Gramps was here…..


Vic and her Gramps 1.4.2011
Vic and her Gramps 1.4.2011

Monday 7.1.2013  was a crazy day.  Vic was not in a good space.

Angela, Vic’s BFF came to visit.  She is not only beautiful but also a calm and serene person.  She radiates goodness.  Angela being here gives me some time because I really trust her.  I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know.  He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15th of May 2011.  He died in our home (in the very same room as Vic) surrounded by his beloved family.  At times he was a stranger in the world.   Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom.  Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill.  At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…”  I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers.  Of course, Vic immediately got a bee in her bonnet and had to get out of bed.  Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”.  She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for.  She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit.  It was touching when she spoke with Vic and apologized for coming to visit too late.  Vic was sleeping and not aware of the visit.  Joanna left with tears streaming down her cheeks.  She left a little gift for Vic

“I wrote your name in the sand
But the waves blew it away
Then I wrote it in the sky
But the wind blew it away
So I wrote it in my heart
And that’s where it will stay.”

 Siza arrived and told me that Sue would be in tomorrow morning to assess Vic.  She said Vic’s colour is very poor and the circulation in her legs bad.  Siza is of the opinion that the most humane thing to do for Vic would be to sedate her…  Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn.  My poor child’s anguish and pain sears through every nerve ending in my body.  Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end.  But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die.  Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries.  He came to visit.  I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit.  When I told her that Vic had seen Dries she burst into tears.  She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit.  Bella, a dear friend over the years, spoke to the boys with so much compassion.  He grew up in a home with a mother who was ill.  He said that the congregation has never stopped praying for us as a family.  He said the congregation carries us in their hearts.  (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family.  Someone stifled a little sob.  There was absolute peace and a Godly presence in Vic’s room.

Related posts:

Rest in peace dear friend    https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work   https://tersiaburger.com/2012/07/18/487/

VICKY – A WOMAN OF COURAGE!


My beautiful baby girl
My beautiful baby girl
What makes Vic strong?
Her heritage…
 
What makes Vic weak?
Her fears…  
                      
What makes Vic whole?
Her God…
 
What keeps Vic standing?
Her faith…
 
 What makes Vic compassionate?
Her selflessness…
 
What makes Vic honest?
Her integrity…
 
What sustains Vic mind?
Her quest for knowledge…
 
What teaches Vic all lessons?
Her mistakes…
 
What lifts Vic head high?
Her pride…
 
What if she can’t go on?
Not an option…
 
 What makes Vic victorious?
Her courage to climb…
 
What makes Vic competent?
Her confidence…
 
What makes Vic beautiful?
Her everything…
 
What makes Vic a woman?
Her heart…
 
Who says she needs love?
She does…
 
What empowers Vic?
Her God …

 

 

 

 

 

 

 

 

 

 

 

 

 

       

 

 

 

 

May the stars carry your sadness away


My wish for Vic
My

Tomorrow may be better than yesterday


Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485
Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating.  Last night the nausea was absolutely relentless.  With no food in her stomach Vic vomited blood.  Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night.  I cried and slept in her bed with her.

 

Today Sr Siza tried to put up an IV drip.  Vic has absolutely no veins left that are suitable for a drip.  The sub-cutaneous driver is back up.  At this stage of the game the risk of cellulitis is less than the need for pain and symptom control.  We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron.  “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.”  http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital.  Vic refused.

On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating.  It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.

 

 

 

 

 

“Sisters by Heart”


Vic lost the Christmas gift she bought Esther. It is not the first time this has happened – Vic previously bought Esther a “Sister” fridge magnet and mislaid it somewhere…

Vic has spent a lot of time sorting out some last things – double checking her insurance policies, photo albums, writing cards for the boys to be read on the first Christmas, first anniversary, final school exam…  She has been going tick, tick, tick…Oops Outstanding item: Esther’s gift!

I have searched the house and not found the sentimental nick-nacks Vic bought Esther for Christmas.  I have driven around and looked for replacement gifts, but to no avail.  So yesterday Vic said to Esther “Sis, I have to replace your Christmas gift…  I cannot move on before I do that…Mommy is taking me to Eastgate tomorrow.  I know I will find it there.”

Esther, who has a superb sense of humour, said “I won’t let you die before I get my present…What time are we leaving tomorrow?”

Early this morning Vic was dressed and ready for the excursion.  At about 11am we set off shopping (after a hefty pain and nausea injection…) At the second shop we struck gold!  (I actually found the gift she was looking for.)  Vic had the salesperson wrap it with Christmas gift wrap.   She is a stickler for “attention to detail”

Mission accomplished we went to a restaurant for lunch.  As usual Vic agonised over the menu.  She wanted a salmon dish with cream cheese – No salmon…. Arghhh!  She settled for a sandwich and coffee.

The gift Vic bought was a Willow Tree figurine set of two girls holding hands.  “Just like we lay and chatted last night Sis…”

Sisters by Heart

Celebrating a treasured friendship of sharing and understanding

 “I’m very close to my sisters, and the friendship and support of other women has always enriched my life. I also realize that there are friends or other relatives that may not be blood sisters, but share this same type of closeness.”

 

Vic and Esther are step sisters.  There is no blood bond, but they are bound by their deep love for one another.  Esther has been an absolute pillar of strength to Vic and the rest of the family.  Daily Esther sends Vic beautiful text messages.  She brings Vic flowers from her garden.  She lies next to Vic and listens to her babbling.   Esther is the sister Vic never had.

Needless to say, Vic did not handle her lunch well and after a visit to the toilet we left.  I could see her heart beating like crazy in her neck.  People looked at us as far as we walked.  I realized with a shock that it is because Vic obviously looks ill and shuffles like an old person.  I look at her and I only see a beautiful young woman; my baby girl and the mother of my grandsons.

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service.  She cried when she (again) named her pallbearers.  “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”

Vic asked that I get her minister to come and administer Holy Communion to her this week.

The whole situation is so surreal.  I find it impossible to believe that Vic may actually be dying.    She is so beautiful and her mind is crystal clear!  I think Vic is just caught up in the Hospice talk.  Maybe I am in denial.  She has not vomited blood for two days.  That is a good sign.  Google says her heart rate can go up to 250 and Vic’s HR is only at 120 and occasionally at 155.

Oh dear God please grant my child peace.  Please grant us all peace.

Sisters holding hands
Sisters holding hands

Celebrating a treasured friendship of sharing and understanding

"Sisters by Heart"
“Sisters by Heart”

 

I read in the Bible that Heaven is a great place…”


Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..."
Dr Sue putting up the drip.  “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein.  The vein held for the Perfalgan and she also managed to get a bag of saline into Vic.  This will hopefully rehydrate her.  It has been a rough 24 hours with so much vomiting.  The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling.  Leon, SiL, put a hook into her ceiling and we have suspended the drip from it.  I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan.  Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted.  Sue agreed that it would certainly make life a lot easier.  It would be easier to administer all Vic’s IV medication.  Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling
Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped.  Vic’s breathing is better.  Vic has not vomited since 11 am this morning!  She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back.  Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed.  That is what the blood tests show.

What is holding Vic back?  Sue says death happens when one relaxes completely and deeply!  Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited.  Vic even got out of bed for a while and had a laugh.  It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable.  I wish with every fibre of my body Vic will find peace.   That she will find the strength to let go…

Vic has been ill for such a long time.  Maybe she just thinks this is how life is.  Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain.  To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours 

Obed Akuma
vicbaby

 Baby Girl it is time for Heaven…   You have to let go!

“More than you know”


18052009099
I have received a couple of very touching emails from Judy Unger.  I am an avid follower of Judy’s blog http://myjourneysinsight.com  I have sensed from Judy’s blogs that she has suffered deeply.  I have however always avoided reading her posts on her son Jason’s death.  Somehow it is too close to home.
This week I received another caring email from Judy.  Tonight I read Judy’s post on her Jason-Mark’s journey.   http://myjourneysinsight.com/category/death-of-my-child-jasons-story/.
I wept for Judy.
With fresh, tearfilled eyes, I reread my email.  I listened to Judy’s beautiful song and went to lay with my child.  I held her gently and told her how much I love her.  She is having a bad day and is feeling very frail.
Once again I share this remarkable woman’s caring email with you.  Her words are flattering and the email personal.  Yet I am compelled to share this email…  I hope that you will listen to her beautiful song.  Thank you dear Judy for baring your soul and showing your compassion.  Thank you for reaching out to me!
I am always thinking of you at a time where you are putting one foot in front of the other. There is probably no word in the dictionary to express your exhaustion. Yet, you always find time to respond to every person’s comment with grace and kindness. 

I loved your last post about tears. How beautiful that you could appreciate tears of joy, and not only of suffering at a time like this. 

I have been deeply touched that you’ve shared my songs and words on your blog. It is unbelievable to me how in the short time I’ve know you, you’ve allowed me to help. I certainly hoped and wished I could. My own life has been enriched knowing that I was able to be there for you and Vic. The lovely comments by people who read your blog have also brought me to tears. 

Since you have been Vic’s caregiver, you already know her absence will leave you with a deep abyss. It is so hard to have that devotion stop suddenly, because you will be going from plodding in exhaustion into nothingness. It is shocking because for so long, keeping Vic going has been your major purpose in life. 

Now I want to share about another song that has helped me. It is my song named “More Than You Know.” 

There are many levels to this song similarly to “Set You Free.” The main theme is of letting go. My song was written about friendship, but I revised it after my son Jason died. The lines that I find most applicable to losing my child was: 

“I just can’t find the words to say how it felt when you went away”

With that line I am saying that nothing can possibly express the anguish of grief. 

“I thought that you were mine.”

I believed that my child belonged to me. He was my purpose and I took care of him until he died. I could not accept his death for a very long time. That was why letting go was so hard. 

Your own eloquent words acknowledge acceptance of Vic’s death. You are preparing yourself to let her go. 

But there is no way to do that adequately. 

I share with you my lyrics and song now. Since you have shared my messages, I want to provide a link here to my story about Jason. It helps to explain my songs and why I want to give you hope as you enter the darkness of grief. Your love for Vic will never end, nor her love for you. 

Please know that you (or anyone grieving) can write to me any time. I am sensitive to grief in all forms, but because I am also a bereaved parent, I am especially sad when a child dies. 

Link to Jason’s Story – myjourneysinsight.com

Here is my latest song to help you: MORE THAN YOU KNOW-Copyright 2010 by Judy Unger

MORE THAN YOU KNOW

You gave me your hand; you’d always understand
No one else could see all the change you’d seen in me
You gave me so much; within a single touch
I searched for a smile; you brought mine back for a while
I just can’t find the words to say
How it felt when you went away
All my life, I hoped you would stay
And when you left, I let you go
But I still love you, more than you know
 I still love you
 
You brought me sunshine; I thought that you were mine
How can I believe? When the warmth of you did leave
You gave me everything that made me want to sing
How could I have guessed that our time would be my best?
I just can’t find the words to say
How it felt when you went away
All my life, I hoped you would stay
And when you left, I let you go
But I still love you, more than you know
 I still love you
I echo you words.

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

SET YOU FREE


A dear blogger friend of mine, Judy Unger, http://myjourneysinsight.com/ has generously mailed me a parcel with some of her songs.  She also wrote me a very touching email and appended a beautiful song sung by her.  The song, SET YOU FREE, http://judyunger.files.wordpress.com/2010/10/set-you-free-9_26_12-copyright-2012-by-judy-unger.mp3 was written by Judy when she faced losing her father and is hauntingly beautiful!

SET YOU FREE - Judy Unger
SET YOU FREE – Judy Unger
SET YOU FREE
 You’re hanging on as night turns to dawn
I know you can’t stay and soon you’ll be gone
we both know it’s hard to let go; wherever you are my love won’t be far
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
There is no fear and your leaving is clear
we’ll still have our love it remains with each tear
 I cry as you leave but I truly believe; as you leave my sight we’ll both be all right
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though you have flown to somewhere unknown
we’re never apart ‘cause you’re here in my heart
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though I long for you to hold me; I need to set you free

Vic is not having a good day.  She is so brave, but it is clear to all that she is slowly losing the battle.

The cellulitis in her arm is slowly clearing, the pain and nausea is under control but Vic is weaker.  She looks old and drawn – the pain clearly etched on her little face.  My heart physically aches when I look at her, and I know that my love will follow her, wherever she may go..

I know I must set Vic free.  I need to release her from the hell she lives.  I echo Judy’s words “You’re hanging on as night turns to dawn; I know you can’t stay and soon you’ll be gone; we both know it’s hard to let go; wherever you are my love won’t be far”  

Thank you Judy for your compassion and sharing your beautiful songs with me.

Where to now?


IMG_7374

The subcutaneous driver is down.  By this morning it was obvious that Vic’s tissue was just not holding up. 

On Friday morning I removed and repositioned the driver.  Serum leaked out of the syringe hole for almost two days.  The area is inflamed, hot to the touch, swollen and painful.  Cellulitis has struck!  Yesterday evening I repositioned the driver again and this afternoon I removed it.  So I will now administer the 150mg of morphine and  the 60 ml Stemitil IM.  Vic’s derriere is black and blue and lumpy from the injections. 

Where to from here?  How are we going to control this poor child’s pain?  I can only think that they will have to fit a central line…  Will they do it?  She will have to go into theatre for that!  There is absolutely no way I would allow the procedure without sedation!  Central lines are very susceptible to infection and sepsis.  

Poor baby.  She is so ill.

Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace.  I sat next to her and thought to myself “I wonder if she will make Christmas?”  But then I thought to myself “Wait a minute…This is Vic…She bounces back!”

Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again.  Then we will decide how to deal with her pain…

Central venous catheter   http://en.wikipedia.org/wiki/Central_venous_catheter

 

From Wikipedia, the free encyclopedia
Central venous catheter
Intervention
MeSH D002405

Central line equipment

CVC with three lumens

In medicine, a central venous catheter (“central line”, “CVC”, “central venous line” or “central venous access catheter”) is acatheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the “mixed venous oxygen saturation”), and directly obtain cardiovascular measurements such as the central venous pressure.

Contents

[hide]

Types

There are several types of central venous catheters:[1]

Non-tunneled vs. tunneled catheters

Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.

Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.

Implanted port

port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.

Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.

PICC line

A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.

Technical description

Triluminal catheter

Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.

The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.

Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration[citation needed] and to cause tissue ingrowth into the device for long term securement.

Indications and uses

Indications for the use of central lines include:[2]

Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.[citation needed]

Triple lumen in jugular vein

Chest x-ray with catheter in the right subclavian vein

The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate.[citation needed] Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.[3][4]

The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed.[citation needed] A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.

Videos are available demonstrating placement of a central venous catheter without[5] and with ultrasound guidance.[6]

Complications

Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.

Pneumothorax

Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.[7]

Central-Line Associated Bloodstream Infections (CLABSIs)

All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidis sepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.

The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections.[8] The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.

The 13 Elements of Performance (EPs):

  • EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
  • EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
  • EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
  • EP 6-13:

– Institute for Healthcare Improvement (IHI) bundle

  • 1. Hand Hygiene
  • 2. Full body drape
  • 3. Chlorhexidine gluconate skin anti-septic
  • 4. Selection of Optimal site for Central venus Catheter (CVC)
  • 5. Daily review of ongoing need for CVC

– Disinfection of intravenous access ports before use

National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.[9]

If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.[10]

Generally, antibiotics are used, and occasionally the catheter will have to be removed. In the case of bacteremia from Staphylococcus aureus, removing the catheter without administering antibiotics is not adequate as 38% of such patients may still develop endocarditis.[11]

In a clinical practice guideline, the American Centers for Disease Control and Prevention recommends against routine culturing of central venous lines upon their removal.[12]The guideline makes a number of further recommendations to prevent line infections.[12]

To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine.[13] Routine replacement of lines makes no difference in preventing infection.[14]

Thrombosis

CVCs are a risk factor for forming venous thrombosis[15] including upper extremity deep vein thrombosis.[16]

Other complications

Rarely, small amounts of air are sucked into the vein as a result of the negative Intra-thoracic pressure and insertion technique. Valved insertion devices can reduce this risk.[citation needed] If these air bubbles obstruct blood vessels, this is known as an air embolism.

Hemorrhage (bleeding) and formation of a hematoma (bruise) is slightly more common in jugular venous lines than in others.[9]

Arrhythmias may occur during the insertion process when the wire comes in contact with the endocardium. It typically resolved when the wire is pulled back.[citation needed]

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What Will Matter – Michael Josephson


My beautiful baby girl
My beautiful baby girl

Ready or not, someday it will all come to an end.

There will be no more sunrises, no minutes, hours or days.
All things you collected, whether treasured or forgotten, will pass to someone else.
 
Your wealth, fame and temporal power will shrivel to irrelevance.
Your grudges, resentments, frustrations and jealousies will finally disappear.
So too your hopes, ambitions, plans, and to-do lists will expire.
 
The wins and losses that once seemed so important will fade away.
It won’t matter where you came from, or on what side of the tracks you lived, at the end.
 
It won’t matter whether you where beautiful or brilliant.
Even your gender and skin colour will be irrelevant.
 
So what will matter? How will the value of your days be measured?
 
What will matter is not what you bought, but what you built;
Not what you got, but how you gave.
 
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
 
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.
 
What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you’re gone.
 
What will matter are not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.
 
Living a life that matters doesn’t happen by accident.
It’s not a matter of circumstance but of choice.
 
Choose to live a life that matters.
What Will Matter – Michael Josephson
 

Morphine extends life!


Vic and I in healthier days

The downward pain spiral has already begun.  Vic is quite swollen and had a bad day.  This afternoon late she perked up and has only had one vomiting spell tonight.

As Sr Siza was examining her this afternoon and taking her vitals I remarked on the swelling.  “It’s the organs shutting down” she whispered….

“I am scared Siza.  I administer such massive dosages of medication to Vic… What if I kill her?” I asked over a cup of tea.

“Don’t worry my love.  You won’t.  There is no upper limit to the amount of morphine that Vicky can go on… As long as we titrate the dosages she will be fine.”

So I Googled Morphine+dosage+death and one of the first articles that came up (and I could understand) is “When Morphine Fails to Kill”  By GINA KOLATA

 Proponents of assisted suicide often argue that when a doctor helps a patient who wants to die, it is no more ethically troubling than when a doctor kills a patient slowly with morphine, often without the patient’s knowledge or consent, a medical practice these proponents say is increasingly common.

So why forbid doctors to prescribe lethal pills that could allow patients to control how and when they die? There is no question that doctors use morphine this way. “It happens all the time,” said Dr. John M. Luce, a professor of medicine and anesthesiology at the University of California in San Francisco. And there is no question that most doctors think that morphine can hasten a patient’s death by depressing respiration. But Luce and others are asking whether morphine and similar drugs really speed death.

Experts in palliative care say the only available evidence indicates that morphine is not having this effect. Dr. Balfour Mount, a cancer specialist who directs the division of palliative care at McGill University in Montreal, firmly states that it is “a common misunderstanding that patients die because of high doses of morphine needed to control pain.”

 No one denies that an overdose of morphine can be lethal. It kills by stopping breathing. But, said Dr. Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University School of Medicine, something peculiar happens when doctors gradually increase a patient’s dose of morphine. The patients, she said, become more tolerant of the drug’s effect on respiration than they do of its effect on pain. The result, Dr. Lynn said, is that as patients’ pain gets worse, they require more and more morphine to control it. But even though they end up taking doses of the drug that would quickly kill a person who has not been taking morphine, the drug has little effect on these patients’ breathing.

Dr. Kathleen Foley, who is co-chief of the pain and palliative care service at Memorial SloanKettering Cancer Center in New York, said that she routinely saw patients taking breathtakingly high doses of morphine yet breathing well. “They’re taking 1,000 milligrams of morphine a day, or 2,000 milligrams a day, and walking around,” she said.

The standard daily dose used to quell the pain of cancer patients, she added, is 200 to 400 milligrams. Dr. Lynn said she sometimes gave such high doses of morphine or similar drugs that she frightened herself. She remembers one man who had a tumor on his neck as big as his head. To relieve his pain, she ended up giving him 200 milligrams of a morphinelike drug, hydromorphone, each hour, 200 times the dose that would put a person with no tolerance to the drug into a deep sleep. “Even I was scared,” Dr. Lynn said, but she found that if she lowered the dose to even 170 milligrams of the drug per hour, the man was in excruciating pain. So to protect herself in case she was ever questioned by a district attorney, she said, she videotaped the man playing with his grandson while he was on the drug.

On rare occasions, Dr. Lynn said, she became worried when she escalated a morphine dose and noticed that the patient had started to struggle to breathe. Since she did not intend to kill the patient, she said, she administered an antidote. But invariably, she said, she found that the drug was not causing the patient’s sudden respiratory problem.

One man, for example, was having trouble breathing because he had bled from a tumor in his brain, and an elderly woman had just had a stroke. “In every single case, there was another etiology,” Dr. Lynn said. “Joanne’s experience is emblematic,” said Dr. Russell K. Portenoy, the other cochief of the pain and palliative care service at Memorial SloanKettering Cancer Center.

 He said he was virtually certain that if doctors ever gave antidotes to morphine on a routine basis when dying patients started laboring to breathe, they would find that Dr. Lynn’s experience was the rule. Patients generally die from their diseases, not from morphine, Dr. Portenoy said.

The actual data on how often morphine and other opiates that are used for pain relief cause death are elusive. But Dr. Foley and others cite three studies that indirectly support the notion that if morphine causes death, it does so very infrequently. One study, by Dr. Frank K. Brescia of Calvary Hospital in the Bronx and his colleagues, examined pain, opiate use and survival among 1,103 cancer patients at that hospital, which is for the terminally ill. The patients had cancer that was “very far advanced,” said Dr. Portenoy, an author of the paper. But to his surprise, he said, the investigators found no relationship between the dose of opiates a patient received and the time it took to die. Those receiving stunningly high doses died no sooner than those taking much lower doses.

Another study, by Dr. Luce and his colleagues in San Francisco, looked at 44 patients in intensive care units at two hospitals who were so ill that their doctors and families decided to withdraw life support. Three quarters of the patients were taking narcotics, and after the decision was made to let them die, the doctors increased their narcotics dose. Those who were not receiving opiates were in comas or so severely brain damaged that they did not feel pain. The researchers asked the patients’ doctors to tell them, anonymously, why they had given narcotics to the patients and why they had increased the doses. Thirty nine (39%) percent of the doctors confided that, in addition to relieving pain, they were hoping to hasten the patients’ deaths. But that did not seem to happen.

 The patients who received narcotics survived an average of 3 1/2 hours after the decision had been made to let them die. Those who did not receive narcotics lived an average of 1 1/2 hours. Of course, Dr. Luce said, the study was not definitive because the patients who did not receive drugs may have been sicker and more likely to die very quickly. Nonetheless, he said, the investigators certainly failed to show that narcotics speeded death.

Dr. Declan Walsh, the director of the Center for Palliative Medicine at the Cleveland Clinic, said it had been 15 years since he first questioned the assumption that morphine used for pain control killed patients by depressing their respiration. He was working in England at the time, and many doctors there were afraid to prescribe morphine or similar drugs for cancer patients, Walsh said, because “they were afraid they would kill the patients.”

So Walsh looked at carbon dioxide levels in the blood of cancer patients on high doses of morphine to control their pain. If their breathing was suppressed, their carbon dioxide levels should have been high. But they were not. Nonetheless, Walsh said, the idea that morphine used for pain relief depresses respiration is widely believed by doctors and nurses because it is “drummed into them in medical school.” So, said Dr. Susan Block, a psychiatrist in the hematology and oncology division at Brigham and Women’s Hospital in Boston, it is not surprising that many doctors try to use morphine to speed dying. “There is more and more evidence most of it unpublished, but it’s coming, I’ve seen it that physicians, in addition to wanting to ease patients’ discomfort, also want to hasten death,” Dr. Block said. “Everyone is feeling guilty.”

Source: NY TIMES July 23, 1997  http://www.chninternational.com/Opiods%20for%20pain%20do%20not%20kill.htm

No more pain angel.

Friends, Lasagna and chocolate pudding…


Gavin, Vic and Darren at Darren’s wedding in 2003

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Today was a great day!

Yesterday Hospice increased Vic’s pain medication by 25%.  The subcutaneous driver is holding up in her arm.  She has not vomited in the past 24 hours.  Vic spent wonderful, constructive time with the boys today.

Yesterday Renée, Jared’s extra maths teacher and a friend, phoned to hear if I wanted to go for a walk.  I declined as Vic was really not well.  Then she phoned to ask if everything was okay.  I said we were having a bad day.  She had read the boys BBM status updates and asked if I wanted her to pop around and help… I declined.   She phoned again and offered to cook us dinner… I said we had already prepared a meal.  Renée said “I will bring you dinner tomorrow night”….

My BFF, Gillian, is visiting.  It is so comforting having her around.  I felt enfolded by the normal-ness of her life today …She is a warm and comforting person who knows my soul as well as I know my own soul.   In the words of the great Aristotle:  “Friendship is composed of a single soul inhibiting two bodies.”  Gill is a safe haven.  I love the no-nonsense way she speaks, her efficiency, her single-minded loyalty and ability to love.  Gillian’s greatest character trait is that she loves unconditionally and NEVER judges.

Gillian is a second mom to Vic.

Vic, Gavin and Darren standing in the house we were building at the time

When our children were growing up we were inseparable.  Gill is a delicate, tough person but cannot handle blood.  I am a tough career girl but cannot handle needles being shoved into my child’s little body.   As young mommy’s I did the blood thing and Gillian did the dentist and invasive tests thing.  She would give the kids a quarter of a Panado and a sermon about bravery and march them off to the dentist, x-rays etc….  I cleaned wounds and stuck plaster over wounds…We are the perfect team.  United against our children….

Vic’s 6th birthday party with Len and Gill’s kids…

When the boys got mumps Vic got mumps, when the boys got chicken pox Vic got chickenpox… Vic had her own bedroom in Gillian’s home.

I cried when her eldest, Darren, went to school the first time.  His little knees were so skinny and looked like matchsticks in his school pants.

Gillian used to relieve me when Vic was in hospital and Len (her husband) would take me for tea and anchovy toast.  Gillian is the first person I phone when I have a Vicky crisis.

After my divorce from Vic’s dad Len and Gill once drove to my new apartment at 2am and took turns in consoling me.  The other sat in the car with the two boys sleeping on the back seat!  In my single days I would go to Gillian for a cooked meal with vegetables…I never cooked!  The night before I remarried I spent the night with Len and Gill.  We laughed and joked and ate toast… Gillian dressed Vic and got her to church…

Gill is one of the most amazing people I know.  She is a friend in a million.

My friend is now semi-retired.  She lives in a beautiful game reserve in the most beautiful part of our country.  Her home is warm and welcoming – a safe haven to a myriad of friends and family.  Gill chats to the boys on BBM and is always 100% up to date on what is happening in their lives.  When I travel Gill will check on Vic every single day!

Yesterday the panic was sitting in my throat.  I felt as if I was choking.  Today Vic is great and Gillian is visiting.  I am calm and at peace.

Tonight Renée dropped off the greatest lasagna and a chocolate pudding.  I am in total awe of the love that we have been surrounded by and absolutely amazed at the kindness that Renée had shown…..  We live in Johannesburg – a concrete jungle!  I am so deeply touched!

So, tonight as my little girl finally settled into a deep and pain-free sleep I allowed myself the luxury of a couple of tears.  Tears of gratitude for the love we are surrounded by!  Tears of gratitude that the pain medication is working!  Tears of gratitude for a good day!

I know that the pain medication will only work for a week or two and then it will have to be increased again.  At what stage will Vic’s body not be able to handle the pain medication any longer?

But tonight I am not going to dwell on my questions.

Just tonight I will indulge in an early night.

The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so ready to enjoy with me the sunshine of my prosperity. – Ulysses S. Grant

 

My beautiful friend in a pensive moment….

 

Final words….


Wedding day

This weekend I again realized that there are people who are going through worse hardships than we are….

Tom, our son-in-law is a lovely, warm and hospitable man.  He has made a huge difference in our lives.  He is brutally honest as an individual.  He has embraced the family and fulfils his role within the family with enthusiasm.   Tom is bright – very bright!  As a computer nerd he lives on STRONG coffee.   He loves playing cricket with the boys.

He is Lani’s soul mate and a wonderful back-up father for the girls.

A couple of months before Tom and Lani got married Tom’s dad died from a heart attack.   A year ago Tom’s sister was travelling from Cape Town with her Mom.  Tom’s mom had been diagnosed with breast cancer and had her first chemo treatment that morning.  A tragic accident…a car landed on top of theirs and Tom’s sister was killed.  His Mom was seriously injured.  Her accident injuries healed in time.

This weekend Tom travelled to Cape Town to say goodbye to his Mom…  She is dying.   Today my dear son-in-law had to sit next to his mom’s bed and speak his final words with her.   In my heart I can see him standing in the door of her room and looking back one final time….It is extremely unlikely that he will see her again….  What thoughts went through his Mom’s mind?  What did she see?  Did she see her adult son she must be so proud of or did she see her little boy playing in the sand?

I kept thinking how unbelievable privileged we are.  We are able to be with Vic every day, every second of the day if we chose…  There is no need for cramming in “final words”.  Every day we have new words, reassuring words, words of love and support.  I cannot imagine having to get up from Vic’s bed, saying goodbye and having to walk away!

Tomorrow morning Tom will wake up; go to work…his thoughts will be filled with thoughts of his mom.  How many times an hour will his mind turn to his mom and her final journey?

My poor Tom!

Travel well dear Marna….

The Liver….


 The liver works with the endocrine system to regulate nutrients in the body and remove toxins. An enlarged liver means that it is endangered due to disease or other factors, which can lead to toxic shock. The proper medical term for an enlarged liver is hepatomegaly.

A healthy liver helps fight infections and filters toxins from the blood. It also helps to digest food, store nutrients for future needs, manufactures protein, bile and blood-clotting factors and metabolizes medications. A healthy liver has the ability to grow back, or regenerate, when it is damaged. Anything that prevents the liver from performing these functions – or from growing back after injury – can severely impact health and very possibly length of life.

What Are the Symptoms of Liver Failure?

The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include:

  • Nausea
  • Loss of appetite
  • Fatigue
  • Diarrhea

However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include:

  • Jaundice
  • Bleeding easily
  • Swollen abdomen
  • Mental disorientation or confusion (known as hepatic encephalopathy)
  • Sleepiness
  • Coma

http://www.webmd.com/digestive-disorders/digestive-diseases-liver-failure

Causes

Fatty or enlarged livers are caused by infections, certain medications, general toxicity, hepatitis, autoimmune disorders, metabolic syndrome and genetic disorders that affect the liver. Abnormal growths, such as cysts or tumors, impact liver size. Blood-flow symptoms, such as heart failure, can cause liver enlargement. Conditions also exist that restrict blood to the liver veins, such as hepatic vein thrombosis.

An enlarged liver indicates a problem with the liver itself or your overall endocrine system. If you suspect that you have any of these symptoms, you should seek medical attention. The causes of an enlarged liver vary in their severity and complexity. Only a medical professional can make the proper diagnosis for the cause of an enlarged liver.

Read more: http://www.webdiagnosis.com/causes-of-an-enlarged-liver#ixzz2CzDrLFH2

If not addressed and stopped in the earlier stages, the damage resulting from these multiple causes leads to scarring of the liver, known as cirrhosis, where large portions of the organ begin to lose their capacity to function or regenerate.

Treatment of patients with liver failure is specific to the unique symptoms and conditions experienced by each individual. Any patient with liver damage will be asked to abstain from alcohol. For patients with cirrhosis and end-stage liver disease, medications may be required to control the amount of protein absorbed in the diet. If there has been a build-up of toxins, particularly high ammonia levels, medication will be offered which lowers these levels. Low sodium diet and water pills (diuretics) may be required to minimize water retention. In those with large amounts of ascites fluid, the excess fluid may have to be occasionally removed with a needle and syringe (paracentesis). Using local anesthetic, a needle is inserted through the abdominal wall and the fluid withdrawn. Sometimes surgery is performed to minimize portal hypertension and lower the risk of gastroesophageal bleeding.

At this point, a person may become a candidate for liver transplant of part or all of the liver. Transplant success has improved in recent years with 1-year patient survival rates of up to 87%.  Due to the severe organ shortages, patients who are listed for liver transplantation have an estimated wait time of 1 to 3 years, depending on blood type and illness severity. Many patients are never able to be considered for transplants due to severity of their disease, other medical problems, or social considerations such as ongoing alcohol use or non-compliance with treatment recommendations. Others die while waiting for a transplant as their disease continues to progress.

The impact of these various symptoms and conditions on suffering and quality of life are profound, and ESLD patients can benefit greatly from hospice and palliative care. Even, when an ESLD patient is on a transplant list, this does not automatically prevent them from being on hospice services.

According to Medicare/Hospice  guidelines, patients will be considered to be in the terminal stage of liver disease (life expectancy of six months or less) and eligible for hospice care, if they meet the following criteria (1 and 2 must be present; factors from 3 will lend supporting documentation):

1. The patient should show both a and b:
a. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR)> 1.5
b. Serum albumin <2.5 gm/d1

2. End stage liver disease is present and the patient shows at least one of the following:
a. ascites, refractory to treatment or patient non-compliant
b. spontaneous bacterial peritonitis
c. hepatorenal syndrome (elevated creatinine and BUN with oliguria (<400ml/day) and urine sodium concentration <10 mEq/l)
d. hepatic encephalopathy, refractory to treatment, or patient non-complaint
e. recurrent variceal bleeding, despite intensive therapy

3. Documentation of the following factors will support eligibility for hospice care:
a. progressive malnutrition
b. muscle wasting with reduced strength and endurance
c. continued active alcoholism (> 80 gm ethanol/day)
d. hepatocellular carcinoma
e. HBsAg (Hepatitis B) positivity
f. hepatitis C refractory to interferon treatment

http://www.hospiceofthecomforter.org/en/post/medical-perspective/understanding-endstage-liver-disease