What can patients do?
Thursday, March 5 2009
Having criticized Tara Parker-Pope and Dr. Mintz for their contributions to the health reform debate, I want now to be more constructive. This is not a retraction of my criticism – which is still valid – but rather an effort to move past what’s wrong with their writings.
So health reform is coming, and tens of millions of patients – especially those of us with chronic disease – are going to be affected one way or another. What can we do?
1) Find our voice as patients; that is, assert ourselves as the people for whom the health care system exists. The problem is that our current organizations are too focused on charity and research, and ignore policy and justice – a problem about which I will have more to say later – so that a lot of what’s happening is happening without our input. Charity and research are important, but not more so than policy and justice.
2) Take responsibility for our health. At present we are over-reliant on doctors, which is understandable because the entire health care system is built around doctors “saving” our lives. This is a comforting fiction, but only that. Instead, we need to see doctors as partners in our effort to manage our illness and live better lives; at best they can help us do so, but it is ultimately our responsibility. This means educating ourselves about our diseases and treatment options, and insisting our doctors help us navigate those options, rather than deciding for us. It also means not expecting that doctors have a pill for every possible problem. Some things we have to do alone, without their help.
3) Learn to catch mistakes, and learn the confidence to fix them. This goes along with #2, but once when we are sufficiently knowledgeable about our disease and treatment, mistakes are much easier to spot. Preventing or fixing these mistakes before they get severe will keep us healthier, not to mention saving the need to pursue a malpractice claim later. In my own care, I’ve caught dosing errors that could have been dangerous, prescriptions that I was allergic to, and all manner of minor but significant error. Mistakes happen to all of us, and hurt a lot of us, whether we know it or not.
4) Read and keep everything. Those of us paying our own bills do so already; the rest of us probably toss or file what we get without reading it. Even if insurance pays a bill, the provider usually sends a “Statement of Account” or some such. Insurers will also send an EOB – explanation of benefits – each year that tells what they have paid for. We can use these to learn what things are, and what they cost. If you see something on your statement that you don’t recognize, ask your doctor about it. Learn what goes into your care, and what you can live without. This is especially important if you are going to switch insurance or doctors; you need to know what your new plan needs to cover, and what your new doctor will have to do.
5) Volunteer for clinical trials. This is generally a good idea; new drugs don’t go anywhere until they get tested, and the scarcity of trials subjects is a major expense and delay in that process. Of course, those are for new drugs; if health reform is going to include any effectiveness comparison of existing drugs – as many seem to think it will – then there will be a huge need for volunteers for the actual comparisons. These will be tests of drugs we are already taking (and in some cases the trials will provide those drugs free of charge). We need to actively participate in and encourage that process.
6) Learn to sew. I know: trivial. But when I was really sick, I found that sewing gave me a smidgen of control where I was otherwise at sea. One of the things I hated most was how cold and uncomfortable I was in the hospital; the gowns are always three sizes too large for me. So I made things to wear in the hospital – actually, I modified store-bought garments to be hospital-friendly. Having my own (modified) clothes spared me humiliation and gave me confidence to be more assertive and more responsible for my own welfare. It’s much easier to look a doctor in the eye when you’re not shivering or worried about exposing yourself.
That’s my short list – I am sure there are others. I intend this to be constructive, not exhaustive – so I’m open to discussion on any and all.
I do think there are things we can do – and should be doing – to help bring about a better health care system. What I strenuously reject is the notion that patients alone (or on balance) need bear the burden of health care reform. This system exists because of us, paid for by us, justified by our needs – but we didn’t design it and we don’t own it. We can help fix it – but whatever change may come, it has to be for us.
I’d like to add to that: communicate.
It is uber important to catch mistakes and keep records, and you’ve got to as smart as possible about what to do with that information.
Learn the chain of command at your doc’s office, in the hospital administration, and within your health insurance company, or with government benefits.
Know who to approach, when, and how. Experiment and take note of what gets you the best results fastest.
Those are great points for a well educated, well informed patients. A rarity in my experience. Yes, patients in an ideal world could utilize all of your points. But the poor, inter city, racially diverse area I work in, that is not happening. Health care professionals bear the brunt of helping to fix the problems in health care. Patients should take “responsibility for their own health,” but that my not be realistic for the family worried about paying a mortgage and putting food on the table. Health care professionals need to spend more time actually talking with their patients. Become partners and collaborate with what they need. It is a huge paradigm shift in how things are currently run in hospitals, but it can happen.
One more tip to add to your list: Bring a health care advocate with your to the hospital: a relative, friend, neighbor etc. Someone who can see more clearly than the patient laying in an uncomfortable bed in ass-less pajamas.
@Kairol – those are helpful additions; thanks! “Communicate” is especially important, so much that I can’t believe I didn’t mention it myself.
@Reality – my sense is that the current state of health care and the proposed remedies are going to force patients to become better informed and educated about their care. Obviously, some patients are better able to do that than others, so we need to make allowances for those patients who are more vulnerable. But I agree: patients need to view their medical professionals as partners. Also, we have a rule in my family: nobody rides alone. If one of us is in the hospital or getting a test done, someone is always there to help keep track of what’s going on.