|Posted on February 5, 2014 at 12:35 AM|
No one should be stripped of their human rights because they are ill. We have a right to be treated with dignity and respect. We are all vulnerable when we become ill and enter the healthcare system. We must make sure that laws are enforced and human rights are respected for all people.
Karina Hansen is a 25-year-old Danish woman with severe ME (Myalgic Encephalomyelitis). ME is a neuroimmune illness with the defining characteristic of post-exertional malaise or post-exertional neuroimmune exhaustion. It has been coded as a neurological illness (G 93.3) by the World Health Organization since 1969. Cases that are severe can cause a patient to be bedridden and in need of a carefully controlled environment in order to prevent exacerbation of symptoms. Light, noise, and touch can all be physically painful to an ME patient.
Karina has been battling this illness since the age of sixteen with the help of her loving parents. It took seeing different doctors at different institutions to receive the correct diagnosis. After receiving treatment that made her worse, Karina and her parents took steps to prevent this from happening in the future. They hired their own physician and dietician to treat Karina. Her mother, Ketty, was her full-time caregiver. Because of Karina's extreme sensitivity to stimuli such as sound and light, her parents moved into a trailer in their backyard during the day to allow Karina the quiet she needed. Karina hired a lawyer and gave her parents power of attorney to act on her behalf.
Unfortunately, in Denmark ME patients are often labelled as having a functional disorder. The treatment for a functional disorder includes graded exercise therapy (GET), cognitive behavioral therapy (CBT), and possibly anti-depressants. Testing has shown that the bodies of ME patients respond to exercise differently than healthy people. Forcing exercise upon people with this illness can cause a significant worsening of symptoms. Cognitive behavioral therapy can be helpful to some people but only as an adjunct therapy. Treating conditions such as cancer or MS with CBT and GET alone would be considered outrageous, not because they are bad in and of themselves, but because they in no way treat the underlying illness. Treating ME with these therapies is even worse because exercise can actually be detrimental to the patient.
Summary of Karina's experiences prior to her forcible removal:
In 2008 Karina was admitted to an arthritis hospital for a two-week treatment that involved GET. At the end of this stay she could only be active an hour a day. She was given the observational diagnosis of ME at this clinic.
At this time Karina and her family did not understand the concept of post-exertional neuroimmune exhaustion and the danger that forced exercise (GET) can have for ME patients. The doctors encouraged it as a way to get better and Karina and her family understandably followed this advice. In 2010, Karina was again pressured into hospitalization and once again her sensitivities to sound and light were not taken into account. During this time a doctor wrote in her journal that Karina had no depressive or psychotic tendencies. Karina and her parents knew that this hospital treatment would be detrimental to her and fought to take her home. The doctors admitted there was absolutely no cause to keep her for psychiatric reasons and she was able to go home. Eleven days later a well-known ME expert examined her and confirmed the diagnosis of ME.
Because of their past experiences, Karina's parents also had another ME expert come in 2011 to confirm the diagnosis and to offer suggestions for testing or treatments that could improve Karina's quality of life. They wanted to ensure that they were doing all they could to properly care for their daughter at home. The ME diagnosis was once again confirmed and further supplements and suggestions were made. At this time in March 2011, a local doctor and medical officer interviewed Karina and found her to be competent to decide her own treatment. Karina explained to them that she did not want CBT or GET and instead chose treatment advice from ME experts. The medical officer wrote an official document in which he accepts Karina's decision to choose her own treatment. With ME being diagnosed multiple times and Karina once again declared mentally competent the family felt secure that all the steps to keep Karina safe had been taken.
In May 2012 Karina had a surprise visit from her GP and another local doctor. The GP had been pressured by the Board of Health to make this visit to evaluate her mental state. Once again Karina was declared mentally competent and could therefore not be forced into unwanted treatment. However, they said they she would have to have a new psychiatric evaluation in a few days. At this time Karina and her parents chose to get her story out to the public in hopes it might protect her. Karina chose pictures that could be used and said she hoped it would help others in her situation. In May 2012 Karina hired a lawyer and gave her parents power of attorney to make legal and medical decisions for her when she could not. During this time, the Board of Health assigned a psychiatrist to her case and he began contacting Karina's parents asking to visit Karina. Karina is under group 2 in the healthcare system which means she can chose any doctor she wishes and that the government cannot assign her one. She had chosen her own doctors and her family made it clear they did not want this psychiatrist involved in her case. They did not understand why he had any right to be involved in Karina's care.
This psychiatrist continued to insist that he see Karina and pressured them to admit Karina to a hospital, but he would not provide a treatment plan despite written requests by Karina's parents that he do so. The ME Association, Denmark offered to put him in touch with ME experts and have one visit Karina. This psychiatrist refused. In the fall of 2012, Karina's parents stopped all contact with this psychiatrist, but unbeknownst to Karina and her parents, this doctor did not stop his involvement in Karina's case. This doctor wrote to the Ministry for Health and Prevention asking about the right to keep relatives from visiting members in the hospital. He received the reply in a five-page answer that explains that human rights have priority.
Forcible removal and systemic stripping of Karina's patient rights:
On February 12, 2013 Karina Hansen was forcibly removed from her bed and relocated to Hammel Neurocenter. A total of five policeman, two doctors, two caseworkers, and a locksmith arrived unannounced to remove one bedridden young woman from her mother's loving care. Ketty Hansen (Karina's mother) was physically held back while her daughter called for her to come help and repeatedly rang her bell (her way of calling for her mother).
The anguish in that moment would be indescribable. What an overwhelming display of force against a bedridden daughter and her mother! Karina used her cell phone to call and text for help. She tried to call her mother who wasn't allowed to answear. She called her sister and father and asked for help. This was an enormous expenditure of energy for someone as sick as Karina. Her adrenaline must have been pumping as she sensed danger.
Later reports showed that during this time the house and its contents, such a supplements, medications, and the food in the refrigerator were photographed. Presumably they were looking for evidence of neglect and, of course, did not find it as Ketty had always received praise for her care of her daughter by doctors who visited her home. Per and Ketty (Karina's parents) took excellent care of Karina. In the aftermath of this visit Per and Ketty found a note on the floor by the door. It said "to Karina's parents. You will be contacted by a head doctor every day at about 10:00 with information about your daughter. You may also contact the place of treatment at this phone number xxx-xxx between 13:30 and 14:30 every day." There was no name or address on the paper. This was the only piece of paper they received that day!
On February 13th Karina called her mother and said "How can I get out of here? I can't take it" and the connection was cut. That was their last contact. They later discovered that Karina made a total of 43 phone calls and sent 7 texts in an attempt to get help before her phone died. Her last call was a call to the police that lasted about 40 seconds. Transcripts have been requested but not provided.
Her family has requested multiple time that her phone be charged for her. The response they received is that Karina must do it herself but she cannot walk to charge it. This shows an extreme callousness to her condition and the extra help Karina needs because of it.
A brief review of the past year
Karina's parents were finally informed that Karina had been taken to a neurocenter for treatment of her "severe condition." They were told that Karina could not have visitors for 14 days and then it would be reevaluated to see if she could have visitors. Although this contradicts what we now know was communicated to this doctor prior to Karina's removal.
This original time period was then extended to 3 weeks because the psychiatrist was on vacation. Then the terms of visitation were that only visitors who supported the treatment given were to be allowed.
During this past year Karina's decision to give her parents power of attorney has been disregarded. She has been appointed a guardian by the state. The guardian did not know Karina or her wishes prior to this. He believes in the treatment Karina is receiving. Conversations in meetings with the caregivers at Hammel Neurocenter have revealed a deep prejudice against ME. One doctor went so far as to call those who believe in ME "imbeciles."
Karina's parents and attorney are fighting this battle in the court system. It is a long, slow, uphill battle. Meanwhile Karina should be afforded the right to the support of her family, the right to change healthcare providers, and the right to have complaints treated in a swift and just manner. She has told them "you are killing me" and she has begged to be allowed to go home, and yet they disregard her.
They have stripped her diagnosis of ME and replaced it with a controversial diagnosis of PAWS (pervasive arousal withdrawal syndrome). Considering Karina has had multiple doctors diagnose her with ME, a second opinion by an ME expert seems to be the correct choice. Karina's parents are asking that Karina's right to a second opinion be enforced. According to the Danish Health Care Act, 2010, a second opinion is allowed if the condition is severe or life-threatening. The Declaration on the Promotion of Patients' Rights in Europe states that all patients should have the possibility of obtaining a second opinion. (2.7)
A well-known ME expert has volunteered his time to see Karina. His travel expenses will be paid by a patient association. This seems a small and easily grantable request in light of this situation. Karina's parents wrote to the guardian asking to allow Karina to take advantage of this opportunity to see an ME expert. The guardian responded saying that he trusts the team at Hammel Neurocenter and that he believes Karina is currently receiving the correct treatment but he said he would bring up their request at the next meeting with the team at Hammel.
Please join J4KH in asking that the guardian and the team at Hammel grant Karina this right to a second opinion! We have a shared our open letter on Facebook and this website.
We are asking everyone who believes Karina should have the right to this visit by the ME expert please sign our new petition on change.org. https://www.change.org/petitions/the-guardian-of-karina-hansen-we-ask-you-to-allow-karina-hansen-to-have-the-right-to-a-second-opinion-from-a-leading-me-expert-dr-nigel-speight#share
We are also starting a Thunderclap to help this new reach as many people as possible. Please lend us the power of your social media by signing up for our Thunderclap! http://thndr.it/1nUTVRm
Please like Justice for Karina Hansen on Facebook and follow us on twitter at Justice for Karina H @Justice4KarinaH to stay updated.
Sources for the above article:
1. Rynning, E. (2011), Nordic Health Law in a European Context: Welfare State Perspectives on Patient Rights and Biomedicine. Retrieved from http://books.google.com/books?id=iDa_qL--W_oC&printsec=frontcover#v=onepage&q&f=false
2.. Declaration on the Promotion of Patients' Rights in Europe, http://www.who.int/entity/genomics/public/eu_declaration1994.pdf?ua=1
3. Crowhurst, G. (2013) Severe ME, UK: Stonebird