Heated Criticism of Living Wills Spills Over

The Washington Post published an editorial on the drawbacks of living wills as powerful agents in advanced care planning. Well at least that is how the article started. The author of the piece, Charlotte Allen,was recently diagnosed with breast cancer, luckily caught in the early stages. The frustration of the piece stems from the omnipresent questions about living wills.

She felt "ever-so-slightly harassed" and imposed on by the frequency and style in which these questions were asked. So much so that she took these questions to come up with a conspiracy theory. The medical establishment and secular elitists want you to die. Now if you have read this post this far, I highly recommend you go read the primary article, because I am not going to re-hash it line by line here (see the end of this post for that). I do not recommend it as a fine piece of well-founded opinion writing, but I do recommend reading this piece, because I think this article represents a sizable minority view that is important for the medical field and palliative care especially to recognize.

In my early training in hospice and palliative care, I was excited by this new approach to medicine. Spending time talking with the patients and families, openly discussing difficult life and death topics with them so they could make the decisions that were in their best interest; these actions were very rewarding. But I did go through a brief militant hospice phase, where I thought hospice was 'right' for everyone, I just had to help them understand that. So I can see where Ms. Allen may see some of this over-bearing "accept death already, would ya?" style. From talking with more patients and families, I soon learned that hospice was not right for everyone. Some people need to fight to the very end. That is a good death for them. But because some want to treat to the end, it does not mean medicine has a death-wish for patients when we address end-of-life issues.

She impedes the full impact of this rhetorical exercise with the use of unnecessary pejorative words, broad generalizations, unfounded accusations, and setting up an artificial us against them divide. Readers familiar with Pallimed will know that we have outlined some of the limits of living wills, and surrogate decision making, so in part I agree with some of the points that Ms. Allen attempts to make. I just wish she did so in a much more factual way without using fear and smear tactics.

If you are really interested, I encourage you to read some of the entertaining 9+ pages of comments and the transcripts of a Q&A (much shorter than the comments). Most of the comments seem to oppose most of her points which I was glad to see that the readers of the Washington Post seemed to be well-informed. Most of the people who did agree with her broader accusations tended to side with her on opposing the outcome and decision making process of the Schiavo case.


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Some point by point issues with the article. This is kind of long. Well really long.

Use of fear as a anti-establishment tactic.

• I found something weasely...
• I've developed a sneaking suspicion that someone else may be hoping to call the shots
• "dying when we, the intellectual elite, think it is appropriate for you to die."

Who are the intellectual elite? Classic 'us vs. them' technique that leads to conspiracy theories. She answers later in the transcript that she defines the intellectual elite as: "Great minds at our universities and media."

• with the growing acceptance of such notions as physician-assisted suicide

See Drew's last post on public misperception on what euthanasia means. Polls on public acceptance of PAS vary widely and there has been no real trend in either direction that is well-established. Voter approval in one state 10 years ago, and with multiple failed attempts since then in other states, hardly makes the case for a growing approval.

• Many people, especially highly educated, nonreligious people, think that "physician-assisted death" is exactly the right way to go -- or to send off your unconscious mother.

What this has to do with highly educated or nonreligious people is unclear. It seems to be a dividing technique again, especially when "they" are thinking about doing this to Mom!

• American Academy of Hospice and Palliative Medicine reversed its long-standing opposition to physician-assisted suicide

A careful reading of this statement demonstrates that every attempt should be made to avoid PAS/PAD. And the Academy did not reverse its opposition, it has a position of studied neutrality. Reversal would be an endorsement, which this is not. Most of this I see comes from the fact that you have a national organization has to provide guidance to professionals in Oregon (legal PAS) and in other states (illegal PAS). There is research to show that PAS happens regardless of legality, but adhering to state laws or working to change them should be the approach to take if you do not like the way things are now.

• Have your doctor pull out your feeding tube or inject you with cyanide or do whatever fulfills your idea of death with dignity.

Now come on..."inject with cyanide?" That is really confusing the picture and equating that with stopping tube feeding is way too blunt for such a complex subject.
Misperceptions of medical language/approach.

• ...whether I would want to be denied "artificial" food and water...

Nutrition by mouth is considered natural. By other routes is artificial (feeding tube, IV, etc). Artificial nutrition is not inherently endowed as good. It must be used appropriately.

• ...being given 30 seconds in a busy lobby to read and sign a complex document...

True this is how the process starts, but quality medical establishments should take the time to address these with you after you have had time to review them. One should avoid making these decisions in haste or in a crisis when possible.

• ..."right to die"...
  

An ambiguous term at best. It is really more of a wastebasket term to lump subtle and complex ethical issues. It is difficult to throw this term out in the open without really defining it for the reader as to the author's understanding.

• Equating "good death/dying well" with the word euthanasia

These words all have very open meanings that have different understandings depending on circumstance and understanding. Good, death, dying, well are all common words with some overlapping themes. To suggest this is the secret medical code for 'hastened death' is disingenuous.

• "Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do."

Her first hand experience with hospice care is tainted by a strangers comments that could be interpreted in many different ways. Good hospice care may involve morphine drips, but the majority of hospice care does not need this measure to provide comfort. The rule should be the right dose for the symptom. Besides no one ever notes the fact that hospices have a financial disincentive to hasten death, they are often paid per diem. And I have had many, many patients live well and long on opioid drips.

• terminal sedation
  

Misperceived as sedating and then stopping food and fluids, when in fact most studies demonstrate that when this is enacted, the patient has often already stopped eating and drinking on their own.

• It's not surprising that many people have reservations about theories of "dying well" that always seem to involve not staying alive...only 18 percent of Americans of all races had them...

She again uses the possibility of the public reacting against the establishment as the potential reason for not having living wills. The most common reason I encounter in my practice: No one likes to talk/think/discuss end-of-life issues. That is a pretty obvious one.

The opinion piece's good points.

Many people do not have living wills. So let us better understand the barriers and help them pick a decision making process that is right for them.

Impotency of living wills. The process to make them and keep them up to date and readily available is a systems issue not a failure of the idea of a living will. Often the language is ambiguous, and the form is not updated frequently. POLST may be a way to fix some of these issues, but I am sure Ms. Allen would find some objections to that.

Living wills seem to only indicate what you don't want. That is true but that is a reaction to the perceived over-treatment by the medical system and how living wills were hatched in the first place. But there is no reason why a living will cannot say that your preferences are to be as aggressive as possible and to stop asking me about death and dying.
DPOA's are good things to have. They allow flexibility, but they also have limits and fallibilities that Ms. Allen neglects to highlight. Often they are signed without the most important discussion about wishes. Even when that happens surrogates may make different decisions.

She did not use the word narcotic. Pet peeve of mine.

I just want to die in peace. I think most people would agree with that. And that is what palliative care is about. Meeting you where you are at.

Picture Credit: Christian Sinclair, UC San Diego, "Bear"