I originally posted this on Thanksgiving of last year. I think, given the attack on end of life care, initiated by the elected political factions more loyal to the corporate interests than to the people who were manipulated into electing them, it is time to revisit the art and
intention of being conscious. The article in the New York Times last Sunday, which I won't reference, hypes the suspicion that hospice is about euthanasia not comfort, and the article is written, in my opinion, in emotional ignorance of the dynamics of grief and psychology. We need to Awaken. To check out how
Max Blumenthal thinks death and fear of death is being used to manipulate the populace and health care votes, check out his post. Interesting ideas to contemplate.
I have talked about my experience as a graduate of UCLA's breeding ground for agents of social change. I used to believe social change could be best accomplished on a macro level, then I changed my mind and focused on the individual. Now? Well, I'm not sure. Which suggests the intelligent answer is, of course, not either/or, but rather both/and. All it takes is walking through this world consciously and remaining out of the denial trap. Of course we must not forget the ever present time card and its impact on this endeavor.
I am sitting in something called IDT. Short for Interdisciplinary Treatment Team. There are about 20 of us. It is common for the two or three doctors, each in his or her turn, to be reviewing individual patient cases while other staff of lower status multi-task in smaller units about urgent details that there is no time to discuss in the larger forum. This low hum of pressing background anxiety is fortified by movement. The movement consists of those rapid and frequent trips by all of the medical personnel, to and from the area surrounding the ubiquitous stainless steel sink, which is outlined in glaring florescent light, encapsulated by sterile gray walls and floor, and whose accouterments are all manner of metal objects, as they seek access to cold coffee, trays of gastronomic goodies oozing in bad cholesterol, and a chance to slip out and return calls from insist pagers.
Today, if possible, the din is worse than usual. The whispers more urgent and not about patients. The whispers are about staff. The Administration of this highly rated HMO is on a hunt for fraud. They began, several months ago to track the records we turn in at the end of the day giving the dry detail of where we went, how many miles we drove, and how we spent our time, against company cell phone records. No doubt some person in QI wishing to score corporate points with the new administrator came up with this idiotic idea. At any rate the consequence was for the Higher Ups to see discrepancies in some people's records, between where they said they were on paper and where the cell phone record physically located them. Therefore, heads were going to roll.
Everyone knew that if a call was received to go into the main office, 20 miles to the south, the result was likely to be instant unemployment. The head physician tried to be comforting and advised, “If you're called in say nothing.” And then quickly shifted to another topic. Still, until that moment came, we had to keep up our usual excellent hospice care and our meaningful relationships with our patients. Least anyone think there was real fraud going on, there isn't. Administration is not tech savvy and on that given day didn't realize that cell phone towers pick up and rotate calls in such a way as to give the appearance that calls placed in one area (say Diamond Bar) are actually coming from somewhere else (like Santa Ana). But truth wasn't relevant to the script Administration had created for itself, so staff suffered the terror of possible termination in the cruelest of economic times.
But that is only the background, the corporate equivalent of a hip hop thump coming from a car with blacked out windows, the anonymous punk doing his best to draw attention from the more important tasks of life. My first stop after the meeting was a board and care where I had two patients. The “facility” is a former executive home with eight bedrooms on about an acre of land. The large circular driveway and well constructed wet bar, complete with real brass foot rail, speak to a time prior to the current Filipina owner who has turned the home into a business, filling each bedroom with a frail old person and charging each $3500 a month plus to have the safety of living in numbers and someone to mop their drool and change their diapers. I chose this place today because we have quotas and on a short day, half taken up by meetings, there is no credit given for time spent actually planning treatment. Hence it is strategic survival to make the use of time and travel very,very efficient.
Patient number one, I'll call her Livia was seated in a gerry chair at the dining room table and she was in full form.
“Oh. It's you. Go way. I'm miserable and you always ask me how I am when you know damn well I'm miserable.”
To which I say,”How come you're so determined to be miserable?”
“It's my lot in life.”
I should probably explain at this point she is 104 years old with a dementia diagnosis. Her daughter assures me that Livia had a wonderful life, she just can't remember it.
“OK, Livia. Well, I am in kind of a hurry today so I won't bother you.”
“Oh fine. Sure. Just walk away. On a day when I could actually use you, you don't have time for me!”
“If you need me I'll stay. In fact I really wish you would tell me about your life.”
“Just get out. You aren't interested and my life is over.”
I touch her hand and squeeze it gently. This is always how it goes. She could have stepped into the role of Livia Soprano when Nancy Marchand died. And I always leave feeling like Tony with the rejected box of macaroons.
Patient number two is at the back of the house, which is quite a hike. I recommended a board and care for him over an assisted living situation because his pulmonary disease is so bad and so aggressive I was afraid he would move into an assisted living only to be told he couldn't stay due to the need for a higher level of care. He took the list of places I gave him and chose one I didn't highly recommend. He chose it because it was close to his sister. (There was only a difference of about two miles between the two options.) Now he hates it because nobody speaks English and he is out $4000 because he wants to move again. He tells me he is going to Palm Springs where he has friends and they have already picked out an assisted living for him. I tell him his insurance provider doesn't go out that far. He doesn't care. (I guess his friends will find a way to make sure he gets his 10 different medications and six tanks of oxygen he goes through every other day.) The physician is furious when I tell him and he wants me to make this gentleman stay. Dr X is still learning he can't impose his will on others although God knows, he tries. He was a hospitalist for too long before coming to hospice. I asked the patient if he would like to change service from palliative care to hospice so we could at least get hooked up with a medical provider and his symptoms did qualify him. His answer: “Hell no, I know I'm go'n die but I'm not go'n do it until I've had some more fun.” He then told me the new place had a happy hour and that he was a former alcoholic who badly needed a drink. Really, he said that to me. What's left to discuss?
Then came the appointment I was dreading. It had been about three years since I had seen the old man and his son. Both had cancer. The father was the identified patient. I had spent one hot afternoon with them doing an intake that culminated in calling the police. We had met outside in an uncared for backyard. I well remembered the son's behavior was odd and intrusive. He had a small dog and pretended to be playing with it but in fact the tennis balls sailed very closely past my head, at high speed with great regularity. As the interview wore on it became apparent son and father had a murder-suicide pack and would not tolerate anyone getting in their way. I called the police when I was clear of danger, the man was discharged with copious notes attached to his medical records to never refer him to our program again. Of course not only was he re-referred but he had all ready been readmitted. Now I was being given the assignment of returning to this hellish environment and assessing if father and son were safe to be in their home, and if not, coming up with a solution.
I arranged to go with an RN who was terrified by the potential risk of the situation, along with dreading the possibility of being called in for the erroneous fraud firings. We didn't announce our visit because we couldn't, the patient's phone gave off a constant busy signal. We hoped they were not home. They were.
All six foot two of the son answered the door. His bare hairy tattooed arms hung out of a black tribal embossed tee shirt. His skin head hair cut gave the fall light a surface to reflect from. He was not pleased at our unannounced presence but let us in. I fingered my can of pepper spray. We went to the old man's room, which was a long way down a series of dark hallways. It stank of urine so bad it was hard to breath, every surface was covered with years of unidentified goo. We put on gloves and began moving rancid objects that blocked the RN's path, the objective being to allow her to examine him. In the mean time, with proper apology, I began asking the questions I had to ask. “Refresh my memory, who is your durable power of attorney and with which mortuary have you made funeral arrangements.” I won't repeat what he said but I didn't get an answer.
The son said he had the info written down and asked me to follow him. The RN looked safe enough so I obliged and followed. We walked west through rooms which had been many times modified and after a couple of step down processes, past a filthy refrigerator, car parts, stacks of boxes and junk, I realized we were in a garage that had been converted to a bedroom. The windows were covered with layers of foil, and he announced he hated the light and it was here that he locked himself in for safety each night. I visually checked the door. Indeed there were multiple locks. Hard to get in. Hard to get out.
As I got used to the even lower light there was another oddity. Every inch of the walls were covered with posters of shirtless muscle men and wrestlers. All were framed with carefully attached high end matchbox race cars, hanging in their still unopened packages, factory pristine. These also outlined the door and window frame. In between were equally unopened packs of condoms, held in place by thumb tacks. An interesting presentation for a man well into his 50s. The room was small and the ragged bed was the most commanding item in it, dwarfing a good sized fish tank. Next to the fish tank he pointed to a neat hand lettered sign with his sister's name and phone number. I now had the information I had asked for and a lot more. We spent a long time exploring his history of self mutilation, suicidality, fear of hell, hatred of his father, and will to survival. I put forth my best professional presentation and got a “no suicide contract” to tuck in my risk management tool bag. Then I led him quietly back to the old man's bed , my pepper spray still comfortably within reach.
There was more to this day. Much more. But what stands out for me is the lack of competency on almost every level I dealt with as I traveled my way from morning to evening. Incompetency reinforced by the defense of denial was everywhere. First, a corporate employer that should have known the quality of its employees but based on the zeal of a new administrator (that has no interface with us and no background in hospice), decided to implement personnel actions based on faulty data. The act of denial here? Quick judgment reinforced by egos that couldn't and wouldn't consider the possibility of being wrong. I AM, therefore I am Right.
For the old lady, even though she has some dementia, she also takes in a fair amount of real time information. And she denies herself happiness. She feels safer being mean and driving people away. For the 78 year old who needed a drink, he says he understands death is near. Sure he does. But he is still bargaining. And his denial of the seriousness of his illness is going to cost him several thousand more dollars and strand him without adequate health care. We can all see the train coming. All except him. For the board and care operator, she should have been more up front with this potential resident and his short stay there opened my eyes to her behind the scenes money operation. Her short term gain has hurt her long term standing and I will take her home off my referral list. She swims in the river of greed believing her behavior doesn't have consequences. I think it's the river in Egypt called D' Nile.
And the old man and his son? The elder denies that he needs help. So he lays in shit all day, won't let his son help him. The son lives in denial that he has choices. He could leave, live a life. But the threat of Hell holds him hostage. He believes he has to stay with the father he hates. All are safer with their current lives than imagining a different future.
My job is not to judge people but to be a messenger who suggests the possibility of moving consciously through our psychological and spiritual issues, and therefore our life. As such I am a transient guide who shows them the light if they are willing to see it. Few are. And when I look from the individual to the larger society these days, I am not seeing a lot of difference between the micro and the macro. America (indeed the world) seems to have its head in the sand on so many issues from consumerism, to global warming to economics. And that is a real shame because it will hurt all of us. We can only change by asking why our life and our society isn't working and then keeping our ears open for real (and, yes, painful answers). That is the only way we can find the freedom to change how we move through our personal and corporate and national life. I will close with this link to an article in today's New York Times. The article is about our elderly citizens being trapped in homes they own and can't sell which leaves them at risk to unsafe living conditions. We, as a country, have slept through the alarm, and it is past time for drastic action to find and embrace reality.
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