End of Life Decisionmaking Lesson

Recent hellacious experiences have prompted this warning post and suggested resources.

I have durable medical power of attorney for my mother. When she became ill with pneumonia and respiratory failure in January, I literally had to stay in her hospital room 24-7 for a week to prevent attitudes towards the elderly and medical errors from killing her. One of the issues that I was asked about repeatedly was her intubation and code status, and repeatedly, I answered, “I have just spoken with her about this, and she says she is not ready to die. She wishes to be intubated, if necessary. She does not want CPR if her heart stops.” Although community-acquired pneumonia is reversible, there was considerable pressure to withdraw therapy simply because of her age, though she is mentally vibrant and had been living alone in her home.

After a week, Mom was transferred to a rehab unit. I met immediately with the RN and physician assuming her care and reviewed her wishes, Living Will, and POA with them.

In March, I received a call that Mom had been transferred to another hospital. I promptly called the ER and was told by the physician that the transfer papers from rehab clearly stated that she was a “DNR.” Fortunately, the ER doc deferred to my directives and she was intubated and treated aggressively.

Later, I met again with the rehab physician and tried to understand the origin of his DNR order (and his decision not having been relayed to me). Amazingly, he said that he was under no obligation to discuss code status with me nor to inform me of the change in her order, as Mom was alert at the time and indicated that she agreed with the “no code” order—this, despite our earlier detailed discussion and the fact that mom is hard of hearing and English is her second language. We then spoke together with mom re the code status and she confirmed the accuracy of what I had told him, prompting him to revise his orders.

It is clear that part of the problem is the rehab center’s use of the POLST (Physician Orders for Life-Sustaining Treatment) DNR form, which has a format that is not immediately obvious and limited options: full treatment, comfort measures only, or “limited interventions,” which states “no intubation…usually no intensive care.” I believe this form to be dangerously inadequate and would suggest that such advance directive/DNR forms provide a more extensive and explicit menu of options, including whether the patient might want:
CPR
mechanical ventilator (respirator)
dialysis
surgery (major)
tube feedings (food and water delivered through a tube into the stomach)
intravenous fluids
antibiotics
time-limited trial of a given therapy
or decisions to be made by a surrogate.

To facilitate such discussions, “Hard Choices for Loving People” is excellent, as is “Your Life, Your Choices.”

I have also found the following resources helpful:

“Safe Passage: Decisions about Foods and Fluids” and “Gone from my Sight,” by Barbara Karnes. I particularly recommend “5 Wishes” as a good way to begin to discuss these difficult issues.

I also encourage patients and family to write an Ethical Will. This document is a personal way of expressing your values to people you care for, leaving them a personal or spiritual legacy. I was introduced to this through Jack Riemer's excellent So That Your Values Live On: Ethical Wills and How to Prepare Them.

For more detailed help with these issues and for sample living will/advance directive forms, I suggest Compassion and Choices.

Be sure you have a durable power of attorney and a living will. Please review your wishes with your loved ones periodically and also review them with health care workers. Most importantly, remain vigilant and steadfast to ensure that your wishes--whatever they may be--will be honored.