Real Intentions for Life

November 2016

Practical Considerations Raised after Watching Netflix’s “Extremis” – Part 3

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Few patients anticipate the need for critical care. Some people call 911 too late. Such was the case for Selena in the Netflix documentary “Extremis.” She was having chest pain and struggling to breathe, but she told her daughter not to call EMS.  Selena stopped breathing on the way to the hospital. EMS responded and began CPR. A breathing tube was inserted. Selena suffered brain damage and was admitted to the ICU at Highland Hospital in Oakland, California.

Selena was in a vegetative state, lying in a bed and hooked up to machines. Her daughter and brothers were at her bedside – hoping and praying for her recovery. Dr. Zitter was the ICU physician in charge of her care. Selena did not have an advance directive. It was now up to the family members to decide Selena’s fate. An advance directive could have been Selena’s “get out of jail free” card.

3 Practical Considerations for advance directives include:

  1. Timing is everything

Practical considerations come down to – timing is everything. Selena needed more time to recover.  The family needed more time to come to terms with the situation. Dr. Zitter needed more time to conduct tests to determine brain death. Critical situations require personnel to act first and to ask questions later.  The implied directive “to do or die” is an emotional response. The advance directive affords a practical plan of action when the emotions settle.

A wish implies a desired outcome. A plan of action exists within a timeframe. The average patient spends three days in the ICU. Seriously-ill patients generally stay longer with worse outcomes. If you wish for a good death, you have to consider dying sooner than later. Will you complete your advance directive in a timely manner? Would your advance directive state how long a breathing tube stays in?

  1. Remove hope from terminal illness

Hope implies an expectation of improvement. False hope is misleading and leaves people in the dark and wondering. Dr. Zitter opened up the discussion of what was best for Selena with the family. What feelings and hope did her daughter and brother have? Dr Zitter listened intently while being careful not to express her opinion. The Hippocratic Oath states, “above all, I must not play at God” – pretend to be all knowing.

Dr. Zitter may not be all knowing, but was she holding out hope for the family? She had left the situation open-ended while Selena was in extremis. The brothers were leaving Selena’s fate up to God. If Dr. Zitter were being objective, she would not give the family any hope.  “Hope springs extremis.” Your advance directive has to trump your family’s belief that hope springs eternal.

  1. Allow evidence to stop extremis

Physicians lose credibility when they rely on family members to tell them what to do. If the physician does not know how to manage extremis, will the medical power of attorney know better?  Physicians have to remain grounded in evidence-based medicine. This is the medical condition, and this is the prognosis. A physician’s internal advance directive has to lead end-of-life conversations.

Most physicians tend to be wishy-washy about the certainty of death in any given patient.  It was evident that Selena was going to die, yet it took six months for her to die.  By collapsing her head in her hands, Dr. Zitter displayed torment. It’s troubling when healthcare providers fail to heal patients. And doubly embarrassing when patients receive indignation. All physicians need a practical plan for allowing patients to die with dignity.

Patients also need to be practical. They need to plan for extremis by completing an advance directive sooner than later.

 


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Caregivers often suffer in silence while looking after loved ones and grieve in the aftermath of their death.

These twice a month email tips help caregivers understand that pain and suffering are inevitable – grieving is optional through better advance care planning.

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Mindful Considerations Raised by Netflix’s “Extremis” – Part 2

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The gut reaction to Netflix’s new documentary “Extremis” is the ICU is a hellhole.  No one wants to end up there.  Patients enter this purgatory after becoming sick and requiring a higher level of care.  Patients enter the ICU from the ER, the hospital ward, or after surgery.

Donna, one of the two patients featured in the film, has myotonic muscular dystrophy.  Her muscle weakness caused respiratory failure, and she needed a breathing machine.  Donna has to choose between having the tube removed and having a permanent tracheotomy.  The tracheotomy requires Donna has to live in an extended-care facility. Removing the tube means that she will die.

Mindful considerations identify upsets before they happen. The purpose of advance care planning is to avoid the pitfall that Donna had encountered.  Muscular dystrophy has no cure.  What Donna had to endure was unnecessary and torturous.  Donna was competent so she had to fend for herself against the physicians and her doting family.

3 Mindful Considerations for advance care planning include:

Avoid the bridge too far.

To what extreme is it necessary to keep you alive? At what age would you avoid admission to the ICU? Do you understand that you will be in the ICU following surgery?  Do you understand that calling 911 could lead to an ICU admission?  Is your medical condition expected to get better?  What quality of life will you enjoy after leaving the ICU?  “We’ll cross that bridge when we get there,” seems to be the best copout for advance care planning.

These are questions that you prefer not to think about ahead of time and are often left open-ended. Advance care planning that is open-ended will likely cause you to cross a bridge too far and take you into the ICU.  Elderly patients who are reluctant to sign a Do Not Resuscitate (DNR) often die in extremis in the ER or ICU.

Refuse nonviable options.

“I can’t live like this” becomes a personal proclamation for advance care planning. “I do not want _______” becomes a matter of choice.  You might begin to fill in the blank by refusing certain medical procedures:

Heart transplant      Colostomy bag      Breathing Tube      Feeding tube      Cardiac resuscitation     Needle sticks       Medical Specialist           Dialysis Extended-care          Chemotherapy          Antibiotics          Blood Transfusions

Would any doctor in Donna’s situation choose to have a tracheotomy?  Should doctors offer nonviable options to every patient as a matter of choice?  Who determines if a particular patient can live with a tracheotomy?  Is living with the prospect of dying ever a viable option?  How do patients get the inner strength to give up on hope and to refuse medical intervention?

Donna was looking at a longer course of pain and suffering with no hope of recovery.  Sadly, this seems to be the best practice of medicine today.  Patient-centered care calls for advance care planning that focuses on personal dignity. Nonviable options lead to patient indignation.

Put your promises in writing.

The quality of your death is a matter of choice with no guarantee. Those who rely on good faith often die in extremis.  We all know the importance of getting our guarantees in writing, yet many people fail to do so.  They trust in God and the healthcare system.   Advance care planning provides the means for you to maintain control over the decision-making process. Being mindful requires taking responsibility for both your life and death.

Mindful considerations help you balance refusing and receiving medical intervention.  Entitlements are what you receive.  Empowerment allows you gain dignity through refusing intervention.  Donna had to choose between entitlement and empowerment- suffering and freedom.  Had she made a promise to herself about this choice? Were others aware of it?

How did Donna feel about corporal punishment?  Was the breathing tube necessary?  Was a permanent tracheotomy acceptable?  Does the prospect of corporal punishment prompt you to get things in writing?

“Give me liberty or give me death” are the immortal words of Patrick Henry. Is it important to include these words in your advance directive? “Give me extremis,” as in inhumane treatment, is absurd.

Be mindful of what you wish for and put it in writing. If you do not wish to suffer in extremis, plan ahead.  Be mindful that withholding life support supports personal freedom and everlasting peace.

 


Subscribe to Dr. H’s Clipboard
Caregivers often suffer in silence while looking after loved ones and grieve in the aftermath of their death.

These twice a month email tips help caregivers understand that pain and suffering are inevitable – grieving is optional through better advance care planning.

Let’s start developing a community that creates and grows understanding, knowledge and support for compassionate end-of-life care.

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