Friday, May 31, 2013

What Do You Do When The Advance Directive Doesn't Make Sense?

The wait was too long.  We had to change plans.

I arrived home late after a long day at work and my wife asked if I wanted to go to that new restaurant everyone had been talking about.  We hopped into the car and drove off, not really thinking about a reservation.  We both groaned when the restaurant came into sight and we saw throngs of people waiting outside.  "Maybe it's not as bad as it looks," I said as I jumped out of the car to check, only to find out there was a 90 minute wait.  As I walked back to the car, I had already made up my mind to go down the road to an old standby.  My wife readily agreed without any deliberation.  Relief of hunger superseded novelty as we made a restaurant selection.

Of course, choosing a restaurant on a Friday night is nowhere near as complex as medical decision-making.  We had the opportunity to choose between two appealing restaurant options with guaranteed good conversation at either place. Patients sometimes choose between seemingly "bad" and "worse" options.  How might the decisions be similar, though?  When the rubber meets the road and we actually have to make a decision, the facts and assumptions surrounding the decision might have changed, which may affect the decision.

Think of a 78 year old woman with advanced COPD recently referred to hospice.  She falls walking to the bathroom and fractures her proximal femur.  She presents to the emergency department and undergoes evaluation by an orthopedic surgeon who raises the option of a percutaneous fixation of the fracture.  The patient says she does not want any surgery.  She has decision-making capacity.  Palliative medicine is called to admit the patient to the palliative care unit.  Further discussion with the patient reveals that she has always said she would not want surgery because her husband died shortly after a major vascular surgery ten years ago.  She's worried about going to a nursing facility even if she survives, and though she was told otherwise, wonders if perhaps the fracture will just heal on it's own over time.  The palliative med physician further explores concerns and discusses her likely prognosis with or without surgery.  He reassures her she will most likely be able to go home after surgery since she has excellent caregiver support and since it's anticipated she'll be able to bear weight on the leg very soon after surgery.  Together, a decision is made to reconsult orthopedics and proceed with surgery.   

The woman arrived with a set of assumptions which weren't 100% accurate, partially driven by fears derived from past experience.

What about when the patient doesn't have decision-making capacity?  If you're fortunate, the patient will have spoken in depth with their surrogate and will have completed an advance directive which can serve as a guide as you make decisions.  While helpful, living wills are often times written in vague language which may be difficult to interpret. POLST can help with specificity of preferences, but even then, it may have been completed based on a set of assumptions which might have changed.

What do you do when one decision seems to be in a patient's best interest, yet the patient's advance directive points towards another decision?  In an article published in JAMA Internal Medicine, Alex Smith, Bernie Lo, and Rebecca Sudore describe a framework to tackle this challenging dilemma and demonstrate in two cases how to use the framework. 

Here are the questions they recommend asking yourself:

  1. Is the clinical situation an emergency that allows no time for deliberation?  
  2. In the view of the patient's values and goals, how likely is it that the benefits of the intervention will outweigh the burdens?
  3. How well does the advance directive fit the situation at hand?
  4. How much leeway did the surrogate provide for overriding the advance directive?
  5. How well does the surrogate represent the patient's best interest?
In the article figure, they describe how the answer to each question might tilt the scale towards following the patient's advance directive versus going against the advance directive in support of a "best interest" decision for the patient.  For instance, if your patient is a veteran and has indicated on a standard VA advance directive a wish for their surrogate to use the advance directive as a guide, this would tilt the decision towards the best interest of the patient, even if it seems to conflict with the advance directive. Once weighing how each question tilts the scale, you will hopefully be in a better position to resolve the dilemma.

I'm glad the authors have drawn attention to this dilemma.  The advance directive can inadvertantly be a conversation stopper, i.e. "Well, the living will says such and such, so I can only assume that they would/wouldn't want such and such."  What's the number 1 pearl for successful palliative care consultation, though? Assume nothing, ever.  Don't anchor to the wrong goals of care, or assume the patient doesn't have mixed goals of care.  The proposed framework invites providers to use the advance directive as a conversation starter, especially when it doesn't seem to make sense.    Explore your intuition with curiosity, or else you might end up in Abilene with your patient and their family along with you.  (Apologies to those readers from Abilene- I'm sure it's a lovely place.)  Remain open to the possibility that the advance directive made sense all along and you were the one with the misassumptions.

Just like any medical decision, patient centered goals of care should be at the center of any framework.  At the heart of the dilemma is the question, "what do you do when a treatment does/doesn't contribute to the patient's goals of care yet the patient's advance directive seems to indicate you should do the opposite?"  Question two of the framework carries significant weight, and in fact, should serve as the basis for deciding what is in the patient's best interest.  A circumstance might still arise where you go along with an advance directive which seemingly contradicts one of the patient's goals of care (e.g. emergently intubating a patient with a very poor prognosis when the patient has selected intubation and related interventions on a POLST form).  In that event, it makes sense to quickly delineate a time-limited trial of therapy and reevaluate progress overtime as benchmarked against the patient's goals of care.

A few words of caution.  Jurisdictions vary with respect to how much leeway surrogates may have.  Be aware of applicable statutes and the fine print of the directive.  If the directive prohibits leeway, yet you and the surrogate both feel strongly that a contradictory decision is in the patient's best interest, then carefully consider the options.  Consider meeting with other family (along with the surrogate) to review the decision.  Consider an ethics consultation and/or discussion with your legal department.  (For the reasons above, I'd much prefer if standard forms "nudged" people towards permission of leeway, making it the default option yet giving people the option to write out specific decisions which are inviolable.)

Lastly, the "scale" in the article's figure best fits a scenario where an advance directive indicates a preference against medical intervention yet the provider thinks intervention might be in the best interest of the patient.  This slightly limits the generalizability of the figure, making it a little harder to apply to a circumstance where a directive indicates a wish for intervention yet the provider thinks the intervention would not be in the patient's best interest. With this small weakness aside, I think the authors ask the right questions and one can easily extrapolate the model scale when needed.

What do you think about the frameworkJoin the conversation below or at Geripal.

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