Palliative care


Vic and her mommy

Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition.  In actual fact they are merely kept breathing….   More treatment will only prolong their dying.

It is at this point that patients and families face difficult choices about the kind of care they want….

I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.

Vic has reached a stage in her life where she wants to die.  She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity.  Vic needs help with almost all her day-to-day activities.

Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones.  Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want.  It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…

“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:

I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice.  I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!

WHAT IS PALLIATIVE CARE

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html

WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.

The main things hospice can help with are:

  • pain and symptom control
  • psycho-social support and advise
  • spiritual support
  • emotional support
  • bereavement support
  • equipment (wheelchairs etc)

The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.

Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”

As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and  periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…”  I do not want my child to die.  I merely want her suffering to END!

As a family we have moved into a phase where the stress of the situation can no longer be ignored.  It is making all of us ill.

This week has been an emotional roller coaster!  On Tuesday I cried in front of a strange doctor.  Wednesday I felt that I was losing the plot.  I was unable to function on a professional level.   My mind was absolutely fogged over.  Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…

Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…

He said “Oumie I can see when you are stressed.  You zone out…  You have been very stressed this week….”

“Yeah” I said.  “I have been a little stressed this week.”

“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before!  You always smiled.”

OMG.  What am I doing to the boys?  I realized today that I have to be more careful.  The mask has to go back on.  I scare them when I show my stress.  Imagine what it would do to them if they read my blog…..  Thank God they don’t!

I left the best for last though – no immediate lymph biopsy will be done on Jared.  The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks.   We will give his kidney some time to heal and the CT scan will be repeated again in two months time.

I am feeling so positive!

There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family.  I pray that He will enfold Vic and the boys in His Mercy and Grace.  I pray for my mask!

Vicky Qualifies as a Hospice Candidate…


Schedule 6 medication – 28 days supply

Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”

Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!

This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!

It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen at different stages of Vic’s 10 year journey. She was shocked to hear that Vic spends 95% of her life in bed. That she is too tired to even read.

Rest of Vic’s medication – decanted

Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…”  https://tersiaburger.com/2012/09/12/pain-clinic-11-9

I should have cried earlier.  I have been fighting for months to achieve this!  Then when I give up my fear, exhaustion, stress and defeat obviously showed… Maybe it is the new doctor who has not been desensitized to the suffering of the patients… Maybe there is a God of Mercy after all.

After chatting to us and taking copious notes, we got into Vic’s pain medication regime. I told her about this wonder drug, Jurnista. She just smiled and told me that Janssen’s manufacture Jurnista!  I am amazed that she consults for the Pain Clinic and Hospice and they don’t have the budget to supply Jurnista!

I eventually took her to meet Vic. (Shame poor soul got such a fright when I woke her). She examined Vic briefly, spoke some and made wonderful sympathetic sounds. I introduced her to Jared who was in bed as he was in too much pain to go to school.

She explained to Jared that she was here to evaluate his mom and would be making a recommendation that Vic be accepted into the Hospice program. She also told him we, as a family, needed to have some counselling. The psychiatrist would come to our home…. Jared told her that his pastor’s wife was coming to see him in the afternoon…. I smiled. I know the boys so well. They automatically put up barriers when they hear the word “counselling”….  (It was really the truth – Mrs Pastor did visit.  First visit in 4 years from Vic’s church…)

Christa wished Vic well, hugged me and said “Vicky clearly qualifies for palliative care. I will talk to the Hospice Palliative Care doctor and recommend that they accept Vicky into the program. I will phone you this afternoon”

At 5 pm this afternoon Christa phoned to confirm that the Hospice doctor will evaluate Vic on Monday morning at 7 am!  I read somewhere that terminally ill people often feel that upon entering the Hospice program they go from “dying from….” to “living with….”  It is my heartfelt prayer that this will be the case with Vic.

Tomorrow morning at 9 o’clock my beautiful Jared will go for his CT scan. At 12 O clock we will see the surgeon.

I have stopped thinking and researching Lymphoma.  My heart has stopped beating. It is pounding.

Jared at a guitar recital in 2011

Pain Clinic 11.9


Urghhh!  Yesterday was a horrible day!

Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before.  Although it is on an appointment only basis, it is also first come first serve……

With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist.  Vic was not able to go with yesterday morning so I set off on my own.  By now the Pain Team knows me well.  Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.

Generally I do not have a problem in getting her script even when I am on my own.  I walked in just before 8am and the waiting area was packed!  My heart dropped into my shoes.  It was going to be a longggggg day…..

Surprise, surprise – no Prof Froehlich!  Just a young anesthetist I do not know.  It was going to be an even longer and more stressful day than I imagined when I walked in.

Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts.  That was a first!!!  All of a sudden the queue was much shorter!  There was hope….

I was the second “patient” to be consulted.  Yeah!!!

The Pain Clinic works on a two file system.  The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc.  The patient keeps the brown file.  It contains the prescriptions.

http://www.mardel.com/hot-pink-file-folders.aspx

The new doctor introduced himself and apologized for the professor not being there.  He started paging through the pink file.  He frowned.  He read.  He paged back.  He frowned more.  He shook his head in disbelief and clicked his tongue.  I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock.  He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”

Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.

“Who takes care of Mrs Bruce?” he asked

“I do”

“Do you have help and who is looking after her now?” he asked

“My husband is amazing.  He helps and her boys help.  I also have a domestic who assists.”

“Are you able to work taking care of Mrs Bruce?” he asked

“I am fortunate.  I am able to work from home.”  I said

“How are her sons handling her situation?” he asked

To my shame I started tearing up.  The Sister got up and handed me a tissue.

“It is very hard for them.  I sometimes see the helpless despair in their eyes when they look at her.  Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital.  She was too ill… And now the doctors suspect he may have Lymphoma.  He is only 15…”

“How is she handling it?”  he asked

“Vic is absolutely devastated.  She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.

“Are you having any professional counseling?” he asked

“No I replied.  We use all our financial resources to pay doctors, hospitals and pharmacies.  Counseling cannot and will not keep Vic alive.” I replied.

He started writing the prescription.

“Is she coping with the pain medication?” he asked

“The Jurnista is amazing.  It has made a phenomenal difference in her pain management.” I said

“The hospital will not supply you with the Jurnista.” he said

“I know.  May I have a private script for it please? I asked

“There is no morphine syrup in stock doctor.  Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.

He handed me the brown file and an envelope.

“I have written a referral to the Hospital’s Psychology  Department.  You need to see someone as a family to help you through this.” he said.  “There are other palliative care options other than Hospice.  I see in Mrs Bruce’s file the Prof is working on it…” he concluded

I did not dignify his remark with an answer.  We shook hands.  He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed.  I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.

Today I went to meet Lani’s foster son.  I am going to gloss over my visit with baby Izak.  He is so cute that I need to dedicate an entire post to him.

On my way home I had a phone call.

“My name is Christa.  I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance.  Would 9am tomorrow suit you?”

“Absolutely.” I said.  “Do you need directions?”

“No, I have a GPS” she said….

It is going to be a longggggg night!!!

September and awareness of pain


As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argued with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…  

September and awareness of pain.

 

Extra tablets for your birthday….


Tomorrow, on the 31st of August, we will once again celebrate Vic’s life!  Every year, for the past 10 years, we expected it to be Vic’s last birthday.  Today I know that Vic will live forever.  She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!

Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extra Jurnista into tomorrow morning’s tablets.    Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain…..  My gift to Vic an extra tablet so she can a better day.

So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.

I would pray for adequate pain relief.  I would pray for some quality of life time for Vic with her boys.  I would pray for Vic to have financial independence.   I would pray for Vic to have peace of mind.  I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.

I do thank God that Vic is still alive.  I thank God for Dr Jabber Hussain and Jurnista.  I thank God for Vic’s incredible boys.  I thank God for the brave decision that Vic made not to have further surgery.  Above all, I thank God that Vic is home.

Tomorrow Vic will have a busy day.  She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us.   I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.

What is a relatively quiet day for us is a marathon for anyone as ill as Vic.  I know that she will try so hard to survive the  birthday and the party day.  Somehow I don’t think she will manage it all.  I just hope that she has a good day so she can spend some constructive time with her boys.  They will need to remember this as a good birthday in years to come…..

On Saturday we will celebrate all the August/September birthdays.  Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September….  I hope Vic will be able to handle two busy days in a row.  Maybe the birthday high will carry her through it!

We have a family tradition of doing “birthday eulogies”.  Everyone present gets to say something nice about the birthday person.  Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is.  This year I will I will merely thank her for being here!

Everything else has been said.

Happy birthday baby!

Vic is going to Italy


I sometimes think Vic will live forever.

Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!

On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!

We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!

Life is great!

 

Cannabis and Pain Control 14.8.2012


http://citydesk.freedomblogging.com/files/2011/04/bud.jpg

Today was a terrible day.  The pain Clinic was crazy!  I have never seen so many people waiting to see the Professor.

When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients.  But today there were two new faces.  An attractive young woman and her tired looking mother.  They appeared to not be very cultured or refined people.  The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic.  His sister (S) and mother (M) are his proxy’s.

S became very agitated because she was told – “no appointment,  no consultation, no prescription”.  She actually used some choice language!  She kept saying “It is not for me.  I actually don’t care….”

She however bullied the nurse into agreeing to allow the unscheduled appointment.  But it was a long wait and S, I suspect, is a little ADD.  She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident.  At one stage of the monologue she said “Sometimes I just think I must give him some poison….”

Holy Moses!! It flashed through my mind “What type of person is this?”….

I was intrigued by the personality so I started chatting to her.  All it took was one or two questions and a flood of emotions and words poured out of them.  Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.

She started telling their sad story.  Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures.  He spent many months in hospital and gangrene developed in his leg.  His leg was amputated but the gangrene spread and this lead to 3 further amputations!  The mother said if she had known how he was going to suffer she would have prayed for him to die.

A small percentage of amputees suffer from phantom pain.  “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain.  Brother apparently squarely falls into this category.

Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother  enough morphine to end his misery.  She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…

The mother is taking care of her son.  It is obvious that her life has come to an end.  I see the despair in her eyes when she says “He doesn’t sleep.  Yesterday he threw his crutch at me…..”

Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”

I asked them whether they had ever considered giving him cannabis.  “Oh yes” they said.  “We made him tea and he hated it!”

“It is better if he smokes it” I said

I looked around and saw shock and surprise register on everyone’s faces.  I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”

Well, I do know about cannabis.  I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.

  • Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
  • Medium doses of marijuana can reduce pain perception, another study found. Fifteen healthy volunteers smoked a low, medium, or high dose of marijuana to see if it could counteract the pain produced by an injection of capsaicin, the ”hot” ingredient in chili peppers. The higher the dose, the greater the pain relief. The study was published in Anesthesiology. http://www.webmd.com/pain-management/news/20100218/medical-marijuana-has-merit-research-shows

A couple of years ago I bought some cannabis and put it in brownies for Vic to eat.  She hated it.  I gave her some to smoke.  She hated the effect that it had on her.  I know it is illegal.  Personally I have never smoked or eaten the stuff so I do not know what effect it has on people.  I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.

I will stop at absolutely nothing to relieve my childs pain.

I then had a light-bulb moment – I realized that the mother and daughter were no different to me.  They know the heart wrenching despair of caring for a loved one who has indescribable pain.  They too pray for their loved one to find peace and release in death.  They will also do anything to relieve the pain of their loved one.

I just have an extra layer of veneer