Allow Natural Death

Archive for August, 2010

Mr. Norman’s Story

Mr. Norman was 28 when he inherited the family farm.  In truth, he had always felt responsible for the place and all it asked of him. He felt blessed that one of his two sons had decided to stay and work the farm with him.  He felt blessed that at seventy eight years old, he was still able to split a cord of wood in a day.
Each time he saw his doctor, he was reminded that his blood tests showed his kidneys weren’t working as they should…. and so he was not surprised when his doctor said he needed to think about starting dialysis treatments. If he agreed to dialysis, he knew he would have to stop everything for three days of his week to go and sit while the dialysis machine cleaned his blood. He wasn’t a man who sat still easily. He really believed that this kidney failure was just part of getting old. He believed that “when your body doesn’t work anymore you shouldn’t rely on machines to keep you alive”. For Mr. Norman, death was a natural part of life.
His family had their own ideas of what he should do. And when the time came, he gave in to their pleading and began dialysis.
He was seventy eight years old and he still felt alright….just a little slower than he used to be…. until he began to have pain in his chest. The first time it happened he was able to ignore it ….but he couldn’t ignore the fact of not being able to breathe. He was rushed to the hospital and rushed through some tests and rushed into surgery to fix his broken heart. The whole hospitalization was a blur. They told him he needed to get his strength back before he could come home so he was sent for rehabilitation.

 He no longer would describe himself as feeling fine. He had pain in his back. The nurses gave him pain medicine, but his family complained that it made him too sleepy. So he began to say no to the pain medicine. And then he stopped walking since that made his back pain worse. He started asking for the pain medication again and didn’t care that it made him sleepy….he didn’t feel like doing anything else anyway.
Mr. Norman’s rehabilitation was at a standstill and after three weeks there he was returned to the hospital because he was too tired to participate in daily exercises, and he complained of constant back pain.

Upon his return to the hospital, it seemed that all Mr. Norman’s systems were failing but one….he remained alert and able to realize the many ways that he was suffering.
He saw the doctors who admitted him…and they were many,
he saw the heart doctors who ordered some tests and said that his heart looked better than it did before they operated on him.
He saw doctors who looked at his black toes and said maybe they would have to amputate them “at some point in the future”.
He saw the dialysis doctors who said that dialysis was going well.
A nurse came to peer at his chest where they had operated on his heart. It  had never healed and now there was a hole there with a bandage on it.
He saw the doctors who ordered a lot of tests on his stomach to see why he wasn’t eating .  He usually felt so sick that he didn’t want to eat. Often when he did eat – it didn’t stay down anyway. Sometimes he couldn’t eat because he felt so bad and sometimes he couldn’t eat because they wouldn’t let him when he was having the tests. He was losing weight and he knew they were concerned about it since they woke him up at 4:30am every morning to weigh him with a big sling that lifted him up off the bed. He was used to getting up early, but he began to wish that they would just let him rest.

And all the while the pain continued…and the medicine really wasn’t helping like it used to. He kept asking for more even though he knew it would put him to sleep ….that’s what he wanted. He couldn’t get up to the bathroom anymore and that was actually the worst part of all of this….he had to wear a diaper just like a baby.
Every two hours the aides came to move him. It took three people to roll him from one side to the other. They told him those were the rules. They had to do it. But he could tell that they didn’t really want to and the way they moved him, let him know that sometimes they were in a big hurry.  Then just when he was going to sleep they would come and roll him the other way….and two hours later…. again the rolling …
and on and on that went until he started to tell them to go away. Some of them listened and some of them didn’t. They said it was to prevent bedsores, but he knew he already had sores on his heels.
He had a tube in his arm they called a “PICC” line….it went into his vein and it would buzz a lot too whenever he bent his arm the wrong way. Sometimes it would make the nurse come running and sometimes it seemed to be a long, long time before someone came to make the buzzing  stop.
If he had the energy to get angry he would have thrown it through the window long ago. And always the blood tests…if they weren’t sticking his finger for his sugar they were taking tubes of it to look for one thing or another.  They decided he wasn’t eating enough so they took him to the operating room one day and put a tube into his stomach so they could put the food right into him. …another machine he was connected to and another machine to make noise.

Soon after the tube went in his stomach, he started having diarrhea all the time. Constantly really, and it started to burn a hole right through the skin on his bottom. Now that was another thing to hurt him. And another thing for the nurses and the aids to fuss over him about. He really did see more of them than he wanted to. And not so much of his family. They called sometimes and someone would hold the phone up to his ear because he didn’t have the strength for that anymore. They had no idea what his life had become.
But all the doctors had ideas about what they could do next and so he listened when his family said “come on Dad…hold on a little longer and things will get better”. He didn’t see them very much since they had work to do on the farm. When they did come he could tell that he must look bad from the looks on their faces even though he hadn’t looked in a mirror in weeks. They had hope…  but HE knew he was dying…and he hoped it was soon.

And so he endured the poking and pushing
and pain and noise
and fear
and loneliness
and boredom
and the many indignities that his life had become.
He could not think of one thing that still made him feel good. But sleep at least was an escape until he was awakened again for more of the poking
and prodding
and pain and…
you know the rest.

One day Mr. Norman seemed to his nurses and aides to be confused …he didn’t know where he was and he kept yelling, “help, help”. He kept yelling when they went to him and talked quietly to try and calm him. They gave him some medicine to calm him but soon he would begin to yell again and then he began to pull on the tubes that he found attached to his body. They wrapped  his arm to cover that tube and tucked the blankets snuggly around him so he couldn’t pull on the tube going into his stomach.  They tied big  mittens on his hands. But none of these things really worked… and he kept trying to pull on the tubes. The nurses were wondering if maybe he wasn’t trying to tell them something. But it was really too late because now he was judged to be not in his right mind. So they tied his hands down so that he couldn’t reach the tubes that were keeping him alive.
He coughed whenever he ate or drank so they said he shouldn’t eat or drink anymore lest he choke. His mouth was so dry that it hurt him to move his lips.
And so…
The tube feedings and the diarrhea continued.
The three times a week dialysis continued.
The sticks for getting blood continued.
The noise of the machines continued.
The rolling and pushing every two hours continued.
The changing of the bandages continued.
The constant parade of people in and out of his room continued.
And the pain and the loneliness and the indignities continued.

When Mr. Norman had been in the hospital for two months, his family was asked to come in to speak with the doctors. They talked about all that had happened to Mr. Norman. They reviewed all the treatments that hadn’t work. They asked his family what he would have wanted because now he was unable to speak for himself.  Mr. Norman’s son told them that his dad always said that dying was a part of life and that he wanted to go naturally. He also said he wanted to die at home with his family all around him.
One of the doctors suggested that treatment be continued for just one more week to see if any improvement could be seen. The family agreed… and so…
the tube feeds and the diarrhea continued.
The three times a week dialysis continued.
The fingersticking for getting blood continued.
The insulin shots continued .
The noise of the machines continued.
The rolling and pushing every two hours continued.
The changing of the bandages continued.
The constant parade of people in and out of his room continued.
And the pain and indignities continued.

Two weeks passed before Mr. Norman’s family was once again asked to consider Mr. Norman’s condition. There had been no improvement in any area of his treatment. His family was ready to let him go this time and the decision was made to do only those things that would keep Mr. Norman comfortable.
The tube feedings stopped.
The needle sticks for blood tests and injections were stopped.
dialysis was stopped.
All the tubes were removed and Mr. Norman’s hands were allowed to move freely again. This was called comfort care and his family realized it meant that he was no longer expected to get better. But they were relieved to know he was finally being made comfortable. He was put on morphine. He had not looked so relaxed in weeks.
But then the family heard that Mr. Norman would have to leave the hospital and all the staff who had known him these past months. He no longer needed a bed in a hospital since so little was being done for him. He would have to go elsewhere and his family said they could not handle him at home.
Two days later a bed in a nursing home was found for Mr. Norman where three days later he died.

The origins of “Allow Natural Death”

Allow Natural Death is a model of care that can be used in place of, or in addition to, the Do Not Resuscitate Orders that may be chosen or declined when a person is hospitalized. This is the simplest definition of the formalized use of “Allow Natural Death”. Allow Natural Death is already being used this way in facilities in Florida, Minnesota, Texas, Missouri, California and Virginia. You can find a more detailed description of the concept of Allow Natural Death on other pages and posts on this website.

The basic concepts of allowing natural death are hardly new. Before the widespread use of antibiotics in the 1940’s, the circumstances of death were not open to discussion. Serious disease most often ran a quick course to death with little or no treatment available.The focus was on comfort rather than cure. Pneumonia was sometimes called “the old person’s friend” when it took the life of an already frail elder. And home was where death most often occurred. Death was commonplace in the lives of Americans who became so comfortable with the dead in their midst that they often were posed for formal portraits to be kept as treasured keepsakes by the family.

In the 1970’s, followers of the back to nature movement began to turn away from the medical establishment as they advocated both home birth and home death. But the first person to advocate for the formal use of Allow Natural Death, in a hospital setting, was Reverend Chuck Meyer. Reverend Meyer was a hospital chaplain whose observations of end of life care moved him to write an article for the Hospice Patient’s Alliance. In response to the aggressive, life prolonging treatments (feeding tubes, hemodialysis, intubation/ventiliation, antibiotics, intravenous fluids) that he saw being given to terminal or dying patients, he suggested that the use of Allow Natural Death would eliminate suffering by ensuring that only comfort measures would be provided in such cases. He wrote that, for families being asked to make end of life decisions for a loved one, the use of Do Not Resuscitate (DNR) “is harsh, insensitive, and downright confusing.” And that DNR should be replaced with a gentler and more definitive approach – Allow Natural Death. In 1987 Allow Natural Death was formally adopted at Saint David’s Round Rock Medical Center in Austin, Texas. It is available there in addition to the formal Do Not Resuscitate order.

You can read the entire article from Reverend Meyer here: http://www.hospicepatients.org/and.html

I am honored….

The words “Allow Natural Death” are being used by a growing number of facilities;  Texas, where it all began, Florida, Missouri, California,  Illinois, and Virginia. Both “red” and “blue” states are represented so maybe that means the divisiveness that spawned the  debates re: “unplugging grandma” and “death panels” was just a way of bringing attention to something far more important. It is important to talk with our loved ones about our own definition of  a good death. These conversations will be difficult and some of our loved ones will tell us to “be quiet about such things”. They may even walk away and refuse the discussion. It happens. Try again. Maybe they would benefit from reading the “two grandmas story” in an earlier post.

Those difficult conversations can foster new ways of loving one another when we acknowledge that our time in this life is finite and that our death is a part of our legacy. When all is said and done –  it is the love that infuses time’s passage that will aid us in this most human of journeys through the changes that aging and death will bring.

****I recently learned that I am a finalist for a Dorland Healthcare People’s Award. I am honored.  An article that I co-wrote with a colleague made me an “Editor’s Pick”.  They felt that the Allow Natural Death concept was innovative.

Here is the link: http://www.dorlandhealth.com/Long-Term-Care/allow-natural-death.html

Taking “Allow Natural Death” to the NHPCO Conference

I am so relieved. I have just finished talking to a group of folks at the National Hospice and Palliative Care Organization Conference. The name of my presentation was “Allow Natural Death: A Care Model to Reflect the Wishes of Elder Americans for End of Life Care”. I had worried about this for months since I have never spoken at a gathering of hospice related professionals. I can’t be sure how my message was received, but I brought my passion to bear on this topic that is so important to helping us achieve our own chosen “good death”.

I told Mr. Norman’s Story and he touched people once again. I know the story of the end of Mr. Norman’s life is disturbing to listen to, but I am sorry to say that it has been the experience of so many of my patients. I want it to be so disturbing that we will do something to stop this from happening to others who don’t know what can happen when we don’t listen to each other about what we want at the end of our lives.

I will continue my efforts to get people talking…….

My Intentions

Facilitating conversation that will assist others in achieving their own good death is my mission.

I believe that “allow natural death” is a great place to start those conversations. Those conversations can foster new ways of loving one another when we acknowledge that our time in this life is finite and our death is a part of our legacy.

When all is said and done – it is the love that infuses time’s passage that will aid us in this most human of journeys through the changes that aging and death will bring.

I hope that my words will always be received in light of this intention.