Sunday, February 21, 2016

Assisted Suicide or Aid in Dying and Why

Barry Beall, strong and athletic
Aid in Dying  is not assisted suicide.

Every time I see a discussion or article on the subject of human beings having a choice in how they die, I think of two people: My husband and my aunt.

I remember standing beside my aunt along with my sisters and my sister in law, holding the hand of my 98 year old favorite aunt. She had developed pneumonia and was admitted to the hospital. When her breathing became difficult, she was placed on a respirator. After a day or two, doctors declared it was time to remove the respirator. It wasn't long before the elderly lady began laboring to breathe again. She  was asked if she wanted to go back on the respirator and she said no. I don't think she had any fear of dying and said to me that she had lived out her life span. But she didn't choose to die struggling in panic with every breath. I will never forget her pleading eyes and her whisper. "Help me. Help me." 

I am sure she was begging for someone to put her out of her misery. I could not look her in the eye and I couldn't speak because of the tears and the lump in my throat. I prayed that she would die soon. She didn't deserve to suffer, this kind and beautiful soul, but she laid on that white pristine bed as her lungs filled. If she had been in a river and begging for help, someone would have come to her rescue. But no one helped her in that hospital. 

If we had an animal on the farm that was injured and in pain and if that animal could not be put back on his feet, he was "put down." He was put out of his pain because the kind thing was to stop his suffering. My aunt had no choice in how she was to die. She drowned in her own fluids, slowly, as her loved ones watched the monitor hoping each breath would be her last.

There are things worse than death and only if you watch someone suffer unceasingly, or if you are the one suffering, can you really understand how important it is to have the choice of dying with dignity and have aid in dying peacefully.  

My husband of 45 years had lived a good and fulfilling life when he was diagnosed with B-Cell Stage 4 Lymphoma. It was found when his  leg became so painful his doctor did an MRI and found a tumor just above his knee. A biopsy at Emory Hospital in Atlanta led to a diagnosis. He handled radiation and chemo like a champ. He drove himself to his treatments and believed his oncologist who said if you have to have cancer, this is the best kind to have.

After six months of treatment and enduring constant pain, he was told he did not have to come back to  see his doctor for three months. The PET scan showed the tumor 98 percent gone. We were told the cancer had not spread. But something was not right. The swelling in the leg was severe, and the pain grew worse and worse. The oncologist prescribed Oxycodone which barely knocked the edge off the pain. After our pharmacist called his office and said Barry needed better pain management, the doctor prescribed morphine. Still, he was not  told to come in and no one in the office seemed to think his condition was unusual.

Thinking  his cancer  was gone, we searched for other causes for the pain and swelling. We found a lymphedema therapist who said she could help reduce the swelling. She had a good track record. His pain grew worse and his leg soon broke out in huge sores that looked like bad burns. 

Barry was in bed more than he was out of  it and said sleep brought him the only respite. One day he told me he wished he could just go to sleep and not wake up. Watching him suffer and having no way to stop it broke my heart. He had to make the pain medicine last so he could not take it more often than prescribed. 

When we finally saw his doctor, the man was horrified when he saw Barry's leg. "My God, Man, what has happened to you?"

I wanted to scream and say, "I thought you  were going to 'manage' this 

From that day until two months later, my husband suffered the worst kind of pain. 
I had to beg doctors at Emory to admit him. He had to have some pain relief. Our local doctor was not affiliated with Emory so he and the doctors there didn't communicate with each other.

That was when I learned of the competition between medical companies. The patient doesn't matter. Emory doctors would not call the local doctor who was with Georgia Cancer Center to discuss Barry's past treatment. I called his local doctor who said, "If they want to call me, I'll talk to them."

I cried in frustration and felt like a lamb being led to slaughter. So much for our wonderful medical system, the so-called best in the world. Capitalism at its worst. These two medical businesses were no different than Ford Motor Company and General Motors in competition with each other. 

It was apparent to me that the doctors at Emory considered him hopeless and were cold and as impersonal as they could possibly be. One even sneered at me when I pulled out my daily journal of Barry's care and treatment that I had kept meticulously trying to be sure we didn't miss anything or forget anything important.

Once in the hospital at Crawford-Long, a hospital owned by the Emory conglomerate, the  nurses were fantastic, but doctors spent two weeks trying to diagnose what was going on with Barry's leg. At first Infectious Disease was called in. He was bombarded with antibiotics for every disease they could imagine. I knew  it was the cancer. Why didn't they  know? Finally a dermatologist made the diagnosis. It was B-Cell Lymphoma. 

Meantime, wound care came in and began treating his leg as if he had third degree burns. Sadly, only they really knew how to clean, medicate and bandage his leg from knee to ankle. The nurses on the floor had no experience and found it hard to do. Some were heavy-handed and some could not bear to hurt him while they pulled off skin and flesh, spread a white cream over the raw muscles and tendons, and wrapped his leg again. Eventually, he asked the nurses to  let me take care of  his leg, and then the nurses watched as I carefully removed the bandage and cleaned his leg. They stood by and handed me what I needed. 

Days turned into weeks. Doctors came and went and I didn't like any of them. Only one woman physician seemed to have a heart. She apologized one evening because Barry had been in so much pain that day. She said it was her fault and it wouldn't happen again. But it did. 

All during these sessions, twice a day, he suffered. But he was a trouper and sang hymns to keep himself from screaming or crying.  

He was on heavy morphine every four hours, but it seemed the cleaning and dressing period came just before he got his injection or just as the medication was wearing off, the break through pain that all cancer patients know so well.

For more than a month, Barry stayed doped up and tried not to complain. 
He didn't want me to know how much he hurt. His condition only got worse and when it was clear to  the doctors that our choice was either more chemo that would likely cause heart failure, I was told it might be best to check into hospice. He had one twenty-four-hour chemo treatment that greatly weakened his heart. That resulted in his having two battles to fight - heart disease and cancer.

At that point, I knew what he wanted. We had talked about this possibility, and he wanted  me to make the  decision. If there had been an Aid in Dying Act in Georgia, I would have brought him home where he wanted to be, where he could see his dog and lie in his own bed. He would have had the choice of taking prescription medicines that would help him go to sleep and not wake up - just as he had wanted.

We  did not have that choice. We could not stop his suffering because the doctors in the hospital would not or could not prescribe enough of what was needed to stop his pain. By this time his dignity had been lost. My proud husband could not bathe himself, he could not walk or stand without help. He could not go into the bathroom. This was a man who had always been athletic. He played tennis when he was younger and played golf until cancer struck him down like a blow to the head. When we first married he taught me to ride dirt bikes and I taught him to ride horses. He was  physically strong until this disease took everything from him.

He hated losing his  quality of life, being cared for like he was a baby, and he knew he was not going to  get well. But he was left to  suffer. I chose a Hospice center near the hospital. I insisted to the doctor that they do everything possible to stop his pain. That was my only request. They stopped dressing the leg. He developed a fever which meant he had an infection. If he continued to live, the doctor said he would suffer more from the infection, probably MRSA, which attacks the most vulnerable. Barry was certainly vulnerable and a likely candidate for this disease that is resistant to antibiotics. 

I could not bear for him to feel even more pain. I wanted him pain free even if it meant complete sedation. I just wanted him to have peace. The staff did what I asked. I will always be grateful to them.

When you go through something like this and see that death is not to be feared, but welcomed, you advocate for Aid in Dying. It is not assisted suicide. The patient would rather live. Aid in dying is for a terminally ill person to hasten the end instead of suffering a long drawn-out dying process. It relieves the  patient and the family from traumatic suffering. 

When I talk with older people about death, they almost all say, "It is not the dying I fear, but the process of dying." I understand. 

That process and the suffering that often goes with it, like that of my dear aunt, is what we all fear. If palliative care is the best alternative, I haven't seen it. Even hospice care at home is not the answer for a suffering patient and his family. The suffering continues day and night when the  pain medicine no longer works. Family members often don't know what to do. They give the oral drugs as they are told. They are not trained in pain management, and the nurses only come when they are needed. 

Some private care hospice workers are good and some are not so good. A friend of mine had home hospice care for her husband who had an inoperable brain tumor. His pain became so intense she could not keep him in bed. But the local hospice doctor would not increase his pain medicine. One day she sat on the floor with him after he fell and she could not get him up. She said she pulled a blanket over them both and she held him as hours passed before anyone came to help her.


Far Side of Fifty said...

This is a really hard subject. Pain is a terrible monster and our Doctors need to be pain specialists or have one on their team taking care of people. Some times the medical establishment is in the dark ages.
We both have advanced care directives that spell it out and I hope our wishes are followed. :)

DJan said...

Here in Washington state we have Death With Dignity available to people like your husband. And our Hospice centers are incredibly well done. I'm so sorry for what Barry went through, and I have often wondered why we don't allow Aid in Dying everywhere. Why are we so cruel? :-(

Glenda Council Beall said...

Far Side, thanks for stopping by. The medical establishment doesn't work for most of us, I am sure. I had a friend who had surgery on his esophagus for cancer. His doctor went on vacation right after the surgery and left his team to finish up. For a week my friend complained that he felt he had something in his throat. He was told that was just from the surgery. When his doctor came back and listened to my friend's complaint, he checked out the throat. He pulled out this long thing that was used to hold my friend's throat open while the surgery was performed! I feel you live longer if you can stay away from hospitals and most doctors.

Glenda Council Beall said...

Why are we so cruel? That is so true, DJan. I like that Washington has the Death With Dignity law. I understand that although many people have it available they don't use it in the end. But they have the opportunity to make that choice. Yes, we should have the choice to do what we want with our bodies and our lives. Especially when one is in such pain.

Abbie Taylor said...

During the last three days of Bill's life, when his breathing became labored, he was given oxygen. That seemed to help. He didn't seem to be drowning in his own fluids, but he still struggled, I think, because although he wanted to be at peace, he didn't want to leave me. If it were legal and possible, I would have wished for him to have help in dying. Thank you for sharing your story..

Maren O. Mitchell said...

Glenda, your writing on assisted dying is riveting. Probably the fact that I knew Barry increased the intensity. When I had finished reading I was sure I had not breathed while reading. I remember your emails to me about your great stress and confusion and anger, but I didn't know all that you tell in this posting. This is important experience and information for anyone. Thank you for sharing.

Glenda Beall said...

Abbie, thank you for your comment. When we love someone, we don't want them to suffer when we know they can't get well. With Bill and with Barry, we knew. It is always hard to accept death, but if I knew I could go peacefully with the aid of a physician, I would certainly choose that over suffering like Barry did.

Glenda Council Beall said...

Maren, thank you for reading and for your compliment to my writing. I hope my experience, as horrible as it was, can help others. Sadly, we often have no idea how things in the medical world work until we are face to face with it. There was one doctor at Emory that we liked. His name is Munson or Monson, I'm not sure. But he diagnosed Barry's lymphoma. He was the one who finally admitted Barry to Crawford-Long where we could get some kind of pain management. But he could not be our doctor. Lymphoma treatment was not his field. He offered to remove Barry's leg because it was so horrible, but Lymphoma is a blood cancer and taking off the leg would not cure anything. In fact, within days his entire body was swollen and cancer-ridden.

Donna Brummert said...

I am so sorry for you and your husbands suffering. I saw on 60 minutes this evening about this very subject. I totally agree with you.

May God bless your husband, Barry in heaven, and you for all that this entailed.

Donna Brummert

Glenda Beall said...

Thank you so much for your comment here. More and more this subject is being discussed, especially since Washington state and Oregon and others are passing laws that favor Dignity in Death and Aid in Dying. I realized that, even in Hospice care, the doctor could not make a suggestion that might hasten Barry's death even though we all knew he was suffering and could not get well. I had to insist that I wanted him sedated so he would not suffer pain. As I had that right, they obliged me. I will always be grateful to them at that Hospice center.