A recent article in TimesOnline (hat tip RobT) raises an inevitable and interesting question about how we are going to ration scarce high tech medical resources in a pandemic. The article reports on a paper by Canadian scientists on SARS patients indicating that certain patterns of protein expression offer clues to clinical prognosis. In particular, the researchers found that protein expression patterns for interferons, known to participate in the innate immune system's reaction to viral infections, seem to indicate that one of two distinct patterns predict a relatively good prognosis, the other a dismal one:
"This study suggests that information on how a SARS patient expresses these genes during their illness can be used to identify who may require more specific treatment," says Mark Cameron, the lead author of the study writing in the Journal of Virology. "Also, we think that these patterns may apply to illnesses caused by flu viruses and that they should be considered in pandemic influenza preparedness, once we have done the work necessary."In this country [UK], there has been much debate about prioritising care on the basis of age. Yet older people, who have the longest history of flu exposure, may be the least vulnerable. Now we learn that good genes will help the lucky. Never has a policy of genetic discrimination seemed more equitable. (TImesOnline)
Well, not really. First this is a study of SARS, not influenza, and while the same mechanisms of pathogenesis may be at work (and there are many similarities), we don't know that yet. So that's one big jump. A second relates to identifying protein expression with genetic endowment. Protein expression tells when a gene has been turned on and is producing product. It doesn't say whether the gene is there or not or what the switch is. We are far from understanding this mechanism. A third point relates to whether this provides an equitable criterion, even if it is related to a person's genetic make-up. Suppose a relevant gene or genes are also related to hair color or on the Y-chromosome. Would this be an argument to deny treatment to redheads or women?
The problem is in the use of the word equitable, with its implication of "fair." The nasty discussion of what is fair or not in our society cannot be so easily sidestepped by using a genetic test, no matter how sophisticated, to decide it. Some things you just have to talk about ahead of time.
Or maybe it is more accurate to say, some things you should talk about ahead of time.
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First you need the blood vials and needles...then you need an avaliable nurse to take the blood...then you need someone to transport it to a functioning lab...that has the personnel to run the test on properly maintained machinery.
Would they have been able to take these samples during a tsunami or a hurricane?
Pandemic = Pandemonium.
I think many professionals involved have become blinded by their reflection in the mirror...and can't seem to stop looking at themselves...
...we are over-impressed both with our current scientifc knowledge and our primitive technologies...and their illusion is deliberately misleading to the general public.
Say I was one of those who turned out to have a poor genetic prognosis, based on the test. Might I then be able to choose to have a painless, medically-assisted "out" rather than waiting for the pain and suffering of a total bodily breakdown? More importantly, might I receive one from a compassionate doctor more focused on the patient's immediate needs than a famous speech from a dead Greek?
Apologies if this is sensitive... I kind of have it in mind right now... my dad is in the hospital dying of brain stem tumors, unable to walk and soon unable to speak, and he told me he would rather go when he chooses. I agree, because if I were in his case I would want the same thing, but I'm afraid to help him ask his doctor about it.
speedwell. I am really sorry to hear about your dad.
Truth be told...which it isn't...if the status quo and the current short-sightedness remains in effect for much longer...there will be no antibiotics, no anti-fever or anti-shock drugs, no oral electrolyte powders...and no one to dispense them or treat you with them...
...there will also be no morphine to assist the dying.
Your loved ones and my loved ones will die with less assistance then in 1918...
...a very, very, very sad state of affairs.
Speedy old son, you are not alone. If your father is able to communicate and cognizant then now is the time to get him out of there, let him make the decision though. Obviously he will need something for pain, so get the doc to prescribe it. I am not a Kervorkian fan but when you are in this shape you have to make a decision if you are able and it sounds like he has already. For many its the non assisted type and if you leave the morphine or whatever within reach, well its just the way things go.
Baring the legalities of it, you could also make it to the beach and depart for the 12 mile limit, the end of all states jurisdiction. Its all about what you would do to help your farther. I know what I would do.
A like type situation with my parents. Both Dad and Mom had DNR's and both got cancer. Dad of the throat and if they had snipped him just a bit farther up when they cracked his chest for the triple bypass they would have just closed him up. Inoperable and the tumor was attached to all of the vessel structure on the right side of the neck. But when they did the bypass it increased the blood flow so the tumor grew and closed off his windpipe and well, he coded and they got him back at the insistence of my sister. I went ballistic because he did have a DNR and well so there he sat on the machine for a week. I had to go to court to get the order enforced and my sister in particular wasnt happy with me because of that. He lasted for 19 seconds after the machines were removed and previous brain wave activity was zero for all intents and purposes.
I had medical power of attorney so the last thing you can do for your parents with them having given you their wishes is accede to that and by damn I did. My mother couldnt do it of course and thats the reason they left their favorite hardass in charge of this particular item in their lives. I didnt hesitate and they knew I wouldnt.
The other sibs considered me to be killing Dad but its what he wanted. No goddamn machines he used to say and I let them come in and say their goodbyes and then they removed them and he was gone.
Well Mom started to go almost immediately after that. Hers was of the left lung. CEA count was 200 plus for months prior to the diagnosis. But she did nothing about it due to Dads condition. Squamous cell type and she did have a good time for a couple of months and then it started to take her down. Pneumonia of the worst order and then the death rattle set in. I was sitting with her and the professional sitter came in and I left to go home and be with my family. But I went to the house early the next day fully expecting that I would find her gone.
Gone she was, to the hospital. My sister had come in, scooped her up and taken her in. So I go upstairs to the ICU and find every damned device known to dying man dripping, breathing and suctioning her and a really pissed look on her face. She couldnt talk because she was intubated and they had started Ticarcillin on the drip. Death rattle one day, improving the next. She came off the tube the next day as the stuff burned the pneumonia out. But the cancer remained and continued to grow. I asked her if she had changed her mind about the DNR but no, and she was pissed that she hadnt gone in the night. She wanted to know where in the Hell had I been when she needed me to ensure that it didnt happen. I told her the professional sitter had been bullied by my sister and there wasnt much she could do.
Unbeknownst to me, my sister intervened apparently as her heart rate dropped to 15 and started seizing when she came in after me. Some people cant watch that kind of stuff. Try combat for six years, its sometimes merciful to get a bullet as opposed to natural causes. Family members shouldnt be around for that as the reaction is natural to try to do "something." I would have just pushed a little more morphine on the pump to ease that and let her go.
So for two additional months she got to hang around and slowly started going again and that included the pain of lack of oxygen from onset of pneumonia again. She hauled my sister in with me and told her in no uncertain terms that it was her time and that there werent going to be any "unconscious" hauldowns to the hospital. So the spiral began and then finally she went, in her bed and happy. She was surrounded at the time by the family, friends and thats the way I want to go too.
But here is something to consider if your family is not of a like mind. My sister as the mortuary came to get her gave her parting shot to me, "You killed mom just like you did Dad." She of course failed to understand that the cancers were taking them in a really bad and messy way and that I had nothing to do with it except to ensure that there was no extension of that process. Its tough and I feel for you brother. Talk it up with family and friends even if you do nothing. It will make it better on you. How you handle it should be a group decision as much as possible and in accordance with your Dads wishes. But you do what he tells you to in this matter. Its the last thing you can do for them and they have given you so much to get you to where you are today. You will feel like an orphan afterwards. The rocks that were behind you growing up will be gone. You become the new rocks for your kids and family to lean on.
If you want blow off some steam or talk abut it you can hit me at memphisservices@bellsouth.net. It wont lessen the blow but maybe the sting a bit. If you have kids and a wife, hug them a little harder and this my friend will make you appreciate them all the more.
May you find peace in whatever decision you make.
Thank you both ever so much for your kind, thoughtful, and practical responses.
Mr. Kruger, I'm a daughter, but I was my mom's favorite hardass ;) and my brother can frequently be brought to see reason as well. We'll see what we can do. Thank you for extending the offer of talk.
"how we are going to ration scarce high tech medical resources in a pandemic"
Well I suppose our elected representative dictators would have to decide that. In ranked order, I suspect they would nominate:
1) The decision makers.
2) The medical personnel who administer that care.
3) The military, to keep order.
The rest of us will have to take our chances...
Kudos,Randy.
As my Hispanic friends say,you have earned many stars in the crown you will wear in Heaven. If you so chose,of course.
I knew that I had done a good job raising my brood, when they sat down a determined to keep his patients alive cardiologist,and told him in no uncertain terms to "cease and desist" when their father(by then my ex)was intubated, and had no brain activity.They were 17-28 at the time.
Only a few minutes after he was extubated,he was gone.
As an ICU nurse,I have seen many family fights over end of life issues.
Get it in writing, and be sure to have a clear minded person with medical power of attorney.
And, talk,talk, talk with your family about your wishes.
Hospice is a good thing,speedwell. Even if your dad chooses not to leave the hospital, he can still be a hospice patient. They will back up his wishes, and if he wants to go home, they`ll help to get him there.
Sorry for the gender mix up Speedy-My prayers go out to you and hope that your father can go with the dignity that he deserves. Hell, we all do.
Speedwell, my condolences to you. I also have an inkling of what you are going through as I lost my Dad a few months ago aged 94, and my Mom a couple of years ago in similar circumstances. BTW, my Dad was a 1918 flu survivor as a five year old. He was in Sick Kids in Toronto and was given last rights, but pulled through somehow. It left him with a permanent hearing loss from neurological complications, but I hope I have his resistance genes!
Tom, of course you nailed it on the head, as you often do. Given the case load in a Pandemic, the system will be overwhelmed quickly, and genetic screening will be an impractical luxury at the time. And imagine the implications if we're screened ahead of time. Here in Oz, they will setup "fever clinics" (according to the paper plans) so victims are kept out of the hospitals. Where the clinics will be located and how they are staffed is still up in the air, I gather.
Well said TomDVM and bar. I venture to say though there are people who believe survival of the fittest is appropriate in many a scenario.
BTW RobT, don't go to one of those fever clinics, you'll never get out. Better to lay low and take your chances at home.
Lea,
Our plans are for Shelter In Place (SIP) at home and preps have been made accordingly. It is vital that infection is avoided at all costs in the first place. The fever clinics will be killing fields if the CFR is even anywhere close to current rates.
Good to hear RobT, good to hear.
We will all be our own best or worst enemy when the time arrives.
A sentence from a book I'm reading: "When the motion is chaotic, it can be neither predicted nor controlled".
Interesting how this one sentence had me gravitate towards how people would/will react to a pandemic and how the H5N1 virus is having its way in spite of efforts to corral its spread.
Lea: I don't know what book you are reading that says "When the motion is chaotic, it can be neither predicted nor controlled", but it's not true, or at least it's only half true. The predicted part is true in that a hallmark of a dynamical system behaving chaotically is that it exhibits sensitive dependence on initial conditions (many non chaotic systems do, too). But there is a large engineering literature on controlling chaotic systems, so the second half is not true.
Chaos theory in a nutshell Revere. Without constant "supervision" of a situation, it will continously spin out into the fractals. Newtonian dilemma.