Thursday, March 17, 2011

A Lasting Gift

Monday I read with interest the Amednews.com article by Kevin O’Reilly:  1 in 3 Surrogate Decision-makers Carries Lasting Emotional Burden: a new study finds that advance directives ease stress when making treatment choices for others.

"We had always thought about documenting your wishes and knowing what the patient wanted as a protection and a benefit for the patient," said Wendler, head of the Unit on Vulnerable Populations at the National Institutes of Health Clinical Center's Dept. of Bioethics. "This study suggests that there is an additional benefit as a protection for the family. Just leaving decisions up to the family may well be counterproductive and make it harder on the family, not easier."

I and my siblings can attest to the lasting gift our mother gave us.  There is a peace in knowing we followed her wishes when she had the massive intra-operative stroke which ended her life.

She repeatedly over the years told us what she wanted and what she didn’t want.  We are able to discuss it without feeling morbid.  My husband is not.

My dear husband finds it uncomfortable when I want to tell him what my wishes are when the time comes for tough choices.  I tell my siblings and hope they will help him (and me) when the time comes.

I don’t know what his wishes are.  So if I have to make the choices for him, I may in reality be making the choices I would want made.  Because it won’t be clear, there may be conflict between what his family (parents and siblings) would chose verse my choices.

Many of us medical bloggers promote Engage With Grace (a movement aimed at having all of us understand and communicate our end-of-life wishes) over the Thanksgiving weekend.  The Annuals of Internal Medical article (full reference below) reinforces the importance of this discussion between family members. 

I would go so far as to say the discussion should occur between friends as well. 

 

Having the discussion may become a lasting gift of peace you and I can give each other.

Here are my Five Wishes (pdf file):

1. I would ask my sister (CD) to help my husband (BH) make care decisions for me when I can't.

2. If there is no chance of recovery from the illness, then simple make me comfortable.  Do not do anything and everything.  If there is no chance of recovery from a major trauma, then do what needs to be done to preserve the organs for donation.  If the doctors don’t remember to ask, then tell them.  Donate everything that is usable – this includes the face, the hands, bones, heart, liver, everything.  As I wish to be cremated, it will be nice to know someone is helped.

3. I am not fond of pain, but hate the foggy headedness and nausea I get from the pain medicines I have taken.  If possible find a compromise for me so I can be aware of visitors, listen to music and books, etc.

4. I want visitors who will tell me jokes and stories, who will read books (novels, adventure stories, mysteries, newspapers, etc) to me.  If I am able, I will play cards and checkers with you.  Bring the dogs along.  Watch movies and TV with me.   Cover me with a colorful quilt.

5. I want all of you to know I love you.   Here are My Funeral Wishes.  If we (BH and I) still live at the same house when my death does occur (hopefully years from now), then spread my ashes under the oak tree in back (the one with the wind chimes) where the ashes of Columbo, Ladybug, and Girlfriend reside.

 

 

REFERENCE

Systematic review: the effect on surrogates of making treatment decisions for others; Wendler D, Rid A.; Ann Intern Med. 2011 Mar 1;154(5):336-46.

11 comments:

Can you give me a pound ? said...

Hey I like reading your blog , could you plesee come and suport mine? many thanks !

Maryjonono said...

This is an incredibly beautiful and honest post. I loved reading your wishes, they brought tears to my eyes. You have opened my eyes on so many topics. Thank you so much, love this blog!

Dreaming again said...

Beautiful.

I wish that for those who are adverse to discussing it could understand that it is not morbid, but rather, liberating ... it doesn't have to be dwelt on, just dealt with.

Enough to know what to do in a crisis.

I was talking about this with a classmate last week. She was upset because her parents were talking about it. I told her it's much like when we were kids in school ..fire drills and the emergency things like stop drop and roll .. so that it gets into the brain but doesn't take up our time.

We know if we catch on fire to stop drop and roll ..but how often do we actually THINK about it? Not often.

In my opinion, talking about these things should be like fire drills and stop/drop/roll education. So that what we know can take over rather than the chaos around us.

Christian Sinclair, MD said...

RLBates,

Thanks so much for being open and honest. it is nice to see that even physicians have family members who may not be able to handle all these discussions. Just wrote this post up over at Pallimed.

Thanks for sharing. Now I am debating on whether to do this myself! You got us thinking.

Neha said...

Oh, Ramona.

This post is a gift your family will cherish. You are a role model.

Betsy said...

Reading your post has inspired me to commit to writing a short-n-sweet article for Health Care Decisions Day about what a gift it was to know what my mother, sister and brother wanted when they had life-threatening illnesses. Their strength allowed me to come from a place of courage and advocate on their behalf with a clear mind and heart, even while being accused of being a murderer.

rlbates said...

Betsy, would love to read it. Hope you'll share the link.

Christian Sinclair, MD said...

Betsy, I would invite you to share your story with National Healthcare Decisions Day

http://www.nhdd.org/2011/03/open-invitation.html

They are looking for stories from people about making advance directives and medical decisions for others.

If you write it somewhere else please post the link here!

annette2 said...

I get teary reading about decisions like this. Though I have often read your blog you are still a stranger to me yet this type of meaningful post is very affecting.

What a bunch of memories will be under your tree
Annette

risaden said...

This is lovely. Thanks for posting it.

SeaSpray said...

This is a beautiful post and a gift to your loved ones.

I know better and yet I always refuse advanced directives. I used to hand them out and explain them at work too. I guess it's like life ins ...no one wants to talk about it in reference to themselves or family, but you are sure glad you have it if needed. We should all have that talk.

A friend who taught on death and dying once told me that people don't want to discuss these things because they feel it could be death producing. I know they provide peace of mind and ensure your wishes carried out.

My concern is because I believe in miracles ...how do you know when to pull the plug? For some that is clear cut. I can't stand being thirsty and so at very least ..I'd want to be hydrated.

Question: if a person's body IS shutting down, do they still experience thirst? I know their mouth and lips dry but do they experience thirst? Because I thought I heard or read ..that the body doesn't experience the usual things as when healthy because it is shutting down.

I guess in terms of miracles ..you'll live even after the plug is pulled if God has a purpose for it. Like for Karen Ann Quinlan. Joe and Julie fought for her right to die and when they could have the plug pulled ...Karen lived another 5 yrs ..although in a vegetative state.

I like your plans Ramona. A nice ending. I'd want to play scrabble.

My friend had a good ending and there was a peace in her and her family. Sorry so long - moving post.