my Denine?? Nothing. The nurses cared, but the hospice management which controlled them, wouldn't let them advocate for Denine. The hospice's medical director was required to intervene on Denine's behalf, but she never did. Denine passed away on August 30. 1996. She was 29 years old and just beginning life!






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