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This was too tough (or insufficiently interesting) for people to reply to by name, so I thought I'd try a poll. After a bunch of responses I'll post what happened (again, this is a slightly fictionalized actual event, and one representative of issues faced daily on the front lines of the health care system). Feel free to ask a question, too. How could anyone make a choice without knowing what's likely to occur?

Mrs. Mary Anderson is 63, and has a widely metastatic cancer, which has failed first, second and third line treatment. Tumors grew through it all, and she got progressively weaker and more bed bound (too bed bound for chemo--makes things worse at a point), rapidly losing weight, scans show liver almost completely replaced by cancer with many other metastases. She comes in seriously ill, low blood pressure, with possible infection and kidney failure and is admitted to the ICU (probably inappropriate at all, per me, but difficult to stave of without prior planning). There, broad antibiotics and pressor support reverse the decline briefly, and she comes out to my service. Off pressors, she promptly begins to decline again. No specific source of infection, just appears to be dying of metastatic cancer. Confusion increases. Kidney failure is the most measurable failing organ; it becomes severe in days and unsurvivable for more than a few more. The large, loving, and involved family wants to donate their kidneys to the dying person. Or they want dialysis. They want to return to the ICU. They even want chemo. What do you do?

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--Ian

I feel very strongly that you have to explain that death is inevitable and provide the best palliative care possible, but it's hard for folks to accept. I am unclear about whether dialysis and no ICU might be a measured response. Is this patient unconscious? In pain? Likely to experience unmanageable pain if she survives much longer?

1. ICU, kidney transplant, chemo, the works
I'm guessing the prognosis here is actually a pretty hasty and expensive demise. Is she even stable enough for a kidney transplant? Might the drugs given to stave off rejection accelerate her cancer? Would a new kidney survive chemo? I wouldn't seriously consider this option, but I'm just wondering on how many levels it is a bad idea.

2. ICU, dialysis
With an almost but not quite non-functional liver, she could last weeks, months? Expensive, not a lot of fun.

3. offer ICU, but no dialysis
Well, without dialysis, what's the point?

4. offer dialysis, but no ICU
With dialysis and no ICU, how long is she likely to last?

5. offer maximal conservative care on the floor
I don't know what this means.

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Mike

"1. ICU, kidney transplant, chemo, the works
I'm guessing the prognosis here is actually a pretty hasty and expensive demise. Is she even stable enough for a kidney transplant? Might the drugs given to stave off rejection accelerate her cancer? Would a new kidney survive chemo? I wouldn't seriously consider this option, but I'm just wondering on how many levels it is a bad idea."

This isn't even a consideration, as you outline. Transplantation takes a while to set up; in a sudden liver failure we can rush it and save a rare person who's otherwise well, but generally it takes at least weeks to months. There's a need for psychiatric and infectious disease reviews of what could go wrong on the meds, there's multiple tests, preoperative "clearance," and the person has to be able to tolerate a major surgery. This individual's kidneys are only failing because she's dying, and surgery would kill her, the organ wouldn't likely work if she didn't die, and if everything went great infection would ensue rapidly and she'd die of her cancer shortly anyway. This comes up only because in the USA we talk about doing everything and so families want everything as a way of showing how much they care. It makes having discussion about realistic options that more difficult because people start off with not unrealistic expectations, but wholly impossible ones.

Oh the chemo. Forgot the chemo. Chemo is poison. It's hard on you (some more than others; there are some oral options that work a little, and there are special circumstances with drugs that are growth inhibitors with relatively few side effects). People are not candidates unless they are generally well, and then, you have to wonder what the result will be. For example, in the bad cancers, like pancreatic or metastatic lung, you're looking at prolongation of life by a few weeks or a month or two. In some situations people with certain types of lymphoma or even metastatic breast, colon, or pancreatic cancer, therapies can keep people alive and functional for months to even many years. Chemo can cure acute leukemia (in kids, it usually does, whereas a few decades ago it was 100% fatal) and new drugs can keep chronic leukemia at bay for who knows how long. It's a bit like the progress against HIV/AIDS. These are wonderful therapies and we are beginning to see the era of living with cancer rather than dying of it. I am in awe of what the oncologists can sometimes do. This patient has sequentially failed sequentially less effective therapies; there is nothing she can take for this disease, even if she were entirely well apart from the cancer when it started. Again, a complete disconnect with what the family wants--and why they have no idea what's possible after several failed chemo cycles and years of illness I have no idea.

"2. ICU, dialysis
With an almost but not quite non-functional liver, she could last weeks, months? Expensive, not a lot of fun."

We're notoriously bad at prognosis, and I think it would be fair to say she might be closer to "days to a week or two" than "hours" because she responded to pressors before, but the body is rapidly failing, and nothing can change that. This is the American death: huge costs (financial, as well as born by the patient) for a few more hours or days of life in the ICU grievously ill (often at advanced age). Outside of the hospital, most of us ignore our health, and millions can't get basic, cost effective, preventive care. It did take internship to teach me that there are things worse than death, and that prolonging life is a laudable goal--but prolonging dying is often a disservice to the patient.

"3. offer ICU, but no dialysis
Well, without dialysis, what's the point?"

Maybe the other care helps the kidneys recover? I agree, not something I would recommend, but one could reason, "maybe if we fix some other intervening problem she could go back to stability for a while." This would be the key potential indication for the first ICU stay she had.

"4. offer dialysis, but no ICU
With dialysis and no ICU, how long is she likely to last?"

Again, largely out of our hands. We support a failing organ but don't fix the underlying problems, and we're still looking at a few days, if we're lucky then she could live a week or two at most.

"5. offer maximal conservative care on the floor
I don't know what this means."

Excellent question... this would mean, let's offer noninvasive care--fluids, nutrition, antibiotics, things like that. But let's NOT put a dialysis catheter in her neck (this is no IV line; it's more like a sharpie or other marker in thickness, and she's not well enough to sedate--scary plus pain). I don't think this is unreasonable. A lot of people would go for this--it's a way to do "everything" that's not too burdensome. The thing is though, it's mostly a show. It's like putting out a 3 alarm fire with a garden house. It may serve as a demonstration of care, but rather than recommend something I know won't work, I usually advise we show our care in other ways. For example, most people don't say they want to die getting maximal conservative care in the hospital. Most people say they'd like to die at peace, surrounded by family, without a lot of medical fuss--so why not give them that (or whatever it is, including being at a hospital, but with appropriate resource use)? Further, some of this care may be harmful. Fluids seem humane but often increase secretions and can lead to gagging. Food seems humane but can cause distention and cramps and pain when a failing body is fed food it no longer needs or wants (there's a reason we lose our hunger). Care that causes harm for the purpose of showing care to me speaks of 1) a lack of preparation 2) a lack of familiarity with the risks and benefits 3) difficulty facing the issue directly.

A family from another culture crystallized the issue nicely for me one time when they requested fluids, nutrition, and antibiotics for a dying matriarch. I explained that these things would hurt and not help and why, and they said quite simply that she would be dead soon and their duty was to help and that means doing something and if that something was harmful, no matter, because they cared more about feeling that THEY tried everything rather than what her outcome was. This was another informative story because I will NOT deliver care I know is riskier than helpful, and yet, I managed to meet their requests. In this situation let's just say a soft block worked far better than a hard block.

addendum: astute readers might be wondering what the difference is between maximal conservative care and fluids and antibiotics might be. These are all artificial distinctions I whipped up, as even with chemo and dialysis the dose can be varied. But two things might be that 1) sometimes medicines necessary for pain can lower blood pressure and respiratory effort and that can hasten death (which is never the goal, but in dying people it does happen, and is viewed as acceptable by every ethicist and religion I know of), so one could withhold pain medication to prolong life and 2) some "ICU" drugs to support blood pressure (pressors) can be given in low dose on the floor, in some situations, so if someone wanted to try some dopamine to "do something" without addressing the underlying problems, that would be an option.

I hope this is illustrating the futility in spelling out all your wishes on paper. It's fine to try, but there is no way to capture all potential situations and options. A statement of general goals and specific examples is a good start, as is a next of kin who cares (but not too much).

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--Ian

Whew....heady topic.

Aside from a flip comment about animals often having it medically easier when faced with the end the only thing that comes readily to mind is something an old teacher once said which stuck:

"Nothing honours a good life more than a good death."

That said I'll cast my vote now.

Many thanks.

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Chris

We've got some votes now so I guess I'll describe what actually happened. As the patient worsened and wasn't really alert enough to understand the situation, I included her as much as I could but mostly dealt with family. They wanted to push more than her, anyway; usually the patient knows what's going on. I explained the steady decline off intensive support meant she couldn't live much longer, regardless, and that hospice was appropriate. They were not ready for this, requesting the transplant, etc. Much time was spent explaining why that would be harmful and was not an option and suggesting they look at the menu of feasible things rather than hypothesizing on their own. They did want dialysis, which I explained we would not offer. Dying of kidney failure is actually as pleasant as it gets. Thus, if you dialyze someone who is dying, your guarantee them a worse death. They did not view this as a blessing, so I asked a colleague from nephrology to come explain why dialysis was not appropriate, which she was happy to do. They then requested an ICU transfer as she inexorably worsened, which I explained was not appropriate, as ICU is a bridge to improvement and not a place just to die when it was unavoidable. They were not satisfied with this answer, either, so I had another colleague from the ICU come and talk to them about why they would not be taking the patient for intensive care.

Interestingly, the patient's son was a cardiologist, who previously had been 100% in agreement with this strategy, understanding the futility of intensive care and the decreased quality that would come with it. However, his family asked him for more ideas and he wanted to try dopamine, a pressor, which we can give a little bit of on the floor. Suddenly he developed a disconnect; he actually said, "Oh, I know that in this situation, it is uniformly ineffective and doesn't fix the underlying problem, and I would never suggest that a patient receive it. But this situation is different because I think my mother might actually benefit from it." It is difficult to do the logical appropriate thing when family and love is involved. I ended up agreeing to run a little dopamine on the floor as the patient was dying so the family could have closure with the idea that they "tried everything available." Incidentally, if dopamine ends up outside the IV, it can kill the skin and cause limb loss. I was caught between the inadvisability of using the drug (cost, pointlessness, risk) and strong desire from the family (and their peace of mind was a very real issue too; rapport with them is also key for getting other things done for the patient--we want everyone to feel happy). I decided to use a lowish dose knowing that the patient was very sleepy and could have pain from any leaking dealt with easily with morphine.

I encouraged them to stay by her bedside, sleep over, bring in things from home, play her favorite music. A religious figure was suggested and visited her. Things would have been more peaceful at hospice, but they had not been dealt with directly enough in the preceding many months and could not make this transition in time for the patient to benefit. She did die peacefully in the hospital surrounded by family. What more can we ask?

We could have let them make all the decisions, but then, they did not have the skill set or objectivity to do so, and I needed to guide them toward the best management. It would have been inappropriate both for the patient and for the health system, in my view, but it's a fair bet my institution would have been paid more to overmedicalize her inevitable dying. I grow immediately furious with people who overtreat because "it's the only thing we can do for her" or because they simply can't be honest enough to face facts. There is ALWAYS something you can do: treat symptoms, comfort with your presence, answer questions, provide peace. Those who want everything done to their patients are far too often unwilling to watch the painful result OR even spend time with the patient and family during and after the dying process OR leave their pager on for difficult conversations at all hours. But no person should have their doctor's fears and inadequacies affect their best care.

This is just my approach, but I draw on many experiences with good deaths and many experiences with horrific, costly, and pointless ICU deaths.

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--Ian

Will a patient's insurance pay for treatment that can't work or treatment for a patient that won't survive, regardless of what is done for them?

How many doctors will go along with such treatment in order to "pad" the bill to insurance companies or government health care. And will the hospital go along with such inappropriate care if the patient has no insurance! (Not sure if our government picks up all tabs for those without any insurance)

BTW - This discussion should be required reading for all!

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GEM
"Do or do not. there is no try!"

There's an old joke that's worth telling now.

Question: Why do they put nails on coffins?

Answer: To keep oncologists from treating the dead.

Of course that's a gross exaggeration. However it does point to a small number of adventurous doctors who want to experiment on the dieing in order to come up with the next greatest saving therapy. Often it can be extremely expensive and add life, but not when measured as QALY (quality-adjusted life years). In other words, the side effects of the therapy will make you wish you were dead.

There ARE fraudulent MDs everywhere, and in every branch of medicine. Thankfully they're in the minority. However it's estimated that as much as 15 percent of health care dollars are for fraudulent activity from any source (MD, patient, etc.).

I do not deal with dishonest MDs. Conversations with them don't last very long. In my line of work however I have regularly provided information on "outlier" MDs to fraud units, which have done everything from recover inappropriate billings and halt inappropriate activity to put some in jail. Just how have a handful ended up in jail? Billing for more than 24 hours in a day, being involved in swoop-and-squat schemes, dealing in narcotics, having a non-licensed identical twin cover for the MD twin, etc. "It" happens. But not very often.

- Bill

George, insurance is a funny thing... in my case, patient's insurance pays for a hospitalization Diagnosis Related Group or DRG, one lump sum for the condition which mostly describes their hospitalization. Get the patient with pneumonia in and out in 3 days at little cost? You keep the difference. Screw up or get unlucky and they're sick on your service for 4 months? You pay the difference. This incentivizes hospitals to upbill, and I don't mean illegally. I know that when a patient gets a fever from their pneumonia and their heart rate passes 90 per minute, wham, they now meet criteria for sepsis, which codes for more $ for the hospital. All hospitals I know of (except the VAMC, because they don't bill people) pay people to run around and upcode admissions and ask doctors if they can write "moderate malnutrition" on the next progress note. This is just getting paid for the work we do, and it's an expensive game. An example of how much of the money we pay for healthcare doesn't go toward wellness, just people running around doing paperwork.

Short version: depending on the details, this patient probably would have stayed within the same DRG for her hospitalization and any increased work I did would have simply come out of our margin. Potentially, especially if she came in to me and not the ICU at first, we could upgrade her DRG by sending her to the ICU and "doing everything." This may seem silly but in the past people just kept patients in hospital to keep billing by the day. Additionally, we have people running around telling us that our patient won't be "hospital level" and a bean counter will push for discharge, unless we give an antibiotics IV instead of orally or something. It's interesting. Sorry, that wasn't short.

Outpatient, it's even more complicated, because then insurance does pay for what happens, so they introduce things like prior authorization forms, which doctors hate and view as preventing care to save money, which is exactly what they are. This is, however, often appropriate. There should be a reason to do something costlier when something cheaper is as good.

People do run little scams, for example, like bringing heart failure patients into the office 2 times a month to infuse expensive Natrecor, a drug which had not been studied for use in this fashion, was not shown to improve outcomes, and was later linked to worse mortality and kidney function (debate ongoing). But they'd charge insurance for the drug (and keep some) and for doctor's visits and for the separate infusion. Natercor's makers, of course, provided pamphlets on how to do this, and provided dinners free of charge with more advice, and having had a natrecor bought physician speak on heart failure to me, I can promise you they cannot be objective. Eventually the whole thing got shut down.

That isn't what Bill is referring to which is outright fraud. Lots of people do this, from individual doctors or group practices to simple criminals to major teaching hospitals which failed to document enough to support their billing. Large fines follow. I have deliberately chosen a line of work where my $ is completely unaffected by the medical choices I make and the treatments I recommend, and I tell patients that. I do not want to worry my motivation is consciously or subconsciously selfish.

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--Ian