Monday, July 25, 2016

The Hardest Decision

"In elementary school, I met a strawberry blonde named Hannah. She was a total spitfire with a constellation of freckles on her cheeks and eyes that reflected her soul – full of life. Our childhoods were bliss. We were little girls as naive as sprouts whose roots were hardly established in the garden of this world."  - Caroline Collins, What No One Tells You About Terminal Cancer

She was born on a Thursday in March. 1999. 

And from that day forward, the world was an open book for Hannah Rose. 
"It seemed as though she had a job to do. Curious from her first moments, her zest for life from a very young age was incredible. As she grew, that spirit never left her. Hannah was an incredible young woman - funny, wicked smart, fiercely loyal." - Our Beautiful Hannah Rose
But at an age when "tough decisions" should be limited to dating, driving and summer jobs, Hannah Rose Duffy found herself facing a set of choices most could hardly fathom.

At 14, Hannah was living with brain cancer - and a rushing onset of decisions that would determine how she and her loved ones would move forward.

Her determination, you might say, was "Pure Hannah." 

Her decision? A cancer diagnosis was no match for her lifetime of dreams yet to chase, stars yet to follow, and wishes yet to be fulfilled.

Hannah's closest friend and trusted sidekick, Caroline Collins, recalls the day she vowed to carry on the wishes of Hannah Duffy as the legacy of "Hannah the Warrior."

"I laid beside Hannah in that hospital bed. We put together a list of her wishes that evolved into a legacy of our friendship, the beauty of life, and death. That list holds an explanation for why I wore hot pink stilettos to the funeral and why the name “Hannah” will definitely be embroidered on my wedding gown." - Caroline Collins
Hannah passed away on September 26, 2013Her story, however, is just beginning.

Read Caroline's blog: What No One Tells You About Terminal Cancer.

Explore the legacy of "Hannah the Warrior" here: The Hannah Duffy Foundation

The Evolution of Advance Care Planning By: Celena Romero

In the summer of 1969 Luis Kutner wrote an article titled Due Process of Euthanasia: The Living Will, A Proposal. The article summarizes the outcomes of several trials involving family members ending the life of an ailing loved one who is suffering from a debilitating, terminal disease. He referred to the acts as “mercy killings.” Kutner, a human rights lawyer, represented society acknowledging that common law was written to treat mercy killings no different than any other acts of murder; however prosecutors, judges, and juries approached mercy killings with sympathy rather than punishment. Given the fact that law does not condone suicide or permit one to assist in suicide, Kutner proposed A Living Will as an alternative solution to relieve great pain and suffering from an incurable fatal disease.

Kutner knew that law honored a patient's right to consent to or to refuse treatment; whether it be an injection or an operation. A patient’s consent must be voluntary and well informed. The Illinois Supreme Court refused to condone the authorization of blood transfusions to a competent adult who had steadfastly refused due to religious beliefs. The problem remains if a patient is unconscious, cannot give consent, or is completely unresponsive, how far should a physician go to preserve life? It was presumed that physicians applied an ordinary means to preserve life but no extraordinary means if the patient was not expected to recover from the comatose state. Ordinary and extraordinary are terms subject to personal interpretation.

Kutner questioned how an individual patient can retain the right of privacy over his or her body if the law clearly prohibits mercy killing, even at the patient's request. On the contrary, the law allows an individual the right to refuse treatment even if it would prolong life. If a doctor does not respect the patient’s refusals, he or she would be subject to liability.

The suggested solution proposed by Kutner is that the individual, while fully in control to express himself or herself, indicate to what extent he or she would consent to treatment. The document indicating such consent may be referred to as A Living Will:

The document would provide that if the individual's bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease. A Jehovah's Witness whose religious principles are opposed to blood transfusions could so provide in such a document. A Christian Scientist could, by virtue of such a document, indicate that he does not wish any medical treatment.

Nearly 50 years later, end of life care, shared decision making, informed consent, and advance directives, such as A Living Will remain at the forefront of ethical and legal debate, and public policy. Americans are living longer and are healthier than previous generations but due to advances in medical treatments and technology it is extremely difficult to predetermine the timing of death. Federal policy, state legislature, physician groups, bioethicists, and society at large impact health care decisions. Don’t let them impact yours. Take control of your life decisions regarding medical treatment and end of life wishes. It starts with a conversation. Find out more by visiting


Kutner, Luis (1969) "Due Process of Euthanasia: The Living Will, A Proposal," Indiana Law Journal: Vol. 44: Iss. 4, Article 2