Today we are going to bring up a subject that might make some people uncomfortable. This is not the intent. The motivation is to bring to you the benefit of my over twenty-years experience in the Operating Room, and to help you make the most of your quality of life when it comes to end-of-life care.
Three Hots And A Cot
This is an old saying among those who work in the hospital, where on the coldest of nights, people who have no place else to go, will come to the emergency room complaining of chest pain. They understand the protocol to rule out a myocardial infarction (heart attack) requires three blood tests taken eight hours apart. This why food and shelter is given to them for one day, and it is free of charge, as there are few resources typically available for people who use this as a last resource.
People are clever.
So are those who work in the hospital for figuring out a quick saying that captures the situation succinctly, and allows more energy to be focused on other priorities besides the current situation. You can't win. The patient has won by faking a heart attack on a cold winter's night when there is no shelter. And you go through the steps and do what has to be done, but you don't worry or lose any sleep over it, does this make sense?
This patient needs a six pack and a fishing pole. -- James Jakowatz, MD, Surgical Oncology
To me, this quote from my teacher sums up all of end of life care for the patient's highest good: there is a point where further intervention will decrease the quality of life for what little time the patient has left--everything must be done to ensure the patient's comfort and to meet the patient's goals of care.
I want you to think about that as we go through the next few scenarios...
Recently I did major cancer with reconstructive surgery on a patient who was 'lost to follow up'. After the initial abnormal finding on the mammogram and instruction to have a follow-up radiology exam 'just to make sure'--the patient didn't do anything except go from one second opinion to the next, trying to decide what to do.
Cancer growth is described as a 'doubling time'--one abnormal cell takes a certain amount of time to divide into two cells. By the time where it can be detected, it has been present for what could have been a length of time!
Disease is not going to slow down its progression once it gets detected; rather, it is going to pick up steam and accelerate itself in your body whether you choose to act upon the test results or not.
This is difficult and painful for me to say to you.
I know you would like to have time for the emotions to settle after receiving a devastating diagnosis, before you resolve to act. Anyone would like to have unlimited time to search for the best course of action which is right for them...I know this all too well. I've done it myself, and fortunately I got lucky. But I was playing with fire, with my own life, and I was gambling with very high stakes with my delay.
This is where the love and support of family and friends, and if you are alone then the social worker or chaplain--to help you sort things out once the cards have been dealt.
What could have been a twenty-minute operation with nipple sparing turned into a seven-hour ordeal, with much greater risk of anesthesia and surgery, as well as extensive restructuring of the body appearance because of this delay.
If money is a concern talk to a social worker. Most of my patients these days are funded by the county or the state or Medicare...there are options you might not know exist...
Dedicating This To Mommy and Daddy
My father challenged the system in which I work. He had a total fear of the ICU. When I worked at the VA, on ICU, and wasn't allowed to leave the floor, sometimes he would bring me Taco Bell...it took a lot of courage for him to walk the length of the ward to the break room to visit with me. He stared straight ahead, and avoided looking at the rooms on either side of him that were his worst nightmare.
I suppose this only further strengthened his resolve to have 'no heroics' when his pulmonary fibrosis was diagnosed.
Have you ever seen 'air hunger'? Father died of it. After a while even the oxygen doesn't work any more. At the end he was so exhausted he did not have the energy to brush his teeth. Mom had to do it for him.
When I got the call, that he 'wasn't looking so good' and it was time to come to his bedside, the hospice nurse from Kaiser was at my parent's home. To my eyes, I saw her giving him an overdose, and withholding definitive care (intubation of the windpipe, like I do every day). I accused her of all of these things!
My brother--in-law and mom yelled back, and said, 'HE WANTS IT THIS WAY!'
And he died. It took hours. I had to tell mom to give him permission to go. And once the chaplain anointed him with oil, I saw a vision, my clearest and first one of the pearly gates. I saw him cross over...(there is a blog post describing it in detail, around June of 2009 he passed...not sure when I blogged it).
Father said NO! To long-term care in a facility on a ventilator. Father said NO! to being embalmed. Father said I ACCEPT DEATH after a lot of work with his chaplain and hospice team (they call it Palliative Care with his medical system)...
I learned to respect Daddy for the lesson he taught me--on how to 'let go'.
Mom, on the other hand, said, 'I WANT TO LIVE FOR MY FAMILY'. In 1999, December 31, mom had renal failure. She could have died in four days had she rejected dialysis.
She took the dialysis. Then she said, 'NO!' to the support group of dialysis patients. But after a while, she and father decided to go.
Then she said, 'NO!' to the extensive medical testing you need to do to be on the transplant list. She was terrified of having to do the spirometry test. But after a while, she and father decided to complete that last test and be placed on the transplant list. She waited with excitement for the day her new kidney would come! (she didn't want ours, because as she said, 'you girls will need them.')
After time, she said, 'God? I accept this life of dialysis in my heart. I won't fight it any more.'
Two months later she got the call! 'Charlie' the new kidney was hers! She had energy, and a new life! Except for a bunch of pills she had to take, she could travel and enjoy her grandchildren again!
She took care of Anthony for two years while I worked part-time. He was born three years after the transplant.
But the anti-rejection medicines gave mom both diabetes and bladder cancer. It was ADVANCED! She needed life-saving surgery.
During each step of the way, in private, I asked her, 'Mom? Do you really want to go through with this? Is this what YOU want? And not what you think the family expects of you? You let me know, and no matter what, I will explain it to my sisters gently if you just want to stop like dad did.'
She valued my openness and concern. And she told me where all the 'funeral packet' is and how she's planned everything. But for now, she wanted to live, and that was her goal.
It was a very long, drawn out time for her in recovery. But now she is content, and alive, two years later.
So whether it is a YES or a NO, you have the right to decide what is right for YOU, every step of the way, when devastating illness makes itself present in your life...
Dad as a little boy
Here Is The Skinny
From where I work in the O.R., I see a LOT. And there are some things that exist that I call 'mortal wounds'...
- that LAST thing that goes wrong in a patient who has multiple serious medical problems of all organ systems--who was living independently until this seemingly minor 'thing' happens.
- end stage cancer to the point of intestinal blockage in multiple locations with ascites
- tumors everywhere and weight loss to the point of being 'cachectic' (wasting)
- going for anesthesia for something minor when there is sleep apnea and morbid obesity
- any anesthesia when there is pulmonary hypertension
- very extensive surgery in someone who is not in the best of health
The patients basically 'want their old life back' and seek surgical intervention as a drastic means to 'obtain it'...
They and their families are not thinking it through.
There are surgeons who will operate on anyone who has a pulse. Whether it is to do an exciting case, or to 'help', or to make money, there is a lot of pressure not to cancel their case...
In essence, if I have a 'BAD FEELING' about the risk of a poor outcome (death, stroke, etc) but no test results or evidence to 'back it up', I can't cancel the case...but if you look very closely at my face and my eyes, you will see my concern there.
In very brief explanation, for the reasons above, I submit:
- there are too many 'miles on the car' to withstand the anesthesia, surgery, hospitalization and recovery. There is little or no 'physiologic reserve' to help you get through all what it ahead.
- It's a choice of dying with tubes and bags on the stomach or just without--it won't extend life.
- The doubling time has increased the tumor load on the body to where the tumor is taking more of the nutrition than you. At this point we are just 'feeding the cancer' and tube feeding is withheld...
- airway management in anesthesia is a serious risk we don't talk about. If you open your mouth and no one can see your uvula (that thing that dangles down in the back) you better be having your surgery at an experienced center who handles the difficult airway. No one might tell you that you had a significant desaturation after anesthesia was induced and the airway was controlled with the breathing tube because it was difficult to put in place.
- the risks of poor outcome with anesthesia and pulmonary hypertension are about fifty percent where with other diseases it is less than one percent.
- surgery is like running a marathon--the longer it is, the harder it is on your system.
Have The Talk
There are three talks you need to have about the end of life before you EVER mention it with your doctor...
What do YOU want? Do you want to be kept alive? Or allowed a Natural Death? Do you want hospice? Who would you pick to make your medical decisions for you if you can't? How far do you want to extend yourself in treating your ailment? And what 'decision points' will be signs for you that perhaps it is time to change up the plan, and perhaps, suit your goals further, in another direction? (By the way, I strongly suggest doing what works for you in MANY areas of healing, not just one...)
With your family
I have made it know that if I am in a persistent vegetative state I am OKAY with it. I only want my loved ones to be able to see and touch me as they need to, and when God says 'it's time' I am okay to go. In the meantime, I have my Jewish Friends on alert that I want the Torah read to me as much as possible, in Hebrew--because even though I can't understand it, my soul somehow does, and is deeply comforted by hearing it. My stylist Ed is the one who is 'on the hook' for this right now, and has been for over ten years. When Anthony was born, Ed came to the hospital with his little prayer book--and said blessings over the child and me. It meant so very much to us both, that he would do something so kind that no one else would be able to do for us.
This is the most delicate of them all. Because, as we know, we don't have the final say in the outcome. It is important at this point to invite 'Creator' (I call it 'God' out of habit) to help direct your choices for The Highest Good. Case in point, a woman I recently met at a mediumship had a husband die young. He was very sick, and he wanted to suicide. She was very disturbed. She loved him and didn't want him to suffer, but the ways he had in mind were messy and graphic and more than she could accept at the time. A mutual friend found a group, 'EXIT' in their native Switzerland. It helps people in his situation suicide. So he drank something, and she listened to his heart, and fifteen minutes later it stopped and he was dead. she STILL bears the emotional scars from witnessing his suicide, and he left her with three kids to raise all alone...and this was over TEN years ago! So his 'FREEDOM' cost her more SUFFERING... so when it comes to the 'big picture' (read 'karma balances' overall--do you want to owe any in the hereafter?) make sure you get Creator in your court when you can.
There are a lot of blessings at the end of life. Some people spend their energy and purpose in easing the Transition of those who need it the most. It is inspiring to us all.
Aloha and Mahalos,
P.S. for synchronicity--I've had this post rattling around inside for two days--and my friend and Reiki student also published this--and she is thousands of miles away, and we don't really keep in contact much <3 http://thewaytotheway.com/the-cure-for-death/?utm_source=rss&utm_medium=rss&utm_campaign=the-cure-for-death
(Dis-Ease is energy imbalance, disharmony in the energy body that develops into physical illness if left uncorrected)