Monday, June 3, 2013

Dying of Kidney Disease

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.
One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.
Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.
The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning. 
Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.



Anonymous said...

Yes, this happens, not to this extent, to me. My 14 year old daughter who was suicidal had to get on the phone and authorize the insurance agent to speak to me. She is completely able to refuse treatment, and further, her psychiatrists and therapists will not discuss anything with me. Not to let me know what to do at home, nothing. The state of Washington. Yeah, the same state that just leagalized pot... ludicrous...

Jenn Marshall said...

This happened to me when I was hospitalized for postpartum psychosis after the birth of my son. My husband had to call the police because I refused to take my medication (I was breastfeeding) and since I wouldn't agree to go to the hospital, he had to have me involuntarily committed.

They cuffed me and took me in a police car. I was in the hospital for six days and when I was deemed well enough to go home, I was handcuffed again and taken to the courthouse for my trial where I had to testify to prove I was ready to go home and continue care with my own doctor.

It was an extremely humiliating, terrifying, and utterly painful experience. I wish it could have been handled differently, but in the end I am thankful to have received treatment which helped me to get well again.

Mental Health laws need to change in order to save lives and allow people to get the treatment they need in a humane, caring, and effective way. Not in a way that will exacerbate their condition. It doesn't have to be this way.

Thank you, Cinda, for writing this piece and exposing the harsh realities of our current system.

Bipolar Bandit said...

Thanks for sharing such a powerful message! The sad thing is that similar things are still happening to too many families.

Jeanine said...

My daughter, 12, has bipolar disorder and some other problems to throw into the mix. She is stable now and things are good. This is the first period of stability we have had in several years. Anyway, my husband and I always considered moving to the state of Washington and bringing our daughter with us. It is good to hear about what goes on in other states. Thanks for your story, and wishing you the best for your daughter.

Cinda said...

Thank you for your comments. I don't know that the general public realizes that this even happens. So many things need to change....

KathyMorelli said...

My goodness! I am stunned, this is awful.

Unknown said...

I am so sorry you had to go through this. My heart goes out to you all. We had a similar incident with our 18 year old daughter. From the time she was 14 until she turned 18 she had been in numerous residential treatment centers. She was diagnosed with bipolar, borderline personality disorder, ODD, attachment disorder (we adopted her and her siblings when she was 4 years old) and ADHD. They released her when she was 18 from a treatment center because she was a ADULT and SHE told the doctors she no longer wanted to hurt herself. Believe it when I say - the staff couldn't wait for her to be discharged!!! She had nowhere else to go so we allowed her to come home. 2 days after she came she snuck out of our house in the middle of the night with her 16 year old brother. They went to a neighbor's house about 2 or 3 blocks from our house (we live out in the country on about 13 acres)and bought some pot to smoke. They were smoking pot and walking home when my daughter threw herself down in the middle of he road pulled her skirt up and started "pleasuring herself" in the middle of the road in front of her younger brother. She had no idea where she was what she was doing or who her brother was. She was screaming and cursing at her brother to not touch her. My husband and I were asleep at home and had no idea any of this was happening. My son managed to go find a neighbor to help him get his sister home. I woke up from a dead sleep because I heard a loud thump in the other room. I ran out of my bedroom and found my son sobbing histerically. I asked him what was wrong. He cried and said "M---- is sick". My husband heard what was going on and went to check on our daughter. He opened the door to her bedroom and shut it again immediately and told me I need to come NOW!!! I opened her bedroom door and saw the same thing my son saw when she threw herself in the middle of the road. I told my husband to call 911 so that we could get her to a hospital. Two police officers arrived along with the paramedics . I started to explain to the officers the situation with our daughter. One of the officers was very rude. I asked him to please talk very calmly to her and approach her slowly because if she feels threatened she can become very hard to control. The officer said "I know what I am doing". I will throw her straight in jail if she starts to get out of control with me" I started to cry. I told the officer that she didn't need jail that she was sick and she needs to go to a hospital to get help and that jail was not not going to help her! The officer screamed at me and told me "I should have been getting her the help she needed" I told him we were doing everything we could to get her help and that she had been to numerous treatment centers over the years and he didn't know what he was talking about. He told me and my husband to stay outside while they went to get our daughter. I told him this was my house and I was not staying outside. My husband, myself, the officers and the paramedics all went in the house together. Luckily the paramedic had heard what I had told the officer about approaching our daughter slowly and calmly and that is exactly what he did. He explained that he was there to help her and that he just wanted to be sure she was ok. While he was taking her vital signs our daughter threw herself on the floor and began asking the paramedic if he wanted to have s-x with her? At that point the paramedic looked straight at the officer who was so mean to us and said "I am in taking charge of this young girl and I AM TAKING TO THE HOSPITAL!!!!". I was so thankful for that kind paramedic.

Piercing said...

That's horrible. It's horrible that the parents felt that was their only alternative. In some countries, people have the right to make medical decisions at 17, which is a better age. Her parents should push for a change to legislation and better education in the legal system.