Following a five-week trial, Boston Children’s Hospital has been found ‘not negligent’ in its handling of care for West Hartford teen Justina Pelletier. The trial concluded that the hospital was also not negligent in its decision to report her parents to child protection authorities in Massachusetts for medical negligence.
21 year old Justina Pelletier had suffered from severe pain and undiagnosed symptoms for many years as a teenager and the lack of answers as to what was causing her suffering led to a breakdown in relations between her parents and her doctors.
Seven years ago, things got so bad that Justina was placed in a locked psychiatric unit at Boston Children’s Hospital, aged just 14 years old. She would spend nine months in ‘lockdown’ against the wishes of her parents, who at the time were also accused of trying to interfere with her treatment. Things got so bad that her parents ended up losing custody of their daughter after doctors and child welfare officials deemed that they were not acting in her best interests.
Now, seven years on, Justina found herself giving evidence in a medical malpractice lawsuit against her doctors. She spoke of the extreme trauma she experienced at being separated from her patients and the long term effects this had on her mental health; she still sleeps in the same bed as her mother to this day, has separation anxiety and regularly experiences nightmares. This is not surprising as research has indicated that if you are suffering from a long-term illness you are 2-3 times more likely to develop an emotional or mental health condition, directly brought on by the stress of the illness.
Initially, Justina was brought to the hospital in 2013 with severe stomach pain from constipation. A month into her care, her parents were informed they would not be allowed to see their daughter more than once a week and could only have 20 minute phone calls with her which were always supervised. The doctors believed that most of her symptoms were psychological and that she needed intense therapy to recover. This was strongly disputed by her parents who believed that she had an inherited genetic condition called mitochondrial disease, which affected how her body breaks down food and oxygen. On the stand, although still wheelchair bound, Justina revealed that after having her colon removed in 2018, she has spent less and less time in hospital and no longer suffers from physical pain.
Clearly, being diagnosed with any illness is enough to bring stress, worry and concern about what may happen in the future, but make that illness chronic and life as you know it will almost certainly change, as was the case for Justina. Many people compare being told they have a chronic illness as having a sense of loss, similar to bereavement, in that you are mourning your good health and everything you thought you could do, but are suddenly told you cannot. You will most likely experience a mix of emotions including anger at the fact it is you suffering, anxiety about how long you may be ill for and what affects the illness will have on your day to day life. And if your illness is a lifelong illness you could potentially feel guilty about what you may have done to cause your pain, be scared of how your life is changing and even start to feel bitter towards healthier people around you. All these thoughts and feelings can in turn affect your long-term mental health, which, unlike a fractured limb, is harder to spot. Doctors who diagnose chronic illnesses may not be trained to identify mental health issues meaning many patients slip through the net, or worse, could result in a case of medical negligence.
Medical negligence can be difficult to prove and most healthcare providers will be reluctant to admit fault. Sadly in cases such as Justina’s, the only resolution is to embark on a full trial which allows all of the case details to be reviewed by an independent jury who will then submit their verdict. In Justina’s case, the hospital was not considered negligent and the family may not feel that justice was done. However, it is hoped that they would feel some kind of closure from being able to state their case and have their views, opinions and evidence considered equally alongside the information presented by the hospital and her caregivers. Being accused of medical negligence in court doesn’t mean that the best possible care was provided, it just means that it didn’t cross the legal line of negligence. Following Justina’s operation, she does appear to have reduced symptoms and so it is hoped that this case will allow the family to draw a line under the past and start to build a more positive and hopeful future.