Objective Numbers, Collected by the Federal Government, on Doctors and Other Health Workers
This page helps you find doctors and nurse practitioners who spend more time with each patient. More time has 3 benefits: They listen and examine you in more detail. They've listened and examined other patients in more detail, so they've learned about diseases in more depth and breadth than at medical school. They can minimize their own burnout, which affects half of doctors in internal medicine, family medicine, and ob/gyn.
Later, when you know specific treatments you need, you can use a different page to see which specialists have the most experience with each procedure.
Maps give a quick look:
You can call any doctor's office to see which hospital and nursing home they visit. You can also check patient reviews, malpractice, etc. as discussed in STEP C of the specialists page. Maps 1 and 3 include Family and General Practice, Geriatric and Internal Medicine, Nurse Practitioners and Physician Assistants, but they omit Ob-gyn, since Ob-gyn data don't show place of treatment.
Lists of doctors, nurse practitioners and physician assistants:
Spreadsheets list all the doctors. Choose the USA (SLOW ! 142 megabytes; save it so you don't have to download it again), or Maryland, DC and nearby Virginia (4 megabytes). They show you:
To find doctors near you, in a specialty, and/or male/female, you can filter the spreadsheets (click an arrow in 3rd row). For example column G shows the state:
Length of office appointments is based on the typical face-to-face time. Hospital and nursing home visits include both face-to-face time, and time dealing with that patient's needs on the hospital floor or at the nursing home (as explained on p.18 of a presentation). The median hospital doctor claims to spend 16 minutes with each patient. Some audiovisual telehealth contact is also covered (p.31 of the same presentation). Time talking to the family with the patient not present is not covered. Length of appointments at home and in assisted living seems to be face-to-face time.
Medicare will pay for more tele-medicine in 2019. Medicare's "telehealth" has been restricted to non-metropolitan areas by 42 U.S. Code § 1395m(m)(4)(C)(i), also called 1834(m), but Medicare is defining "communication technology–based services" to pay $14 for short interactions anywhere, while cutting pay for office visits to keep the overall budget the same.
You can select male or female, but some specialties have few women.
Continuity of Care
The spreadsheets also help you find local doctors who give continuity of care by treating their patients in all 3 settings: office, hospital, and nursing home. If you've been hospitalized, you know the difficulty coordinating between your personal doctor and hospital doctors. Life is easier and care may be better if your personal doctor can treat you in the hospital.
A 2017 study shows that hospital patients where the hospital let their personal doctor treat them, had a better survival rate (91.4%) than patients treated by hospitalists (89.2%). The extra 2.2 percentage points mean that for every 45 hospital patients treated by their personal doctor, one more person was alive 30 days after the hospital stay. The map and spreadsheets (USA or DC area) show which doctors and nurse practitioners do treat patients both in and out of hospitals:
A 2017 JAMA article says, "In an ideal world, primary care physicians would follow their patients from the office to the hospital and to the nursing home. This would improve continuity of care and increase the chances that the patients’ preferences, generally better known by the primary care clinician than a new clinician, are respected..."
On the other hand you can also see the much bigger numbers of providers who specialize and just provide hospital care, office care or nursing home care.
How Many Primary Care Visits in Hospitals and Nursing Homes and Who Does Them?
Primary care doctors in hospitals and nursing homes provide basic ongoing care, in addition to specialists and surgeons who provide their specialties. Some hospitals use their own staff "hospitalists" to provide primary care.
Primary care billing in hospitals (among 49 million Medicare visits billed in 2015):
Many physicians have offices close to a hospital, and some devote a day each week to one nursing home, so patients who choose that hospital and nursing home can see their personal doctor if the institution allows.
These percents include Family and General Practice, Geriatric and Internal Medicine.
Other Sources on Doctors
The spreadsheets have a web link for each doctor, to copy into your browser. It takes you to a consumer rating site, which also takes you to the doctor's website if they can find it. There are helpful hints for using large spreadsheets like this.
You can supplement these bare numbers with all the sources on patient reviews, malpractice, etc. discussed in STEP C of the specialists page.
Some patients want to know who is independent of the hospitals and Accountable Care Organizations (ACOs) which have been absorbing most practices, so they can have independent advice. Lists of doctors who are independent of the major health systems are at: aid-us.org/directory, Idaho, Georgia, New York City, Minneapolis-St. Paul, south Charlotte, . Some groups with "independent" in the name are ACOs with incentives to refer to each other. Insurers also pay incentives to doctors to meet financial goals.
Home Visits: Medicare and other insurance plans pay for home visits when there is a reason, such as letting the doctor assess the home situation, coordinating with home caregivers, or difficulty getting to the office. A doctor describes the emotional benefits he gets from even doing a few home visits per week. Doctors are paid more for home visits than office visits, so copays may be higher too. The spreadsheets described above show names and locations of 4,000 US doctors who do more than 2 home visits for Medicare per week (104/year), so you can find one near you. 1,300 of these doctors do more than 10 home visits per week (520/year). An association of doctors advocates for the service, and also has a referral list of about 300 doctors and groups. There are some experimental programs to save money by deterring seriously ill patients from going to hospitals.
Source: The spreadsheets use Medicare data. They are useful for non-Medicare patients too, since they show differences among doctors even if you are young or privately insured. Doctors who work only for managed care plans, like Kaiser or Medicare Advantage (Part C), are not included, so you will need to look elsewhere. Medicare does not release counts of 10 or fewer patients, to protect privacy, so there is little data on doctors who see few Medicare patients. Address cleaning provided by Texas A&M University GeoServices
Earlier spreadsheets showed:
The first column has an overall rank you can adapt. It looks for the highest values on 5 items:
More Information in the Spreadsheets
The spreadsheet shows
Besides averages, the 2013 spreadsheets show the number of visits by length: 10 minutes, 30 minutes, 60 minutes, etc. Medicare does not estimate time for the annual wellness visit, so I estimated the time based on what they pay, compared to what they pay for regular visits of 25, 40 or 60 minutes. These estimates are 48 minutes for an initial wellness visit and 29 minutes for a subsequent one, and appear separately in the spreadsheet, so you can use other estimates if you wish. There are also physical exams in the first 12 months of Medicare enrollment, which are grouped with the initial wellness exams at 48 minutes. ProPublica shows graphs of how many subsequent appointments at each length each doctor gave in 2012, though one cannot search for doctors who give long appointments. They consider long appointments a cost problem, not a patient benefit.
Each column in the spreadsheet summarizes several billing categories. A summary page lists all the detailed categories, how common each is, national average costs, and Medicare's estimate of how long it takes.
Types of Medicare Patients Seen by Each Doctor
In October 2015, Medicare released information on types of Medicare patients seen by each doctor, to show which doctors are most familiar with these types of patients. The information can be added to the doctor files, but would make the files even bigger. A private insurance app suggests that some patients do want to find doctors who treat patients who are similar by age and gender. Comments are welcome below.
Patient age is calculated at the end of the calendar year or at the time of death.
Race is based an algorithm that uses Census surname lists and geography to improve the accuracy of race/ethnicity classification, particularly for those who are Hispanic or Asian/Pacific Islanders.
Number who had Medicaid sometime in the year
Conditions (based on algorithms used at http://ccwdata.org/index.php)
To protect the privacy of Medicare beneficiaries, the number of beneficiaries fewer than 11 have been suppressed and the percent of beneficiaries between 75% and 100% have been top-coded at 75% .
An earlier article discusses research on the high skills of high-volume doctors, and how to find such doctors. However one would not want a high-volume doctor who does unnecessary work.
There are some high-volume doctors to avoid, such as anyone who advertises a lot. Billboard ads for weight loss surgery in southern California were accused of drawing in a high volume of patients to unsanitary and dangerous surgery centers. The ads ended when the FDA complained that warnings on them were too small to read. The New York Times reported on questionable heart operations at two major hospital chains in California and Florida. The Washington Post reported on questionable spinal fusions in Florida. USA Today had many examples of unnecessary work from 2001-6 in a 2013 article.
Several papers reported in early 2015 that the Justice Department joined 2 whistle-blower suits (one started in 2011) charging a Florida cardiologist with unnecessary work. The D25 file (see box) shows he was the highest-volume doctor for some procedures, and near the top for some others.
Medicare's fraud team has charged doctors with "schemes to submit claims to Medicare for treatments that were medically unnecessary and often never provided." From March 2007 to May 2014 the team "charged almost 1,900 defendants who collectively have falsely billed the Medicare program for almost $6 billion." About a fifth, or 400 of them, were doctors. You can check online for such federal cases and state penalties, and keep your wits about you, though you don't need to fear all high-volume doctors.
Consumer Reports lists 10 overused procedures and 12 overused surgeries. 63 medical societies have released their own lists, with an overall search window. Patients need to be careful before accepting one of these procedures.
Can patients protect themselves from unnecessary work before public charges are filed and proven? Often yes, whether a doctor has high or low volume.
The first protection is a 2nd opinion. Most charges in these articles concern procedures on Consumer Reports' or medical societies' lists of overused procedures, where 2nd opinions are crucial. Wise and confident doctors encourage 2nd opinions
Consumer reviews (especially Vitals) often critique doctors, years before any charges are filed. These criticisms give even more reason for second opinions. Of the 2 doctors named by the LA times in 2010-12, one had his license revoked, so is not listed on consumer sites. The other has had complaints about poor work, starting in 2009, though many patients are still happily seeing him in 2014. Two of the three doctors named publicly by the NY Times in August 2012 had complaints as far back as 2009 alleging poor or unnecessary work, along with other good reviews. However the 3rd doctor had 2 good reviews and no bad ones. The doctor named by the Washington Post in October 2013 had many good reviews, and 1 bad one in April 2010 about lack of care in a hospital.
Dr A was charged by Medicare in May 2014. He has many good reviews, but also a complaint from June 2012 about poor communication with the patient's primary care doctor and poor service when the patient did not change his insurance as requested by the specialist.
The high-volume cardiologist reported by several papers in 2015 had numerous complaints on consumer sites about unnecessary tests as far back as 2009. RateMDs rates him lowest among 26 cardiologists in Ocala. The whistle-blower (qui tam) suits which the Justice Department joined had been filed July 2011 and June 2014, but the public had no way to know these allegations were pending. This type of suit is "filed under seal, without notifying the defendant... to protect the confidentiality of the government’s investigation until the investigation is concluded" (p. 5). The judge kept the suits sealed for successive 2-month periods during the next 3½ years, while he treated hundreds more patients and Medicare paid his practice more than any other cardiologist's practice. The government was telling the judge it needed more time. The suits were finally unsealed and could be found on Pacer starting December 22, 2014. So the only notice to the public until then was from complaints about him on consumer sites.
Professional reviews do not list doctors to avoid, but at least they try not to recommend doctors with problems. None of the doctors named in the articles and complaints above was listed as a top doctor by Checkbook or SuperDoctors. In any case those publishers lack coverage in northern Florida where several of the doctors are. One of the doctors, Dr C from the NY Times article, is a Top Doctor at Castle Connolly.
All these examples show the need for careful checking, whether one uses a local or distant doctor. Primary care doctors rarely have the time for such checking, except in the specialties they refer to most. Patients will devote substantial time to treatment and recovery, so checking is worth their time.
RETURN TO ARTICLE ON FINDING HIGH-VOLUME SPECIALISTS
Many people know someone who has had a knee replacement. Many people think about getting one and look for a specialist. The medical term is "Total knee arthroplasty." The UpToDate article on it starts by referring readers to medical management of rheumatoid arthritis, and also cites a range of surgical options. The next paragraphs discuss knee replacement, because it is well-known, not because replacement is the first choice.
The 2012 D25 file (described in the Box) shows that the 20 highest volume Medicare providers are spread all over the country, in 13 states: Alabama, Arkansas, California, Colorado, Florida, Georgia, Illinois, Missouri, New Jersey, Oklahoma, South Carolina, Tennessee, and Texas. The 2013 file shows an overlapping list of doctors with high volume.
The websites of these high-volume doctors are worth exploring. If one of them accepts your insurance and you live nearby or have friends where you can stay during the long recuperation, you can consider going there.
Dr Bassett in Harlingen Texas has the highest volume in 2012 with 434 knee replacements. His website has a variety of information from Biomet (which makes joints). His website also says he teaches at the U of Texas, so many of his surgeries are likely done by residents. Consumer sites have several good reviews and one complaint about delays getting a cortisone shot. Dr Dearborn in Fremont California is second with 411 knee replacements. His web page does not say that he teaches; it does have a 10-page pdf description of alternative ways to do the operation and some of its risks. Two of his 12 written reviews on Vitals and one of 20 on AngiesList describe failed surgeries; the others describe successful outcomes or consultations
Wherever you live you can also look closer to home. For eample in the Washington DC region, Dr Dalury north of Baltimore did 211 knee replacements in 2012, and he teaches. Vitals mentions long waits for appointments, but all the consumer sites have praise and no complaints about outcomes. ProPublica says his patients have an average rate of readmissions to hospital within 30 days after surgery, for causes which could be related to the surgery. Checkbook does not list him.
If he is too far and you can accept doctors who do 2 per week instead of 4-8 per week, you can look in the immediate area around Washington (zip codes beginning with 20). The 2012 East file (also in the Box) shows the largest practices are Dr Cannova in Bethesda MD with 120 knee replacements, or Dr Peyton in Sterling VA with 88; neither teaches. One of many written comments on Dr. Cannova complains about a brief appointment and his approach, so the patient went elsewhere; otherwise much praise and no complaints about work he did. ProPublica found an average rate of readmissions for him, and says he operates at Suburban and Sibley hospitals. 14 of the 31 reviews for Dr Peyton complain about rudeness or long waits in the office to see assistants, little contact with the doctor, even in the hospital. Some of the positive reviews also say contact is generally with assistants; several express happiness with his surgery. ProPublica found a high rate of readmissions for him, and says he operates at Reston. Checkbook does not list Cannova or Peyton.
You can also search ProPublica and/or Checkbook for knee surgeons with low rates of readmission (and other complications at Checkbook). See Section B on another page. Remember that the major result, how well knees work after surgery, is still unknown, so you may want references and higher volume doctors within those lists, to try for the best knees, not just the lowest complications. You can search ProPublica by state. Maryland shows several hospitals, with graphs showing results of individual doctors. The lowest (best) point is in Annapolis, and when you click there, you find Dr. McDonald has lowest readmissions and the hospital billed for 782 knee replacements by him from 2009-2013 (5 years). He could be worth exploring. The Globe1234 files show he billed Medicare for 156 knee replacements in 2012 (deast), and 169 in 2013 (doc13sm). Dr. McDonald did not show up in the previous paragraph, based on zip codes beginning with 20, since his zip code is 21401.
You can search Checkbook by distance from a zip code. Searching within 75 miles of 20001 (downtown DC), it shows 13 knee surgeons with the lowest "bad outcomes", and you can click each one to see if volume is above average. They do not show detailed numbers on quality or volume, but you can get volume from this site or ProPublica. Dr. McDonald shows well there too. Checkbook's strength is its more thorough count of complications than elsewhere.
Some doctors' websites say why they recommend certain brands of knee joint. When patients see a doctor they can ask about the brands and approaches they have found on other doctors' sites.
These examples show the variation in patient comments, use of residents, and volume, which you might find in any field. Each patient or referring doctor can similarly search for Pain Management, Rheumatology and other specialties to find alternatives, though it is hard to be thorough when you are in pain or worried. If none of the first doctors you evaluate seems good enough, it's always possible to go back to the spreadsheets and find more candidates to consider. Second opinions help too. One patient said he went in to see about knee replacements, and the doctor said those could wait, but he needed 2 hip replacements, which he got and both went well. A a 2nd opinion would definitely seem appropriate.
Medicare and ProPublica tell you what payments each doctor received from medical companies. Biomet paid Dr Peyton $46,000 in royalties, so he may be quite expert on Biomet's joint. Patients need to decide if relationships with medical companies will strengthen or weaken their care. DocFinder and Pacer are ways to search for legal actions against any doctor you consider.
Your correspondent does not know or have any relation with any of these named doctors, and has been fortunate not to need a knee replacement, so there is no personal knowledge or bias here.
RETURN TO ARTICLE ON FINDING HIGH-VOLUME SPECIALISTS
Legal action is a slow process. Public servants like police and teachers are sometimes suspended with full pay while an investigation proceeds, to protect both the public and the people charged. However doctors continue to practice while they are investigated.
For example a cardiologist was charged by a whistleblower suit in July 2011, and the entire suit was secret for 3½ years, while the Justice Department investigated until December 2014. At that point the suit became public, but the evidence will only come out in a trial. The trial may happen in 2015 or 2016 unless it is settled before then. Meanwhile the doctor continues to practice and in 2012 Medicare paid him four times as much as any other cardiologist. Investigations and trials are slow, since they hinge on dueling judgments by different experts.
State Courts and Local Records
While investigations proceed, consumer reviews provide one way for potential patients to hear about concerns. Other doctors in the area may be another source, but 60% of male doctors and 67% of female doctors do not necessarily tell patients when another doctor is substandard (they fear retaliation). 9% of doctors do not tell patients about mistakes which harm them.
Some state boards provide information on malpractice suits as well as disciplinary actions in the DocInfo and DocFinder lists, but usually patients have to search the web or state court records. Each state has its own system for searching court records. and there are good search functions in private newsletters in CA, FL, IL, LA, MO, PA, TX and WV which report civil cases. Half of all doctors have been sued for malpractice. Half these doctors who were sued were dismissed from the case before or after trial. 96% of the cases gain money for the plaintiff, often by settlement, without a finding of who was right, since the participants cannot predict which expert a jury will believe.
Private groups collect information, including TruthMD, LexisNexis and PreCheck.
Lawsuits against makers of drugs and devices are summarized at DrugDangers.com, which is maintained by a law firm. Most are in state courts.
Federal Courts and Records
Federal court records (such as Medicare fraud) are easily searchable at Pacer (Public Access to Court Electronic Records, 10 cents/page. $2.40 per audio file of court hearings). Even malpractice cases can appear in federal court when patients and medical suppliers are in different states.
A free archive holds many Pacer records, and Pacer cancels costs under $15 per calendar quarter, so you can do most simple searches without cost.
The doctors indicted by Medicare's fraud team appear in Pacer. The highest-volume surgeon for knee replacements is in Pacer as a co-defendant in one federal case in 2014, which became part of a settlement agreement. Patients can ask for information and decide if it matters to them.
The weight loss surgeons reported by the LA Times are in Pacer because of a 2012 whistleblower suit and a suit by the same surgeons against a health insurer. Of two doctors named in the NY Times article on heart surgery, one is in Pacer since he sued the hospital for suspending him; the other is not. The spine surgeon reported by the Washington Post does not appear in Pacer, since the whistleblower suit was filed against the hospital. The three surgeons named by USA Today all appear in Pacer. The cardiologist named by the Justice Department in 2015 appeared in Pacer starting December 22, 2014.
Thus Pacer provides a lot of information, though not a complete list of problems. Searches cost 10 to 50 cents, depending on length. Once you find a case, the "Case Summary" tells you the parties and their lawyers; the "History/Documents" lists documents. I usually click that and then select "Only events with documents" and "Display docket text." From the resulting list you can click the number in front of any document to see its cost and decide whether to view and print it. There's no extra cost for going back to look at a document you already paid for in the same session, though repeating a search costs money, since they do a new search each time.
There is a far more complete list of problem doctors which Congress does not want you to see. The National Practitioner Data Bank lists "800,000 license and hospital disciplinary reports and past malpractice payment reports for clinicians" 1990-2014. Congress forbids showing the list to patients or referring doctors. The federal government shows the list to those it thinks "need to know the most - the hospitals that are considering hiring [doctors] or the licensing board." Malpractice attorneys point out its gaps, but still would find access useful in building cases. There is a public version without names and addresses if you agree to their Data Use Agreement, and a 2011 version without that agreement, but still lacking names and addresses. The size of the list ranges from 900 adverse actions in Hawaii to 50,000 in Texas over the last decade. Several reporters have used the list for stories. Public Citizen used it to summarize doctor's sexual misconduct, and found that Canada has much better reporting and that many state medical boards let doctors continue to practice after hospitals discipline them. It is important to note the Veterans Health Administration does NOT report many disciplinary actions to this National Practitioner Data Bank, so there is no central record of doctors they have disciplined or fired.
Most state medical boards do not search the National Practitioner Data Bank when they license doctors.
RETURN TO ARTICLE ON FINDING HIGH-VOLUME SPECIALISTS
Do End-of-Life Guidelines in Los Angeles Differ from Catholic Teaching?
The article on Advance Directives has a section on "Talking with Doctors," which mentions guidelines for compassionate care in Los Angeles and southern California, including Providence, a Catholic hospital chain. The article also mentions Catholic teaching on artificial feeding.
Fr. Luke Dysinger has been kind enough to explain how these guidelines that doctors "are not obliged to offer" feeding tubes relate to Catholic teaching that providing food is obligatory "even by artificial means." Fr. Dysinger is a professor at a Catholic seminary, and was on the program for a press conference announcing the guidelines. Nine major health systems adopted the guidelines in May 2014, including a Catholic group which runs 6 hospitals, Providence Health & Services.
The joint guidelines say that doctors "are not obliged to offer" tube feeding:
The Vatican said in 2007 (approved in 2007 by Pope Benedict XVI, building on earlier teaching by Popes John Paul II and Pius XII):
Official Commentary: www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_nota-commento_en.html
Fr. Dysinger wrote:
Thank you for your question concerning Catholic teaching on the necessity of nutrition and hydration at the end of life. The short answer to your question lies in the very important words "in principle" within the statement you quoted. The original Italian for this phrase is "in linea di principia" (Pope John Paul II, "Life Sustaining Treatment..." Mar. 20, 2004; reference and citation below) which, as I understand it, can also be translated as "normally", or "generally speaking". Thus the statement does not – and in fact could not – make an absolute statement that artificial nutrition and hydration must always be used in any clinical setting. There is not, nor could there ever be, such a thing as a "Vatican-approved" list of modalities that are always obligatory or always optional for all Catholics. Everything depends on the unique circumstances of the case and the informed desires and moral intentions of the patient. A key summary of Catholic moral teaching on this point may be found in the Catechism of the Catholic Church:
§2278. Discontinuing medical procedures that are burdensome, dangerous, extraordinary (onerosis, periculosis, extraordinariis), or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.
For many centuries the Catholic Church has emphasized that the definition of "burden" in any particular setting can only be made by the patients themselves (i.e. not by the physician or the clinical ethicist), and that as long as the patient does not intend to cause or hasten death by refusing treatment (whether understood as "medical acts" or "natural means") , such refusal may be permissible if the patient finds the means or acts morally repugnant (St. Alphonsus M. de Liguori Theologia Moralis Tractate 4. On the Fourth and Sixth Precepts [of the Decalog]. Ch. 1, "What is forbidden by the Precept: You shall not kill", § 366-372. original text with translation: http://ldysinger.stjohnsem.edu/ThM_590_Intro-Bioeth/03_hist-devt/05_enlightenment.htm#4._ALPHONSUS_LIGOURI_ )
So the short answer to the polemical question "Are dying Catholics obliged to have feeding tubes," is "no, they are not, unless they want them." I have never met a trained provider of palliative care who recommended or encouraged parenteral feeding for the dying; and it should be added that the Catholic Church is extremely supportive of palliative care, as is stated quite strongly in the Catechism:
§2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable Palliative care is a special form of disinterested charity. As such it should be encouraged.
But your question merits a longer answer (as if the foregoing were not long enough!) The statement you have quoted concerning the necessity for nutrition and hydration first occurred in an address of Pope John Paul II entitled "Life-Sustaining Treatment and the Vegetative State: Scientific Progress and Ethical Dilemmas" (March 20, 2004: http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_it.html). It was clearly the pope's intention to address the then-popular conviction among secular ethicists that it is morally permissible (or even obligatory) to discontinue nutrition and hydration of patients in the persistent vegetative state. The pope's response in this document is fairly detailed, and most specifically emphasizes that PVS patients are not dying, but are, rather, profoundly disabled; and the pope urges that they be treated as we would treat any other disabled persons who are unable to feed or otherwise care for themselves.
The pope also pointed out that PVS is a syndrome rather than a disease, that it is often misdiagnosed, and that we do not, in fact, know with certainty what level of consciousness may be present, even in patients who are correctly diagnosed as being in a persistent vegetative state. This last point is crucial, since a fundamental difference (from the standpoint of care) between dying patients and those who are not dying, is that the dying often refuse food and water, yet do not suffer from a subjective sense of thirst or hunger. This would not be the case in an apparently-"vegetative-state" person who nevertheless retained some level of awareness and sensation. There can be little doubt that such a person would, in fact, suffer very great pain from dehydration and starvation if artificial feeding were simply stopped. Recent research published in reputable medical journals (Neurology, the New England Journal of Medicine) has revealed the pope to have been alarmingly correct: a significant percentage of correctly-diagnosed PVS patients are apparently able to understand and properly respond to verbal commands. Needless to say, ethicists who formerly argued that PVS patients should not be provided with nutrition and hydration ought to more carefully nuance their arguments on the basis of these findings:
["Willful Modulation of Brain Activity in Disorders of Consciousness" Monti et.al., NEJM Feb. 3, 2009, 579-589:
So it was in the context of a discussion of the persistent vegetative state, not the terminally-ill or imminently-dying patient, that Pope John Paul stated in the document cited above:
(§4) The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery. I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.
The pope's words have been misconstrued by Catholics and non-Catholics alike as constituting an obligation to use parenteral nutrition. And it was, perhaps, for this reason, that six months later (and shortly before his own death) Pope John Paul II issued another document in which he described and praised palliative care. I hope you do not mind if I quote the relevant section in full: perhaps you will find it useful in your own work:
4. True compassion, on the contrary, encourages every reasonable effort for the patient's recovery. At the same time, it helps draw the line when it is clear that no further treatment will serve this purpose.
This second document is not as well-known or frequently cited as the one concerning PVS, but I believe it is essential to read both together.
Fr. Dysinger makes a strong point above that Catholicism teaches tube feeding is a moral choice for patients to make:,
TRAINING FOR RESUSCITATION
A Regina Saskatchewan orientation video shows a team coming to revive a "patient" in a hospital. They use an actor and a dummy, showing a wide array of techniques available. The doctor handles timing of an AED, which is handled automatically by the AED outside a hospital. 14 minutes.
U of California San Diego (UCSD) orientation video on how a trauma center helps patients. They do not show resuscitation, since it seems patients would be resuscitated by ambulance crew, though it may be needed again in the trauma center. They show how they evaluate the various wounds. 16 minutes.
REAL EXAMPLES OF RESUSCITATION
The Heart Association has training videos. The PulsePoint app lets 911 call citizens near a cardiac arrest who've been trained in CPR.
52-year-old Tony Gilliard from South Carolina narrates a video of his heart stoppage while playing basketball in 2013. CPR and AED brought him back. 2 minutes. youtu.be/v=YrBq_sFV3LA
62-year-old John Ellsworth's heart stopped in a British street. He needed 3 AED shocks to revive, then was taken to a hospital where they treated him, and eventually placed a defibrillator in his chest. 10 minute video narrated by the BBC series Real Rescues. youtu.be/nxpYuVr53zQ
71-year-old Nebraska lobbyist Tom Vickers collapsed in 2008 from a heart attack at the state Capitol. CPR and AED administered by a doctor on duty revived him. He was taken to a hospital, where they found 99% blockage in an artery. Video from security camera. no sound. 3 minutes.
News article: journalstar.com/news/local/quick-action-by-many-helps-lobbyist-survive-heart-attack/article_c64eb533-d5bb-5eae-99ee-54a7b12a414e.html
51-year-old Chris Solomons in Britain had a heart attack and felt his hands shake and his limbs tingle. He worked at a site which dispatched helicopter medics, and he was still not feeling well when he got there. The medics there took an EKG, which did not look right so they were getting ready to get him to a hospital, but he collapsed. They used CPR and 2 AED shocks to revive him, and flew him to a hospital where doctors found a blocked artery and opened it with a stent. 13 minutes. He says,
A man collapsed in a car, and police arrived to pull him from the car. They and a passing nurse gave CPR and AED. The wife panicked, swore, prayed, and yelled at her husband not to leave her. An ambulance arrived and took over. The man lived and left the hospital in a few days. The nurse and police were given awards for their fast action. It seems to be filmed from a camera mounted on the first police car. 4 minutes.
An Augusta Georgia video shows two patients in the emergency room at the same time. Many of the comments heard on the video use abbreviated medical language. 11 minutes.
45-year-old runner who collapsed at a race got CPR immediately from other runners, and AED after 12 minutes. He was taken to the hospital and revived with cooling treatment. Revival required a breathing tube, which was removed 2 days later.
65-year-old woman collapsed at home with husband, went several minutes without CPR. An ambulance crew got some response from her heart, using sodium bicarbonate and another medicine, but she died in the emergency room. youtube.com/watch?v=NWKyXYnvlpM
Ken is a Utah firefighter who has saved lives himself. He had a cardiac arrest in 2006 after practicing soccer with his wife and 5 children. His wife gave him CPR for 14 minutes, after telling the only bystander to call 911. Ken revived, and they are interviewed in this video. https://www.youtube.com/watch?v=Rb4sU-Zt7CA
CPR saved the life of reporter Steve Lopez, and he wrote how it saved an ex-judge who collapsed while driving alone.
August 2018 guidelines say about patients in vegetative states or unresponsive wakefulness syndrome, even after 3 or 12 months:
"a substantial minority ... will recover consciousness... While most of these patients will be left with severe disability... some will regain the ability to communicate reliably, perform self-care activities, and interact socially" (p.6)
They say doctors should stop talking about permanent states and tell people the "prognosis is not universally poor," though after 3 months for non-traumatic injuries (loss of oxygen to the brain) and 12 months for accident injuries (trauma), they should emphasize "the likelihood of permanent severe disability and the need for long-term assistive care" (p.4).
The guidelines also recommend transfer to a specialized center.
In 2018 a man was about to have his life support removed after 3 weeks in a diabetic coma, when his doctor father arranged to have him air-lifted to a specialized hospital, where he woke up in 4 days.
Videos include the following, and you can find many more. Several of these people were aware of what was happening when they were in comas. Most were not treated in specialized centers. A wise commenter said, "I hope they read to the patient." Talking books and music can fill a thirsty mind. Knowing the patient may be conscious makes everyone more helpful, considerate and respectful.
This page gives a very brief summary of the 2018 guidelines. Families with someone in a coma need to read the guidelines, the studies they cite, and any newer studies, to find what is relevant to their situation. Most doctors and hospitals are not experts in this area, which is why the guidelines recommend transfer to a specialized setting, and why the doctor above did so for his son.
A 2017 book for lay people is Into the Gray Zone ($2). A 2014 textbook for doctors, which some family members may want, is The Comatose Patient, $100 or available in a list of university libraries.
Researchers in Cambridge and Liege found that 5 of 54 patients in persistent vegetative states could respond to yes/no questions through MRI. "5 were able to willfully modulate their brain activity. In three of these patients, additional bedside testing revealed some sign of awareness, but in the other two patients, no voluntary behavior could be detected by means of clinical assessment. One patient was able to use our technique to answer yes or no to questions during functional MRI; however, it remained impossible to establish any form of communication at the bedside." They used functional MRI to measure responses. NEJM 2010, Monti et al.
Researchers in Paris found that 2 of 22 patients in persistent vegetative states could recognize patterns of sounds in ways that only conscious people can. "Interestingly, these 2 patients showed unequivocal clinical signs of consciousness within the 3 to 4 days following the experiments." The experiments measured responses with "high density scalp EEG," and they show a picture of the network of EEG sensors on a patient's head. Neurology, 2011, Faugeras et al.
In 2010 there were 300,000 US patients in a non-responsive state.
People with a severe disability are usually happy in their life, and say they have a good quality of life, so they want to continue. Their unhappiness, if any, comes from pain, fatigue, lack of control or purpose, and isolation. These can usually, not always, be helped by pain specialists, good care, assistive technologies which even respond to eye movement or breaths, and social connections. People who cannot move and are locked in their bodies without motion, can still spell or speak through assistive devices, use social media, listen to books, magazines, podcasts, radio, and maybe select music from a service like Pandora or Slacker, which adjusts itself to their choices.
The "disability paradox" is that people without a disability cannot imagine how life with a disability can be fun. Family members rate quality of life much lower than a disabled person herself does. Geriatricians say, "it is vanishingly rare that a patient reports to us a preference to be dead," no matter how badly disabled the patient is.