A TRUE STORY ABOUT DETAIL IN DIRECTIVES AND HOW A FAMILY COPED

A healthy active woman in her early 70’s had a massive stroke while living alone.  At the point of discovery several hours later, she was placed on a ventilator and taken to a major hospital.  Brain surgery was performed which enabled her to be somewhat responsive by using hand squeezes.  (Having a ventilator does not allow you to speak.)

When her family located the woman’s advanced medical directive, they were deemed too vague to respond to the complexities of her situation.  Would she have elected to remain indefinitely on the ventilator or would she have chosen otherwise?  They didn’t know.

After consultation with doctors, the family attempted communication including telling her the neurologists opinions and the likelihood of her recovery.  Through the use of hand signals it was determined that the woman asked to be removed from the ventilator and refused further aggressive care. Her wishes were respected and she died within 24 hours with her family present.

Unfortunately, this situation is not uncommon.  Although forms were completed, they lacked specificity with the end result being to put the proxy and family in a state of uncertainty.  Often forms are simply a series of check marks and thus do not take into account the complexities that can arise in a life threatening situation.  Additionally, forms are often completed with little or no conversation with proxy or family members who in a medical crisis such as this one are often unable to act in accordance with what one may have wanted.

Here are some important positive elements.

  • The family was together

  • The patient was consulted throughout

  • The patient was able to make her choice

  • The hospital and doctors respected her choices

  • The patient passed on her terms.

Here are some thoughts for reflection and some suggestions for action:

  1. Reflect on what you would choose if you were the patient.

  2. Review your forms to see if they contain enough detail

  3. Give thought to probabilities: what would you choose if you had 10% chance of living off a respirator? Or a 60%chance of being bedridden?  Or a 40% chance of living on your own after you recovered?

  4. Share this story with your medical proxy, family, and doctor and ask them what they would do in a similar situation and then share your choice. Have a conversation!

  5. Write down your thoughts/decisions and put them into your Advanced Medical Directives.

SHARE YOUR OWN STORY HERE.

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