Sunday, April 6, 2008

A Miracle Enveloped in a Tragedy

Juan Augustin was hit by a car. Or perhaps attacked by thugs and beaten and robbed. He was taken to a hospital. He was given a name. Juan Augustin. It may or may not have been his real name. Actually, it turned out not to be his real name.

He was sent to a nursing home, a hopeless quadriplegic, with some eye movement, living on a feeding tube, breathing though a tracheostomy tube, his hands sometimes tied to the edges of his bed to keep him from pulling out one of his tubes.

A few times Juan came down with pneumonia and would be sent to hospital where he would be pumped full of antibiotics, put on a respirator machine and left to get well. Then he would be sent back to the nursing home.

I had been appointed Juan's guardian. That meant that I had responsibility for making medical decisions since he couldn't communicate and to all outward appearances would have had no ability to evaluate the choices.

At the nursing home, I consulted with all of the medical staff to determine what the best regime for him would be. Basically, not much more than was being done. I wondered whether and when he might die. That is part of my job. The nurses, mostly men, said that in the mornings he would perk up and open his eye and respond to questions. I never saw that side of him.

He came down with pneumonia again and was sent to a different hospital. I was called and went to see him. The hospital staff wanted to know what his advance directives should be. DNR, full code, no code, what about other procedures? pain medication, antibiotics, biopsies, all of the myriad questions one faces when in a hospital today. I went to see him in his hospital bed. He was his usual very comatose self. I spoke to him. In Spanish, since he doesn't speak English. When I asked him how he was he remained still and silent. When I asked him -- as I must -- whether he wanted to be kept alive, he reached up and grabbed my hand on the side of the bed. I held his hand for a while, until he let his drop. I told the nurse, Full Code.

A few weeks later, I received a call from a social worker at the hospital. Could I help with his financial information so they could discharge him back to a nursing home. A much more appropriate place than a hospital. I had no information. A week later, the social worker called again. This time to tell me that because he was -- apparently -- an undocumented alien, the city wouldn't pay his medicaid so no nursing home or other facility would take him. He was, effectively, stuck at the hosptial.

I visited Juan sporadically. Toward the end of six months there, I discussed the possibility of starting hospice, since it didn't look as though he would be getting any better and he had been losing weight and showing other signs of "failure to thrive." He was still essentially unresponsive to my talking to him. The doctor said he would undertake an ethics consult, of several doctors, to evaluate what the longer term next steps should be. I would of course be involved.

When I visited a few months later I asked about the ethics consult. The new doctor -- they rotate in and out every month -- said with a big grin, that Juan had shown remarkable progress lately, that a volunteer had been able to communicate with him, that he was from El Guateduras, in Central America, that his name was not Augustin, but Acevedo and that he had family in the region.

I raced into his room, greeted him, found him responsive, took up the paper with the alphabet written on it, and since he opened one eye, started to talk to him. He could take a pen, as a pointer, and hold it in his crippled hand, and point at letters and numbers. He could nod yes or no to questions phrased simply. I confirmed all of the information and learned that he didn't want to stay in the hospital, that he had had a passport, that he had been robbed, not hit by a car as the hospital records said, that he even had a work permit. At one point, he also opened his other eye. Something he hadn't done in two years.

Ecstatic, I called the El Guateduras embassy and spoke to the consul. The consul said he would be willing to visit Juan at the hospital and see what he could do. He thought he could locate the family in El Guateduras, if he knew where he was born and what his full name was.

At the same time, we had to get him documented so he would qualify for public benefits so he could be moved from the hospital. It was also clear that he was very, very depressed, that his body wracking cough was due to his inactivity, and that with physical therapy he could regain some movement. He was, after all, only 37. I retained an immigration attorney.

The consul, the attorney, a relief worker from El Guateduras and I visited Juan. We talked at length with him. Near the end, the consul, who had been on his cell phone for some time, said they had located the information on his passport. He would give that to the attorney who could then use it with Homeland Security. I asked the doctor to order antidepressants, B-12 shots and provigil, a drug given to those with dementia to perk up their mental functioning.

While in my office on Saturday afternoon, I got a call from a woman who spoke virtually no English, and very fast Spanish. She was Juan's cousin. A sister of Juan's in El Guateduras had called her to tell her where Juan was, and to alert his mother, brother and sister, all of whom lived nearby. Juan's mother wanted to talk to me.

I called the number for his mother, and got his brother. We talked a long time about all of the issues. The family wanted him taken from the hospital. I explained that Juan would need insurance, qualifying documented status or a very rich relative. Because there was no safe discharge home or anywhere else without a lot of money. But, that we were working on improving his life.

His mother was at the hospital. She had persuaded the staff to allow her to spend the night with her son. His brother told me that Juan told him he wanted to die. That he was in terrible pain. What could be done?

This was now, not only a miraculous reunion, but one of many tragedies being played out in this country at this time. Whole families living under the dark clouds of fear. And this one anchored, now, to an ailing son and brother, a quadriplegic in a hospital, unable to be moved.

This story isn't finished yet. It is hard to know where it will lead. My hope is that between the El Guateduras government and my excellent immigration attorney, we will put Juan on a road to improved medical care. I see him, in my mind's eye, zooming around in a motorized wheelchair, guiding it with his right hand on a small stick, as so many are doing now. We just need the resources. And lots of luck.


PattiB said...

This is a tragic story, and given that I live in Arizona, I know it is played out many many times with a host of variations.

That said, you don't have to be a non-English speaking, possible alien to be ignored by our health system! All you need is some bad luck.

I'm a white female now 57 yrs old, Mainstream BabyBoomer with a College Degree. Last August, by a fluke, I was diagnosed with a really nasty, rare, very fatal cancer. Had I not persisted and persisted for over a year to deal with this dumb nagging cough, it never would have been found - in my liver. (another long story about inadequate care WITH insurance!)

But they saw the masses on my liver during a lung CT scan. Yea me. A chance to live. Turns out that my insurance was woefully inadequate and I ended up on Medicaid and SSI while waiting for SSDI (Social Security Disability paid for from working your whole life). As soon as I was approved, and that was fast because my cancer is on a short list, I was told that I no longer qualify for Medicaid. My $1306/mo disability check is too much income.

So here I am as of April 1st with no health care. I can't go anywhere else without paying up front (no insurance) and my current Cancer Center wants me to "pay as I go" as well. You try living on this amount when the smallest rents are about 1/2 that check and see how much you have for very expensive cancer treatments! I have no chance without treatment, with treatment anything Could happen, but at the least a major delay in symptoms and a decent quality of life.

So, what did I do wrong? I'm still beating the odds (less than 1 yr prognosis) and am healthy, but get too sick on chemo to work full time and qualify for insurance. Once I'm so sick, and so past any possible treatment that I'm bed-ridden and/or in terrible pain, I can get "long term care"; love the oxymoron! But if I'm mobile, forgetaboutit.

You can't get Medicare until you've had SSDI for 2 years. Not too much chance I'll be around to see that. I'm being treated for depression, for obvious reasons, and let me tell you, getting MENTAL health coverage is a snap compared to cancer!

I feel very sorry for the man in your post who through no fault of his own ended up disabled. How should I feel about my own case?

Pat Bush (you can remove my email, but I wanted you to know that I am a real person - despite the infamous last name!)