Wednesday, March 10, 2010

How Do We Productively Talk About Death?

From Patrice Villars at GeriPal, a discussion of how palliative care practitioners - and the medical profession - talk about death. She starts with a reference to a talk she attended at the recent HPNA/AAHPM conference by Diane Meier, MD titled “Update on National Palliative Care News: How the Big Picture Affects You.”

My first reaction to the post is to disagree. Much like religion, death tends to be discussed in society in a bifurcated way where all nuance and practicality - and actuality - are lost. It's either a screaming, scary nasty thing to avoid at all costs or a saccharine-tinged "passing" into a "better place. (With religion, the portrayals are of nutso crazy bible-thumpers or benign do-gooders with the best of intentions.) But with both death and religion, neither portrayal or language-set is wholly accurate/true.

My other - new - hat is editor of (relaunching in the next few weeks). The site looks at how religion is portrayed in the media. And I think the same work toward nuance and understanding there regarding religion reporting is applicable to death "reporting." And so, if avoiding the exaggerations of death and getting at the practicality, complications, nuance and inevitability requires readdressing how we discuss death, then yes, examining the terms used is important and beneficial. But if we're devoted to creating a lexicon about death that further removes us from its actuality, then I say we're on the wrong path.

Here's a great clip, though I recommend you go to the site and read the rest of it, and the comments too:

The new (to me) hot word in the political arena is “optics”. It’s all about how you see things - perception. Perception is in the eye of the audience. (Kind of like pain or shortness of breath is what the patient says it is.) We want and NEED to have a relationship with our patients and families who are part of the general public. We need them to perceive us as helpful and valuable both to serve them and to promote our vision of a holistic health care environment that matches patients’ preferences with appropriate care. So why do our patients/families, through the media and through our work, often NOT see us as helpful and valuable, but, as my son once proclaimed me, as “The Mistress of Death”? What, we must ask if we want to sustain a future in this relationship, is our part?

Dr. Meier observed that we use language that associates palliative care with dying. Consistently. Language is important. Language creates perceptions and (may) define our relationships with the people we care about most. Consider that the tiny line in the proposed health care bill allowing physicians to be reimbursed for having a conversation every 5 years with their patients about advance directives DIED because of optics. It was perceived (used, twisted, misconstrued) by a few clever politicians that physicians were going to talk about dying and (logically, of course) talk people into dying. They quickly conveyed this idea to the general population, OUR audience – our audience who votes. Language. Optics.

Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.

Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?

On the other hand, if these words cause others to retreat from our services, how does it serve either of us? Does rubbing someone’s nose in something we feel is important make them want to be our friends? Probably not.

Labels: , , , ,

What Is a Natural Death?

Elana Premack Sandler at Psychology Today asks her readers what they think about assisted suicide as she feels her way through the subject in the wake of a host of publicity. I appreciate her nuanced and open willingness to examine the topic, particularly when so many do make a snap-judgement about assisted suicide. I recommend you read her entire post and comment! But there's a point in one of her paragraphs that I want to jump off from. She writes:

Does assisted suicide undermine suicide prevention? "Obviously!" you might think. Working for a suicide prevention organization, and as a suicide survivor, I really wrestle with supporting idea of suicide - at all.
Since so many people who choose assisted suicide are suffering from incurable degenerative diseases, the cessation of pain - psychache or not - is very appealing. Just as I wish that people who are in extreme emotional pain did not have to experience such terrible pain, I wish the same for people in extreme physical pain. But, will a person who dies by assisted suicide experience more dignity and peace than they would have if they had died by natural causes?

Ok, maybe a quick point. Then I'll jump off. The recent report from the first year of legalized Death with Dignity in Washington state shows that most of those terminal patients who elected for DwD said their reason was autonomy. More so than fear of pain or existing pain. I'm always suspect of polls that ask people in crisis and distress to identify what the cause is. It's almost unfair to ask a dying patient to identify why they are ready to die. But nonetheless, a majority of patients said autonomy. End of point.

What I want to take up from the above paragraph is that tired but prevalent phrase: "natural causes." Once was a time when death meant the rather simultaneous cessation of heart beat, breathing and brain function. Those days are over. Medicine now can maintain heart beat and breathing almost indefinitely. That leaves brain function. As I noted yesterday, Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo proved that many, particularly those in the extreme religious right, oppose the use of brain function as a determining factor for death. This brings the term "natural causes" to a new definition.

All three women could eventually breath on their own. All had functioning hearts. Both functions were essentially resuscitated via CPR, or other techniques that shock the heart and lungs back to operation. Prior to the invention and widespread use of defibrillators, CPR, respirators, and even 911 in the early 70s these women would have died of their initial injuries. Their lives were, after resuscitation, prolonged via artificial nutrition and hydration and the battles over their lives stemmed from their family members attempting to remove them from ANH.

The prevalence of amazing, life-prolonging technological and medical advancements does extend American lives. This is a wonderful and miraculous thing. But it has changed how we die and what we now call death. Few deaths these days can be considered natural, however. It's time we reconsider the term and in doing so, start to talk about what death now means.

Labels: , , , , , ,