It seems that everyone has an opinion on the tragic story of Jahi McMath.

For those who haven't heard about this yet, Jahi McMath is a 13-year-old who underwent what was supposed to be a routine tonsillectomy at Children's Hospital in Oakland, California. After surgery, she went into cardiac arrest after coughing up blood and has been declared brain-dead by the hospital. Jahi's family does not believe that she is dead and has been fighting to keep her on life support. There were earlier reports that a facility in New York has been found that is willing to take her, but more recent reports simply say that the family is trying to find a facility. If they do, Jahi needs to have a tracheostomy and percutaneous endoscopic gastrostomy (PEG, or feeding tube into the abdomen) before she can be transported. The hospital is refusing to perform this procedure because they regard Jahi as dead and legally they have no obligation to perform procedures on a dead person. There is at this point no outside physician set up to come in and do this, and it's questionable whether any physician would even be willing to. Of course the usual assortment of ghouls has come out of the woodwork, with a foundation dedicated to the memory of Terri Schiavo working with the McMath family.

Back when the Schiavo case was all over the news, to the point of federal involvement by officials smelling Christofascist Zombie Brigade votes, I too thought the case was cut-and-dried, that Schiavo was indeed brain-dead and that there should not be an issue here. I still do. But I no longer regard people as stupid who believe that their loved ones who are on ventilators are still present in their bodies. I no longer regard them as stupid or deluded because I've now been there. I've now seen it. I now know what it's like to see the person you love open his eyes and at first you think he's looking at you but there just seems to be nothing going on behind the eyes. You don't know if he's seeing you, if he knows you're there, if he feels you massaging his feet that are so swollen they feel like massaging wax, if he hears you tell him that if he will just wake up you will take him to the Grand Canyon and fly first-class, if he hears the music you play on your iPad on his pillow. You don't know until they shine a light in his eyes and stick a Q-tip in his nose and into the back of his throat and he doesn't blink or sneeze or gag -- and even then you don't know because hey, he opened his eyes, didn't he? I now know what it's like when the nurses turn the person who used to thrash so much during the night that being in the same bed with him was like being on a storm-tossed sea. I now know what it's like to see your spouse open his eyes after they take the ventilator off and run out of the room yelling at the nurses that they promised he would be sedated and comfortable -- and have them tell you it's just a reflex.

I know what it's like to sit in a room full of doctors and patient advocates and other members of hospital officialdom a week after he should have awakened and two days after the neurosurgeon you still trust said that he doesn't think it's time yet to talk about options, that he thinks your husband will still wake up. I know what it's like to be given four options as to what to do now that your husband's brain has shown that it simply cannot handle the withdrawal of even one of the four anti-seizure medications they have been pumping into him without going into seizures, only now it's seizures on BOTH sides of the brain, not just the left. Yes, Mr. Brilliant had an advance directive that made clear that if I agreed to have him trached-and-PEG-ed and moved to a rehab facility, and he ever woke up (which was doubtful) and had to re-learn how to walk and talk and feed himself, that he'd be really, really pissed. But that doesn't make it one bit easier to say "He would not want to live this way" and make him "withdrawal of care", as the hospitals call it. The only thing the advance directive does is keep you from being in this limbo of hoping for a miracle.

I also know what it's like to second-guess yourself endlessly, especially after seeing things like this, which seem to reproach you for not doing whatever you would have had to do in order to get a reluctant patient to the emergency room and taunt you about someone whose spouse DID get her to the ER and she recovered from a stroke. The second-guessing is horrible, and I will probably do it forever -- playing that Saturday over and over and over again and wishing I'd called Dr. Chess Club as soon as Mr. B's speech started to slur instead of being weary and not fighting his refusal because for months he'd been getting angry with me and lashing out every time I reminded (or nagged, if you prefer) him to drink water for hydration, or noticed something that wasn't quite right -- and wondering afterward, after seeing things like this if that would have made a difference.

So I really can't judge Jahi McMath's family for refusing to believe that their daughter is gone. Her chest moves up and down with each breath, even if that breath is being accomplished with a ventilator. Maybe Jahi's eyes are opening too, only her family doesn't work on oncology trials and doesn't know enough to be the pain in the ass that I was. They see her eyes open and they see her "breathe" and they simply cannot fathom that while the lights may be on, there's nobody home in there.

I was lucky, as odd as that sounds. I dealt with doctors who were empathetic and caring and really "got" what my dilemma was and how much I wanted to balance hope with Mr. B's wishes. They knew the mental anguish I was going through and tried to do everything possible to give me the medical information I needed in order to try to put my mind at ease -- not that anything would have worked, but I give them credit for trying. There are things I wish they had done differently, of course; I wish Dr. Chess Club had emphasized that Mr. B. was still at risk of stroke and and about what symptoms to be vigilant. I wish a hospice nurse had been there at the end and that it had been better explained to me what to expect after the ventilator had been removed. But no one is perfect, and no one called Mr. B. a corpse or a dead person the way Children's Hospital is being with the McMath family. Bedside manner matters. Even when critical care physicans have to detach because if they got emotional over every patient where something goes wrong, they'd go nuts in short order, the illusion of caring matters. The doctors at Big Prestigious Hospital may or may not have actually cared, but they at least gave the illusion that they did. It appears that the doctors at Children's Hospital aren't doing that, and they are reaping the consequences.

I'm not sure one ever recovers from having to make that choice, to sign those papers, to make the affirmative decision to "let go." I don't know if I ever will. Yes, Jahi McMath is probably dead. But not so long ago she was a happy 13-year-old girl with hopes and dreams and giggles; just the way Mr. B. went from putting his resume back on the job boards and looking forward to a nice Thanksgiving dinner to celebrate the end of his cancer treatments and recovery from two brain surgeries to lying unknowing in a bed in an intensive care unit with tubes coming out of every orifice in his body. It's hard to wrap your mind around that. I had an advance directive and kind and caring physicians and a good support structure and enough understanding of medical terminology to provide a road map to the right decision, even if I do still second-guess myself. The McMath doesn't seem to have any of that. So I can't judge them, even if I think they are wrong.

Labels: end of life care, medicine, personal musings

During the end stages of my late mother's illness, I did not want to write publicly about what she was going through. But now that she is gone, it can be instructive.

In late September, Mom had an "episode" which landed her in the hospital. Always in denial about the reality that she had Chronic Obstructive Pulmonary Disease, she continued to smoke and only used her supplementary oxyten when in bed. After she had fallen asleep sitting at her kitchen table, she spent the next two days in bed, unable to even speak properly. The following night she went completely psychotic, screaming terrible things and demanding to be taken to a hospital.

As far as I know, she was given only oxygen at the hospital (where she arrived with a blood oxygen reading of only 83%), and within a few days she was coherent again, though the nightmarish scenario she still viewed as real didn't become acknowledged as a hallucination until a week later.

After two months in an assisted living residence (which she hated), Mom went back home and died 36 hours later, peacefully, in her sleep.

In the last few months of her life, there had been a few times when she had found herself having panic attacks, unable to catch her breath. This is characteristic of COPD patients. My sister had arranged entry into a hospice program for her, but when she proved too "healthy" for inpatient hospice, she began as an outpatient. For all that Mom had suffered from severe depression her whole life, she clung to her incapacitatingly miserable life. What she had described ini September seemed that she had gone to the brink back then and then decided she wasn't ready yet. But by the time she came home, once again incoherent, unlikely to improve significantly, I think the antianxiety meds that hospice provided allowed her to let go and pass quietly.

This was such a blessing, as we had had nightmare scenarios of Mom, always a wuss about discomfort, screaming in terror as her damaged lungs and heart gave out. Hospice was able to provide her with at least some measure of comfort and dignity as she ended her journey.

For those in Louisiana, who may be poor and also dealing with a terminal illness, exiting will not be as painless as it was for my mother. Because 2016 GOP Presidential wannabe and Teabagger Darling Bobby Jindal, has decided that death with dignity is only for those who can afford to pay for it or those fortunate enough to live in communities that have sufficient funding to pay for indigent care:

he has authorized elimination of the state’s hospice program for Medicaid recipients. According to a local New Orleans news station, Louisiana residents over the age of 21 will stop receiving hospice benefits at the end of the month. As of February, low-income Louisianans with terminal illnesses and disabilities will lose access to long-term home and medical care.

The Louisiana Department of Health and Hospitals defends this as a cost-saving measure: Over the next two years, Louisiana will save $8.3 million by ending state-funded hospice care. But that’s a paltry sum compared to the state’s $900 million deficit. And in the same way that raising Medicare eligibility increases costs by moving seniors into more expensive private insurance plans, these cuts will, in the end, place a greater burden on the state, as low-income Louisianans turn to nearby hospitals and ICUs, shifting the burden to localities.

In isolation, it’s a disaster of a plan. When coupled with existing cuts to education and a large tax increase on the bottom 80 percent of Louisiana residents, it’s a catastrophe. Indeed, Jindal seems devoted to engineering a Louisiana that works little for its most vulnerable citizens, and does as much as possible to satisfy the wants of wealthy, entrenched interests.

It's one thing to buy into this notion of "makers and takers." It's one thing to fancy yourself to be a religious man, walking around with an aura of faux-piety, and decide that terminally ill poor people can die in excruciating pain, or gasping for breath, if already-strapped localities can't foot the bill.

Whether Barack Obama follows through on his inauguration speech is yet to be determined. But in his speech, which Republicans quite rightly saw as an attack on their cold-hearted social Darwinist agenda, this is what he was talking about. We do have an obligation to care for those unable to care for themselves. Hospice is part of that for end-of-life care. And no one who would cut people out of hospice deserves to ever invoke any kind of deity again.

Labels: Bobby Jindal, end of life care, social Darwinism

Forgetting for a moment about the utter ridiculousness of the right's insistence on how much they revere the sanctity of life at the same time that they want to pull the medical rug out from everyone who reaches the age of 65, the fact remains that if the elderly cannot obtain medical care, or if they WANT to leave before becoming a tremendous cost to society, we're going to have to come up with a way to do it.

Yesterday in the New York Times, we read about a couple who decided to exit peacefully and without violence -- through self-stafvation -- and got kicked out of their assisted living residence:

As it happened, the elder Rudolphs had a long and satisfying old age in Albuquerque, N.M., where they lived for 60 years; they gardened and volunteered with the Boy Scouts and served as leaders in their Presbyterian church. When their large house and gardens became difficult to maintain, they built a smaller one in a neighboring town, then moved again to a retirement community.


“At that point, some health issues began to emerge,” their son said. Mrs. Rudolph broke her hip and was in and out of rehab, suffering frightening episodes of delirium.

“Dad had a permanent catheter,” said Neil Rudolph. “Physically and mentally, they began to go downhill.” In October, they entered an assisted living facility called The Village at Alameda, thinking it would be their last home.

The Rudolphs faced increasing pain and debility. Mr. Rudolph, 92, suffered from spinal stenosis; Mrs. Rudolph, 90, had become largely immobile. Both showed symptoms of early dementia. So in January, they set in motion their plan to stop eating and drinking.

And the facility tried to evict the couple. The administrators, apparently on orders from the corporate legal department in Maryland, told the family the Rudolphs had to leave the next day.

Current management would not comment beyond an e-mailed statement saying that when a resident “requires alternate placement, medical attention, or a level of care beyond the facility’s capabilities, we have an obligation to notify a medical provider.” Fundamental Long Term Care, the firm that owns the facility and more than 100 others in 14 states, did not respond to requests for interviews.

As Neil Rudolph recalls the events, he protested that the couple — already on Day 4 of their fast — had nowhere to go. He also pointed out that their contract required 30 days’ notice of discharge. The following day, administrators called 911, reported a suicide attempt and told the paramedics to take the elder Rudolphs to a hospital.

So much for the peaceful passage.

Voluntarily stopping eating and drinking — as the Rudolphs had learned from consulting with Compassion & Choices, the largest national organization working to expand end-of-life options — is a legal way to hasten death without drugs or violence, usually in about two weeks. In a survey of hospice nurses in Oregon, published in The New England Journal of Medicine in 2003, respondents reported that most of their terminally ill patients who had deliberately refused food and fluids had “a good death,” with low levels of pain or suffering.

“They said, ‘That’s what we want to do,’” Neil Rudolph said, emphasizing that his parents’ decision was hardly impulsive or caused by a bout with depression. He and his sister, Elaine Spence, and their spouses had come from Colorado to be with their parents and had called in a hospice organization. “We all discussed what it meant and whether they were sure,” he said.

When his parents said they were, he helped them write a statement affirming their decision and then told the assisted living administrators about their plan.

Shortly thereafter, two emergency squads, from the Albuquerque Fire Department and Albuquerque Ambulance Services, converged on the scene. Neil Rudolph’s wife called a reporter from The Albuquerque Journal, to whom the elder Rudolphs gave outraged and lucid interviews. The emergency crews soon called a doctor at the University of New Mexico’s emergency medicine department, part of a consortium that consults when a 911 call brings a situation outside the norm — and this certainly qualified.

The Rudolphs were eventually able to check out the way they wanted to, but it was only because their children rented a house for them and, with the help of hospice and taking turns in a round-the-clock vigil, were able to provide the necessary care. What about people without the resources to rent a facility away from the medical community, or without children, or with children who are unable or unwilling to provide this kind of care and oversee this kind of exit?

We can't have it both ways as a society. We can't rail against "greedy geezers" and have politicians screaming about how much it costs to keep the sick elderly alive and at the same time put roadblock after roadblock in the way of a dignified exit. If we can't have an exit that doesn't cost hundreds of thousands of dollars and agonizing pain and indignity, and we can't obtain medical care, what are we supposed to do when our time is up?

Labels: end of life care, hypocrisy