Most people want curative treatment when it is effective, and want to stop when it is no longer effective, so they can go home and die peacefully.

Doctors do not know when curative treatment will be effective, most of the time. Even 10% chance of cure is desired by many patients, and in most fields of medicine, treating 10 patients to save the life of 1 is considered worthwhile. Doctors know the usual progression of disease, but do not know how fast it will move in a particular patient.

Hospice, "Comfort Care," and Do Not Resuscitate (DNR) orders are formal ways to avoid curative treatment, and let death come. DNR is discussed in another article. 

"Comfort care" misleads patients if they think it means comfort while curative treatment continues. NIH defines "Comfort care… helps or soothes a person who is dying." NIH only defines it when "There are no other treatments [to cure or slow the disease] for us to try,"  but doctors use the term when there are curative treatments to try, but they do not want to try.

Another misleading promise is to continue both comfort care and treatment. They consider comfort care to be [non-curative] treatment, so promising comfort care and treatment does not mean curative treatment.

Comfort care means different things to different doctors, so it can only be the start of a discussion. Almost always it means stopping curative treatment.  "frequently we say 'comfort measures only' (CMO)… 176 physicians responded... Disparities in responses were the norm, and common defining characteristics were the exception." "The term comfort care may lead to a critical misunderstanding among the public... when patients are labeled by clinicians as receiving “comfort care” or “comfort measures,” there is added risk that they will be treated without individualized care plans that link medical condition to values and explanations... The vagueness of these terms is no more clinically useful than creating a care plan to provide 'best care' or 'aggressive care...' End-of-life care plans must be specific to the patient and family... we coach colleagues and families to consider every therapeutic intervention..."

Many doctors also reduce treatment if a patient gets pain treated by a palliative doctor, rather than a pain doctor. POLST orders can document simple preferences for full care or limited care, but do not have room for your goals and details, which you can put in Advance Directives. Disability groups comment that POLST programs put pressure on patients to limit future care, without careful discussion of alternatives and consequences.

Directives reduce care long before death: 60% of US surgeons will not offer a high-risk operation to patients whose advance directives limit followup care.

Most nursing homes lack defibrillators; a few have them, so your choice of nursing home also affects your care.

People often write limiting directives, on the assumption they'll come into play for old age, coma or dementia. But temporary unconsciousness from an accident may come any time, putting the directives into effect, so directives need to be flexible.

Patients who want full care need to be ready for doctors' resistance. A Houston study said, "All physicians reported interpreting requests to 'do everything' as a 'red flag', a sign to more thoroughly explore what 'everything' meant to the patient or family." Caucasian doctors said such families "might be in denial." Hispanic and African American doctors said such requests could show suspicion of doctors.

Researchers have found that as people decline, they're comfortable with more care, just as people with disabilities are, "Patients often cannot envision being  able to cope with disability... However, once patients experience those health states, they are often more willing to accept even invasive treatments." The researchers also found that for irreversible or terminal illness, "physicians and surrogates frequently have difficulty determining when patients are in these states." These are reasons to choose a representative you trust, who knows your goals.  

Medical staff may ignore family instructions. Medscape surveyed  physicians in 2018, 2016 and 2014:

• 45% end care when they want to, even if the family wants further care

• 34% end care when the family asks, even if the doctor thinks the patient may recover. This 34% is up from 28% in 2014. 19% refuse the family's instructions, down from 22%. 48% say "it depends"
• 27% in 2014 said they would end care for a newborn if they thought s/he would have a "terrible" quality of life (not asked in 2016-2018)
• 12% think some patients are taken off life-support too soon.
• 20% under-treat pain since they fear trouble from the government, up from 9% in 2014 and 6% in 2010
• They surveyed 5,000 US doctors in 2018, 7,500 in 2016, 17,000 US doctors and 4,000 European doctors in 2014.

Geriatricians say that "state statutes sharply restrict the circumstances in which clinicians may forgo life-sustaining treatment on the basis of a living will... Living will laws tend to assume that preferences expressed in advance may be changed in the event of dementia..."

A nationally representative survey in the US found that two thirds of people had advance directives before they died, but confirmed they were not always followed. Among incapacitated patients who had left instructions:

• Only 10 patients wanted all care possible; 5 got it but 5 did not.
• 425 patients did not want all care possible; 395 got what they requested, but 30 got full care.
• 14% of representatives said problems came up in trying to follow the written instructions.

They surveyed next of kin for 3,764 people over 60 who died in 2000-2006 (random sample which represented 12 million deaths). Some advance directives named a representative, some gave instructions, some did both.

An earlier study tracked patients in one nursing home from 1986-87. The researchers asked mentally competent patients who agreed to participate about their care preferences, typed individual statements, read them back, changed further if needed, then put the signed statement in the nursing home file, with another copy in a prominent envelope in the file, for transfer to the hospital if needed. 

• 18 patients got less complete care than they instructed.
• 6 patients got more aggressive care than they instructed.
• The envelope of patient instructions was given to the hospital in only 24 of 71 hospitalizations. 

To get your wishes respected, consider asking your lawyer (see above for a discussion of lawyers) to write a letter confirming your wishes, and noting that while the patient can change wishes at any time, repeated inquiries by doctors when the patient is sick would be harassment.

Family members do not always follow instructions. Public radio quotes New Hampshire's "Long Term Care Ombudsman - basically the complaint department for New Hampshire nursing homes. He says what’s directed in the form doesn’t always get carried out. 'Younger folks take it upon themselves to say, "You know, I know Dad wants this, but I think this would be better for them." Well, that’s not their job.' "
nhpr.org/post/planning-end-new-hampshires-advance-directive-gets-update

Pregnant women's directives on withdrawing life support have limited or no effect under many state laws.

In a  study of deaths in British hospitals from July-September 2015, 4% of patients had advance directives, and 91% were used. DNR orders were discussed with 36% of patients and 81% of patients' representatives. For 16% of patients there was no reason given why a discussion did not take place:

• "Where there was an advance care plan, the team took the contents into account when making decisions (91%) and it was reviewed (79%); however only 4% (415/9302) of patients had documented evidence of an advance care plan made prior to admission to hospital.
• "A do not attempt cardiopulmonary resuscitation (DNACPR) order was in place for 94% (8711/9302) of patients’ notes at the time of death. Where sudden deaths are excluded, discussion about CPR by a senior doctor with the patient was recorded in 36% (2748/7707). Overall, for 16% (961/6072) there was no reason recorded why a discussion did not take place. Discussion about the CPR decision with the nominated person(s) important to the patient was documented in 81% of cases.
• "It was recorded that 32% of patients had opportunities to have their concerns listened to and, of these, 94% were given the opportunity to have questions answered about their concerns."

The Gosport hospital in Britain from 1982-2001 killed 456 -656 patients by letting 2 doctors order overdoses from heroin pumps for patients who were not in extreme pain (full report).

​Hospices often do not have enough staff to provide the support they promise.

Lessons can be drawn from several columnists who lamented problems at the end of their parents' lives

Katy Butler writes in the NY Times that her father declined a pacemaker for his slow heartbeat as overtreatment, following his primary care doctor's advice over his cardiologist. After a stroke he was semiparalyzed and "permanently incapable of completing a sentence." Then he needed a hernia repair and the hernia surgeon wanted clearance from a cardiologist. His wife took him to the same cardiologist, who refused clearance without a pacemaker.

The wife, exhausted from caring for her husband, had no energy to find another cardiologist or hernia surgeon or discuss it with her children. She agreed to the pacemaker. "One of the most important medical decisions of my father's life was over in minutes." The pacemaker kept him alive too long, in the opinion of husband, wife and daughter, as he gradually had more strokes and declined. Furthermore they could find no one to turn it off and let him go back to his old slow heartbeat, and probably die sooner.

I totally understand the wife's exhaustion, her decision to go to the original cardiologist for what she expected would be a routine clearance, and her unwillingness to embark on any more doctors when her husband needed the hernia operation. I've felt the exhaustion, the not knowing what another doctor will say, not wanting to take a fragile patient to new doctors. For yourself can you name an representative both energetic enough and close enough? Can you name a 2nd representative to approve major decisions?

The daughter no longer sees doctors "as healers or fiduciaries. They were now skilled technicians with their own agendas. But I couldn't help feeling that something precious─our old faith in a doctor's calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of parts─had been lost." 

Butler has a rosy memory of the bad old days when paternalistic doctors decided by themselves. The financial incentives were to treat the insured and not the uninsured. Now more are insured, and financial incentives are to treat the moderately sick, and keep the very sick out of managed care and hospitals, where flat payments and penalties dominate budgets.

Steve Lopez writes in the LA Times that when his father "had fallen and broken his hip after many years of heart failure and other major medical issues, part of me was ready to say that's it, let's let him go. But he's the type who would fight for every breath." The father had the surgery, but the son continues, "we've never found a way to discuss the complicated and unsettling questions of how much intervention my parents would want to prolong life, and under what circumstances they'd rather say goodbye. It's a conversation we still need to have." However Lopez says his father's wishes are clear, "fight for every breath." Disagreeing with that goal is different from not knowing the goal.

I don't even understand not fixing a broken hip. When my grandmother broke her hip, the doctor was very formal about asking my permission to fix it, since my mother was unreachable on a freighter trip, and the operation was risky for a woman in her 90s. So I asked if there was an alternative, and the doctor said the only alternative was leaving her in traction and pain. Decades later I authorized 2 hip replacements for my father in similar situations.

Jim deMaine writes in a blog that his patient "had been insisting on more care for her stage 4 lung cancer and was holding out for a miracle... She was still "full code" status per her wishes and written advance directive." In an ICU she deteriorated and the doctor "recommended that the family consider withdrawal of ventilator support," so she would die. The family did not agree, and after 3 weeks the patient died, and had CPR which did not succeed. This is an example of the doctor not wanting to follow the advance directive to stay alive in hope of a miracle, rather than a lack of directives. When CPR is done in ICUs, 18% of the patients revive enough to leave the hospital alive. The doctor felt strongly this patient would not be in the 18%, and she was not, but there were no statistics to predict her exact case, and no mention of a 2nd opinion. AMA believed just 25 years ago that CPR never succeeded on some diseases, but many doctors did try CPR despite those diseases, and often it succeeded. Unwillingness to admit such past failures helps patients mistrust doctors' advice.

Loyola University, in one of its ethics case studies, describes a woman who cared for her aunt after a stroke, and told her daughter never to let her live that way. So the woman knew what she was talking about. The woman then had a stroke, the doctor predicted at best she'd get some consciousness back, the woman was on the verge of death, and yet they talked the daughter into more treatment to see if they could bring her back from death. This is another example of the doctor not wanting to follow the advance instruction, rather than a lack of instruction. Again no 2nd opinion to check the first doctor's predictions.

A 109-year-old Australian knit sweaters for oil-soaked penguins, as part of a program to prevent them swallowing oil if they preen their feathers.

103-year-old American rode a tricycle daily to the beach.

102-year-old Frenchman sets a bicycle record for centenarians.

Section B tells you exactly where to look for low-sodium foods. Here are examples of how your meals could work out (click for a more detailed example). 

LOW  HIGH  (Milligrams of sodium)
395     4,345   TOTAL 
  75          75    Egg or egg white
  35          35    Milk, 2 ounces for cereal
    0                  Oatmeal or shredded wheat
              290    Grape Nuts
  50        920    Vegetable soup
  45        340    Cottage cheese
    0        440    Bread, two slices
    0          95    Butter
  10        350    Cheese, one slice
110     1,400    Turkey, two servings (sandwich & dinner)
  60          60    Vegetables, 3 servings
  10          10    Fruits, 2 servings
    0        290    Buttered popcorn
    0          40    Water, one liter

B. Know where to look. Look for the foods below. All these are far better than the FDA goals.

1. Bread with 0 sodium per slice is nationally available at Publix, Sprouts, Trader Joe's, Whole Foods, and many independent stores (from "Ezekiel/Food for Life Low Sodium"). Trader Joe's also sells its own brand. More 0-sodium bread is available from "Vermont Sodium-Free," and some loaves from Manna Organics have 3-13 mg per slice. Corn tortillas usually have 10 mg each. Other breads, bagels, muffins, and wheat tortillas are high in sodium, 150-300 mg. For your own baking, there are low sodium baking powders.
2. Oatmeal, shredded wheat, Wheatena, Cream of Wheat (1 or 10 minute, not 2.5), Cream of Rice, puffed wheat, puffed rice, and some specialized cereals have no or low sodium. 
3. Soups with no salt or "no salt added" can be found at Whole Foods or online, from Health Valley and others. Zero sodium bouillon is widely available from Herb Ox (Hormel) and Wyler's (Heinz).
4. Peanut butter, butter and popcorn are sold without salt in most stores.
5. Unprocessed vegetables, nuts and fruit are naturally low in sodium, 0-80 mg, but processors add a lot, and artichokes, chard and turnips are high (detailed list).
6. Unprocessed meat, fish, fowl are low in sodium: 50-75 mg per serving. Other processed meats are much higher. Stores may inject brine even in raw meat, so check the label. For example different versions of Boar's Head Turkey range from 55 mg to 700 mg sodium per 2 ounces.
7. Canned beans with "no salt added" can be found at Whole Foods or online, from Eden and others, 35-65 mg. Tofu and tempeh have 0-10 mg. Dried beans with low salt are in most stores.
8. Most Swiss cheese is low: 10-75 mg per ounce, (Boar's Head "no salt added" has 10 mg.) Check the label. Other cheeses are high.
9. Cottage cheese is available with "no salt added" (20-75 mg per half cup) from a few chains: Friendship (East coast), Giant/Martins (MD, NJ, NY, OH, PA, VA, WV), Giant Eagle (MD, OH, PA, WV), Hood/Crowley/Axelrod (New England, NY), Lucerne, (West, mid-Atlantic, TX), Shopright (CT, NJ, NY), Stop+Shop (CT, MA, NJ, NY, RI), Western (ON). Other cottage cheeses have 300-540 mg. USDA says cottage cheese exists with 15 mg per half cup (112g), and the lowest I have found is 20 mg (18 per 100g) from Western in Ontario.
10. Yogurt varies from 45-190 mg per serving. Check the label. Usually the lowest are Fage, Oikos, Yoplait Greek, Dannon nonfat and Stonyfield nonfat.
11. Sodium+Calcium+Protein in Milk alternatives, per 8 ounces (240 ml):
    5 mg       40 mg     12 g      EdenSoy unsweetened
    5              300           4         Hemp Dream 
    5                40           1         Rice Dream-Horchata-cinnamon
    20            300           4         Oat Dream
    30              40           9         WestSoy unsweetened (made from soy, even their almond flavor)
    30-35      350            4         Kidz Dream (soy)
    70           300            7         Silk unsweetened (soy)
    80           300            5         Flax milk from GoodKarma
    85           100            0         Cashew milk from SO Delicious
    95           100            5         Almond+Plus unsweetened from SO Delicious
    90/110    300            1         Almond milk from PC and Earth's Own (both Canadian)
    105         276            8         Cow's milk (USDA)
    110         300            2         Quinoa milk
    Most other alternatives have more sodium, like Ensure (280), protein shakes (150-300), soy milk (100-220), almond milk (150-190)
12. Eggs and alternatives (made from egg whites) have 70-100 mg.
13. Flavor without sodium comes from onions, lemon juice, vinegars, wine, powdered mustard, ground pepper, other spices, and some commercial sauces or here. The only pepper sauces without salt are from Alberto's, Island Treasure, and Trader Joe's.
14. Packaged foods: hundreds with no salt and low salt are at  HealthyHeartMarket  and  LowSaltFoods. Their founders both had congestive heart failure, took seriously their need to reduce salt, and found foods to eat.
15. RECIPES: Add the sodium in your ingredients. There are low sodium baking powders. Each quarter teaspoon of salt in a recipe has 600 mg of sodium. If your pinch of salt has about 50 individual grains, it has 1 mg of sodium. If your pinch is a sixteenth of a teaspoon, it has 150 mg and 8,000 grains. Use small pinches or none.
16. OTHER NUTRIENTS - The Institute of Medicine has detailed nutrient recommendations for men and women at different ages, which we have organized by age group in the "RDA" tab of our menu spreadsheet. Food labels showing "% DV" are based on older FDA daily values for adults, so they are only an approximate guide to the latest research. (There are also FDA values for infants, pregnant and lactating women. The various diet standards are color-coded and compared in the RDA tab of our spreadsheet. Another spreadsheet shows FDA goals for sodium in specific foods, designed to help people reach lower daily totals.) Potassium is important (beans, fruits, squashes, tomatoes), since most multivitamin/mineral pills have only 2% of your daily need, a banana has 10%, and most published diets are short of potassium. The detailed example in section A has good levels of calories, sodium, potassium, calcium and iron. The example also has far more beta-carotene than you need, which is not harmful, though Vitamin A itself would be. Your body converts what it needs to vitamin A and discards the rest. "Beta-carotene is not toxic even at high levels of intake."
    
17. The sample diet in section A is at a free site, MyFitnessPal, which lets you look up most foods, including brand names. Try multiple wordings, like "no salt added." They do not have a compare  button, but if you log in you can add any number of foods to a meal (free login, supported by ads). Then it will compare their nutrients, like the sample diet. You can copy that list to your own account by logging in, going back to that page, clicking "Quick tools - Copy to today" and changing the diet as you wish. Remember the date of your list, and you can go back to the list and add to it. "Diary settings" lets you choose any 5 nutrients which are then displayed on your pages. Some nutrients are shown as % of FDA daily values: calcium 1,000 mg, iron 18 mg, vitamin A 5,000 IU, and vitamin C 60 mg. 
18. Iodine: the sample diet includes Nori seaweed for iodine, though dairy products have some iodine too. When you stop adding table salt, you need to be sure you get enough iodine.
19. Water from a water softener averaged 278 mg/liter in an area where city water had 110 mg/liter. Nationally sodium in city water varies 5-195 mg/liter, with an average of 43, and bottled or distilled spring water is 0-15 mg/liter, but check the website given on label. Bottled mineral water is much higher in sodium. 
20. STORE LABELS - Besides a "Nutrition Facts" label, low salt foods in stores may have the following labels:

• "Very low sodium" means less than 35 mg sodium per serving.

• "No salt added" means the processor did not add any; the result is usually under 50 mg.
• "Low sodium" means less than 130 mg.
• "Reduced sodium" is useless. It means 25% less than regular versions and can still be hundreds of milligrams.
• I recommended (you can too) that the 2015 Dietary Guidelines Committee establish an optional graphic for use on labels to show sodium content, just as appliance labels show energy use.

21.  RESTAURANTS - When you go to restaurant chains, take this bar graph of outstanding food at each chain. Ask for their list of salt content, or look first at New York's list of many national chains, which you can sort to find low sodium. You can also check the chains' websites as I did. 

• The bar graph shows an entree at each chain with the lowest sodium, saturated fat and sugar per gram of protein. These are usually eggs or grilled chicken. The restaurants have other foods with low sodium, fat and sugar, but without much protein and other useful nutrients. The lowest are at PF Chang's, Bob Evans, Long John Silver, and Denny's.
• Restaurant oatmeal has low sodium (5-45) at Bob Evans, IHOP, Jamba Juice and Chik-Fil-A, but is cooked with 100-470 mg per serving at other chains. Shredded wheat is reliably low in salt at restaurants.

• Restaurant smoothies have low sodium (10-50) at Denny's, Jamba Juice and McDonald's, but not elsewhere. Read the nutrition chart when ordering: "Classic Strawberry Surfrider" at Jamba Juice has 10 mg in a medium smoothie, but the "Make it Light" and "Wild" versions have 125-160.

• Golden Corral - wide range of fruits, vegetables, and pasta with 0 sodium, many more from 5-50. Eggs 60-70 mg each, BBQ pork and turkey at 100-130 per 3 ounces. You'll need to print our sorted list and take it with you, to avoid all the other high sodium choices. They do not list oatmeal or smoothies.
• Denny's (or xls) - Corn, red onion, tomato, lettuce, fruit have 0-7 mg sodium. Grits+margarine 15. Broccoli or spinach 20-22. Smoothies 30-45. Avocado, steamed zucchini, grilled onions, mushrooms, pico de gallo 40-67. Yogurt 100. 1 egg or egg white 118. Garden salad 150. Oatmeal 220. Chicken strips+buffalo sauce 3,450.

• McDonald's - apple slices 0, side salad 10, smoothies 40-50, yogurt 40-70, sundaes 85-170, oatmeal 115, apple pie 170, four McNuggets 360, hamburger 480, Egg McMuffin 740, Big Mac 970, 1/4 pounder+bacon+cheese 1,440. The salad is without dressing, since even their simplest vinegar dressing, Newman's balsamic vinegar, has 420 mg sodium. Newman's company should be ashamed.
• Panera - fruit cup 15, smoothies 75-105, classic cafe salad 140, oatmeal 160, turkey+avocado+BLT+sourdough 980 (lowest full sandwich), bacon+turkey on XL tomato basil 2,990.
• Starbucks - fruit blend 0, greek yogurt+honey 75, greek yogurt+berries 115, choc meringue cookie 115, oatmeal 125 (they wrote to me that the zero shown in their flyer, Nutritionix, and New York's Menustat is an error), smoothies 120-160 (which is shown on their flyer; they show 0 on website, Nutritionix, and Menustat; they wrote to me insisting on 0, though the milk in their recipe would always contribute substantial sodium, so it might be wise to mistrust their other numbers too), large Frappuccino java chip 340, cheese+fruit box 470, protein egg+cheese box 470, turkey+swiss sandwich 1,140.

• Subway - Veggie Delite Salad 80, roast chicken salad 280, Veggie Delite 6" sandwich 280, roast chicken 6" sandwich 610 (lowest sandwiches)

• Suggestions for other foods from New York and LowSaltFoods, but see note 22 below. 
• Non-chain restaurants need other approaches.

22.  REFERENCES include:

• Menustat, New York, compares restaurant chains easily; sort and download. See a graph of outstanding food at each chain. Check with restaurant website if you eat there often. For example New York shows 4 mg sodium in grilled chicken salad from Bojangles, whose website says it has 530mg. They show 0 sodium in Starbucks oatmeal and smoothies, both of which are 125 or more. And you must read carefully; New York shows low sodium in PF Chang's Steamed Gluten-Free Buddha Feast; the company website does show 50 mg in the gluten-free, but 300 in the regular, and 3,440 stir fried.
• MegaHeart, compare non-branded foods easily.
• USDA, look up or sort foods by sodium or other nutrients, or download the database; few brand names. There is extra detail on amino acids and sugars at EatThisMuch.
• MyFitnessPal, look up branded and non-branded foods; add up a day's eating. Many items were entered by the public, often with missing data, so double-check with food labels or USDA where possible.
• HealthyHeartMarket, find low salt brands
• LowSaltFoods find low salt brands
• Globe1234 list of foods with good Fiber, Protein, Calcium, Potassium, compared to their Saturated Fat, Calories, Sugar, and Sodium
• Nutritionix look up branded and non-branded foods. They have some (all?) of the same mistakes as Menustat above: Starbucks oatmeal+smoothies, Bojangles grilled chicken salad, all listed with far less sodium than they have.

C. Health organizations' advice is to control salt in the diet to avoid high blood pressure. The advice usually omits crucial information:

1. Is salt OK for the large numbers of people whose blood pressure is low or is controlled by medicine? No, it leaches calcium from the body, causing broken bones and other harm; see D below.
2. Where can we buy low salt foods? See B above.
3. Do people eating varied healthy diets need to add up all their salt from dozens of labels to watch their total consumption? Yes, start with your most common 5-10 foods, writing sodium from the labels; easiest if you use MyFitnessPal which will let you see and resolve any potassium or calcium shortfall at the same time.
4. How many sandwiches, cups of soup, entrees, etc. can I have per day and keep salt under control? Plenty of "no salt added" versions; see B above.
5. What is the minimum salt needed? 180-500 mg per day; see E below
6. What is a dangerous level of salt? 1,200-2,300 mg per day; see E below.

Below is an attempt to bring some answers together.


D. Results of high sodium diet: broken bones, stroke, kidney failure, weakness.

1. NIH says "Sodium, often from salt, causes the kidneys to excrete more calcium into the urine. High concentrations of calcium in the urine combine with oxalate and phosphorus to form stones. Reducing sodium intake is preferred to reducing calcium intake."
2. An Australian study found that you excrete calcium, and your hip bones lose strength, and break more easily unless your intake of sodium is less than twice as much as the calcium you eat. So if you eat 1,000 mg calcium, you have to stay under 2,000 mg sodium. If you eat only 500 mg calcium, you have to eat less than 1,000 mg sodium to avoid hip fractures.
3. A European study found people's bones lost 12 mg calcium per day eating a diet of 4,400 mg sodium and 1,300 mg calcium. If they kept the same calcium but cut down to 1,600 mg sodium, their bones gained 90 mg calcium per day. A steady loss of 12 mg per day would deplete 3% of their skeleton in a decade, and most of the loss is at the hips, which are then more likely to break. When the same people had a more typical low calcium diet (520 mg), their bones lost 71 or 115 mg calcium per day, depending which sodium level they ate, which would deplete 18% or 29% of the skeleton in a decade. So you need both high calcium and low sodium to avoid bone loss and bone breakage. All the effort you put into eating high calcium foods is wasted if you eat high sodium foods too. None of the volunteers had high blood pressure; all were under 140/90, and their average blood pressure was 115/72.
4. Nutrition labels do not show milligrams of calcium. they show percent of 1,000 mg, so 25% means 250 mg, etc.
5. NIH says "Too much sodium in the diet may lead to:
       *   High blood pressure in some people
       *   A serious build-up of fluid in people with congestive heart failure, cirrhosis, or kidney disease"
6. US Dietary Guidelines 2010 say "association between sodium intake and blood pressure was continuous and without a threshold... blood pressure was... lowered even further when sodium was targeted to the level of 1,200 mg per day" (p.23, which is 4th page of pdf).
7. Mayo Clinic says high blood pressure in turn causes dialysis, blindness, bone loss, dementia, strokes, heart failure, etc.
8. Nutritionist Jane Brody says, "Too much salt can impair athletic performance because it draws water out of your muscle cells. For optimum muscle function during vigorous exercise, the cells should be filled with water." Otherwise "your muscles can’t contract normally and you can feel weak and tired."
9. A summary by WHO and British researchers found: 

• "In adults a reduction in sodium intake significantly reduced resting systolic blood pressure by 3.39 mm Hg (95% confidence interval 2.46 to 4.31) and resting diastolic blood pressure by 1.54 mm Hg (0.98 to 2.11). 
• When sodium intake was <2 g/day versus ≥ 2 g/day [below and above 2,000mg/day], systolic blood pressure was reduced by 3.47 mm Hg (0.76 to 6.18) and diastolic blood pressure by 1.81 mm Hg (0.54 to 3.08).
• Decreased sodium intake had no significant adverse effect on blood lipids, catecholamine levels, or renal function in adults (P>0.05). 
• There were insufficient randomised controlled trials to assess the effects of reduced sodium intake on mortality and morbidity. 
• The associations in cohort studies between sodium intake and all cause mortality, incident fatal and non-fatal cardiovascular disease, and coronary heart disease were non-significant (P>0.05). 
• Increased sodium intake was associated with an increased risk of stroke (risk ratio 1.24, 95% confidence interval 1.08 to 1.43), stroke mortality (1.63, 1.27 to 2.10), and coronary heart disease mortality (1.32, 1.13 to 1.53)." 
• There are minority views that the lack of effect on all cause mortality is important.

E. How much sodium is OK?

1. NIH says "Healthy adults should limit sodium intake to 2,300 mg per day. Adults with high blood pressure should have no more than 1,500 mg per day. Those with congestive heart failure, liver cirrhosis, and kidney disease may need much lower amounts."
2. CDC says, "People who should limit their sodium to 1,500 mg a day are:
   • People who are 51 years or older
   • African Americans
   • People with high blood pressure
   • People with diabetes
   • People with chronic kidney disease"
3. American Heart Association says, "Under conditions of maximal adaptation and without sweating, the minimum amount of sodium required to replace losses is estimated to be no more than 180 mg per day." (p.4)
4. WHO says, "Although the minimum intake level necessary for proper bodily function is not well defined, it is estimated to be as little as 200–500 mg/day" (p.5)
5. Harvard Health Letter says, "Paleolithic diet delivered... well under 700 mg of sodium... The average American consumes... between 2,500 and 7,500 mg of sodium, much of it hidden in processed or prepared foods. That's far more than the scant 200 mg a day the body needs."
6. USDA says "average intake of sodium for all Americans ages 2 years and older is approximately 3,400 mg per day."
7. A CDC study says 99% of people aged 20 or older eat over 1,500 mg sodium per day and 89% eat over 2,300. The study also says 99% of people eat less than the daily requirement of 4,700 mg of potassium.
8. The USDA and Health+Human Services in 2016, under heavy pressure from food companies for higher limits, recommend staying under 2,300 mg per day.
9. Morton says there are 10,000,000 grains of salt in a pound, which means 55 grains of salt per milligram of sodium.
10. CDC converts the measurements in different studies as follows:

• Sodium chloride, commonly known as salt, consists of 40 percent sodium and 60 percent chloride. 
• One level teaspoon of salt contains approximately 2,300 mg of sodium.
• To convert mg of sodium to mg of salt, multiply the mg of sodium by 2.5.
• To convert mmol of sodium to mg of sodium, multiply mmol of sodium by 23.
• To convert mmol of sodium to mg of sodium chloride, multiply mmol of sodium by 58.5.

F. Institutions:

1. Even nursing homes, hospitals and assisted living usually serve too much salt.
2. If they say they never cook with salt, do they use high-salt ingredients?
3. Ask if they if they use zero-sodium bouillon (commercially available from Wyler, Herb-Ox), or high-sodium chicken stock as a base for soup?
4. Ask if they use no-salt bread, butter, cheese, peanut butter, cottage cheese?
5. When you are looking for a nursing home, salt could be one of your criteria. 
6. Find what brands of ingredients they use for soups, breads, cheeses, etc. (often institutional brands with poor labeling, but it is worth looking on their websites).
7. Look up salt content of these brands, and add up a day's diet.
8. If nevertheless you use a nursing home or hospital that provides salty food, take your own low salt food, and avoid their soups and sauces. 
9. When enough patients do this, they will start cooking without salty ingredients.

G. Published Diets:

Most published diets have too much sodium, too little potassium, calcium and iron, according to Diet guidelines. The 4 sample menus below all have enough of the nutrients shown.
 
DAILY MENUS   CALORIES   SODIUM   POTASSIUM   CALCIUM   IRON
Globe1234                1,500            420                 5,300            1,000         18 
Raw                           2,440            846               11,401            1,660         24 
"What I Eat"              3,104         1,404                 6,050            1,070         22
NIH Low Salt #6        1,935         1,472                 4,710            1,214

A list of 40 other sample menus and US dietary standards shows how the recommended diets fall short of the standards, which makes it hard for people to follow the standards. A spreadsheet version of the list also shows how many calories we need, according to our age and height. 

Aside from one NIH diet, #6 listed above, all other diets from NIH, USDA, and the National Institute on Aging fail the standards, with excess sodium or shortfalls in other nutrients. US News and World Report lists 32 other diets, showing some of the same nutrients above; none of those diets has appropriate sodium (below 1,500) and potassium (above 4,700).  

There is a software website, EatThisMuch, (or another version Swole.me)which will generate diets with your choice of calories, sodium, protein, fiber, carbohydrate, fat, cholesterol. It is very helpful and creative, though even that site usually does not give enough calcium, potassium or other micronutrients.

Gerber offers a menu planner for children up to 4 years old. Sometimes a screen asks whether you are a health care professional (undefined); "no" takes you away from the planner, "yes" lets you continue. Click "Generate" for a week of menus, with a mix of Gerber products and unbranded foods. Then click in the "Nutrition Details" box (upper right) to see daily totals of sodium and other nutrients. Finally click  the column heading for each Day to see nutrients of each food. For example they averaged 1,000 mg/day sodium for a 4-year-old, but suggested one day withe 1,500 mg. Clicking on that day showed they included 724 mg from a sloppy Joe sandwich, 241 from a waffle and 164 from a tablespoon of Ranch dressing, so it wouldn't be hard to cut back.

Below is a sample of some of the best research on the generally high skills of high-volume doctors. You can find older studies in their end notes, and each entry gives the newer studies which cite them. You can also find many more studies with searches for "surgeon volume" and "physician volume".

There is also a research study, discussed at the bottom of this article, on the two causes of high volume: more referrals to the best doctors, and practice makes perfect. Companion articles address training of doctors and how to find high-volume doctors.

CANCER, HEART AND ANEURYSM SURGERY

"Surgeon volume and operative mortality in the United States." Birkmeyer JD, Stukel TA, Siewers AE, Goodney PP, Wennberg DE, Lucas FL,  N Engl J Med. 2003 Nov 27;349(22):2117-27.  with comments Cited by 101 articles.

"Patients can often improve their chances of survival substantially, even at high-volume hospitals, by selecting surgeons who perform the operations frequently...

"Increasing surgeons’ volumes would require that administrators and leaders in the field of surgery actively manage the way in which selected operations are distributed within their hospitals — that is, by restricting them to a smaller number of surgeons. Although such efforts would no doubt encounter resistance, they may be more practical and less controversial than policies focusing exclusively on redistributing patients among hospitals."

Low-volume surgeons had 1 to 10 more deaths per 100 patients than high-volume surgeons. See table above.

All types of surgeons had similarly risky patients: "there were no clinically important differences in predicted mortality rates [patient risk] according to surgeon volume."

The study counted deaths within 30 days of the operation (or during the same hospital stay, even if longer than 30 days), based on 470,000 Medicare patients in 1998-99. Surgeon volume includes estimates of non-Medicare patients. These estimates can be fractions.


"Is volume related to outcome in health care? A systematic review and methodologic critique of the literature." Halm EA, Lee C, Chassin MR, Ann Intern Med. 2002 Sep 17;137(6):511-20. Cited by 160 articles.

"69% of studies of physician volume reported a statistically significant association between higher volume and better health outcomes. No study documented a statistically significant association between higher volume and worse outcomes."

"[T]he most striking differences in mortality rates between high- and low-volume surgeons were seen for pancreatic cancer, ruptured abdominal aortic aneurysm, and pediatric cardiac surgery (median differences of 3 to 14 deaths per 100 cases for the three procedures). Surgeon volume seemed to be a more important determinant of outcomes than hospital volume in the case of CABG, carotid endarterectomy, surgery for ruptured abdominal aortic aneurysm, and surgery for colorectal cancer."

"Increasing evidence shows that high-volume providers may more consistently use proven effective therapies, such as aspirin or beta-blockers in [heart attacks] or adjuvant [followup chemo, radiation, or hormones] therapy in breast cancer...

"We found a positive association between physician volume and outcome in 62% of studies with no risk adjustment, 68% of those with risk adjustment using administrative data, and 73% of investigations using clinical risk-adjustment models."

A summary article in 2007 quotes a British specialist that death rates are lowest at hospitals which treat 43 or more abdominal aortic aneurysms  per year.

Newer articles include: 

Verma V, Allen PK, Simone CB 2nd, Gay HA, Lin SH​. Association of Treatment at High-Volume Facilities With Survival in Patients Receiving Chemoradiotherapy for Nasopharyngeal Cancer.JAMA Otolaryngol Head Neck Surg. 2017 Nov 2. doi: 10.1001/jamaoto.2017.1874. [Epub ahead of print] PMID: 29098291 DOI:10.1001/jamaoto.2017.1874

Chen YW, Mahal BA, Muralidhar V, et al. Association between treatment at a high-volume facility and improved survival for radiation-treated men with high-risk prostate cancer. Int J Radiat Oncol Biol Phys. 2016;94(4):683-690.

Haque W, Verma V, Butler EB, Teh BS. Definitive chemoradiation at high volume facilities is associated with improved survival in glioblastoma. J Neurooncol. 2017. doi:10.1007/s11060-017-2563-0

HEART ATTACKS

"Relationship between annual volume of patients treated by admitting physician and mortality after acute myocardial infarction." Tu JV, Austin PC, Chan BT, JAMA. 2001 Jun 27;285(24):3116-22. Cited by 20 articles.

"Patients with AMI [heart attack] who are treated by high-volume admitting physicians are more likely to survive at 30 days and 1 year."

"The 30-day risk-adjusted mortality rate was 15.3% for physicians who treated 5 or fewer AMI cases per year (lowest quartile) compared with 11.8% for physicians who treated more than 24 AMI cases annually (highest quartile; P<.001). The 1-year risk-adjusted mortality rate was 24.2% for physicians who treated 5 or fewer AMI cases per year (lowest quartile) compared with 19.6% for physicians who treated more than 24 AMI cases annually (highest quartile; P<.001)...

"Physician volume is a well-established determinant of outcomes after invasive cardiac procedures. Previous studies have demonstrated an inverse relationship between annual surgeon volume of coronary artery bypass graft (CABG) procedures and in-hospital mortality and between annual cardiologist volume of percutaneous coronary interventions (PCIs) procedures and complication rates after the procedure. [notes 1- 3] These associations have led to development of American Heart Association/American College of Cardiology guidelines that recommend a minimum annual volume of procedures that should be performed by cardiac surgeons and invasive cardiologists...

"Physicians who treated the most patients on an annual basis had the lowest 30-day and 1-year patient mortality rates, even after adjusting for potential confounders. The impact of physician volume on outcomes of AMI [heart attack] patients was comparable with the impact of physician volume on outcomes of invasive cardiac procedures... The association between physician volume and mortality was robust and existed across physician specialties.

"The results of our study are consistent with a previous study conducted using Pennsylvania hospital discharge data from 1993 that demonstrated an inverse association between physician volume and in-hospital mortality after an AMI. That study demonstrated that patients of low-volume physicians who treated 1 to 6 AMI patients per year had a 43% higher in-hospital mortality rate than high-volume physicians, defined as those who treated 24 or more AMI patients per year... Physician volume was a stronger predictor of 30-day AMI mortality than was physician specialty in both our study and the Pennsylvania analysis...

"our results do suggest that significant reductions in AMI mortality could be achieved by shifting the primary responsibility for treating more AMI patients to a smaller number of high-volume physicians. Hospitals that have low-volume physicians could consider designating a few physicians to handle all of their AMI cases or they could mandate that low-volume physicians work with high-volume physicians when treating AMI patients."

The study counted deaths among 98,000 heart attack patients at Ontario hospitals from 1992-1998.

The graph below shows death rates decline steadily as the number of heart attack patients treated by a doctor rise from 1-2 to 34 or more per year:

"2011 ACCF/AHA Guideline for Coronary Artery Bypass Graft Surgery" American College of Cardiology Foundation/American Heart Association, pp. 35-36 

" 5.1.1... Class I - 1. All cardiac surgery programs should participate in a state, regional, or national clinical data registry and should receive periodic reports of their risk-adjusted outcomes..." Patients can ask for these "periodic reports" cited in the American Heart Association guideline 5.1.1

"Class IIb - 1. Affiliation with a high-volume tertiary center might be considered by cardiac surgery programs that perform fewer than 125 CABG procedures annually...

"In general, the best results are achieved most consistently by high-volume surgeons in high-volume hospitals and the worst results by low-volume surgeons in low-volume hospitals. (notes 793,794) However, many low-volume programs achieve excellent results, perhaps related to appropriate case selection; effective teamwork among surgeons, nurses, anesthesiologists, perfusionists, and physician assistants; and adoption of best practices derived from larger programs. (notes 833,834)

"As a quality assessment strategy, participation in a state, regional, or national clinical data registry that provides regular performance feedback reports is highly recommended for all cardiac programs. Random sampling variation is greater at low volumes... Ultimately, state or national regulatory authorities must decide whether the lower average performance of very small programs and the added difficulty in accurately measuring their performance are outweighed by other considerations, such as the need to maintain cardiac surgery capabilities in rural areas with limited access to referral centers."

They cite many studies on supplemental pages 33-39. Most address hospital volume, not surgeon volume.

KNEE REPLACEMENTS

"The role of surgeon volume on patient outcome in total knee arthroplasty: a systematic review of the literature" Rick L Lau, Anthony V Perruccio, Rajiv Gandhi, and Nizar N Mahomed. BMC Musculoskelet Disord. 2012; 13: 250. Cited by 3 articles.

"Mortality rate, survivorship and thromboembolic events [clots] were not found to be associated with surgeon volume [of knee replacements]. We found a significant association between low surgeon volume and higher rate of infection (0.26% - 2.8% higher), procedure time (165 min versus 135 min), longer length of stay (0.4 - 2.13 days longer [in hospital]), transfusion rate (13% versus 4%), and worse patient reported outcomes...

"After reviewing the available studies, we would identify a high surgeon volume as > 50 TKA [Total Knee Replacements] per year. Three studies identified a statistically significant relationship between low surgeon volume and higher infection rates (0.26% - 2.8% higher)...

"Early to midterm (up to 8 years) implant survivorship did not appear to be influenced by surgeon volume [notes 18,25,32]. Whether similar findings hold over the longer-term (i.e. >8 years) is unknown...
    "In the one study which examined patient-reported outcomes, Katz et al (2007) reported a positive association between LV [Low Volume] surgeons and poorer TKA outcomes [in US Medicare, study summary below]...

"Evidence suggests that some patients would refuse to have surgery in an unfamiliar setting, preferring to attend a local health provider with lower procedure volume [notes 35,52]. In the US, the poor, less educated, elderly, as well as racial/ethnic minorities are more likely to undergo TKA at low volume centers [notes 11,36,38]. Regionalization of TKA to high volume centres and surgeons may further exacerbate existing disparities in the utilization of TKA and restrict access to some patients who would otherwise use a low volume provider for TKA, increasing the number of patients who decline or defer their elective TKA surgery with resultant poorer health outcomes [notes 2,11,53]. A regionalization program involving referral to high volume surgeons and hospitals might decrease the already low rate of perioperative complications at the cost of increasing arthritis related disability [note 11]. Evidence suggests that having TKA in low volume hospitals costs more and produces worse outcomes than having TKA in high volume centers, but having TKA in low volume centers is still more cost effective than not having TKA at all [note 35]. While these studies were specific to examining the role of hospital volume on cost effectiveness of TKA, it is possible that the same may hold true for surgeon volume and TKA."


"Association of hospital and surgeon procedure volume with patient-centered outcomes of total knee replacement in a population-based cohort of patients age 65 years and older." Katz JN, Mahomed NN, Baron JA, Barrett JA, Fossel AH, Creel AH, Wright J, Wright EA, Losina E. Arthritis Rheum. 2007 Feb;56(2):568-74.  Cited by 30 articles.

"The questionnaires assessed lower extremity functional status using the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) [notes 17,18]. The WOMAC contains... a 17-item scale that assesses lower extremity functional status... 

"Scores <60 indicated poor outcome. Sixty is a typical preoperative score... WOMAC functional status scores <60 increased from 10% among patients of surgeons who performed >50 cases per year in the Medicare population to 20% among surgeons who performed ≤12 per year...

"Patients operated upon in higher volume hospitals by higher volume surgeons had the lowest rates of worse functional outcomes (WOMAC functional status score <60, unable to flex the knee 90 degrees, unable to extend knee fully), while patients operated upon by lower volume surgeons in lower volume centers had the highest rates of these poor functional outcomes...

The risk of a poor WOMAC score ranged from 8.4% for patients in the high-volume centers operated upon by a high-volume surgeon to 22.6% for patients in low-volume centers operated upon by low-volume surgeons...  The finding of a volume effect on function and range of knee motion, but not on pain or satisfaction, suggests possible mechanisms. In high- and low-volume settings, the pain generator, the arthritic knee, is removed during surgery in all patients. Thus, pain relief is generally excellent. However, low-volume surgeons in low-volume centers may be less skilled at soft tissue balancing required to achieve the normal motion necessary for full function."

The study used questionnaires from a random sample of 906 Medicare patients 2 years after their total knee replacements, which were in 2000. These provided a 58% response rate among those sampled and invited.

HIP REPLACEMENTS

"Early failures of total hip replacement: effect of surgeon volume." Losina E, Barrett J, Mahomed NN, Baron JA, Katz JN. Arthritis Rheum. 2004 Apr;50(4):1338-43. Cited by 30 articles.

"Clinicians should consider surgeon volume among the factors influencing their referrals for elective THR." [Total Hip Replacement]

"Patients of low-volume surgeons have higher rates of revision THR than patients of high-volume surgeons, particularly within the first 18 months postoperatively."

15,000 elective Medicare hip replacements were done in 1995 by surgeons who did less than 12 Medicare hip replacements that year. 4.5% of these needed to be redone (revised) within 4 years, usually within 18 months. Among the 42,000 hip replacements done by surgeons who did 12 or more, 3.5% needed to be redone. This is a noticeable difference if you are in the 1% who avoided a second hip replacement. See graph below.

"Our definition of THR failure was simply the occurrence of a revision THR. Clearly, patients can have a poor outcome of THR yet not receive revision surgery, either because they prefer not to have surgery or because they are poor surgical candidates...

"Medicare population represent at least 67% of the total number of THRs performed in the US."

HERNIAS

"Proficiency of surgeons in inguinal hernia repair: effect of experience and age." Neumayer LA, Gawande AA, Wang J, Giobbie-Hurder A, Itani KM, Fitzgibbons RJ Jr, Reda D, Jonasson O; CSP #456 Investigators. Ann Surg. 2005 Sep;242(3):344-8; discussion 348-52. Cited by 5 articles

 "Surgeon's inexperience and older age were significant predictors of recurrence in laparoscopic herniorraphy [repair]... This analysis demonstrates that surgeon's age of 45 years and older, when combined with inexperience in laparoscopic inguinal herniorraphies, increases risk of recurrence... We found a significantly higher recurrence rate in the laparoscopic group (10%) than in the open group (5%). Surgeons reporting experience with more than 250 laparoscopic herniorraphies before the beginning of the study, however, had recurrence rates with laparoscopic repair equivalent to that with open repair (5%)." Both types of repairs in this study placed mesh in the patient.

This study reports the experience of the "attending" or teaching surgeon. 96% of the operations also had an intern or resident, as discussed in the Training section.

Attending "Surgeons 45 years and older at the beginning of our study would have learned these [laparoscopic] techniques after completion of a surgical residency through a variety of means, including short courses and formal or informal preceptorships... The inadequacy of effective learning programs was sharply evident when experience was lacking... The methods of teaching older surgeons new techniques may need to be modified."

This study reported higher recurrence for experienced young attending surgeons than for inexperienced; there were only 2 experienced young attending surgeons.

Much higher volumes of hernia repair are done at the specialist Shouldice Hospital in Ontario, where each surgeon repairs 600-800 hernias per year. Furthermore the assistant surgeons are not interns or residents. They have 1% recurrence (based on 65,000 cases in 1993-2007), compared to 5% in other Ontario hospitals (170,000 cases), and 5-10% in the US. 

"If the operations had all been recorded, the situations where error occurred could be identified... This would lead to more specific courses of instruction, which should improve outcomes. It almost certainly would shorten the average learning curve from 250 cases to a more practical number... A commitment to making video records a routine aspect of future trials on surgical  technique has much to recommend it...

"Hernias are traditionally one of the first operations that surgeons assist junior residents during surgery training... We believe in the majority of open repairs, that the resident was on the side of the hernia, and presumably was the person making the cut and putting the stitches in.

​ESOPHAGUS BLOCKAGE

Association of Surgical Volume With Perioperative Outcomes for Esophagomyotomy for Esophageal Achalasia, JAMA Surgery, Dec. 20, 2017

TWO CAUSES OF HIGH VOLUME

"The volume-outcome relationship: practice-makes-perfect or selective-referral patterns?" Luft HS, Hunt SS, Maerki SC. Health Serv Res. 1987 Jun;22(2):157-82. ncbi.nlm.nih.gov/pmc/articles/PMC1065430/  Cited by 50 articles.

A common explanation of good work with high volume is the, " 'practice-makes-perfect' hypothesis. An alternative explanation is that physicians and hospitals with better outcomes attract more patients - the "selective-referral pattern" hypothesis. Using data for 17 categories of patients from a sample of over 900 hospitals... both explanations are valid, and that the relative importance of the practice or referral explanation varies by diagnosis or procedure, in ways consistent with clinical aspects of the various patient categories."

Four "Procedures and diagnoses... exhibit high volumes resulting in lower death rates, but there is no measurable influence of outcomes on volume; that is, the practice-makes-perfect effect predominates. All four of these, acute myocardial infarction [heart attack], stomach operations, intestinal operations, and cholecystectomy [remove gallbladder], are usually managed by the family physician or a general surgeon, perhaps in consultation with local cardiologists or gastroenterologists. There is little reason to seek outside specialty consultations, so referrals to centers with particularly good outcomes are unlikely."

For four others "the selective-referral effect predominates. Volume has no effect on death rates, but hospitals with low death rates attract patients with abdominal aortic aneurysm, fracture of the femur... transurethral resection of the prostate, and coronary artery bypass graft...

"Insurers are developing preferred provider organizations with financial incentives for enrollees to use selected hospitals... if only the practice-makes-perfect hypothesis is applicable, then the selection criterion is irrelevant. Regionalization efforts will improve outcomes in the selected hospitals-and perhaps worsen them in those that lose patients. 

"However, if selective-referral patterns are" important, outcomes "may worsen markedly if the higher-quality settings are excluded and if increased volume in the selected hospitals does not improve outcomes sufficiently to offset the loss of the better providers... the possibility that unmeasured, but nonetheless important, physician and hospital factors influence outcomes and that existing referral patterns may already reflect such factors. Policymakers and insurance companies must also be cautious, because the results suggest that the roles of practice, referral, and other factors vary across diagnoses and procedures."

"If primary physicians initially choose specialists at random, then switch referrals after one "bad outcome," patients eventually are directed away from providers with outcomes truly worse than average. Furthermore, even if the majority of patients go to the nearest hospital or otherwise make decisions independent of perceived outcomes, a minority seeking or referred to the "best provider in town" (or referred away from "poor-quality providers") will result in a selective referral pattern for specific diagnoses and procedures... The question, therefore, is whether some patients are influenced in their choice of physicians and hospitals by relative performance, not whether all patients are so influenced...

[H]igher-than-expected volumes for a specific procedure or diagnosis may, in fact, be the best single indicator of exceptionally good outcomes... As an analogy, consider the situation of a new visitor to a city... indication of relative quality might be the number of patrons in each [restaurant]. Our visitor would probably be wise to avoid places that are nearly empty and, if there is no hurry, a long line would be not only a measure of popularity but perhaps the best single indicator of good food within a given price range."

RETURN TO ARTICLE ON FINDING HIGH-VOLUME SPECIALISTS

Initial Training, and Re-training Senior Doctors

Complications, A Surgeon's Notes on an Imperfect Science, by Atul Gawande, published by Henry Holt, 2002. find library or excerpts or buy

" 'Hello, I'm Dr. Gawande. I'm one of the surgical residents, and I'll be assisting your surgeon'... Yet to say I just assisted remains a kind of subterfuge. Otherwise, why did I hold the knife? Why did I stand on the operator's side of the table? Why was it raised to my six-feet-plus height?...

"When an attending physician brings a sick family member in for surgery... a first-timer is certainly not going to do it. Conversely, the ward services and clinics where residents have the most responsibility are populated by the poor, the uninsured, the drunk, and the demented...

"You do get good at certain things, my father [a urologist] tells me, but no sooner than you do, you find what you know is outmoded, New technologies and operations emerge to supplant the old, and the learning curve starts all over again. 'Three-quarters of what I do today I never learned in residency,' he says. On his own, fifty miles from his nearest colleague... he has learned to put in penile prostheses, to perform microsurgery, to reverse vasectomies, to do nerve-sparing prostatectomies, to implant artificial urinary sphincters. He's had to learn to use shock-wave lithotripters, electrohydraulic lithotripters, and laser lithotripters (all instruments for breaking up kidney stones); to deploy Double J ureteral stents and Silicone Figure four coil stents and Retro-Inject Multi-Length stents (don't ask); to maneuver fiber-optic ureteroscopes... 

When an important new device or procedure comes along, as they do every year, surgeons start out by taking a course about it -- typically a day or two of lectures by some surgical grandees with a few film clips and step-by-step handouts. We take a video home to watch... But there's not much by way of hands-on training. Unlike a resident, a visitor cannot scrub in on cases, and opportunities to practice on animals or cadavers are few and far between. (Britain, being Britain, actually bans surgeons from practicing on animals.) ... Patients do eventually benefit -- often enormously -- but the first few patients may not and may even be harmed... you can't train novices without compromising patient care... 

"Do we ever tell patients that because we are still new at something, their risks will inevitably be higher, and that they'd likely do better with others who are more experienced? Do we ever say that we need them to agree anyway? I've never seen it. Given the stakes, who in their right mind would agree to be practiced upon?... 

"I noticed on the expert's desk a picture of his child, born just a few months before... 'So did you let the resident deliver?'... 'No,' he admitted. 'We didn't even allow residents in the room.'...

"If you're going to do nothing but fix hernias or perform colonoscopies, do you really need the complete specialists' training (four years of medical school, five or more years of residency) in order to excel?"

Limited Quality of First Training

"Does resident post graduate year influence the outcomes of inguinal hernia repair?" Wilkiemeyer M, Pappas TN, Giobbie-Hurder A, Itani KM, Jonasson O, Neumayer LA. Ann Surg. 2005Jun;241(6):879-82; discussion 882-4. Cited by 7 articles

"Despite the presence of an attending surgeon, open hernia repairs performed by junior residents were associated with higher recurrence rates than those repaired by senior residents."

96% of hernia repair operations in the study had interns or surgical residents doing or helping with the operation. Interns and 2nd year residents had a recurrence rate on open hernia repairs (not laparoscopic) of 6.4%, 3rd year residents had 3.0%, and 4th or later year residents had 1.1%. 

All levels averaged 9.8-11.5% recurrence on laparoscopic hernia repairs. "Only when the attending surgeon and the resident are highly experienced in laparoscopic repair techniques, are recurrence rates for laparoscopic repairs reduced."

"Hands-on instruction and graded clinical responsibility are integral components of surgical education in North America... One variable that could have affected the results seen in this study is degree of attending surgeon supervision. Fallon et al (note 11) have reported that, when surgical procedures were performed with low levels of attending surgeon supervision, complication levels and mortality were raised... 

"Under these circumstances, the results we describe raise important questions about the effectiveness of supervision of inexperienced surgery residents. While it is understandable that the instruction of an inexperienced resident will take longer and lengthen the operative time, why were recurrences more common when junior residents were involved? Should not the supervising surgeon corrected [sic] any errors in technique and achieved the same outcome as if the attending surgeon had performed the operation?"

The attending surgeons knew they were part of a study where results would be measured. Would they do even worse normally?

"If experience is required of a closely supervised surgery resident to achieve optimal patient outcomes, how is it possible to begin the educational process for a surgeon-in-training and still safeguard each patient’s welfare?... Which points in each procedure are most vulnerable to inexperience? What must the attending surgeon do to confirm accomplishment of maneuvers critical to the outcome of the procedure?... None of these questions has been adequately addressed by surgical educators... 

"Hopefully, the future will include better training tools for teaching surgical procedures outside of the operating room... 

"Should only senior residents do hernias? I think the answer is clearly no. I think we have to be better at teaching interns and second-year residents how to do these operations."

One question in the discussion published with the paper asked, "do you plan to change anything based on patient informed consent, given the data in this study?" No further discussion of patient information or consent was given.

Weaknesses of Senior Doctors, Benefits of Simulators

"Assessing the Performance of Aging Surgeons" Katlic, Coleman, Russell, free summary in JAMA

"considerable decline with age in virtually every test...  lack of self-awareness is common... experience and decision-making of older surgeons contribute to the lower mortality through both improved patient selection and avoidance of high-risk procedures." So patient access can be reduced by older surgeons' selection of patients.

"Expertise in Medicine and Surgery" Norman, Eva, Brooks, Hamstra, chapter in Cambridge Handbook of Expertise and Expert Performance, edited by Ericsson. Charness, Feltovich, Hoffman. Cambridge University Press, 2006. cited by 133 studies.

"Systematic consideration of the causes of poor performance in older physicians suggests that premature closure (i.e., excessive reliance on one’s early impressions of a case) may be the primary source of difficulty for those with more experience (Caulford et al., 1994). In other words, more-experienced physicians appear more likely to accurately diagnose using pattern recognition, but as a result of increased reliance on this strategy, they also run the risk of being less flexible, failing to give due consideration to competing diagnoses (Eva, 2002). Historical work into the cost of experience confirms that the more one relies on automatic processing, the harder it is to exert cognitive control when problem solving (Sternberg & Frensch, 1992). More recently, Hashem, Chi, and Friedman (2003) have presented data supporting this idea, showing that medical specialists have a tendency to pull cases towards the domains in which they have the most experience."

"Several studies (Anastakis et al., 1999; Matsumoto et al., 2002; Grober et al., 2004) have now shown that technical skills acquired on low-fidelity bench models transfer to improved performance on higher-fidelity models (such as human cadavers), as well as live patients in the operating room, both in laparoscopic surgery (Scott et al., 2000) and anaesthesia (Naik et al., 2001)." This finding suggests that volume can be obtained in training, without putting humans at risk.

Studies published since 2006 show the continuing need for bench training, such as a 2014 plan for $100 laparoscopic simulators for constant home practice, not just $2,000 simulators for occasional practice at a hospital: "the laparoscopic approach is quite different and different skills are needed. The first is the ability to perform actions in three dimensions when only two can be observed on the monitor. The second is that the difference of depth perception, spatial relationship and long surgical instruments requires perfect eye-hand coordination. Moreover, the arms of the tools act as levers with a fulcrum at the site of the skin incision, and hence the real action with the tool handles is a mirror of the movement of the tool tips seen on the monitor." 

Simulation can include live animals, cadavers, artificial materials and virtual reality with tactile feedback. Some authors are concerned there is not enough time to train since residents are limited to 80 working hours/week in the US and 48 in the UK.

A 2013 synthesis commented that with the rise in laparoscopic training, "the open operative experience of current surgical residents has decreased significantly. This deficit poses a potentially adverse impact on both surgical training and surgical care. Simulation technology, with the potential to foster the development of technical skills in a safe, nonclinical environment, could be used to remedy this problem...

"This is particularly true with regard to skills required to competently perform technically challenging open maneuvers under urgent, life-threatening circumstances. In an era marked by a decline in open operative experience, there is a need for simulation-based studies." 

Another 2013 overview says simulation should be required in surgical training and asks why it is not, "simulation is still not a mandatory component of all surgical training...

"The role of simulation is not to replace conventional training in the operating room but rather to augment it. By training in a simulation laboratory, a surgeon can acquire the necessary cognitive, technical, and nontechnical skills to shorten his or her learning curve in the operating room."

They even recommend simulated operating rooms to teach group work. Current training fails "to address such nontechnical skills as communication, teamwork, situational awareness, decision making, and leadership. This failure to address nontechnical skills is not acceptable, given the evidence that communication breakdown and failures in leadership and teamwork might be the root cause in up to 60% of major perioperative complications."

The Medical Director and Chief Academic Officer at Carolinas HealthCare System: "Bullard and Hall say the $1 million [simulation] program has paid off by helping doctors and nurses respond to sepsis in the simulation center, rather than relying on real-time cases to learn the procedure. 'It used to be that you saw one, did one, and then taught one. But those days are gone,' Bullard says. 'It's no longer safe to practice that way. Residents learn better in experiential learning environments.' "

Benefits of High Volume per Year, Weaknesses of Older and Senior Doctors

"Prestige of training programs and experience of bypass surgeons as factors in adjusted patient mortality rates." Hartz AJ, Kuhn EM, Pulido J, Med Care. 1999 Jan;37(1):93-103. Cited by 10 articles.

Findings on Annual Volume and Lower Deaths:

"As with previous studies, we found that the more operations a surgeon performed [per year], the lower the mortality rate. notes 8-11 This association may result because a greater number of surgeries may improve physician performance. It is also possible that the best surgeons may be referred the most cases."

The study covered deaths among 83,500 patients in 1990-92 in Pennsylvania (46,000), New York (38,000), Wisconsin (3,000). Each NY surgeon had treated 200+ patients in 3 years. Each Pennsylvania surgeon had treated 30+ patients per year. The Wisconsin patients were only from Medicare, and only from 1 year, mostly 1990, and included surgeons who treated any number of patients.

Findings on Years of Experience, Academic Rank and Higher Deaths:

"Mortality ratios... increased with years of experience, age and academic rank." See graph below left.

Patients' web browsing, purchases and social media comments often reveal their diseases. A good poster and study show how hundreds of data brokers buy this health information and spread it widely. Books include Our Bodies Our Data 2017,  Dragnet Nation 2015, What Stays in Vegas 2014. A 2018 review is in The Guardian.

Articles by the Wall Street Journal and Abine (which sells anti-tracking software) explain how trackers get information from your browser. The New York Times explains how apps leak data to dozens of software companies who provided building blocks for the app. 

The Wall Street Journal's reporters found their own paper's site was unintentionally sending email addresses, real names, gender, birth year and other data to three companies along with IP address, until the reporters discovered the leaks. This is a sophisticated company, which knows the value of its data, unintentionally sending the data out free, and the problem is widespread. Once a data broker gets this link of real name with IP address, they can link that name to all their other data about that IP address. The FTC confirms that companies sell massive data for matching with IP address, while pretending that data are anonymous.

Data brokers comb such releases to see the names which use each IP address, and keep those names on file. Thus in homes with a fixed IP address, no browsing is anonymous. At businesses where many users share IP addresses, the brokers can't always identify people, but they can track the web use of the business overall, and thus its plans. Top executives or departments may have distinctive browsers (e.g. presence or absence of cookies, use of certain websites), so they would stand out from the company as a whole.

Students applying to college are specifically tracked by a company called Capture Higher Ed "Initially, the cookies identify each [web] visitor by the IP address, a unique code associated with a computer’s Internet connection, but Capture also offers software tools to match the cookie data with people’s real identities, according to the company’s promotional videos. Colleges do this by sending marketing emails to thousands of prospective students, inviting them to click on a hyperlink inside the message for more information about a particular topic, according to the videos. When a student clicks on the link, Capture learns which email address is associated with which IP address."


Facebook, LinkedIn and other advertising networks also link information from your contacts.

A 2017 study found that a list of the URLs you visit can be matched to you, even after IP address is suppressed, by:

• ​matching URLs in the list with domains you mentioned on Twitter or other social media at the same time. About 10 domains and timestamps are usually enough to identify someone uniquely.
• matching URLs of videos you watched with public lists of videos liked, or reviewed
• looking for administrative ids at some social media sites which are only visible to you as a user, and show up in the list of URLs.

After identifying you, they know you also visited all the other URLs in the list, including diseases, doctors, articles you were interested in, etc. Your browsing history is tracked not just by cookies on the web, but also by your browser, its plugins, and your internet service provider. The authors say privacy can be protected by using "Rotating proxy servers (n >> 1) e.g. TOR or a VPN with rotating exit nodes [and] Client-side blocking of trackers" ​Article and slide show.
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Conversations in public places are also subject to electronic eavesdropping, and to security cameras' facial recognition tracking, since laws generally allow no expectation of privacy in a public place.

Another article here compares tracking and privacy on sites where consumers review doctors. The table below summarizes tracking software on these and other medical sites. The trackers tell data companies what diseases and treatments each person is researching.

• It is hard, but not impossible to get out of many of these databases.
• Oracle (formerly BlueKai) has profiles on 700 million people and companies, covering 30,000 topics.
• Acxiom (with top political connections) has "hundreds of measures available about individuals." It says it can reach customers "across direct mail, display, email, social and TV. This match data..." It lost 1.6 billion records to one hacker in 137 intrusions over 7 months, which the FBI discovered when investigating an earlier hacker.
• Another data broker, LexisNexis, claims "the largest and most comprehensive base of public and proprietary information available today. We leverage approximately 37 billion public and proprietary records."
• IDI (Interactive Data Intelligence), according to Bloomberg, "profiles include all known addresses, phone numbers, and e-mail addresses; every piece of property ever bought or sold, plus related mortgages; past and present vehicles owned; criminal citations, from speeding tickets on up; voter registration; hunting permits; and names and phone numbers of neighbors. The reports also include photos of cars taken by private companies using automated license plate readers—billions of snapshots tagged with GPS coordinates and time stamps to help PIs [private investigators] surveil people or bust alibis. IDI also runs two coupon websites, allamericansavings.com and samplesandsavings.com, that collect purchasing and behavioral data ... [which ask for] arthritis, asthma, diabetes, or depression, ostensibly to help tailor its discounts." One partner in IDI with deep pockets is "billionaire health-care investor Phillip Frost."
• IBM has detailed health care data on 300 million US patients from electronic health records, health insurance claims, imaging, genetics, medical health data, all of which they put in their Watson supercomputer.
• IMS Health and Symphony Health specialize in medical data, including prescription records from 3/4 of US retail pharmacies.
• Verizon and AT&T have worked on tracking all mobile web browsing with their phones.
• Apps of all types can sell records of where you go.
• Your activity on social media is also analyzed and sold to anyone, including government or private companies investigating you or your contacts. Courts say there's no expectation of privacy when you post things for your friends, since copying is so easy.
• Privacy statements on websites are complex. Tosdr.org and UseablePrivacy.org highlight some of the issues.
• You can see your information at some brokers, and opt out of some. The Future of Privacy Forum and Patient Privacy Rights discuss issues.

Hospitals buy similar information to know even more about their patients. Three quarters of hospitals let data brokers know the IDs of every patient, so the data brokers can tell the hospital which patients are wealthy enough to approach for donations.

Credit and debit card payments to doctors, hospitals, and anyone else reveal your spending (and therefore your medical patterns) to the company which owns the credit/debit card terminal, the doctor's bank, the VISA or MasterCard network which transmits the payment, your bank, and their contractors. Emailed receipts reveal your spending to your email host.

Most websites track their users. To reduce this tracking, Chrome, Epic, Firefox, Opera and Tor can delete all cookies at the end of each session. Epic, Tor and virtual private networks minimize access to your IP address (though ads may reveal you anyway). Epic, AVG, Blur (formerly DoNotTrackMe) and Disconnect.me block trackers.

HIPAA forbids release of personal health data from health providers, health insurers and clearinghouses (with exceptions below). From 2003-2013, medical records were released improperly in 116,000 incidents. Most affected 1-499 people, and these incidents are not listed publicly.

​There is little enforcement. Breaches come from hackers, and from inside staff. Corporate changes are especially dangerous, including mergers, divestitures, buyouts, downsizing, etc., when data can be "accidentally transferred."

From 2003-2012 federal enforcers investigated 18,559 of the cases of noncompliance that people complained about, and resolved these cases "by requiring covered entities to take corrective actions and/or provided technical assistance to covered entities to resolve indications of noncompliance" (p.7). They had money penalties in up to 21 cases, totaling $25 million.

The federal government lists 1,300 incidents (if offline, see April 2014 copy). In each of these incidents 500 to 5 million medical records were released improperly, totaling 31,300,000 people, 5% paper and 95% electronic. Most were breached by stealing a computer or smart phone with unencrypted patient records. However a record fine, $4.8 million, was for accidental internet release of 6,800 patients' records ($700/patient) when a network computer was deactivated. The federal site does not yet include cases which are still under investigation, such as 80 million records taken from Anthem, announced in February 2015 (38 million customers and 42 million former customers).

A spreadsheet lists and counts the biggest medical incidents by state, year and type (paper, laptop, etc). HHS also lists statistics and examples of cases. You can search guidance, or get email announcements on medical privacy.

The list does not classify entities which leaked data, but the list shows primarily hospitals, medical groups, insurers, public health departments, and their contractors.

The FBI warned in 2014 that the health industry was very vulnerable to cyber attacks. A consultant analyzes the problems, with good examples. 

C. Recorded Conversations with Doctors and in Operating Rooms

Verilogue pays "thousands" of doctors of many specialties to ask patient permission to record doctor-patient conversations, 150,000 conversations as of early 2019. Verilogue creates transcripts, analyzes them, and combines them with patient medical records and doctor assessment of patient attitudes, to tell drug companies how products and symptoms are discussed. It says drug companies can re-write their ads and hand-outs based on "underlying emotional drivers affecting acceptance of treatment... enliven your presentations with actual customer voices..." The recordings can be searched by type of doctor, patient traits, and words used in the recording.

Verilogue tells patients the information goes to "healthcare and wellness organizations which help them: Advance their understanding of what you experience as a patient; Improve their products and services to better serve you and patients like you." 80% or 75% of patients for the sampled doctors agree to be recorded. Verilogue does not seem to tell patients the "anonymous audio" will be distributed. The recordings can be subpoenaed, but not by patients.

Hospitals have peer reviews of doctors, which often cannot be accessed in lawsuits in state courts, as well as safety reviews which often cannot be accessed in state or federal courts.

Hospitals are developing ways to make detailed recordings of operating rooms.

​Doctors have various reactions when patients overtly or covertly record conversations.


D. Electronic Medical Records

A few good electronic systems show key information clearly in the way that each clinician needs it, and are rare, because hospitals have complex flows of information.

• Even the worst systems store information more accessibly than thick paper binders of: records, test results, prescriptions, notes from specialists, etc. 
• Systems do not create a simple 1-page summary of a complex patient, in the way that a wise patient does.
• Only some health care sites use standard computer protections:

1. Antivirus/malware protection: 85% of hospitals and 90% of doctor's offices
2. Firewalls: 78% 90%
3. Data encryption (data in transit): 68% 48%
4. Audit logs of each access to patient health and financial records:  60% 61%
5. Data encryption (data at rest):  61% 48%
6. System to ensure all updates and patches are installed:  61% 42%
7. Intrusion detection systems (IDS):  57% 42%
8. Network monitoring tools: 55% 45%

• Even the best systems do not send the doctor's orders, prescriptions and test results to patient, caregiver and outside doctors treating the patient. 
• Hospital patients don't get the same daily printouts of lab tests that doctors get, but have to ask busy nurses to print out results, which are not as well formatted as the doctors' versions. 
• While systems send new prescriptions to outside pharmacies, they do not instruct the outside pharmacy to cease automatic renewal of terminated prescriptions. 
• Data cannot transfer easily between electronic systems from different vendors (in the way that .doc, .html and .csv files transfer among computer programs). 
• The policy drive for electronic records makes it easier to breach privacy on large numbers of records, by accident or by theft. Electronic systems are insecure (like business, or security software, or NSA; even the VA has 4,000 vulnerabilities). 

Politico has summarized widespread dissatisfaction. Bad systems are not read by clinicians, are full of errors, generate erroneous prescriptions, and interrupt doctors when listening to patients (though one doctor uses a 32" monitor on the wall to discuss everything with patients). The Boston Globe reports deaths and errors from electronic records, accompanied by government decisions not to require reporting of such errors. Note that deaths and errors can also come from paper systems, and reporting has not been any better for those errors. The difference is scale, as in the old adage, "To err is human, to really mess things up requires a computer."

Federal standards for electronic systems do not protect privacy as required by law: "The more stringent rule requires patient consent before a patient's healthcare information about drug or alcohol abuse treatment can be shared with another provider or health information exchange, even for treatment... Thus far, the federal EHR incentive payment program has ignored this requirement when it has set technical standards for EHR vendors to meet in the first two editions of software that must be tested and certified for use by healthcare providers in Stage 1 and Stage 2 of the program." 

7% of doctors do not have electronic record systems and do not plan to get them. 22% plan such limited use that they will be penalized by Medicare. 70% of doctors find electronic records decrease face time with patients. 48% or more worry about patient privacy, including 38% who worry about hacking. The main reasons doctors do not use them include 40% who believe they interfere with the doctor-patient relationship, 29% who believe they make medicine too mechanical, and 28% who worry about patient privacy.

The most widely used systems are Epic (23% of doctors), Cerner (9%) and Allscripts (8%), primarily because they are widely chosen by hospitals. These are rated by doctors as the 7th, 15th and 14th best systems. All 3 are listed by the Boston Globe as having high officials donating to or working for the Obama administration.

Doctors rate highest the Veterans Administration system (VA-CPRS), Practice Fusion, and Amazing Charts. However most doctors have not used many systems, and it is hard for a practice to switch systems after the cost of entering patient data into one. Among the few doctors who know the cost, over half say their systems cost over $50,000 per doctor to buy and install.

E. Many Releases Are Allowed by Law

Many outsiders can obtain medical records legally. Privacy laws allow release  (without patient authorization) for: 

Rules are at 45 CFR 164 and 160.
​
Rules were updated in 2013: lawyer's summary, published rule and press release.

All medical records can be subpoenaed, as explained by ABA, Massachusetts Bar, Iowa Medical Society, and a liability insurer. Electronic records are cheaper to subpoena than paper records, since copying is cheaper. 

Federal rules of evidence do not protect doctor-patient confidentiality in federal courts, though most state courts do. Federal prosecutors use their access to private health care data in prosecutions.

Disclosures have the same limits for 50 years after death.

Covered entities can send patient information to their fund-raising arms, which can send the information to data brokers, thus telling the data broker the person has been treated by the covered entity, and buying information such as the person's income, wealth and interests. This was clarified in the 2013 rule.

The following organizations do not have to follow the Privacy and Security Rules for data they have. A good poster and study show how hundreds of data brokers buy this health information and spread it widely.

• online shopping sites (know what health items you bought)
• credit card companies
• social networks (know your messages about your and your friends' health)
• life insurers
• employers
• workers compensation carriers
• most schools and school districts
• many state agencies like child protective service agencies
• most law enforcement agencies
• many municipal offices
• health care providers small enough that they don't electronically send health insurance claims and eligibility to insurance companies

Disclosure rules are stricter on substance abuse, though the government loosened those rules in January 2017 to ease its efforts at letting many providers share information on patients. They have been criticized both for too much control, and for making patient release forms too hard for patients to understand.

Disclosure rules are also strict on mental illness, and the government plans to loosen them to keep mental patients from access to guns.

An article shows practical barriers to carrying out the law and suggests more access for relatives. A longer explanation of medical privacy is at the Privacy Rights Clearinghouse.

HHS lets information be released if the following are removed: patient/relatives/employers' names, ID numbers, addresses except state or 3-digit zip with 20,000+ people, IP addresses, URLs, equipment numbers, months and days of any event, and years over 90 years ago (so people 90 and older are grouped), biometric identifiers (e.g. finger/voice prints), "full-face photographs and any comparable images, Any other unique identifying number, characteristic, or code," such as dental charts. Even these can be released if a statistical expert certifies a "very small" risk of identifying people. Lawyers say the expert approach is common, though I cannot imagine an expert saying that releasing more is safe. Even the HHS list does not protect privacy: it allows records with your age, doctor names, and diagnoses by year, which data brokers can compare to your social media postings. Movers can be identified by a series of 3-digit zip codes.

Medicare itself releases individual patient records to researchers who get approval and sign a data use agreement. The data use agreement refers to other documents for computer security, does not specifically cover access to, or deletion of backup systems, locking of offices and cars, etc.

Records on your own phone or computer, with a password, are fairly well protected, since the rules against self-incrimination let you refuse to provide a password. However protection by face recognition or thumbprint is not secure, since police can get a search warrant forcing you to provide your face or thumbprint (just like a breathalyzer). "The expression of the contents of an individual's mind [e.g. password] falls squarely within the protection of the Fifth Amendment... Courts are in relative accord that the Fifth Amendment doesn’t protect against the production of physical features or acts."

F. Damages and Alternatives

An extensive article in Politico says hackers can sell medical records for hundreds of dollars, and people use them to get prescription drugs for resale. A 2013 article in Wired said companies with big business outside health care, like Google were leaving the business of patient data to avoid liability when things go wrong. A 2015 article said 2 Google subsidiaries were producing health care inventions.

The government rarely imposes penalties for privacy breaches, and it is hard for individuals to sue for damages, though they may claim deceptive privacy statements, or other grounds.

A legal review points out, "Trusted insiders often are granted access to an organization’s most sensitive data without a proper understanding of the information security policies and procedures that govern usage... Employees should be aware of common attack vectors specific to their industry, and they should be provided with examples of attempted or successful attacks on their company and on similar organizations... Putting employees through regular mock breach scenarios can be a good way to determine the adequacy of response times and to evaluate existing procedures."

An ID company warns about keeping your purse or wallet secure when you strip for a medical procedure, by giving it to a friend or asking for it to be locked up, or entrusting it to a staff member you trust

In Dominica each patient carries his/her own medical record, creating an incentive to maximize involvement, availability and security.

G. Comparison of Lists of Data Breaches

• All lists omit the many breaches, large and small, which companies fail to report.
• As noted above the federal HHS list covers medical breaches affecting 500 or more people and does not yet include cases which are still under investigation.
• National lists (pdf) of medical and non-medical breaches as soon as they are reported by government or press, and no matter what the size, are at the ID Theft Resource Center, sponsored by a company which sells services for ID theft prevention and recovery. Each year the "Breach Stats Report" is a compact list of key facts on each breach, while the "Breach Report" has more detail when available. Often the initial listing from press reports does not show the number of people affected, but the site inserts it later if the number becomes available in followup reports or the HHS site. Breaches which appear on the CA Attorney General site must be over 500, but the ID Theft Resource Center site does not update with just that information.
• The CA Attorney General, lists all breaches which affect 500 or more Californians, as soon as a notification letter is sent to people affected. It includes many national breaches, which affect 500 Californians. It does not always show who caused the breach, for example when a bank tells people that a merchant lost credit credit card data, it shows the bank, not always the merchant.
• Massachusetts lists all breaches which affected any Massachusetts residents since Nov 2007. It shows whether the breach included social security number, driver's license, account number,  and if data were encrypted (almost never). Like other lists it does not show whether the breach happened at the place which reported it, or for example at a merchant losing credit card data. It is incomplete, because there is no enforcement.
• Washington State lists breaches which affect 500 or more Washington residents.
• Oregon lists breaches which affect 250 or more Oregon residents.

Click for a helpful Checklist for emergencies: It suggests preparing for unexpected sickness by having information ready at hand for your caregivers and advocates to use. For fires, floods and storms it focuses on having copies and backups of your important papers offsite, long before the emergency. It suggests actions to prepare for pandemics, and has notes on quakes, evacuations, chemical and nuclear contamination.