Skip to main content

When Not to Follow an Advance Directive

two paths diverge

by: Eric Widera (@ewidera)

An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home's garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.

What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?

In a paper published today in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:
  1. Is the clinical situation an emergency? 
  2. In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens? 
  3. How well does the advance directive fit the situation at hand? 
  4. How much leeway does the patient provide the surrogate for overriding the advance directive? 
  5. How well does the surrogate represent the patient’s best interests?

So, how do the authors balance her previously expressed wishes with that which her surrogate may think is in her best interests?

Based on the framework, the paper argues that it is ethically appropriate for the physician and daughter to override the patient's previously stated wishes in her Advance Directive and transfer her to the hospital for surgery.   The situation isn't an emergency, the benefits of pain relief and quality of life with surgery likely outweigh the harms, the advance directives are not a perfect fit and they also grant the surrogate leeway, and the surrogate represents the patients best interest well.

Do you agree?

NOTE: This is one in a series of posts for "Code Discussion Week."   Here is a list of the rest:


rabob said…
The article is no out yet!
Eric Widera said…
Sorry, here is the link -
Having gone through the exact situation as above with my 89yo mother w/Alzheimer's, we opted for surgery only on the basis of "comfort care" to minimize pain. It was the right decision. --SBL
Carol said…
I find overriding a clear advance directive -- comfort care only, no hospitalization-- on the grounds of presumed benefit (by physician and surrogate, influenced by physician) to be ethically troubling. Why have an advance directive in the first place? Isn't there some concern that a woman with Alzheimer's may not be able to participate fully in PT to gain the presumed benefit? Aren't there risks of surgery to be considered? Of course no advance directive can foresee every possible situation but this woman seems to have decided that going to the hospital for whatever reason was unacceptable to her. I wonder if I now have to have an addendum to my advance directive saying, "I really really mean what I have said here. No means no."
Alex Smith said…
Excellent point Carol. In the paper we talk about carefully weighing the risks and benefits of the intervention (surgery in this case) in view of the patient's goals.

Completely agree there should be a section on advance directives that captures patient preferences for leeway (step 4 above). The problem is most forms don't have a place to say "these preferences are fixed" and "these are a guide." The VA and a few other advance directives have a place for documenting leeway, but most advance directive forms do not.

A discussion of leeway also needs to be a bigger part of advance care planning conversations.
Anonymous said…
Having also been in the above situation regarding my 91 year old mother I would not agree. Cognitive disorders such as postoperative cognitive dysfunction, confusion, and delirium, are common following anesthesia in the elderly, especially those with Alzheimer's disease, with symptoms persisting for months or years in some patients. My mother died due to complications related to this.
palliate said…
I am also uncomfortable with the decision made in this case. My counseling of the daughter would include the following: 1) Because of the dementia, mom will have a difficult time participating with any kind of rehab, and it is unlikely she will walk again. 2) Increased confusion and even frightening delirium is likely in the post op setting. This often delays return to her "home." 3) Sedation to treat the post op pain and delirium may make it hard to eat by mouth and there may be decisions regarding artificial nutrition/hydration. 4) Given her age and underlying dementia, life expectancy will be severely shortened regardless, particularly if she is unable to ambulate. 5) We can keep her comfortable remaining in her "home" without the surgery, but the amount of medication necessary would likely make it so she is not eating or drinking. 6) The decision needs to take into account how much the patient valued independence, autonomy, not being a burden to others, thinking clearly, etc.
As in so many other articles, emphasis is on how physicians can or should respond.

What about encouraging patients to take more initial responsibility and helping them be clearer and more specific about their future conditions and whether or not they want to grant LEEWAY to their proxy/agent and physician? Then, everyone could have a clearer understanding about how to make these difficult treatment decisions.

Patients can even express themselves convincingly by making a video recording that states WHAT they want, and then explains WHY. If prompted by asking the right questions, and if previously informed regarding what their available options are, could be more prudent and more convincing?

I welcome feedback.

Stanley A Terman, PhD, MD
Caring Advocates
Alex Smith said…
These decisions are hard - no getting around it. In the case presented, the risks of surgery and post-operative delirium will outweigh potential benefits for some surrogates, in light of the patient's goals.

The video idea is intriguing, Stan. We would need to find a way to integrate it into the health record so it was easily accessible. I'm sure this will be possible in the future.
George Handzo said…
The points made here are very important and relevant. It is way too easy to just go ahead with surgery without considering the "but wait". I actually found these kinds of situations much clearer when I was a congregational clergyperson who knew my elderly members over time. This leads me to wonder whether it wouldn't help to include others in this patient's "community" who might lend a perspective to the conversation. The decision still belongs to the surrogate, but this patient seems to have lived in a broader social world.
shehzad Amc said…
The points made here are very important and relevant. It is way too easy to just go ahead with surgery without considering the "but wait.

dentist encino
Gabe said…
I think that the decision still belongs to the surrogate, but this patient seems to have lived in different circumstances.

shehzad Amc said…
I wonder if I now have to have an addendum to my advance directive saying, "I really really mean what I have said here. No means no."

san ramon dentist

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

Survival from severe sepsis: The infection is cured but all is not well

Severe sepsis is a syndrome marked by a severe infection that results in the failure of at least one major organ system: For example, pneumonia complicated by kidney failure. It is the most common non-cardiac cause of critical illness and is associated with a high mortality rate.

But what happens to those who survive their hospitalization for severe sepsis? An important study published in JAMA from Iwashyna and colleagues provides answers and tells us all is not well. When the patient leaves the hospital, the infection may be cured, but the patient and family will need to contend with a host of major new functional and cognitive deficits.

Iwashyna examined disability and cognitive outcomes among 516 survivors of severe sepsis. These subjects were Medicare enrollees who were participants in the Health and Retirement Study. The average age of patients was 77 years.

When interviewed after discharge, most survivors were left with major new deficits in their ability to live independently. …