Showing posts with label respect. Show all posts
Showing posts with label respect. Show all posts
Monday, January 4, 2010
Many of us take it for granted that when we die our loved ones, if not able to be present at the time of death, will certainly be around for the memorial service or burial.But what of the hundreds that die completely alone each year. And what happens when no one comes to claim the body?
The numbers of unclaimed persons are on the rise, up between 25 and 50% this year, and it's not because more people are dying alone, but because families aren't able to afford it.
In France the law entitles everyone to a proper burial in a cemetery. However, taking this entitlement a step further, a volunteer group recently formed in Paris called "Les Morts de la Rue" (the dead of the streets) to make sure that every unclaimed body has at least one person present to witness the burial. Usually something is said about the date of birth and death, or the meaning of the deceased's name. In India, there is a group called the Shaheed Bhagat Singh Sewa Dal, made up of a few volunteers who preform the last rites and cremation of the unclaimed bodies in New Delhi. They are "on call" to bestow this religious gift those who have no one.
While I couldn't find any particular organization that presides at unclaimed burials in the US, I did find a group present at soldier's burials. If you are a soldier being buried in Arlington National Cemetery, you are guaranteed to be buried with someone present. Such is the mission of the "Arlington Ladies". Created in 1973, they have ensured that since their inception, no one buried in Arlington has been buried alone. The group is made up of about 60 members of the Officers Wives Club. They volunteer once a month in pairs, to attend the average of 10-20 interments daily.
The ceremonial sequence is always the same, the Arlington Lady stands silent holding the arm of an escort from the Army's Old Guard. Once the folded flag is presented to the soldier's next of kin, the Arlington lady steps forward and presents a card and words of condolence. She then steps back to the escort and looks straight ahead for the remainder of the cermony. There is a dress code, no slacks can be worn. There is no inclement weather policy, they are present rain, snow or sun.
There is a lot of talk about dignity in death, especially in palliative care. I wonder to what extent this goes... should we be organizing grass roots volunteer groups like the Les Morts de la Rue or the Shaheed Bhagat Singh Sewa Dal for the unclaimed of our society? Or is that going too far?
*flag photo credit eqqman on Flikr
Monday, January 4, 2010 6
Monday, September 28, 2009
The nice thing about art is the ability to interpret a piece from your own perspective based on your life experiences and knowledge. Tonight I will attempt a great feat by turning a song about being left alone and ignored on the dance floor into a reminder of the importance of respect in caring for patients.
The Ting Tings released "That's Not My Name" in 2008 and it quickly spread through MySpace and eventually the UK Charts to become a dance club anthem. The catchy yet slightly bratty lyrics feature a frustrated woman who despises being forgotten and never having anyone identify her as someone of worth. The big bass drum beat and hand claps in the opening verse give the song a cheerleading type quality matched by lead singer Katie White's chanting style of singing.
The dramatic pause of music allows the full weight of the lyrics sink in: "With nothing to consider, they forget my name (ame, ame, ame)" the final words like a pitiful echo chamber resonating the isolation the singer feels.
Taking into consideration Mazlow's Hierachy of Needs this song clearly fits into Esteem but also has roots in the Love and Belonging level. One could also consider it as 'continuity of self' and 'maintenance of pride' in Chochinov's Dignity Conserving Perspectives model. (free full text) For the patient with a potential life-altering illness it is difficult to consider being able to 'accept facts' under self actualization if everything in the medical system is designed to dehumanize you one interaction at a time.
The obvious dehumanizing example in the hospital is defining patients not by their name but by age, gender and illness and location as in: "the 54 year old female with lung cancer in the ICU." In addition the gigabytes of data, text and images which define a patient via their ever expanding medical chart (paper or digital) serve a similar dehumanizing role.
Two questions I find very helpful in making a stronger connection with patients include asking about name preference and correct name pronunciation. "Do you like/prefer to be called ______?" "What do your friends call you?" are two easy ways to address name preference. Even if it is classically a term of affection like 'Doll'* or a family relation like 'Gramps' if that is the patients preference even for staff to address them I go with it. (*except when it is not a term they choose themselves - see Elderspeak below)
Correct name pronunciation is probably one of my biggest social pet peeves in medical care today. It flabbergasts me to find highly skilled and well educated professionals stop short of pronouncing a potentially difficult name; often times it may come from a culture different than the majority of staff. If you are going to take a patient for a cholejejunostomy, colonoscopy, phlebotomy, computerized tomography, sunitinib or a palliative extubation you can surely spend 30 seconds to understand how to correctly pronounce their name be it Lee Thi Nguyen or Wilhelmina Van Rijn (not patients of mine)
Another aspect is the singer's identification of personality which also is easily reframed to a patient navigating a complex illness. How the medical system views a patient maybe 'she's quiet' but to the person with the illness she may consider herself in better times 'a riot.'
And lastly the refrain "Are you calling me darling? Are you calling me bird?" resonates with current research in geriatrics demonstrating the use of Elderspeak has a demoralizing effect in geriatric patients. Although calling a patient 'darling,' 'doll' or 'bird' may seem endearing it too becomes another way to dehumanize and individual by tagging them with a generic nickname.
I have left a few other gems in the lyrics for you to interpret on your own. Tell me if you hear some of the same themes when you listen to "That's Not My Name."
"That's Not My Name" by The Ting Tings (Columbia Records UK-2008)
Lyrics:
Four little words just to get me along
It's a difficulty and I'm biting on my tongue and I
I keep stalling, keeping me together
People around gotta find something to say now
Holding back, everyday the same
Don't wanna be a loner
Listen to me, oh no
I never say anything at all
But with nothing to consider they forget my name
(ame, ame, ame)
They call me 'hell'
They call me 'Stacey'
They call me 'her'
They call me 'Jane'
That's not my name
That's not my name
That's not my name
That's not my name
They call me 'quiet'
But I'm a riot
Mary-Jo-Lisa
Always the same
That's not my name
That's not my name
That's not my name
That's not my name
I miss the catch if they through me the ball
I'm the last kid standing up against the wall
Keep up, falling, these heels they keep me boring
Getting glammed up and sitting on the fence now
So alone all the time at night
Lock myself away
Listen to me, Oh nah.
Although I'm dressed up, out and all with
Everything considered they forget my name
(ame, ame, ame)
Male background singing:
Song was my in my head and now its in my mind
call the preacher, get some words and get some time
You know I realized. I cannot emphasize
Sitting around with just a promise, nothing binding
Whatever, can't you see? Living so desperately
Standing and choking like a vocal one-liner
Instead of sing-along this song is monotone
I gotta get some soul. I gotta get some feeling
They call me 'hell'
They call me 'Stacey'
They call me 'her'
They call me 'Jane'
That's not my name
That's not my name
That's not my name
That's not my name
They call me 'quiet'
But I'm a riot
Mary-Jo-Lisa
Always the same
That's not my name
That's not my name
That's not my name
That's not my name
Are you calling me darling?
Are you calling me bird?
Are you calling me darling?
Are you calling me bird?
Williams KN, Herman R, Gajewski B, & Wilson K (2009). Elderspeak communication: impact on dementia care. American journal of Alzheimer's disease and other dementias, 24 (1), 11-20 PMID: 18591210
Monday, September 28, 2009 0
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