Terminally ill 5-year-old’s wish raises ‘right to die’ questions

Printed from: https://newbostonpost.com/2015/11/06/terminally-ill-5-year-old-asks-for-heaven-over-hospital/

Should physician-assisted suicide be legal in Massachusetts?

Some say the measure helps people seeking to avoid a painful death, others believe unintended consequences could easily arise when insurers are left to choose expensive, life-prolonging treatments or cheap, fatal drugs. What do you believe?




When can a terminally ill child refuse medical treatment?

That is the question raised by the case of Julianna Yuri, the 5-year-old Oregon girl who suffers from Charcot-Marie-Tooth disease (CMT), a progressive, neurodegenerative disease that affects her breathing and swallowing muscles.

Julianna has spent a large part of her short life in and out of hospitals, as her condition grows more severe. Infections, even common colds, cause Julianna to suffer pneumonia due to her weakened coughing muscles.

Julianna’s future is grim; her disease is progressive, and because it affects her breathing and her ability to swallow, her lifespan is shorter than others with the same disease.  Doctors worry that a cold could settle in her lungs and cause yet another, more deadly, case of pneumonia. Although doctors might be able to save her life should that occur, she would likely end up sedated and on a respirator.

Her family works hard to keep Julianna from catching a cold, like when they vetoed trick-or-treating this Halloween because it was pouring outside. Her family set up trick-or-treating in different rooms of the house to give Julianna a taste of the Halloween experience.

Julianna and her family were thrust into the middle of a national debate when CNN picked up Julianna’s story from her mother’s blog.

Michelle Moon, Julianna’s mother, wrote that Julianna has made it clear she doesn’t want to go to the hospital anymore.  If she gets sick, Julianna says she wants to go to heaven instead.  Julianna’s parents plan to honor her request, and to ask her if she has changed her mind, if she gets sick again.

Many parents and neurologists have commented that a 5-year-old should not be allowed to choose to refuse treatment. But the doctors and nurses closest to Julianna say that the family is making the right decision by honoring their child’s wishes.

Julianna has been hospital-free for a year. Whether or not she gets help from doctors the next time she becomes sick, the nature of her disease ensures she will die well before her time. Her family is hoping to give their daughter the opportunity to enjoy all she can of life in the brief time they have with her, and to share her with the world through her mother’s blog.