Arnold Kling  

My Ongoing Frustration

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I'm back home, a thousand miles away from my father. But he had another setback, and he is back in the main hospital.

I am not expecting any miracles. I know that the clock has been ticking ever since his cancer diagnosis. My frustration is with trying to get the system to share my goals. It feels like when I fell for the rebate scam at CompUSA. At that point, nobody was empowered to give me what I wanted, which was fairness--even an apology would have made me feel better. Instead, everybody did their job, and I got nothing.

Similarly, what I want for my father is the best possible combination of dignity, lucidity, and absence of pain. The operative word is possible, because what is attainable is limited. Moreover, there are trade-offs among these goals.

But what you deal with are people who are doing their job. For example, the cardiologist's job is to make sure his heart does not give out, even if it means he lies on his back for so long that the prospects for restoring diginity recede. Everyone wants to shunt him around, giving him more Hansonian medicine, which detracts from his ability to remain lucid.

For the larger goal of trying to do the best with his remaining life, nobody is in charge and nobody is empowered. Particularly in that big hospital. I'll probably be back there soon, but I don't know what medical decisions would best serve our goals and I don't know how to get the system to work for us.


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TRACKBACKS (1 to date)
TrackBack URL: http://econlog.econlib.org/mt/mt-tb.cgi/794
The author at EclectEcon in a related article titled Asymmetric Information, Bureaucratic Health Care, and the Principal-Agent Problem writes:
    A very touching post by Arnold Kling, describing his frustrations in trying to look after his father.
    I am not expecting any miracles. ... [W]hat I want fo...
    [Tracked on January 30, 2008 3:46 PM]
COMMENTS (26 to date)
Troy Camplin writes:

This is one of the big problems with Western medicine. Doctors are well-trained to deal with the body, but they have no idea how to deal with the soul. And it has been shown time and time again that when you deal with the person as a whole rather than as body parts, the patient does better and lives a longer, healthier life.

Sorry to hear about your father. My mother died with cancer in 2001.

Ron writes:

As someone who has been in healthcare for 20+ years on both sides of the bed I can tell you there is no easy answer. The "Healthcare Team" has no captain, in theory your primary care physician is "supposed" to coordinate care but that does not happen. The duty invariably falls to a family member. A critically ill patient, ideally, should have a family member present at all times asking questions and being aware of what is being done (the care plan), if you don't understand the answers ask them to explain. The difficult part is to be involved but respectful and friendly not overbearing or angry, even when it seems justified. The staff very quickly starts avoiding the patient with the difficult\angry family member. Unfortunately, the patient without a family member may get lost in the shuffle, many hospital units are understaffed. Also, the occasional box of chocolate doesn't hurt.

The key unfilled position in healthcare is the individual patient care advocate, i.e. team captain, the demand is there but not the money. Personally, I think this is a key position and is necessary but not sufficient in reducing healthcare cost.

In closing if your dad is post op hand washing is MANDATORY before any staff touches him, oddly enough doctors are the worst offenders.

Flash Gordon writes:

You get the last laugh on CompUSA. All their stores are closing and apparently the whole company is going out of business.

I think the answer to the health care problems we face is more free market and less government. About eleven people in the country agree with me.

Alex J. writes:

You have my sympathies. We have been doing some hospital shuffling ourselves, though not in circumstances as dire as yours. It seems as though every doctor has exactly one gear for dealing with patients and that gear is set to minimize any possibility of lawsuit. They don't account for our worrying, and the untold hours we've spent in waiting rooms

Buzzcut writes:

Hansonian medicine, indeed. When your father went for that useless X-ray and fell, that was the DEFINITION of Hansonian!

My buddy's 70 year old father-in-law went to the hospital for a minor infection, and never left.

My thinking is that you don't want to get involved with the medical system if you don't absolutely have to.

Of course, this from the guy who got LASIK last month. But it may have been different for me because I was paying the bill, not the insurance company.

alexa-blue writes:

Have you asked for a palliative care consulatation? Not all hospitals such a service available, but most big ones do (often staffed by an NP rather than an MD). They specialize in comfort care like you are talking about, but tend to be underutilized because both doctors and families feel like calling them in is giving up, or incompatible with curative care (it is not). Also, Robin Hanson likes them.

My condolences for a difficult situation.

Chuck writes:

Best wishes for you and your father.

Rue Des Quatre Vents writes:

I'm sorry for your frustration. It's hard. I recently dealt with similar circumstances. My father passed away last week from emphysema, and the couple of weeks he spent in the hospital leading up to that were extremely frustrating.

What disconcerted me most was how little information flowed around the hospital. Late in the evening on a Saturday, after his regular doctors had gone home, the residents decided to move him out of the ICU. But once they moved him, his oxygen levels dropped, and he started to panic. The residents rushed in, and I heard them asking him, "What medications are you on?"

And I remember thinking, "How do you not know what medications he's on? He's been in this hospital for two weeks. You moved him when you shouldn't have. And now you expect a man short of breath and in panic to tell you what meds he's on?"

This hospital is very well funded, and yet I've seen workers in 7-11s with faster ways of handling information about their inventory.

Bill writes:

I strongly second the recommendation for a palliative care consult. I would be amazed if BJC doesn't have a program. I work in a large teaching hospital where the problems you describe can and do occur, but not always and not even usually. A strong palliative care program can make subtle, but significant, shifts in the entire system.

Floccina writes:

Old age is mostly not treatable - Medicare is the stupidest program imaginable!

Medical care for the elderly yields the least bang for the buck of any medical care.
Since it is only part of the market the program has little ability to control costs.
Free care for mothers and infants would make far more sense.
I believe that the program started because the medical establishment was stealing the patrimony of America but the program did not address the problem, it just shifted the payment to the tax paying population.

Medicare allows the medical establishment to take over people lives as they near the end and thus IHMO does more harm than good.

http://un-thought.blogspot.com/2008/01/old-age-is-mostly-not-treatable.html

save_the_rustbelt writes:

Call a family meeting with the lead physician and have a discussion about hospice, which is meant to prevent over-treatment and to preserve dignity. The hospital may well be the wrong placement.

Hopefully dad has made his wishes known orally or with a living will, and hopefully the family can reach consensus.

Very difficult and heart breaking. Good luck.

bingo writes:

Arnold:

Sincere best wishes for your father's plight and your sorrow and frustration.

I have been a physician for 22 years. I am a specialist, but of a different sort. My area of expertise does not overlap with other specialists per se, and is not one in which a primary care doctor can participate. As such I am always a peripheral service, at the end of a spoke and not at the hub of care.

It is definitely the role of the primary care doctor, the internist or family practitioner, or in the case of the inpatient in a teaching hospital the hospitalist, to be the "hub", to coordinate care with all of the specialists and to communicate with both the patient and the family. The primary care doctor (PMD) is charged with directing care, education, and services. When the time comes the PMD is charged with the task of directing end-of-life care. Notwithstanding the negative comments above and on Techcentral, the great majority of PMD's do just that. Your issue is first and foremost with your Dad's "no-touch 'em" PMD.

What to do now? Hospice and palliative care. Take him home. It's not about curing disease now, it's about the ultimate healing, comfort, and dignity.

Lots of sympathy.

Great description of what it's like dealing with hospitals and such at times like this too. Who's actually looking out for the patient's well-being?

dearieme writes:

Best wishes: we went through a difficult time with my in-laws. I know that a National health Service is not the answer, unless you want a hospital infection to carry the old boy off.

Lauren writes:

Arnold's economic point highlights an interesting Hayekian tension:

For the larger goal of trying to do the best with his remaining life, nobody is in charge and nobody is empowered.

For which kinds of economic entities does division of labor break down? Why is it that sometimes having no one individual in charge is the economic ideal that is coordinated by the invisible hand, and other times not?

The usual answers are that something about families and something about firms makes them congeal as economic units, despite the advantages of division of labor.

A recent EconTalk podcast, Munger on the Nature of the Firm, offered a detailed exposition of how firms can overcome the natural disadvantages. Coase's observation that transactions costs make it costly to use a price system is the crux of the matter for firms, making wiggle room for a manager who is actually compensated.

But is that enough to explain families? Arnold's frustration with no one centralized other than himself to oversee his father's care is certainly an example of the costly nature of the price system as decentralization occurs. Is the compensation we receive as caring family members--emotional and bequeathed--analytically comparable to the compensation received by the manager of a firm?

Certainly an emotional component isn't generally modeled for a profit-maximizing firm and is assumed to be approximately zero by the forces of competition. But on the flip side of that: can we think of the emotional component that appears to be so strong a motive within the family structure as modelable "as if" it were compensation for a manager within a firm? Likely so.

Maybe in a future world we'll be able to hire out at least some portions of the family's traditional medical oversight role that has so frustrated Arnold (and that I envision frustrating me in the near future, as my own parents age). If you are young and looking for a great idea for a company, this seems like a promising line for entrepreneurial ingenuity. Steven Cheung's 1983 paper, mentioned in the podcast, suggests that in the right circumstances, even all those medical doctors and people doing just their jobs might even welcome some professional, coordinating oversight.

M Williams writes:

I agree with alexa-blue -- I hope you can find a good palliative care specialist, whose JOB is to manage pain relief with lucidity, dignity, and other quality of life measures.

Barkley Rosser writes:

Arnold,

Very sorry especially for your father and also for you that you are having to deal with this very difficult and painful situation. My only comment/question would be: does your father have a Living Will, and if so, is it relevant and has it been brought out to bolster you in any changes you (and he?) would like regarding his care? All the best, and deepest sympathies.

Jim Ancona writes:

Arnold, I'm so sorry to hear of your father's illness. My wife is a hospice nurse and unfortunately your father's story is not uncommon.

I would echo some of the other posters and urge you and your family to investigate hospice. Hospice is not a death sentence--instead it focuses care on keeping the patient comfortable and enabling the best possible quality of life for the time he or she has available. At its best, hospice (and especially the primary nurse) empower the patient and family by providing the knowledge and support they need to take control.

Jim

LemmusLemmus writes:

I have no good advice to offer.

May your dad get well if that's possible. If it's not, may he enjoy the rest of his days. All the best to you, too.

Your post made me think of my grandma who died last year in an old people's home of old age. (I don't even know the official cause of death.) It's not easy to maintain your dignity if you're pissing in your pampers every few hours, but at least they let her die when time was up instead of sticking all kinds of needles and whatnot in her body to keep her "alive" for another month.

Eric H writes:

My father also died of cancer a few years back. We were fortunate in that the doctor promoted an experimental medicine that improved his quality of life for the last few months and he actually got to where he could walk on his own to the donut store around the corner (a double victory, given his sweet tooth). My sympathies - the desire for dignity may be the hardest and most important of your goals.

Snark writes:

Arnold,

My sincere condolences. In-home palliative care for your father (if circumstances permit) sounds most appealing.

Gary Rogers writes:

My prayers are with you, your father and your family. Having lost three out of four of my wife's and my parents and my wife's mother in a nursing home, I know it is not easy.

With my father, I know we were lucky because we were at a small town hospital here in central Indiana where government influence is less prevalent. The more government is involved the less common sense and local empowerment can be found. I thank you for your work in proposing health care alternatives that make sense.

RPM writes:

As I write this, I am sitting by mother's hospital bed, and she is dying of cancer. It has been a little over a month since we got the diagnosis, and she has been in this hospital for ten days now. I'm sorry that you have had such a hard time with the medical care. For the most part, we have had the opposite experience. I think we've just been lucky in the lead doctors -- the oncologist with whom we started, and now the palliative care specialist to whom he has passed primary responsibility. These days are grim and difficult enough without feeling that the doctors are not quite on your side.

Greg writes:

My sincere sympathies. I just went through this weeks ago. I cannot emphasize enough that palliative care is essential (assuming the prognosis is clear).

Palliative care in Toronto's local hospital was excellent, sympathetic, and humane. Nothing is perfect, and the pre-palliative care period was frustrating. We would have preferred a specialized palliative care unit.

We also received good advice there on DNR orders - note that a Living Will may not be enough, making DNR orders explicit is essential. In the case of a health event, without this, there is a high likelihood that the staff will swing into action and take extreme measures - that is what they are trained to do. This means ICU, and that is far worse for everyone (I have been through this as well).

The best to you and your family.

edwardseco writes:

Sadly. I experienced this lack of central purpose in medical treatment first hand last year. Its not that anyone involved wanted to be cruel. In some ways it was a collective madness that spent a quarter of a million dragging out a couple of extra days while the patient only wanted a death with dignity. Tyler Cowan argued in a talk at the Milkin that those end circumstances preclude rational thought. Still, its my deepest regret that my mother didn't get that dignity..

seldon writes:


Your father has the right, no, the OBLIGATION to tell the cardiologist "No, I don't want more treatment, I want my dignity". Yes, they all tell you what they can do, as well as the sideffects that will result. But the final decision is yours (or, would you rather the state decide what's best for you?!?!?).

You are complaining because there is not someone out there making these tough decisions for you. You have decide: do I take the medicine that makes me groggy all day but has been shown to extend life, on average, by one year? or do I not take it.

Life is full of tough decisions. These are one of the toughest, but you gotta get with it and deal with them!

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