Monday, August 15, 2005

"A Lonely, Uncertain Road"

NYT follows some very ill patients as they try to navigate the health care system and choose treatments: Awash in Information, Patients Face a Lonely, Uncertain Road.
The doctor...recited what has become the maddening litany of medical correctness: "We're in the outer regions of medical knowledge," he said, "and none of us knows what you should do. So you have to make the decision, based on your values."

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling. "I'm not a doctor!" she shouted. "I'm a criminal defense lawyer! How am I supposed to know?"

This is the blessing and the burden of being a modern patient. A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them.

As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.
I think patients often face a confusing mixture of choices and non-choices, or false choices. Patients aren't usually allowed to dictate treatment. Some things are really not negotiable: to get controlled substances for pain or anxiety, patients must follow doctors' rules (and doctors must follow rules, also). If patients try to circle the drain in front of us, we will do what we must, and may become quite insistent about it. If you are not an operative candidate, you won't get surgery. And just try to win release from a hospital, if docs think you're likely to harm yourself (or others). Some are told, "You can either be a voluntary patient, or we will make you an involuntary patient." Some discover that they are free to avail themselves of a treatment, but that their insurance won't pay for it. They can be furious at the controlling paternalism of physicians (which is often dictated by laws), trumping their personal autonomy.

But the same patients can also face multiple treatment options. The choice of a reasonable, appropriate treatment can be complex. Sometimes there are no really good options - only options that are partly good, and partly bad, in different ways. Suppose that you couldn't survive without one of three medicines. One might make you somnolent, another may cause weight gain, and the third may make you feel ill. It's your choice. Or would you rather that I choose for you? Ideally, we choose together, proceed cautiously, monitor for those side effects, and minimize them as much as possible. We can predict certain risks. (We can usually spot a patient at risk of delirium or falls, at twenty paces.) But many risks can't be predicted with certainty. (See here, and here.)

Hasn't serious illness almost always been a lonely, uncertain road? The best doctors make that road easier to bear. But this article says that many patients feel abandoned by their doctors, and adrift in the system. It's hard to imagine a satisfying solution.


Blogger louiszu26bwclinton said...

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2:12 AM  
Blogger Judy said...

I didn't know you could spam blogs.

I've had to make a few hard choices, mostly in the area of selecting providers, not in choosing treatments. I've learned how to push physicians into making an actual recommendation when I'm totally at a loss. It's a useful skill.

7:53 AM  
Anonymous Anonymous said...

It's worse in psych stuff, because the ONLY choice the patient feels constantly aware of is "do I lie or do I tell the truth?"

The rest isn't up to them, you see. And of course, a shrink has been trained to understand the psyche--the reasons for the lying, the length of time a patient takes to build trust with a doctor, etc. But the patient hasn't been trained in those things yet!The patient doesn't know how to account for those feelings, those changes. She certainly doesn't know when she can trust the doctor not to lock her up for telling the truth about her fears, vulnerabilities, feelings. So it adds to the lonely uncertainties.

re: the "check yourself in or we will do it for you": someone should do a study on just how often Deans of Universities say almost precisely those words to their college students. It isn't small. Talk about a lonely uncertain road: the deans, with no medical experience, are afraid of suicide or some other trauma on campus, and the students are afraid of everything.

8:32 PM  
Anonymous Anonymous said...

I think part of the loneliness is the feeling that the doctor has *no idea* what the side effects of the medications/treatments feel like. It was one thing in the past to have a surgery explained to you, or to have a doc tell you that you're going to be laid up for a while; it's another to be told that you could have any of 30 side effects, and that the doctor doesn't have any empathy for just how severe those side effects are--esp. if they affect your ability to think, reason, feel emotions, etc.-- because they have simply never experienced them.

8:35 PM  
Blogger DebC said...

Shrinkette, that road is equally lonely for the families as well. It is horrifying to be a spouse trying to commit a loved one with psychosis (bipolar) only to be told by the healthcare provider that they can't be held because they aren't a harm to themselves or others. And then they stab someone the very next week. There is no easy answer I guess.

7:13 AM  

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