The Terry Schiavo case Terri Schiavo — A Tragedy Compounded — NEJM in FL that agonizingly took place from 1990 to 2005, put the fear of God in people with chronic illness, lawmakers and healthcare practitioners alike. After this grueling tragedy, the public push from lawyers and healthcare institutions for every adult to have an Advanced Directive/Living Will (to minimize further tragedies) began in earnest.
As a nurse that frequently admitted patients into the hospital for over a dozen years, the first question I would ask is, "Do you have an Advanced Directive?". The next question would be, "Do you have it with you?" or if the answer was no Directive, "Are you interested in having one?". All those years of interviewing people, I would roughly estimate less than 25% of people had an Advanced Directive. I always found it really interesting when people did not want to consider having one. Denial lives deep.
What is an Advanced Directive or Living Will? Advance Directives A Living Will simply lays out what your wishes are for sustaining or not sustaining your body if you become unable to make the decision in the moment. Advanced Directives are not referred to unless it is a life/death situation. As important as this document is, whom you choose to execute it (your medical representative, medical POA or proxy) is equally vital. This should be a person who is calm and discerning in nature and under pressure can be relied on to make the important calls. As wrong as it is, I've seen Advanced Directives not adhered to because of the call of an immediate family member' whose own value (or guilt), was not the values of the patient.
After your loved one has considered the sometimes difficult questions on an Advanced Directive, and what their wishes are in that critical circumstance, it's imperative they have a long conversation with you, their medical representative. Their wishes need to be implicitly clear to you. Because when the moment arrives and you the medical representative have to make decisions, you might not get much help from the healthcare professionals around you. The Advanced Directive is your explicit guide.
You as POA, might be asked by a doctor or surgeon, to perform some extreme measure on your loved one in order to sustain their bodily functions (or it might be put to you "save their life"). The calm and discerning person (in the middle of this crisis), knows the Advanced Directive of their loved one specifically says "no extreme measures". You would want to ask the doctor or surgeon whether this extreme measure they are asking to perform on your loved one will impact the vegetative state they are in. It will save their body's life probably, but will the quality of their life be significantly different?
Often, these circumstances for a teaching hospital present good learning opportunities for training surgeons or physicians. But they don't provide the best outcome for the patient. As a POA, you are the advocate for the patient's medical wishes. Be absolutely clear when these papers are drawn up what your loved one wishes. Again, use the document as your support. Keep your head and keep asking medical personnel "quality of life" questions. We are conditioned to comply with healthcare professionals opinions and directives, especially in an emergency. The Living Will document spells out your loved one's wishes and should be adhered to by law.
Often, these circumstances for a teaching hospital present good learning opportunities for training surgeons or physicians. But they don't provide the best outcome for the patient. As a POA, you are the advocate for the patient's medical wishes. Be absolutely clear when these papers are drawn up what your loved one wishes. Again, use the document as your support. Keep your head and keep asking medical personnel "quality of life" questions. We are conditioned to comply with healthcare professionals opinions and directives, especially in an emergency. The Living Will document spells out your loved one's wishes and should be adhered to by law.
Advanced Directives can be changed at any time; hence even a young person (like Terry Schiavo was) should have one. All medical POAs should have a copy of their loved one's Living Will, after discussing at length the various aspects of the Directive. Everyone should provide a copy of their Living Will to their doctor, to the ER on admission and to the hospital unit where they are admitted.
Advanced Directives should be very straight forward, with little medical-ese language. If the task of filling one out is difficult, you can ask help from any medical professional, lawyer or social worker. The paperwork should not require this, but do what feels comfortable. It's not easy to consider the questions on a Living Will, but do it anyway. Get it done. You take responsibility for your health. Take responsibility for the quality of your life and the quality of your death.
Following are Living Will resources:
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