How Medical Ethics Committees Became Divorced from Patient Care
Who are the ethicists?
This question reminded me of the New York Times Magazine column and (former) podcast, The Ethicist(s). Essentially, people describe their ethical dilemmas and are told what to do.
Sometimes, the ethicists (now one ethicist) give their stamp of approval to an otherwise unethical act that would serve a greater good. The motivating principle behind the caller’s proposed course of action is that they want to help. It’s for a good cause, and it’s certainly the lesser ill. After a brief discussion, the ethicists absolve you of the unethical act (something like lying to keep an alcoholic sober). And it’s settled. Now, if the situation backfires on the caller and consequences befall them for that unethical conduct… the ethicists are consequence-free. They did their job.
Is this how medical ethics boards work? An ethicist makes a decision about how to proceed with an ethically wrought situation, and then they leave the treating physician and patient to pick up the pieces of their mistakes?
I asked myself, does this happen in medicine? My question was partially answered in an article titled “When Ethics Leans on Jargon Patients Often Denied Choices” by physician-turned-chef John La Puma, MD. He wrote:
“If medicine is conducted as a war on disease, then bioethics … is a disarmament movement.”
“To get the real answer on your difficult case – baby on life support, medicine off formulary, provider out of network – ordinary people can’t just talk it through with their family, or in their church, or with neighbors or friends. They have to go to a committee – an ethics committee. Or to an appeals mechanism. Or to another institution, sometimes not even in the same building or town in which their loved one lives.”
He brilliantly describes how the medical ethicists linger in the halls of Congress, between testifying at hearings and presenting at conferences. They “serve medicine and ethics, but not patients.” His descriptions conjure up a behind-the-scenes mastermind to me – the fictional “reasonable man” about whom I learned in law school, or an Aristotelian good man. This man – The Ethicist – has divorced ethical decisions from patient care in a decisively clean way. Hard choices are made by ethics committees, while “everyday doctors” partner with their patients to embrace the consequences of those decisions.
Picking up the pieces often falls on PTs
How are providers to help patients whose appeals and claims have been denied?
Patients often find their PT benefits cut-off by insurance long before other, less useful benefits expire.
Imagine you’ve been treating a chronic patient for four months when his insurance company denied his appeal for additional physical therapy. The ethics board decided that his Parkinson’s is chronic and will not be remedied by more therapy. Physical therapy isn’t making him better; he’s shown no improvement. You wonder how they couldn’t understand that PT is helping him from getting worse. Your patient is frightened and distraught. He can’t afford your cash-pay rate, and you can’t treat him for free. It’s fallen on you to pick up the pieces for a decision that you find ethically revolting and with which you disagree. You need to address his emotional needs, his ongoing PT needs, and the needs of your practice.
There may not always be a clear remedy when your patient is denied continued care from you. You and your patient want one thing: to keep things the way they are. But as you help your patient come to terms with an ethics or appeals board’s decision about his care, you do have options if you’re willing to get creative.
Here are a few things you could try:
1. Suggest that your patient find an attorney to navigate the healthcare claims appeal process. Your patient may also wish to contact the physician who prescribed PT and ask for their assistance through this process.
2. Suggest that your patient seek out need-based grants or services for which he’s eligible due to his diagnosis. For example, a large hospital system may offer “charity care” services where he could continue PT with one of their therapists.
3. Identify other services from which he may benefit but which cost significantly less. Have a list of referrals and recommendations ready, and ask your patients what’s helped them outside of your clinic. For example, this may include specialized massage therapy (i.e., a Certified Pediatric Sensory Disorder Massage Therapist may help your pudendal neuralgia patient desensitize her nervous system) or ailment-focused yoga classes (i.e., a Yoga for Pelvic Pain class may provide a gentle alternative to PT-based stretching). Be willing to remain in contact with your patient to provide reassurance until he can resume PT.
4. Recommend that your patient carefully review his insurance benefits. Have they cut him off for all PT, or just PT for his Parkinson’s? Does he have OT benefits available? If so, can you get an OT up-to-speed on his progress and your treatment approach, such that he could maintain some of his gains?
5. Encourage your patient to consult with an insurance broker. How near is January 1st, when the new insurance coverage year begins and benefits reset? What about open enrollment in a marketplace plan – might another plan benefit him more? Does he qualify for any government-sponsored plans?
And while it won’t help this patient, you may wish to get involved in PT advocacy work that advances the autonomy of PTs, removes limits on the number of PT visits per year, or provides artificial definitions of “better” that dictate whether treatment continues.
If you have questions about how you can better support your patients through this process without violating your practice act (i.e., without getting accused of dumping your patient or, if you continue to provide cash-based treatment, of overtreating them), you may find it helpful to chat with a healthcare lawyer. Email me at firstname.lastname@example.org with any questions.
For further reading:
John La Puma, M.D., When Ethics Leans on Jargon Patients Often Denied Choices, Managed Care (July 1999).