Questioning Our Health Care System And How We Treat The Dying

Hope you enjoy the new picture of me on my front porch.

How are all of you dealing with the emotional intensity of the double eclipses this month of March? It has been rough for everyone and it is not over yet.

The first one was on the 3rd and it was a full moon eclipse in Pisces. That creates a great deal of emotional chaos for everyone. As you can see from my previous blog, this pattern opened a doorway for my father to leave the planet on March 5th. I hope you have read that blog as it is a tribute to him.

There is another eclipse on the 19h of March so the emotions continue unabated for the entire month. Take deep breaths and know that nothing will feel simple this month.

Get ready because this blog is long and some of you may not want to plod through this extremely long documentation of my fathers chaotic dying process.

I know that talking about dying triggers many people but if we don’t talk about it and take a look now, when we get there the system may still be in disarray or even worse. I think we need to become less superstitious and be brutally honest with ourselves and what it is to die.

So this is my father’s story. Hopefully it will educate all of you and help you help others in this process.

Thank you for indulging me in this emotional moment of my life.

What this amazing process has done for me is to get inspired to make our legislators more aware of the needless suffering that is happening to those who are in the dying process.

I think that every legislator should spend one hour in a hospice center and sit with a dying person.

While we are living many of us don’t really consider the process of dying and going to actively find out about it seems morbid or something to be avoided at all cost. We almost feel that to go seeking the process of death might attract it to us. We are almost superstitious about it.

But as all of us baby boomers get older this issue really needs to be addressed. Most of the baby boomers have been very active in their lives and are probably healthier than our grandparent’s generation. We have the potential to live longer and so the process of dying becomes an issue that needs to be readdressed from a more modern perspective.

I find it fascinating that based on the laws that we have now, a woman can choose whether to have a baby or to have an abortion. The laws presently state that a woman has the right to make decisions about her own body. Yet in the death process we do not have laws that allow us to make decisions about our death process and the release of our physical body.

I am a person who would prefer to attempt to stay as present as I could throughout the death process, as I believe that the more conscious you are in your death process the more you can work through the karma and shift the energy towards the positive for the next lifetime. I believe that through meditation you can teach yourself to learn to navigate the unconscious realms of death and not be afraid as you loose touch with your body, attachments, ego, and identity. Yet I know this is difficult and when great pain is added into the mixture staying conscious in dying would become tremendously hard.

However, watching my father go through the extreme pain and suffering of his death forced me to address alternative perspectives and needs. It is time we look at a bigger picture as we have tools to ease pain and suffering and every American knows that they love their freedom. There is freedoms that we have in life but what about freedoms in death.

Let me back up a bit and explain.

My father had his first heart attack at 52 years old. He was a healthy, non-smoker, who ran 6 miles a day. But genetics are genetics and sometimes you don’t get to choose. So at 52 he had triple bypass surgery. He changed his diet and had another heart attack at 58 years old. They did an angioplasty to open up the arteries and this process continued five more times. He had 20 or so skin cancers removed, cataract surgery on both eyes, three crushed vertebrae in his spine from slipping back against the crankshaft of a boat, broke his spine from coughing because of finding out he had been exposed to Tuberculosis from one of his travels, Tuberculosis, osteoporosis, another spine fracture from moving a table when my grandfather needed to move to a nursing home, placement of a pacemaker, and then recently another spinal fracture from picking up a television.

So as he went into the hospital to get surgery to fix his deviated septum and a pillar procedure (procedure to place plastic tools to hold up the tissue in the neck to assist in breathing when you have sleep apnea) he had obviously been through a lot of very difficult procedures and that didn’t include all the heart episodes which exposed him to anesthetics that affect the brain, including a anesthetic procedure to stop my father’s heart then to shock it to make it go back into a consistent rhythm (which failed).

This is where I get stressed about our medical system and how procedures are not always followed. My parents asked the nose surgeon to talk to the cardiologist to see if my fathers, heart and brain could handle another procedure as intense as this one.

Just in case anyone wants to have the pillar procedure done, according to the ICU nurse who had this procedure also, it is one of the most painful surgeries to get through. The nose surgery with it is added strain.

When my father went into this surgery he thought that the cardiologist must have approved of the procedure as they were going through with it. After the fact we were informed that the cardiologist had not been contacted and was appalled to find out that this other doctor had gone ahead with my fathers cardiac history. The cardiologist said he would have never approved of this procedure for my father.

So in the middle of the procedure he had a major heart attack because in order to do the surgery he needed to go off his blood thinners and medications so he would not bleed to death on the operating table (also a bad idea with the fact that my father had a partially blocked right coronary artery).

So now, he is being whisked to another hospital for the heart where they put two more stints into the right coronary artery, which they find to be 95% blocked. There is also a bundle of arteries above this artery that are also blocked and this makes my fathers situation dire as they cannot do bypass surgery and take him off the blood thinners to do the surgery because he will bleed to death. If they do nothing he will die eventually as the artery will completely close up and the heart will no longer work effectively.

The diagnosis was end stage coronary artery disease. Inoperable.

But there was more. The doctors basically told us that the only option was to keep him as comfortable as possible and as calm as possible. They wanted to keep him on his heart medications but they could not tell us how long he had.

So my mother takes him home and after a few days he is to get the packing out of his nose from the surgery. They take it out and my mother takes him home again. Within a few hours he begins bleeding profusely out his nose. Clots as long and thick as your fingers were pouring out his nose.

My mother puts him in the car and rushes him back to the nose doctor where they tell us that they cannot treat his nosebleed there. They do not do such things that he has to go back to the hospital. So my much-stressed mother has to drive to another hospital where they have to get his bleeding under control. But his is more complicated by the fact that my father is on anti-coagulants for his heart disease. He now had more multiple heart events as his heart continues to break down and not be able to deal with all the trauma.

After hours the bleeding is under control. But my father is not getting enough oxygen as he is sleeping because he has sleep apnea already and not he has packing up his nose and his sleep becomes more strained and his mental state begins deteriorating further.

So we are in the ICU and he is being taken care of but suddenly he exhibits Sundowners Syndrome. This is a pattern for Alzheimer’s patients where they sleep during the day and wake up at night and get all confused and don’t know where they are. This is because the brain is dying and it causes great agitation and fear. Not a good symptom for a man who has end stage heart disease and needs to stay calm.

So in the evenings, we could not keep him in a bed. In the ICU the nurses obviously were busy and had trouble keeping an eye on him. So whenever our family left to go get something to eat in the cafeteria they would restrain him and tie him to the bed with a straight jacket!!!

No kidding! The first time in happened we were appalled. He was so frightened and confused and believed that the nurses were trying to kill him. He resisted so much they the restraint broke his ribs. This is because he had advanced osteoporosis and a bad back.

Now, he is in tremendous pain, agony! He has pain from the bone breaks, pain from his back, pain from the angina from his heart not getting enough oxygen and slowly dying, pain from his nose and pillar procedure, and fear from the Sundowners caused by the Alzheimer’s.

The ICU nurses kept referring to him as end stage Alzheimer’s. We were shocked. He had not exhibited these symptoms before. We wondered how you could have a perfectly normal person and after a surgery, heart attack, and stints put in suddenly have Alzheimer’s.

My father had shown some mental decline over the past few years but nothing to this extent. He was having trouble with math and my mother had taken over the finances but nothing to this extreme.

Later, in the great hospice called, Casa de la Luz, someone finally explained it to us. They said that my fathers’ arrhythmia that began two years ago caused a vascular induced Alzheimer’s condition. This meant that the heart was beating irregularly and that caused the blood flow to not work properly. When blood flow was inadequate for the brain, the brain began to kill the parts that were less important, such as math. The personality fought to stay intact so on an outward level he seemed fine. But his brain was slowly dying.

When an added stressor such as: more anesthesia from the nose and pillar surgery, the pain trauma as associated with those procedures, the heart attack and more surgery to put in the stints, and the broken ribs, it was too much for the brain and the blood flow became inadequate to support many of the brains functions and systems.

But at the time we did not understand this completely. We decided that we could not leave him alone at all. So someone needed to be with him at all times.

My sister who is the doctor took the night shift and began to notice that they medications that he was being given were making him hallucinate. She spoke to the doctor and asked that he be taken off meds such as: Ambian, Morphine, Adivan, and other medications in this category. He seemed to get significantly worse on these.

The doctor agreed but never changed the orders in the paper work for the nurses so every time he got agitated they kept giving him more and more of the medications that did not work for him. It was infuriating for my sister. She was appalled that any hospital would be run this way. If she worked this way she would have lost her license.

Also in the middle of the night the nurses would come in to do different procedures. My sister would as who gave the order? They didn’t know. She would to and look to see if there had been a order given to do these procedures and there wasn’t. It seemed to us the hospital was just adding expenses to cushion the bill in their favor as my father had double insurances. This happened repeatedly. If someone was not there they would try to do something that was not approved of.

One night my father was having chest pain and the doctor ask for an EEG to be taken. The machine was new and no nurse knew how to work the machine! This was in the ICU, a place that you certainly needed to know how to work this machine and would probably need to use it often. No one had been trained.

They asked my sister the doctor how to work it and she said that she was the family member of a patient and it was inappropriate for her to make such decisions. The finally looked in the book and figured it out and they did three EEGs but then wanted my sister to read them.

She said, “Where is the doctor that is on call for the ICU.”

They said he was at home asleep.

She was shocked. It is unheard of for a ICU to not have a doctor right on call. She wanted them to call him but they didn’t want to bother him! They asked her if she could just read them. She again declined saying that she was not a cardiologist she was a pediatrician. She was not qualified to read them.

Then they wanted to keep the good one and throw away the bad ones. Again she was shocked! You keep all the tests and place them in the chart for insurance purposes as they are not qualified to know which one is good or not good. It was unbelievable to her!

Over a period of 3 days she was finally able to get the proper medications for my father that did not effect his mind in a more negative way and he seemed to calm down and become more manageable.

Yet he wanted to go home. Hospitals are very noisy and nurses are coming in constantly and machines are beeping and talking.

We knew that he had inoperable heart disease but we thought that if we put him in a known and comfortable environment he would be better and possibly live longer.

The family decided on a DNR, a Do Not Resuscitate form, as there was nothing anyone could do anyway. So we brought him home.

That lasted one day. At least he hand one comfortable day at home. He was so happy to get home. We made great meals and he seemed to eat. Not as much as normal but at least he was eating. He got three good meals in and almost 24 hours after coming home he had another heart attack.

He asked for his nitro pills. I gave him one every five minutes, until we got to the third pill. As he took the third pill he said, “Okay I’m in trouble now! That is the last one I can take!”

After another five minutes, he was still in pain so I asked him what he wanted me to do.

He said, “Call 911!”.

So we did and the EMTs came and off he went again to the hospital. They asked us what hospital we wanted him taken to and we said the Tucson Heart Hospital.

Off they went and Mother and I got dressed and went out the door to the Heart Hospital.

We get there and my father is not there. The hospital has no record of him there.

Now we are in a panic. Did he die on the way?

We call the other hospital. He is not there either. We call the one he was just at the day before. He is not there either. So I call the EMTs and they said they took him to the hospital he just came from.

So, a little heads up for all of you out there. I have now found out that it is illegal for the EMTs to take you to a hospital other than the one you requested. We also found out that the EMTs did call the hospital but that hospital rejected him because he had end stage heart disease! Can you believe that a Heart Hospital would reject an end stage heart patient with double insurances! It was unbelievable. All of that is illegal to do.

Dad didn’t want to go to that previous hospital because they kept giving him the wrong medications that were making him crazy and now he is back and that much hated hospital.

So now, we are back in the Emergency room and finally find him and he was worried and confused as to where we were. I tried to explain that the hospitals didn’t have him registered anywhere and we had been off to the wrong hospital.

They put him back into the ICU and at least now we have proper medications. He has the DNR and the nurses know it but everyone is trying to make him comfortable and calm. I loved the nurse in the ICU that night. She was calm and didn’t go in and out. I asked her if she would let him wander around with me in the halls as it helped him stay calm. That required him to be detached from the machines. She was okay with that as long as I was with him. He had a DNR anyway so why did he need the machines all hooked up.

So we wandered around the hospital and had some great deep conversations as I wrote in my previous blog. He chatted with my dead Uncle Charles who I later found out had died in a similar way to my father. I watched him review his life and play out the many good and happy times of his life. He seemed surrounded by people and I could feel all the spirits around. I told Uncle Charles that I knew that he was there and I could feel his hands on either side of my face. It was so cool!

But again my father wanted to come home. So we signed up for Hospice and got all the things set up for him to come home. We got a medical bed, oxygen machine, oral medications, information and we waited for the transportation to bring my father from the hospital to the house.

So my mom is at the home finishing setting everything up and I am with my father to make the journey to the house.

He is in terrible white-knuckled pain. Agony! Like nothing I have ever seen! His pain had been bad but it got worse. What we didn’t realize is that when we signed up for hospice the hospital stopped giving him his heart medication and was only giving him his pain medications.

Twelve hours later the cardiologist was appalled. He had never told the hospital to stop giving my father his heart medications. He explained that the heart medications would not keep him alive longer but they would keep his pain level more under control.

The hospice told us to only give the heart medications as he was dying anyway. This was completely the wrong thing to do.

So as he is on the elevator, his pain begins escalating. During the ride I talked calmly to him and sang songs to him. But the pain would grab him like a sharp knife being plunged into his chest.

We get him home and the hospice nurse tells us that we need to just put him in the bed. Well he won’t stay in the bed. He is panicked and in agony. So she says to put the mattress on the floor. We do that but he won’t stay on the mattress on the floor. She tells us to go get diapers and that they are easy to put on. Then she tells us to crush up the pills and put them in jelly, baby Benadryl, honey, pudding or the like and the pills will go down slowly.

Well, when a person is in this kind of writhing pain with their knees up to their chest and white knuckled and curled into a ball, let me tell you that all of that was impossible.

I go and get the diapers, Benedryl. We cannot get the diapers on him. We cannot keep any pills down him and the pain continues to escalate. We try pudding, chocolate ice cream, Benedryl, honey, jam, everything we can think of.

I called nursing companies to see if in the middle of the night we could get a full time nurse to help us. No luck. We called the hospice. They never called us back. Ever! Shocking isn’t it!

For eight hours my dear sweet father who designed the laser guided missiles that have saved so many American lives, is writhing on the floor in terrible agonizing pain, screaming, “Too Much! Too Much!”

It was pain way beyond anything pills could handle. In the hospital they were using I.V.s to keep him out of pain. I later learned that as you die you cannot digest as easily through the gut as blood flow decreases when you are in terrible pain or compromised heart function. No one told us. He was also not supposed to go off the heart medications and the hospice told us otherwise. Between his angina, ribs, and broken spine he was in the most excruciating pain. At 3 in the morning my mother and I finally called 911 to take him back to the hospital for pain management. My sister had recommended this and she had called the Emergency Doctor on call at the hospital to explain and make sure everyone was on the same page.

However, when the 911 EMT’s came we did not have a copy of the DNR. The hospice forgot to give us a copy of it. Another huge mistake! By now the EMTs were familiar with us and what was going on. They explained that if my father coded on the ride to the hospital they were obligated to resuscitate him. Ugh!

We tried to call the hospice. No one answered. We called the hospital because they had a DNR at the hospital. They had no one to find it as the filing people didn’t get there until the next morning at 8 AM.

The EMTs talked to my sister and the ER Doctor at the hospital and decided to trust us. Yea!

We go back to the hated hospital for pain management again.

After a few hours, the cardiologist show back up and are shocked and dismayed at all we have been through. I think because of fear for a lawsuit, they gave us the best hospice in the state, Casa de la Luz. Thank God!!!

We find out that my father should only be in an In Patient, Pain Management Hospice Residence. And there is only one in the state of Arizona, Casa de la Luz!

Again, I was shocked that in a place where many are older and retired that not only is there such poor care for the elderly, but there are also not appropriate facilities for the dying. Such a situation is intolerable!

By now we are so careful that we are not going to move him without absolutely being sure. My sister the doctor is on the phone with the cardiologist and Emergency room doctor, the staff of the hospice, etc. After much talking and checking of things out we make the decision to move him again. By now he has been to 5 hospitals and hopefully this is the last move he will make.

He is relatively lucid and we have the doctor explain it to him again. I told him that he had a right to choose. The doctors explained for the second time at least, that he had end stage coronary artery disease that was inoperable and they were suggesting that we move him to a pain management hospice.

We go off to the new place, which is ideal, and dad shows up. He is confused and the transport people tell him, “See! Here is your wife and daughter. We told you they would be here.”

Dad sees us and says, “Where am I?”

I told him, “Welcome to the Taj Mahal!”

He was not excited but smiled nonetheless. He wanted to go home and I said that we could not manage his pain at home as this was going to be where he needed to stay until he got more stable. He was not thrilled.

But we finally felt as if he was in a safe place and mother and I went home to get our first full nights sleep in a long time.

But watching someone continue to degrade is difficult under the most beautiful of places and the kindest of people. In the process of the hospital, we had some amazing nurses and some of the worst imaginable. We had a tremendous lack of doctors and some like the nose surgeon who never even called and checked on how my father was. He also never checked with the cardiologist to see if my father was capable of having this surgery.

Where we had wonderful care and nurses they were the best. But the extreme between good and bad was terrible.

The hospice, Casa de la Luz is a non-profit organization on top of it all and they gave better care then the hospital.

My father continued to deteriorate and then would seem to rally. We watched him review his life some more but at least now he was comfortable.

Two days before he died he had about 2 hours of lucidity. He asked us what had happened and we went through it all again. He was shocked. We told him the truth that he was dying and he said, “I don’t know what I would have done without you girls!” And he meant it. It felt good that some part of him understood what had been going on.

But because he suddenly seemed to rally the doctor at Casa de la Luz said we might have to move him again. We were shocked! It seems you need to die in a certain number of days for Medicare. How insane is that! If he did not continue to decline then he would have to be moved to a nursing home. It was unbelievable.

So now we are out the door to look at another nursing home because all the nursing homes in Tucson are full! There are not beds and there is only one that could accommodate my fathers’ health conditions and needs. We speak to the wonderful woman and she seems to agree that my father is not well enough to be moved away from Casa de la Luz. She says she will speak to the doctor.

So the following day my father seems to have taken a slight turn for the worse and that in a weird way relieves us that maybe they will not move him. I need to leave to go home to work but I have this feeling that when I leave my father will die.

I get on the plane and when I land in Salt Lake City, my mother calls and tells me that my father has gone into a coma. By 11:50 the next morning my sweet father finally dies and can be at peace.

I am writing this not to be vindictive but to make others aware of the situations that the elderly are facing and how poorly some hospitals are being run.

1. ICU’s should have laws that require a doctor to be on the hospital premises.
2. Families of patients should be informed about hospice procedure and protocols for proper medicines and help for families. As well as be required to have DNR’s given to them when they leave the hospital.
3. Hospital staff should be required to know how to run new equipment.
4. Hospital staff should keep all EEGS in the record of the patient.
5. Someone should be on staff to read EEGs in an ICU.
6. Laws should be in place that prevent hospitals from cushioning their bills by ordering exams that are useless and not required by the doctor. If a doctor has not ordered it, it should not be done.
7. The elderly should have a right to decide how to die. They should not be put through all this trauma. We treat animals more humanely then I have seen my father treated. If you know that you are dying and three doctors agree that you are terminal, inoperable, etc, we should be able to choose how and when we go rather then being put through all this expensive medical treatment that is costing taxpayers and our government a tremendous amount of money. Not to mention all the pain, and suffering. If I can choose to terminate a child I should be able to decide when and how I die. Death does not have to be this painful. Hopefully my death will be quick and painless but according to the hospice people this experience is more the norm. That is unacceptable. 80% of you are going to go through something similar. It is time for change. Get out of your old antiquated religious beliefs and begin to address the cost and suffering of the elderly. They are a large group and we are the baby boomers. We will make a change.