Quiet waters of peace


Lead me to the quiet waters of peace
Lead me to the quiet waters of peace

 

 

 

 

 

 

 

 

 

 

 

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.”  

 

 

An end of life discussion is one of the most important things to do right


Vic July 2007

This is a subject very dear to my heart.  Vic has been saved from the claws of death so many times in her little life.  I often lie in bed thinking how much physical pain and discomfort I have imposed on Vic by not allowing the doctors to not give up.  By cajoling her into living.  Twice this week I begged her to allow me to take her to hospital.  I promised earlier this year that I would respect her wishes. https://tersiaburger.com/2012/05/18/6-5-2012-3/   

My BFF, Gillian, sent me this email message:

Morning, you summed up “Where did the time go” perfectly. I cannot believe that 8 years have passed so quickly. Jon Daniel was 7 and Dr said he would not understand about death, but Jared 9 would be able to comprehend and mourn. You wonder what is better……. When they are little or older. Vic our miracle child has hung in there for her Angels. She can only be commended on her will power to add another day to their lives. She has no life. Except to smile with sad eyes every time she sees the boys for another day. As hard as it is to nurse your child, you are also spared Another day good bad or ugly. God has sent Vic to us give each one a lesson – not to complain or give up – the Power of the mind. Be grateful for what we have body mind and soul. Love you all with all my heart

What Gillian wrote in her mail is so true.  If I had allowed Vic to die earlier she would of been saved incredible amounts of raw, undiluted suffering and indignity!  A couple of posts ago I wanted to include a photo of Vic’s abdomen so people could understand what a person looks like after 81 abdominal surgeries.  I decided against it as it is too horrific to post.  But we have been blessed with some wonderful times.  The boys are now old enough to understand the extent of her suffering.  At this stage I am focused on her pain.  I remember when I was stressed that she was taking a couple of hundred milligrams of morphine a week.  Now it is a couple of hundred per day…

Reblogged from http://www.kevinmd.com/blog/2012/11/life-discussion-important.html by  on November 11th, 2012 in PHYSICIAN.  I read this on Andrew’s blog  on http://lymphomajourney.wordpress.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-to-do-right/

During an internal medicine residency, newly hatched doctors are responsible for some of the sickest patients in their teaching hospitals. This is because those patients often don’t have private doctors to attend them and are poor and sometimes self abusive, with the complex problems that go with smoking, drug and alcohol abuse and lack of regular medical care. These patients often present with their diseases late in game, when much must be done quickly.

There is little or no time to discuss end of life issues and so the assumption is made that these folks want “everything done” which includes machines and potions to support organs and bodily functions as they cease to work right. A scenario might look like this: 48 year old heroin abuser comes in with fever of 104 and symptoms of a stroke. He is admitted to the intensive care unit with low blood pressure, becomes gradually delirious and his heart rate increases, he is sedated for trying to crawl out of bed and run off, he becomes lethargic and is unable to breathe for himself, a central line is inserted and he is intubated and put on a ventilator, his blood pressure is supported with pressors and fluids, his oxygen level cannot be supported despite high ventilator settings. His kidneys cease to work and his heart goes into a rhythm that produces no blood pressure at all, he receives CPR with chest compressions, he is resuscitated, but barely alive, unable to communicate, obviously brain damaged beyond repair, placed on dialysis, eventually succumbs to overwhelming infection. We call this a “flail.”  It is horrifying and time consuming and ultimately a colossal waste of human and monetary resources. Repeated experiences of this type sour most of us on the idea of being resuscitated, so many doctors consider themselves “DNR (do not resuscitate).” We don’t want to be resuscitated ever, no matter what. There are some things that are worse than death.

Some resuscitations go well, though. A patient arrives in the emergency department with chest pain, develops an arrhythmia, has chest compressions briefly and electrical cardioversion and is conscious within minutes or hours. Some people briefly can’t support their own needs for respiration and require a few days of ventilation before being able to breathe adequately. Although they are weak and puny for awhile, they go home and live to tell the story, go back to work, raise families, climb mountains. These successes usually happen to people who were vital before they became really sick, the younger folks, without multiple or terminal illnesses to begin with.

When someone is admitted to the hospital, the physician responsible for their care (which is more and more often the hospitalist) determines, if possible what their wishes would be regarding life support should their breathing or heart stop. These discussions are very difficult if the patient has not thought about resuscitation and has not talked with a physician who knows them about options.

Often patients have reasonable hesitance to make potentially life determining decisions with a doctor who they don’t know and who doesn’t have time to talk with them about the implications of these decisions. In our heads we have a pretty good idea of which patients would do well should they require cardiopulmonary resuscitation, and we really want people whose chances of recovery are lousy to tell us that they are DNR. A DNR decision means that will not flail them. We will not get into a situation in which failure is likely. Should this patient become so sick that medicines, hydration and appropriate surgical procedures cannot save them, we will transition to a strategy that makes death peaceful and painless.

We rarely succeed in communicating this to patients and many who will not benefit from cardiopulmonary resuscitation say “Oh yes, doctor, I want everything done.” Some say this because their experiences are different from ours, they have seen doctor shows in which resuscitation was successful, they think that withholding resuscitation means getting substandard care, and sometimes they think that we just want to spare ourselves the trouble of saving them. And some of these concerns are valid. A patient who is “DNR” may not be watched as closely or treated as quickly if they decompensate. Some people with horrible prognoses do get better after being resuscitated, though this is pretty uncommon and usually involves a pretty significant decrement in quality of life.

Even though it is hard to establish trust with patients or their families in the context of being a hospitalist, I think it is one of the most important discussions to do right. It is everso tricky, though. Even asking the question can make a patient frightened or hostile. They wonder if we are asking this question because we secretly think they are going to die soon. They feel that the subject is too private to broach with a near stranger. They have never thought about it and don’t want to start now. They think that if they make a decision not to be resuscitated that their family members will think that they don’t love them.

But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.

Even though I am a bit biased against intensive and technological medical care, I love actually doing it. The tools of this trade are really clever and the immediacy of the practice is inspiring and brings people together. I have seen beautiful and compassionate intensive care, which makes patients and families feel valued. Nevertheless, there are always the unintentional and casual cruelties of disturbed sleep, needles, boredom, prickly heat, bowel indignities, physical pain and nausea. Death following chest compressions and electrical cardioversion is not peaceful.

When I sit with a person and hear that, no, they don’t want intensive care or cardiopulmonary resuscitation should their heart or lungs cease to work, and it is clear that resuscitation is not in their best interest, my heart feels lighter. I can focus more on what the patient values rather than what procedures are most likely to keep them alive for the longest time.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

I have a living will 31.7.2012


I have become accustomed to the ICU at the Donald Gordon Hospital.  DGH has one of the best Intensive Care Units in the country.  There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department.  No full-time doctors or pain specialists in the Union’s ICU. 

The difference is that the DGH is a private teaching Hospital and does not handle trauma patients.  Only critically ill patients are admitted to the Donald Gordon ICU.   The staff are all ICU specialists.  Ok, I must admit that they also know Vic very, very well.  For the past 7 years they kept Vic alive.  Time and time again she has amazed and astounded them by surviving  every conceivable Super Bug,  ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs.  The doctors that work in the ICU do work at the Pain Clinic.  They understand the benefits of post operation Ketamine Infusions. 

Over the years Vic has spent months and months in the DGH ICU…

When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her.   He knows what she has been through.

This past weekend I spend a lot of time in the Union’s ICU.  More time than I have ever been allowed to spend in the DGH’s ICU. 

Vic, on Sunday morning, was like a wild animal caught in a trap.  Her eyes were crazy.  Vic’s pain levels were horrific and the ICU staff did not know how to handle it.  On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”.   I had to sit in the “Comfort Room”.  It was so cold in there!  The air-conditioning was turned down to near freezing levels.  I was so cold that the bones in my body ached.  At 03:00 I decided to go home.  I was not allowed to stay with Vic and at that stage she was sleeping peacefully.

 I was woken just after 07:00 by the ICU staff asking me to come to the hospital…

My well behaved, docile child had sworn at her nurse.  She was insane with pain.  Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down.  I made the mistake of telling her to calm down… That was an epic mistake!!!

We eventually managed to get her pain under control and then the staff asked me to stay…  I basically left ICU when Vic was discharged into the ward Monday afternoon … 

Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support.  In the one corner there was a young man.  I would imagine that he was in his mid-thirties.  “Was” is correct.  He was declared brain dead yesterday morning.  By now his organs may have been harvested.  Maybe not.  What I am sure of is that his bed is no longer occupied by his imposing body.  Even in the claws of death he had an imposing physique and a presence.  Yet he had no visitors.  Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news.  One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out…  He was left to die alone.

Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family.  The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals.  Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.

I have a Living Will.  I do not want to be kept alive artificially.  I am absolutely certain about it.  I cannot and will not be convinced otherwise.  People should be allowed to die with some dignity.  We all live to dieit is as certain as paying taxes.

What is the purpose of a life with debilitating pain???  I do not want to put my family through it – ever!!  Oh I know my family will miss me.  I know I am loved.  I however know that we live to die.  I look forward to dying.  I look forward to what I have strived for all my life.  Peace, no responsibilities, quiet… I know that I will go to Heaven.  I have already been to hell.  I live hell every day.

If I had been ill I could have handled it.  I would quietly have found a way of leaving it behind.  To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through. 

So tonight I ask God again:  PLEASE give me the pain.  Allow Vicky to have some quality of life.  Allow her a life.  Allow her to be loved.  Allow her to love unconditionally and without fear.  Please let her be able to run… give her time on a beach; allow her to turn her face into the sun.  PLEASE let her have a normal life, a job, independence or end this journey.

On Monday afternoon Vic was discharged from ICU to the ward.  I asked the doctor to let Vic come home straight out of ICU.  I can take better care of her at home than they can do in hospital.  Vic is home and last night was a night out of hell.  She was so ill, vomiting all night.  She could not keep her medication down.  No sooner did she take a sip or water or it just came spewing out.  Pain control was absolutely out of the question.

Today I received a message from the Pain Clinic that the Hospice application motivation was underway.  Hopefully we will have an answer by next week.  If only I could give Vic meds intravenously it would be so much better.

Vic also needs physiological support/guidance in making peace with her situation.  From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her.  Vic needs to make peace with her journey and the trip itinerary. 

But more about our family conference and Vic’s emotional battle tomorrow.  It is time for her medication and I need to sleep.