Diane Rehm and her husband John had been married for 54 years when he knew he didn’t want to live another day.
His Parkinson’s disease had become
unbearable. “He just kept getting weaker,” the NPR host told NBC News. “We
called in the doctor and John said to him: ‘I am ready today.’ He said ‘I can
no longer use my legs, I can no longer use my arms, I can no longer feed
myself.’ And knowing with Parkinson’s it is going to get worse rather than
better, he said ‘I wanted to die.’” He asked the doctor for help.
The answer they got surprised and
disappointed both of them. “The doctor said ‘I cannot do that legally, morally
or ethically’,” Rehm said. “He said ‘I don’t disagree with your wish that you
could die with the help of a physician but I cannot do it in the state of
Maryland.’”
John Rehm had to deliberately die by
dehydration. It took nine days.
“John said he felt betrayed,” Rehm said. He said, ‘I felt
that when the time came, you would be able to help me.’”
John Rehm met the definition, says
Diane Rehm, a nationally syndicated talk show host for WAMU-FM in Washington.
“Both of us had agreed that when the
time came, we would be there for each other in whatever way was necessary,” she
said. “So when he made up his mind, that was it.”
"He simply decided the end had
come and he did not want to carry on this way."
She wasn’t happy about it, but
understood his decision. He’d been in assisted living since November of 2012.
“That was something we had both agreed we never wanted but at that point he had
started falling and I couldn’t lift him,” said Rehm.
By June of this year, John was very
frail. There’s no cure for Parkinson’s, and the few available treatments
eventually stop working. “He was so brave,” Rehm said. “He simply decided the
end had come and he did not want to carry on this way. He could no longer feed
himself, he couldn’t shower alone, he couldn’t stand alone.”
The
only option, his doctor told him, was to refuse all food and water. It’s not an easy way to
die, as it takes anywhere from a few days or a few weeks to succumb to
dehydration. It can be very painful, causing headaches, leg cramps and
delirium.
John Rehm’s doctor kept an eye on
him, administering low doses of morphine to control the discomfort. “He did not
seem to feel pain,” Rehm said. “We kept putting lotion on his lips and using
tiny little sponges in his mouth to keep him comfortable.”
It wasn’t easy to watch. “I wanted to
take applesauce and put it in his mouth,” Rehm said. “But you can’t do that.
You have to respect someone else’s wishes. You have to honor his desires. And
he was finished with life. He said ‘I am looking forward to the next journey’,”
she added.
Polls show that 65 percent or more of
the U.S. population supports having an option available to help people choose a
quicker, more painless death, Compassion & Choices says. This is different
from assisted suicide or euthanasia, the group stresses. “Assisted suicide is a
crime in many states, including Oregon and Washington, where aid in dying is legal,” the group says.
Assisted dying is also legal in Vermont and Montana. Several other states have considered the matter.
"I have no doubt that he was
terminally ill and if he was in Oregon he would have qualified for aid in
dying," said Barbara Coombs Lee, president of Compassion & Choices.
He should have had better
choices."
“We do not let our little animals
suffer and people shouldn’t have to suffer.”
In the United States, there's strong
opposition, Coombs Lee says. "There is a vocal and politically strong
minority that opposes it vehemently," she said. "They have all the
power in the legislatures. The combination of organized medicine and organized
religion is an extremely powerful combination in the halls of our nation’s
legislatures."
Compassion & Choices says it
doesn't support euthanasia or "mercy killing," "because someone
else — not the dying person — chooses and acts to cause death." What is called euthanasia and is legal in some European countries more closely resembles what the group calls aid in dying.
It would allow a doctor to prescribe
a lethal dose of drugs for a patient to take as he or she chose. “I would like
to, in every state across the country, in every city, in every county, I would
very much like to see a justification, an allowance, for aid in dying,” Rehm
said.
“We do not let our little animals
suffer and people shouldn’t have to suffer.”
Such a method could help patients
ensure that loved ones are with them if they wish. As it happened, Rehm wasn’t
there in her husband’s very last moments on June 23rd.
“I spent the night there Sunday night
the 22nd because I was afraid he was going to die that night and I didn’t want
him to die alone,” she said. She and their dog Maxie slept beside John’s bed.
“I will hopefully someday, with the
help of a kind physician, be able to end my life when I choose."
“When the caregiver arrived at about
7:30 in the morning I said ‘I’ll run home and feed Maxie and take a shower and
I’ll be back’.” A doctor called her soon after and said John, who was
unconscious by this time, would likely die within the next 24 hours. But before
she could get back, the caregiver called. John Rehm had died. “I got there 20
minutes too late,” Rehm said.
Rehm doesn’t want that type of
uncertainty for herself. “I will hopefully someday, with the help of a kind
physician, be able to end my life when I choose,” she said.
“I think there are so many reasons
why people choose to end their lives and I am not talking about people who are
desperate, who are miserable and lonely. I am talking about people who have
lived their lives and are satisfied with what they have had and are really
ready to let go,” she added.
“I just think we ought to be able to
create that space for ourselves where we can choose to die with dignity and
with the aid of a physician.”
As for her husband, Rehm said, “I
will love him and miss him forever.”
The community with the world's highest prevalence of Parkinson's Disease is along the River Nile in Egypt amongst the rural illiterate Egyptians. They have a prevalence rate of 1,103 per 100,000. This difference is probably related to poverty rather than literacy. In some of the villages south of Cairo there are only mud roads and open sewers. With a prevalence rate of 557 per 100,000, Egypt is the country with the world's second highest prevalence of Parkinson's Disease.
interpretation of the Bible. The prevalence of Parkinson's Disease amongst the Amish community is 970 per 100,000, which is enormously high. They are afflicted by genetic disorders. So it was thought that the cause might be genetic. However, the more closely related they were, the less they were affected. They are primarily involved in agriculture, and most of them use pesticides, but the effect of pesticides was not assessed by the researchers.
The world's highest prevalence 
The world's next highest prevalence of Parkinson's Disease is in the vicinities of ferromanganese plants near Brescia in Italy, with 407 people per 100,000 population. Manganese concentrations in settled dust were found to be significantly higher in the surroundings and downwind from the ferromanganese plants. In high concentrations, manganese is a known cause of Parkinson's Disease.
more Japanese women than men have Parkinson's Disease. 
of only 23 per 100,000. This gave African-Americans only a 43% chance of being diagnosed in comparison to whites. Even after adjusting for all possible factors, African-Americans still had less than half the likelihood of developing Parkinson's Disease. The reason for this racial difference in Parkinson's Disease is unknown. Observed racial differences in the incidence of Parkinson's Disease are not explained at all by differences in age, sex, income, insurance or healthcare utilization. In another study the prevalence in the U.S.A., proneness to Parkinson's Disease was also found to differ according to race, but with Hispanics, then Whites, then Asians, then Blacks being more prone. Other studies have given different results.
with blonde hair were found to be around 60% more likely to develop Parkinson's Disease. Worst at risk were people with red hair, for whom the risk of Parkinson's Disease is nearly doubled. At first this association seems odd, but hair colour and Parkinson's Disease share a common biochemistry. The dopamine needed to relieve Parkinson's Disease is initially made from L-tyrosine turning in to L-dopa. Coincidentally, Melanin, the pigment that colours hair is also initially made by turning L-tyrosine in to L-dopa.
