God help you these days if you have to go to a British hospital. The recent scandal of Stafford Hospital in the UK-where at least 1,200 died from neglect and incompetence-has shaken everyone in Britain about the dangers lurking within the typical National Health Service facility.
The Francis Report, which investigated the deaths, has highlighted six other hospital trusts where similar numbers of deaths may be occurring. Robert Francis, QC, the report’s author, disclosed a catalogue of disaster on the most elementary level. “The most basic standards of care were not observed,” he said. “Elderly and vulnerable patients were left unwashed, unfed and without fluids.”
And that appears to be only the tip of the iceberg. Francis went on to identify some 290 recommendations to improve care across the whole of the NHS. As the usually sober newspaper The Times (7 February 2013) put it: “No one is safe.” In the weeks since that first shocking disclosure, the headlines are only getting worse. NHS trusts now stand accused of using taxpayers’ money to cover up high death rates by hiring CHKS, a private company, to ‘reclassify’ this data. According to The Sunday Times (3 March 2013), CHKS worked with some 120 NHS trusts and used as an advertising boon the claim that it had been able to reduce the high deaths at one hospital by a third by re-categorizing many patient deaths caused by the treatment there as ‘unavoidable’ to get the hospital staff off the hook.
But the staff itself knows the true grim reality. According to an annual staff survey conducted by the NHS, more than a third of doctors and nurses at some 19 hospitals said they would not want their own relatives to be treated at their own facilities. Although most of us feel impotent in the face of the vast NHS bureaucracy-or a pitiless and jaded medical or nursing team-there are plenty of things you can do for yourself or on behalf of your loved ones to survive a hospital stay.
Essentially it comes down to being assertive, even a nuisance. You need to learn to be a right pain in the ass because, by being what doctors tend to refer to as ‘a heartsink patient’, you are more likely to survive. What follows is a short patient assertiveness-training course with seven basic rules. Don’t expect your doctor to take all of this lying down. Most GPs aren’t used to being questioned intently, even politely, and tend to view the most innocent of enquiries as a threat. It’s not that they’re an unduly dictatorial breed, and they aren’t deliberately trying to make you ill. It mostly has to do with the drubbing they’re received over the years in medical school and as junior doctors.
After decades of being overworked and subjected to abuse, they’ve been brainwashed into believing that there’s something wrong with questioning the people teaching them. Or in questions, full stop. As the late American doctor Robert S. Mendelsohn put it so succinctly in his book Confessions of a Medical Heretic (New York: Warner Books, 1980), “If I had to characterize doctors I would say their major psychological attribute is fear. They have a drive to achieve security-plus that’s never satisfied because of all the fear that’s drummed into them in medical school: fear of failure, fear of missing a diagnosis, fear of malpractice, fear of remarks by their peers. Doctors are given one reward for swallowing the fear pill so willingly and for sacrificing the healing instincts and human emotions that might help their practice: arrogance. To hide their fear, they’re taught to adopt the authoritarian attitude and demeanour of their professors.”What we emphatically are not trying to do is train an army of doctor-bashers.
The code word here is ‘polite’ assertiveness. Your doctor may well react to your courteous line of questioning with one of a number of put-downs (which you can bet his medical professors used plenty of times on him). Or he might be evasive or hurried because he’s overworked or in the dark. Assure him that you trust him, but would like to have more information before the two of you make a decision jointly. Use lots of “I’s” in your sentences to reinforce your involvement in the decision-making process. If he’s still unwilling to be helpful, that’s your signal to get yourself another doctor. Lynne McTaggart
Rule No1: You are a medical consumer with the right to say no
No matter whether you are on the NHS or paying Harley Street prices, you have an absolute right to know everything there is about any medical treatments being proposed. If you are to take charge of your own healthcare and survive a hospital stay, it’s vital that you view yourself as a paying consumer and your doctor’s advice as services that you are purchasing. Certainly you would never buy a car or a camcorder without painstakingly investigating the pros and cons. Why should something as vital as your health or that of your loved ones be any different? Remember: these services aren’t free. You have paid for them through your contributions to national insurance. As such you have a number of rights, the most fundamental of which is to know what’s going on and to have some say over who will care for you. And far from eroding trust, asking questions will cement the relationship between you and your doctor (if he’s a good one, that is) of shared responsibility between two intelligent adults, rather than between an authoritarian parent and a cowering child.
The bottom line is that if you are a competent adult (that is, of sound mind) doctors don’t have the right to tell you what to do. They can’t insist that you have a particular treatment or indeed any treatment at all. They can bully you (and they likely will-I was recently treated to a catalogue of horror studies about one treatment I refused that conveniently left out a raft of other studies showing the exact opposite results). You have the right to reject this advice, to seek out another doctor, to exit stage left at any point.
Before you engage in any way with a doctor or hospital, fully understand your rights.
Rule No2:Understand your health issue and treatment thoroughly
Before you decide anything about your treatment, you need to fully understand your condition and your possible treatment options. Ideally, it helps to become well versed in it before you decide on a doctor or hospital. Many doctors have different views about how to treat a particular condition; some prefer a highly medicalized, invasive approach, while others believe less is more. Only by doing your homework first can you work out which treatment you’d prefer and which person is the right man or woman for the job.
Become an expert in your condition. Read about it in magazines like this one, in books, on the internet, even from medical/scientific studies, which you can get on the net (do a search in Google Scholar or PubMed). You’ll soon find out how well informed your hospital or doctor is on the latest treatments for your condition. One of my daughters developed a problem, and when we saw one consultant, he knew nothing about a treatment we were interested in that had become standard in the US. Knowing ahead of time about the various treatment options helped us make our choice about the right doctor.
Print out any relevant medical studies.Eventually you can show these to your consultant, which will lend weight to any queries you have. It won’t guarantee he’ll agree with you, but you’ll have chapter and verse to back up your views.
Put your questions in writing. Make a list of everything you want to know about your condition and its treatment again before you meet the doctor. This will help you address everything you need to know and avoid any important omissions.
See through the stats. Medicine tends to evaluate drugs and procedures by applying its relative success rate (the success rate compared with something else), not its absolute success rate on its own. This can be highly deceptive.
For instance, if your risk of developing arthritis is 4 per cent but drug X reduces that to 2 p
er cent, medicine will hail the drug as having a 50 per cent rate of effectiveness. But in absolute terms, drug X’s effectiveness is only 2 per cent. Learn to distrust medical figures and insist that your doctor give you the straight likely absolute success of any treatment.
Rule No3: Pick the right specialist
Before going ahead with any hospital treatment, you need to gather as much information as possible about the practitioner, specialist or surgeon in charge of or performing your treatment. When you first consult your GP, ask him or her to refer you to the specialist who is most experienced in treating your condition successfully and who works in a hospital noted for treating your condition (from now on we’ll call him ‘he’ for convenience, but it could just as well be a ‘she’). Pay attention to his reputation and standing among his peers.
When you first see the specialist, you’ll need to do some decent probing about his general expertise, bedside manner and experience with your condition. Think of this meeting as a job interview: you’re interviewing him for the job of making you well.
Don’t be afraid to press for answers. Your life is literally in his hands. One survey of 95 hospitals by the American College of Surgeons discovered that three-quarters of surgical complications were due to surgical error.
Is this your kind of doctor?
Begin by finding out as much as you can about how this consultant works and how competent he is. You can do this by asking him directly (or his staff or receptionist):
o How many patients do you see per day and overall in your practice?
o How much time do you give each patient?
o Are you reachable after hours?
o How do I get in touch with you then?
o Do you speak to patients over the phone?
o How many procedures of this kind have you performed? (If less than 10, stop right here and find another specialist)
o How frequently do you do this procedure?
o What are your background and qualifications?
o How experienced do you consider yourself with the procedure suggested for me?
o Have you been the subject of any disciplinary actions or lawsuits? (Or find this out from the Royal College of Physicians, to which he should belong.)
o Do you get patient referrals? How about doctor referrals?
o Will you do the surgery yourself or will you just supervise? (If he isn’t doing it, you need to find someone else. Otherwise, you’re likely to be at the hands of a junior doctor learning the ropes.)
10 questions to ask your specialist
So he seems the right sort so far and you know he’ll be doing the surgery himself. Now it’s time to find out a bit more about your specialist’s experience with your particular condition. Have your own research and questions with you when you ask him the following:
1. Why do you think I got this illness?
2. What are the various ways my condition is usually treated, and how do their results compare? Please provide me statistics from the latest studies about outcomes.
3. What are the absolute, not relative, advantages of each treatment?
4. What are your reasons for proposing a particular treatment?
5. What’s the potential downside? What risks do I face, physically and psychologically, and what’s the usual rate of complications?
6. What will happen if I refuse this treatment? How do any ill effects compare with the potential side-effects of the proposed treatment?
7. How long will it take for me to resume my normal activity and lifestyle?
8. What might happen if I hold off having the treatment?
9. What should I do after the operation to promote recovery?
“?” What modifications should I make in my diet or lifestyle to promote healing and avoid having this situation recur? What complementary or integrated treatments might help my recovery?
You know it’s the wrong doctor for you if he:
o is obviously overworked
o refuses to address your concerns or sweeps them away with ‘it can easily be fixed’, or tells you there are no side-effects or downsides (all drugs and all operations have potential risks)
o dismisses your wish to get another opinion
o seems dishevelled or is juggling several cases at once and can’t give you his full attention
o is obviously very tired (many younger doctors are expected to do long shifts without sleep)
o doesn’t take the time to justify the tests ordered or the operation he’s suggesting for you
o refuses to let you see any test results or prognoses
o can’t or won’t answer your questions in plain, understandable English
o can’t or won’t give you satisfactory answers you want or need
o gives you a bad feeling in your gut, or in some way intimidates you or makes you nervous.
Get a second opinion
If you have any doubts about the suggested treatment for your health issue, seek out a second opinion from a doctor who is not connected in any way with the first physician (for instance, avoid someone who works in the same practice or same hospital).
Just to be sure, explain to the first doctor that you’re seeking a second opinion and ask that all your records and test results be sent to the second doctor.
Rule No4: Choose your hospital with care
There may not be all that much choice if you need to see a particular specialist or have an emergency. In that case, the hospital usually goes with the specialist or it’s the one geographically closest to you.
But if you have the time to shop around, choose a hospital with a decent position on the league tables (yes, like schools, hospitals also are rated on a national league table, with a smaller community hospital placed over a large teaching hospital for general elective surgery, for instance). The Health Information Service, part of NHS Direct (tel: 0845 4647), can tell you how quickly outpatients and emergency patients are seen (it’s supposed to be 30 minutes and five minutes, respectively, according to the Patient’s Charter) and what percentage of operations are performed within three months of a doctor’s recommendation (another Patient’s Charter requirement). Compare your local hospital’s performance with others across the country. For elective operations like knee replacement, the NHS now guarantees that you will have to wait no longer than 18 months, while you “should” wait no longer than a year for more urgent operations like coronary artery bypass grafts.
You might also consider:
o a small or medium-sized community hospital if your health challenge is routine
o a larger hospital for a more complex problem
o a teaching hospital if you have a life-threatening condition requiring specialist care
o a hospital without an impossible waiting time
o one that takes an integrated approach and offers (or is open to) some forms of alternative or complementary medicine
o one known for the quality of its nursing care and adjunct therapies like physio
o contacting the National Confidential Enquiry into Patient Outcome and Death (www.ncepod.org.uk), which tracks deaths in hospital-the service is by doctors for doctors, but you may be able to get some information if you’re persistent.
Since Community Health Councils were abolished about a decade ago, there is no independent body whose job it is to ensure that the NHS upholds your medical rights. Local councils are now obliged to scrutinize hospitals in their district, so you may ask them the hard questions or try your hospital’s Patient Advice and Liaison Service (PALS), which is supposed to help you with problems. But as these are located in the same place that you’re scrutinizing, your chances that they’re acting independently and in your best interests may be slim.
Nevertheless, do prepare to ask them frank questions about the staff such as:
o what percentage of the medical team are fully trained consultants?
o what percentage are junior doctors?
o how many complaints has the hospital received?
o what is the monthly death rate?
o hav
e there been any lawsuits and, if so, how many each year for the past five years?
Sniff out tell-tale signs
If your surgery is elective, go visit your chosen hospital first. Look out for signs of inefficiency or unhygienic practices, including:
o equipment not properly handled or covered or left about
o quick cleanups by nursing staff rather than the presence of proper cleaning staff
o overflow or spills of rubbish, waste and hazardous containers
o maintenance equipment left out in plain view
o laundry bags left lying in hallways.
Double-check the dosage
Calamitous mistakes made in hospital are usually related to giving the wrong drugs or the wrong dosages. Never just assume that you are being given the correct amount of anything-or indeed the correct drug.
o Check the drugs. Find out the names of all the drugs you’re taking (including the drip). Each time you’re given another dose of the stuff, ask your doctor or nurse to double-check that the drug and dosage are both correct.
o Lower the dosage. Doctors usually give a standard dosage. Often you can take less and get the same beneficial effects while lowering your chances of adverse effects. Always ask if you can take less.
o Ditto the drip. The same goes for the drip. Every time you have an intravenous drip inserted or changed, ask the nurse or doctor to check the name and dosage of the drug on the IV bag.
o Say no to tranks. Hospitals usually dispense tranquillizers to calm patients and make them drowsy and more compliant. They’re almost never necessary and they cause accidents especially among the elderly and quickly become addictive. Just say no.
o As few as possible. Doctors tend to be of the opinion that if one is good, two is even better. Many drugs are given to counteract the side-effects of the first drug. If you’re being prescribed more than one drug, ask if you can take only one at a time.
Rule no5: Check out the nursing staff
As the NHS has been squeezed, so hospitals have cut down on staff, and one area getting the chop is the nursing staff. Ask about the ratio of nurses to patients. If it’s high, with each nurse required to look after a large number of patients, you know that you’re bound to be neglected or the victim of mistakes. Also ask about:
o the total number of qualified full-time RGNs (registered government nurses)
o the total number of nurses’ aides (this number goes up when a hospital wants to save money, as they cost less than fully trained nurses).
Once you settle on the hospital you’re going to, get to know the nursing staff that will be looking after you. Nurses will care for you more than your doctor will. They may catch prescribing or procedural errors, and the more experienced ones may even be willing to cut you some slack on hospital rules for, say, visiting times. If you don’t get along with the nurse assigned to you, you have the right to get another one.
In America, the annual U.S. News & World Report review reported that American doctors consider the quality of nursing care the second-biggest predictor of overall patient care in hospital-more important than technology, quality of research and even teaching ability. When it comes to the elderly in nursing homes, the nurses rated higher in importance than the doctors.
5 important questions to ask your nursing team
1. How many RGNs caring for patients will be on the floor I’m assigned to?
2. How many fully qualified nurses are required be on duty during days, nights, weekends and holidays?
3. How many other patients will the nurse assigned to me also be looking after? (Consider more than five people, including you, unacceptably high and request someone else.)
4. How will the nursing staff stay informed about my condition and care?
5. Will an RGN check in on me and my condition at least once per shift?
Rule No6: Check out your drugs
There is no such thing as a completely safe drug. Full stop. All drugs, even aspirin, come with potential side-effects. Before taking any drug before or in hospital, learn as much as you can. Every drug marketed in the UK has a datasheet on it compiled by the manufacturer that is sent to every British doctor and available online. The datasheet is essentially a profile of the drug at a glance, listing when it should and shouldn’t be taken as well as its side-effects, and you can easily find it on the internet by doing a search using its brand name.
Once you’ve read up on the drug being proposed for you (if you have only the one visit, then ask for the datasheet on the drug right then and there), you can put the following questions to your doctor.
1. Is drug therapy really needed for this problem? Unless you can be persuaded that your condition will definitely worsen without it, why take an agent that might also introduce a whole new set of problems?
2. What will happen if I don’t take the drug?
3. What sorts of drugs or agents (including non-prescription drugs, foods and alcohol) should I avoid when taking this drug?
4. With what other drugs does this drug dangerously react? Although one drug used alone might carry a small risk, when combined with another drug the risk may be multiplied several times over, as can the strength of the toxicity.
5. What are the known side-effects of this drug?
6. What are the latest reports in the medical literature about the side-effects? Medical journals like The Lancet publish new studies all the time, especially if the risks with a certain drug are far higher than the manufacturer originally thought. If your doctor doesn’t know, check it out on the internet (again, search Google Scholar or PubMed for medical studies).
7. Can I discontinue any other drugs I’m currently taking? If you’re taking other drugs, collect all of them (including non-prescription drugs) together and take them all to your doctor so that together you can investigate any and all interactions.
8. What is this drug supposed to do for me? How will it do that? How are you going to monitor the use of the drug? Do your instructions differ from those in the datasheet?
9. Under what conditions and how should I stop taking this drug if I notice certain side-effects? What sorts of tests are available to monitor any drug reactions?
“?” If I don’t wish to take this drug, what other possible therapies are there for me to consider? Here you may have to gently prod your doctor into enumerating the possibilities he’s heard of, not offer an opinion. For one thing, very few doctors have been trained to treat without drugs.
Rule No7: Question all medical tests
The same principles apply to medical tests. Many carry actual risks and some have a high incidence of error, exposing you to unnecessary and possibly risky procedures or even surgery. In many cases (more so in the States), doctors protect themselves against potential lawsuits by ordering every test they can. Be sure to ask the following list of questions. If after all this you decide to go ahead with the treatment in hospital, schedule your procedure for a weekday. All hospitals have fewer staff on weekends and often a surfeit of very junior doctors on call the entire weekend.
1. Do I really need this test? Is there another, safer way of determining the same thing (such as through a thorough interview and physical examination by an experienced medic)?
2. What will you advise me to do if the tests are normal/abnormal? If you or your doctor can’t do anything about abnormal findings, why take the test?
3. What are the risks of this test? Again, you may have to do your homework and check out the medical literature on a given test.
4. What are the qualifications of the operators (and how many hours are they likely to have been on duty when I take the test)? If the operators are housemen (students or graduates) at the end of a 72-hour stint, you would be wise to ins
ist on more experienced-and better rested-parties to handle the equipment.
5. When was the equipment last checked for safety/accuracy? This is a particularly pertinent question within a healthcare system increasingly strapped for cash.
6. What dosage (of radiation, say) will I receive?
7. Are there any protective devices (shields in the case of radiation) that I can wear? (If you’re getting any form of X-ray, make sure to wear a protective apron from your chin to your thighs to shield sensitive areas like your thyroid and reproductive organs.)
8. Is it possible to use earlier test results to avoid being exposed to further risks?
9. What is the real risk of my developing the condition you’re investigating?
10. What is the accuracy rate of this test? Ask about the sensitivity (ability of the test to detect the disease), specificity (its ability to identify those who don’t have the disease) and its predictive value (the odds that it is accurate).
Your medical rights
As a hospital patient you have a load of rights, including:
o the right to full and truthful information about the risks and benefits concerning your diagnosis, treatment, hospital care and long-term prognosis
o the right to grant informed consent to any procedure-and the right to withdraw that consent at any time
o the right to all test results and to a copy of all medical records
o the right to fair and impartial care and treatment
o the right to privacy
o the right to respect from all hospital employees and to maintain your personal dignity
o the right to confidentiality in all areas of treatment, including your medical records
o the right to emergency care
o the right to a full explanation of all costs if you go to a private hospital, even when covered by insurance
o the right to refuse any treatment or hospitalization at any point for whatever reason.
Your right to say yes or no
Your single most important ally is informed consent, your legal right to have only the treatment that you agree to as a truly informed person. The doctor has a legal obligation to explain the pros and cons of any drug or treatment he is proposing, including possible side-effects and risks, the chances of success in the immediate and long term, and any alternatives that may be available.
If he knows little or nothing about alternatives to the treatment he’s been trained in, it is your right to ask to speak to someone who does know.
If you are having a procedure in hospital, you will be given a consent form to sign. Read it carefully. Refuse to be bullied or rushed. You may have to live forever with the consequences of signing a form just to please a harassed and impatient doctor.
Cross out any clause that states, in effect, that you agree to the doctor ‘performing any other procedure he deems necessary’ while you’re under the knife. Substitute the words ‘I only agree to . . .’ and write in the name of the operation or procedure. WDDTY knows of many instances of hapless patients who were put under anaesthesia for some minor operation only to discover, on waking up, that they have had a lung or uterus removed.
If you have an elderly relative who may not be best placed to give his or her own informed consent, speak to a solicitor before the hospital stay and get power of attorney.
Protecting your children’s rights
As an adult of sound mind, you have the absolute right to consent to or refuse medical treatment. But this absolute right is muddied when it comes to children. Theoretically, the law allows parents to consent to or refuse treatment for their children until the child is considered able to understand the situation and make any decisions himself.
Furthermore, parents have this kind of say only if the medics attending to your child consider it in his best interests.
If a doctor thinks your child is likely to be harmed by your refusal to permit a given treatment, particularly if you want to substitute some unorthodox or alternative treatment, he has the right to intervene with a court order, as happened recently in the Neon Roberts case, when his mother Sally attempted (without success) to refuse radiotherapy for her son’s brain tumour.
In these kinds of cases the doctor can seek to make the child a ward of the court, which will invariably come down on the side of the orthodox medical establishment, as it did in Neon’s case. It’s also important to keep in mind that your doctor only needs the consent of one parent to proceed. If the other parent disagrees, the doctor is still within the law to begin treatment. The dissenting parent’s only recourse is to attempt to make the child a ward of the state and then ask the court to decide on the child’s treatment, which is likely to uphold the doctor’s decision.
Once children reach their teens (about 15), they can make their own treatment decisions on standard or low-risk procedures.
Your 7-point survival essentials
1.Bring your own water supply. The recent scandals showed that many patients die of dehydration in hospital, so bring a litre of bottled water with you when you check in. Then every day you’re in there, buy another litre of water if you’re able to get up and drink it slowly throughout the day. If you can’t, get your hospital buddy (see below) to bring a litre along each time he or she visits. If your elderly friend or relative is the patient, bring in a litre bottle every day and make sure he or she is drinking it. If the water is untouched when you visit, help the person drink some while you’re there.
2.Home from home. Control your hospital space and make it as pleasant as you can. Ask very emphatically for a bed with a window. Festoon your area with personal objects and images. Bring along photographs, postcards and framed pictures, and use Blu-Tack to hang them on the walls around you. Buy one of those little book lights to attach to any reading material, so that you can turn off the fluorescent lights, which can give you headaches. Bring books you’ve always wanted to read. Open a window for natural ventilation. Have your visitors treat you to plants, or a small air ionizer to give you a charge of plenty of health-supporting negative ions.
3.Your hospital buddy. Enlist a friend, colleague or family member to visit you every day. His job is to be your advocate and your cheerleader, to encourage you to stay positive, to bring you whatever you need from the outside, to run interference with the hospital staff, to massage your shoulders and feet, and to work with you on your recuperative exercises. In effect, your buddy is your therapist and nurse who must assume that the nursing staff isn’t doing its job. He or she will also check drug dosages when you’re not able to. On no account leave your young children alone in hospital. You are the best drug for your child there is.
4.Smuggle in food. Although they are supposed to be centres of recuperation, hospitals persist in serving up refined, nutrient-poor, sugar-rich sludge as daily fare. Ask your buddy to bring in organic wholefoods on a daily basis and eat that instead.
5.Be complementary. Tell the hospital staff you’d like to make use of any appropriate complementary therapies on hand at the hospital, whether relaxation therapy, massage, acupuncture or art and music therapy. All these make your stay more enjoyable and assist the healing process.
6.Take supplements. When you’re ill, your nutritional needs skyrocket. You need high dosages of certain nutrients to detoxify yourself from drugs, to aid wound-healing and to boost your immune system-far more than you can get from food, particularly hospital food. Come with a supply of a good multivitamin/mineral supplement plus high-dose vitamin C, the B vitamins and antioxidants like zinc at the very least.
7.Ignore the rules. If you need your family there, or your child or elderly parent needs you, ignore visiting hours and stay all night if need be. Politel
y refuse to leave and secure approval from your doctor or hospital administration. It’s your right. Ignore other rules saying that children under a certain age are not allowed. It’s the right of any patient to see his friends (if a child) or his children or grandchildren (if an adult).
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