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Medical Representative, Life-Supporting Treatment, and Advance Directives

2/2/2022

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 Direct url:   aaa.globe1234.com
This page tells you what to expect if you're in an accident and temporarily need a feeding tube or other life-supporting care (for example you'll learn you can ask for a very thin tube and Chloraseptic, and that CPR (cardio-pulmonary resuscitation), often causes vomiting, but rarely breaks ribs, though EMTs often hear breaking cartilage). 

It also discusses how to have a strong representative to get the care you want, when you're unconscious. Another page discusses web and phone access to your directive, so medics and doctors can get it anywhere.

It warns that choosing not to have resuscitation (Do Not Resuscitate, DNR) reduces treatment overall, and leads to earlier deaths, even among patients with less serious illness. Giving advance directives to medical staff can also reduce treatment.
Picture
In this video a man with a monkey helper describes how a doctor asked if he wanted to live after he broke his neck, since the doctor thought he'd always be on a ventilator, mostly in bed and might never eat or drink.

He recovered from the ventilator, and physical therapy provides some motion. He was in a wheelchair with a monkey helper when the video company interviewed him. The "disability paradox" is that people with disabilities are usually as happy as they were before the disability. They still think, love, interact, and accomplish things. So it is crucial to name a representative to speak for you, and questionable what if any limits to put on future care, since people who reach that stage usually want full care.
trilliumstudios.com/scott-melanie

                                                                           Contents

Life-Supporting Treatment at Any Time
Naming a Representative
Advance Directives or Living Will
Organ Donation and Definitions of Death
Doctors' Viewpoints
Legal Viewpoints

Patients' Viewpoints, DNR, Hospice, Comfort, POLST

Resuscitation and Myths
Training for Resuscitation

Will People Follow Your Directives?
Ethics Committees
Talking with Doctors
Some States' Standard Wording
Catholic Teaching on Tube Feeding
Training Nurses on Tube Feeding



Disability Paradox
Feeding Tubes
Breathing Tubes
Dialysis

Lack of Speech
Coma
Mental Exercise
Anecdotes


LIFE-SUPPORTING TREATMENT AT ANY TIME

A serious accident or burn can happen any time, causing a temporary need for a feeding tube if the mouth is wired shut, oxygen, breathing tubes in an operation, or even resuscitation.

This page tells people what to expect, and encourages you to name a health care representative now. The representative will speak for you when:
  1. you lose consciousness, for example in an accident, hypothermia, fall
  2. you're heavily sedated because of pain from a severe burn, broken bone, or surgery
  3. you have mental confusion or severe mental illness

NAMING A REPRESENTATIVE

The first step is to name a strong representative with excellent memory and hearing, whom you trust to say what you want, when you cannot speak. S/he needs to be with you when you're very sick. Even a mumbled "ok" can override this document unless your representative is there to clarify your wishes. Medical representative forms are free online.  Medicare has its own form to let them discuss and disclose your Medicare information to your emergency contact: https://www.cms.gov/Medicare/CMS-Forms/CMS-Forms/CMS-Forms-Items/CMS1193148.html

After you sign a form naming your representative, make it accessible to medics in an emergency, take a copy to every hospital stay, and be sure the representative is available, preferably with you, or doctors will defer to whoever is with you. In ICU and elsewhere, doctors often explain more to your representative than to you.

The representative needs good hearing, free time to be with you when needed, persuasiveness to get what you need and get second opinions, ability to understand doctors and nurses, asking for more information. A former hospice director says, "a lot of families have problems..." he said. "They need a lot of support. They come unglued. Elderly spouses have a really hard time." The jobs of a representative are to: 
  • Ask about all options available.
  • Get different opinions on the likely results, not just select among choices laid out by a doctor.
  • Check your test results and other medical records, so nothing is missed
  • Remember the "disability paradox", that people with disabilities are happier than they or their representative would ever predict.
  • Remember geriatricians' guidance, "it is vanishingly rare that a patient reports to us a preference to be dead," no matter how badly disabled the patient is."
Many states don't allow the representative to be anyone who provides you health care. Some states have other rules. As of 2011 the bar association said 2 witnesses were enough in all states, and a notary in MO, NC, SC, WV. They also list rules for who can witness (p.12).

You and your representatives need copies of the document naming them at home, in car glove compartments, and accessible online.

ADVANCE DIRECTIVES OR LIVING WILL

When people name a representative, some people want to give them flexibility to use their own judgment. Others write them a letter, or give more formal instructions. Most states have formats for formal instructions.

Other sections of this page explain treatments you could need. Medical ethics give more rights to "informed" patients, "values and goals," so you can include facts and values in your letter or instructions. These may matter more than instructions, since it is distinctly odd for a healthy person to limit in advance what she will get when she becomes disabled, knowing that most people who become disabled do want full care.

You and your representatives need copies of any letter or instructions at home, in car glove compartments, and accessible online. You may not want to give it to your doctor or hospital, since many staff assume (without reading) that advance directives in your medical record, mean no curative care (examples below). If you want care, directives are safer with your emergency contact than in hospital records.

 Major Choices

COMA, nonresponsive states: If  in a long-term coma or responding minimally or not at all, choices include:
[  ] Go to a specialized center for non-responding patients. Most patients start responding, half reach daytime independence at home, and 20% go back to work or school. globe1234.info/more/coma or
[  ] Stay anywhere convenient.

COMA: If staying nonresponsive, or responding but the mind declines too much to ever enjoy anything, then choices include:
[   ]  After the representative gets second opinions and is convinced the patient can never have a life s/he would want: LET GO: DNR-Do Not Resuscitate. No Cures. YES to comfort, hospice, palliative care. If this is what you want, a doctor needs to sign an order, discussed on the DNR page.

[  ] ORGAN DONATION: Keep organs healthy for donations if needed, such as tubes for oxygen, heart-lung machine, etc.

[  ] ALL TREATMENTS (Doctors call this "Full Code"): Diagnoses are uncertain; patients adjust, and recover many abilities, even after months or years. Provide all treatments which the representative thinks are worth trying, to improve or maintain health, muscles, mental functions, or reduce decline or pain.

[  ]  LIMIT PAIN: Accept pain which is low, or short-term, or controllable by drug or non-drug treatment: NO to severe long-term uncontrollable pain. YES to defibrillator paddles (AED), setting broken bones, breathing help and any other help which involves no or limited pain. Consultation from a "Pain Management" specialist can help. Their training and exams have more detail on both drug and non-drug control of pain than palliative/hospice doctors, hospitalists, or others. Other treatments can continue while controlling pain. 

[ ] LIMITED TUBES might be accepted. The following are examples and not a full list: breathing tube during an operation, feeding tube while healing a mouth or stomach problem, oxygen to help me breathe, intravenous therapy. If the patient stays unconscious and needs tubes for a long time, the coma instructions could come into effect.​ 
MORE CHOICES:
[_]  CONSULTATIONS: Get additional opinions from independent experts.
[_]  Play TALKING BOOKS, MUSIC, etc., in case the mind is aware.
[_]  Get ASSISTIVE DEVICES to write, talk, use social media, control light and heat, etc.
​
Remember, most states have formats for formal instructions.

LEGAL DISCLAIMER: This page does not give legal advice. The page shows options, which people can use at their own risk. The author is not a lawyer, and takes no responsibility for good or bad results, or anything which follows from applying this information. Consult a lawyer specializing in medicine or elder care to interpret and apply this to your situation.

GIVING ADVANCE DIRECTIVE TO DOCTORS?

Most advance directives or living wills want to reduce curative care, so when hurried medical providers hear you have one, many assume (without reading it, that you do not want curative care. If you write an advance directive to say that you do want curative care, it may be safer in the hands of your emergency contact, to pull out when needed, rather than confusing people in your file:

2016 "living wills seem to be equated to a DNR order by care providers.[17–19] Often, EMS prehospital providers view living wills as the equivalent of DNR orders and understand DNR orders as equivalent to comfort care/end-of-life-care":
http://www.iremsc.org/symposium/Symp%20Documents/2016%20Symp/Presentation%20PDFs/POLST%20Study%20TRIAD%20VII.pdf
2017 Researchers treated any completion of an Advance Directive as a request to die at home or on hospice: Pedraza et al. Association of Physician Orders for Life-Sustaining Treatment Form Use With End-of-Life Care Quality Metrics in Patients With Cancer J. of Oncology Practice. http://ascopubs.org/doi/pdf/10.1200/JOP.2017.022566 
2018 " 'Don’t resuscitate this patient; he has a living will,' the nurse told the doctor... 'Do everything possible,' it read, with a check approving cardiopulmonary resuscitation. The nurse’s mistake was based on a misguided belief that living wills automatically include "do not resuscitate" (DNR) orders." https://elderlawnews.blog/2018/08/14/you-may-have-signed-a-living-will-but-scary-mistakes-can-happen-at-the-er/

ORGAN DONATION + DEFINITIONS OF DEATH

If you want to donate organs, the US approach is that you will need to die on a ventilator in a hospital, to keep the organs usable. Over 1,000 organs per year are transplanted from patients where CPR was attempted, and did not save the patient but did save the organs. Netherlands and Belgium have also transplanted organs (at the patients' request) after euthanasia stopped the heart; this requires the death to be in a hospital, and includes waiting 5 minutes with the heart stopped before declaring death and moving the body to the operating room to remove the organs.

​There are many complexities and shifting rules in the definition of death and its relation to organ donation
. There are also examples of the difficulties of diagnosing death:
  • Neurology, 2019
  • JAMA, 2018
  • BBC, 2016
  • Forensic+Legal Medicine, 2013
  • Neurology, 2011
  • NEJM, 2010

 DOCTORS' VIEWPOINTS

Ethically and legally, doctors must consider your wishes, but there is little enforcement when they do not. The main way to get what you want is to appoint a strong-willed representative (click for state rules) who will argue forcefully for you and appeal to hospital ethics committees or higher when doctors do too much or too little (see "Talking with Doctors," below).

"Directive" is a fib: doctors don't have to obey if they think it's "medically inappropriate." The American Bar Association says, "Advance directive laws merely give doctors and others immunity if they follow your valid advance directive."  If you don't want resuscitation, an advance directive isn't enough, you also need a doctor's order.

Whether you're in an accident tomorrow or years from now, the hospital doctor, a stranger, will respect written wishes more than oral, if they briefly and clearly explain your goals, and if your
representative speaks up. Doctors pass on your information every 12 hours from a tired doctor to a fresh one, and have only a few minutes to absorb information from your record and the previous doctor, so any instructions need to be simple and moving, especially if you want full care. These days, patients who want limited care are more likely to get what they want than patients who want full care, as discussed below in "Will People Follow Your Instructions?"

LA Times columnist Sandy Banks quoted her doctor after 40 years of practice, "From the patients clinging to hope through devastating terminal illnesses, he realized that for all our talk of dying with dignity, no one is really ever ready to go... 'Most of my older patients, no matter the obstacles, were still optimistic, still enjoying life,' he said."

LEGAL VIEWPOINTS

Many people get Advance Directives written by their estate lawyers, along with their will. But if you ask the estate lawyer whether s/he has represented people in disputes with hospitals, or will write a letter to help you get what you want, most don't.

The main lawyers who work on medical issues are medical malpractice or elder care lawyers, and you or your
representative should ask one to help. Not because you expect abuse or malpractice: these are just lawyers who know how health systems work. Consider asking your lawyer 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.

Medical lawyers often sub-specialize in particular fields of medicine (advice). None of the search engines is complete:
  • JusticeToolbox lets you search by city and name or broad category, like Medical Malpractice. It tells you how often the lawyer wins, settles, represents corporate clients, how many cases the lawyer has had in each field, and it lists the cases, dates and outcomes, so you can look further. You could find some specialized lawyers with Martindale and check their details with Justice Toolbox.
  • Martindale lets you search nationally on subspecialties, like "cardiology," "heart," or "brain." If they are far away, you can call the lawyer's office and ask if they can advise by phone or skype, or if they know a specialist closer to you.
  • Findlaw only lets you search on a city and the broad fields of Medical Malpractice, Drugs+devices, Nursing Home Abuse, or Healthcare (i.e. privacy, patient rights, Medicare, and Medicaid, so for details of care, Malpractice may be the better field).
  • SuperLawyers similarly lets you search on city and Medical Malpractice, Medical Devices, Nursing Home, or Health Care (i.e. lawyers who represent health care providers)
  • Nolo lets you search by state, city or zip code and Medical Malpractice or Nursing Home.
  • Or you can call local lawyers to ask if they know someone specialized in your field. Some lawyers are "certified" in medical law; these may sub-specialize in any type of medicine, and must have experience in court or arbitration.

It is harder to find elder care lawyers who specialize in medical issues. Those who are "certified" in elder law are usually not the most specialized, since certification requires them to do substantial work in at least 5 fields, each of which really needs its own specialists: health planning, wills, fiduciaries, guardians, and government payments (5.1.4.2.B).

When you hire a lawyer, you will probably get an "engagement" agreement, describing subjects covered, time frame, names, fee, stopping point,

PATIENTS' VIEWPOINTS, DNR, HOSPICE, COMFORT, POLST

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.  

DISABILITY PARADOX 

It may surprise some that 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. This pattern is found by many studies, with many approaches, even with extreme disability such as being "locked in" with little or no way to communicate.
  • ​Bruno, 2011, patients with locked in syndrome
  • Ubel, 2005, compare many studies
  • Albrecht, 1999, early discussion of disability paradox
The unhappiness of some people with disabilities usually comes from pain, fatigue, lack of control or purpose, and isolation. These can usually, not always, be helped by pain specialists, good care, social connections, and assistive technologies which even respond to eye movement or breaths, letting people spell or speak, use social media, TV, videos, listen to books, magazines, podcasts, radio, and maybe select music from a service like Pandora or Slacker, which adjusts itself to their choices.

"[S]uddenly paralyzed... patients, having absorbed negative attitudes about disability and likely unaware of medical, technological and financial resources, don’t realize they may be able to live satisfying lives... They and the medical providers who advise them often have had no exposure to paralyzed people who work as engineers, computer programmers or who operate motorized wheelchairs... 'Two, three months after an injury, you cannot be making an informed decision.' " 

Disability groups say, "I don't need to be fixed from what I am. I just want to be included."​ People with brain injuries sometimes like their lives better afterwards than before.
​
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. 

So advance directives and medical representatives need to assume patients will usually adapt to future disabilities.

This page gives a bit of information on some people with disabilities, so you can see how it is possible to live with them and still be happy.

PROGNOSIS

A thoughtful article asks doctors to tell patients how long they have to live by saying, "I am hoping that you have a long time to live with your … disease and I am also worried that the time may be short, as short as a few..." years/months/weeks, so patients know the doctor's expectations, and that the doctor shares their hopes and fears. Another paper notes that some patients want to know the usual trajectory of their disease, some want to know their life expectancy, and some believe that discussing death or decline makes these happen sooner.

FEEDING TUBES

Tube feeding can actually be comfortable, helpful and dignified. Chloraseptic and small tubes are helpful, smaller than hospitals usually use. It can be temporary or permanent.

The son of singer Neil Young (of Crosby, Stills, Nash and Young) lives on a feeding tube, with homemade organic food. He's happy.
Picture
In this video a young woman shows how she put a thin tube through her nose to her stomach every evening for years and took it out again in the morning, getting extra nutrition all night. She had intestinal problems, and needed more nutrition than she could swallow. She says it "helps you feel better." She could have left the tube in all day, but it was so easy to put in and out that she just left it in at night, with a bag of food formula slowly draining into her stomach while she slept.
youtube.com/watch?v=EbNOZt5VQdY

The main danger mentioned for nose tubes is putting them down into the lungs, rather than the stomach, which may cause coughing and produce acidic content, as the stomach does.

Nose tubes at home are very thin and flexible, a tenth of an inch in diameter (the size measurement is "8 French" and a French is a third of a millimeter). See below for suppliers. Thin tubes are right for feeding. Hospitals are used to much thicker, stiffer tubes, since they use them for sucking liquid from a stomach as well as feeding, and tubes must not collapse under suction. Hospitals' naso-gastric (NG) tubes are usually a quarter to a fifth of an inch diameter (14-18 French). You can ask your hospital to get the smaller tubes or you may need to get them yourself. 


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Hospitals insert thick tubes, often quickly, without anesthesia. The woman in the video above has this follow-up where she says she used Chloraseptic spray (an over-the-counter sore throat treatment, generic name is phenol) to numb her throat while she put a thin tube down, especially at first. If the hospital does not use it, you can ask a friend to get it at a drugstore.
youtube.com/watch?v=56h3x6QTvlQ 


She also said that even in an emergency visit at the hospital, when they decided she needed extra nutrition, she insisted on putting the tube in herself, since hospital staff were too hurried and rough. She does say it feels very "odd" and can cause gagging the first few times, but not after a week.

Often patients are asked to swallow water while the tube goes down, to help it go down like a pill. If the patient is not allowed to swallow water, one video says to suck a dry straw. youtube.com/watch?v=S-GNi6YWID8


Tubes often have a stylet (guide wire, or plastic) to stiffen them during insertion. The stylet is pulled out before putting food in the tube. Nurses are sometimes advised to use stiff tubes and refrigerate them to make them even stiffer; but they realize that a stylet can stiffen a flexible tube for insertion, while allowing the tube to be flexible in use.

Getting Thin Nose Tubes

You can find support groups, and get books and tubes at Amazon and from other dealers. Following are specialist sellers. Your hospital probably has an account with one:
  • Covidien (part of Medtronic) sells tubes 8 to 14 French (a tenth to a fifth of an inch). Their distributor, Woodbury, sells retail to patients, by the case. At this writing, the only NG tube on Woodbury's website is item C155723C. You can find it as product 155723 in the upper right search box at Covidien, where they say it is for pediatrics. Woodbury can also order any naso-gastric tube made by Covidien 800-777-1111 (M-F 9-5 Eastern).
  • Homelink (part of VGM) in Waterloo IA works with a national network of  home medical providers who may sell you what you need. They have a web inquiry form, or call 800-482-1993 or 866-302-6333. (8-8 eastern, but try them 24/7)
  • Corpak offers nose tubes from 5 to 12 French (a fifteenth to a sixth of an inch), with up to 7 grams of weight at the end to help them go down. They only sell to health care facilities, but you can get some models at Amazon and other sellers.
  • Bard medical sells tubes 10 to 18 French (an eighth to a quarter inch). 800-526-4455 (M-F 8:30-6 Eastern). They told me some distributors, none of whom carried their nose tubes, but you may have better luck.
  • Vygon (Advanced Medical Systems) sells tubes 10-18 French (an eighth to a quarter inch). 603-743-5988
  • Andersen sells tubes 10 or 16 French (an eighth or fifth of an inch) 800-523-1276.
Single nose tubes may be called levin, levine, dubhoff, dobhoff, dobbhoff, NG, ND, NJ, Corpak, etc. catheters or tubes. Those with pairs of tubes can be called Salem, Miller-Abbott or Cantor; Vygon is one maker of these.

Picture
Here is another young woman who had a tube surgically implanted through her skin and stomach, into her intestine (jejunum), a J-tube. She has had the tube 4 years, can eat some soft foods and liquids. She tried several suppliers of formula until she found one that her body accepted well. She gets some medicines in liquid form, dissolves some of her other pills, and grinds others. People must ALWAYS ASK the pharmacist before breaking, grinding or dissolving pills, since this usually gives a faster release, which can mean a sudden and fatal overdose.
youtube.com/watch?v=rKNCiSbUanw 


Picture
This is an earlier video by the same woman. Life was harder at that early stage, since she was grinding all her pills and had a nutritional formula which did not agree with her, so it had to go in slowly, and she was on it 24/7. It shows the difference good advice and adjustments can make. She says that when her tube was first put in, the doctors wanted to use local anesthesia. She insisted on general anesthesia and the doctors told her later she was right.
youtube.com/watch?v=92Co-O6Wnr0 


Feeding Tube Variations
If you have trouble eating, such as a broken jaw, muscle spasms, weakness, etc., you can get partial nutrition with an IV tube, or complete nutrition with nose or stomach tubes:
  • A nurse can place an intravenous (IV) tube to carry glucose, salts and medicine into a vein.
  • You can place a tube through your nose and swallow the end down your throat into your stomach (NG-naso-gastric), or a hospital can lead it all the way into your intestine (ND-naso-duodenal, or NJ-naso-jejunal). It can be flexible and thin: a tenth of an inch. You can also remove it any time.
  • An interventional radiologist or gastroenterologist can sew a larger tube through the skin into your stomach or intestine. It can appear as a small button on the skin or have several inches of tube sticking out. Radiologists operate directly on the stomach, as a PRG tube (Percutaneous Radiologic Gastrostomy). Gastroenterologists operate less conveniently down an endoscope in the esophagus, as a PEG tube (Percutaneous endoscopic gastrostomy). 
  • G-tubes go to the stomach (gastric). D and J-tubes go to the intestine (duodenum and jejunum).

There are more videos at the bottom of the page to train people for inserting nose tubes.

BREATHING TUBES

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In this video, a woman with a spinal injury describes living on a ventilator.
youtu.be/YcVP2xBMaBI

Patients who want to donate organs need to die on a ventilator in a hospital so their organs stay oxygenated even after their brain dies. "in order for a donor’s organs to be viable for transplant, the donor must die in a very specific way, i.e. through brain death (usually due to head trauma or hemorrhagic stroke), in a hospital, on a ventilator... An informed medical team can make a huge difference if they remain vigilant about the health of organs even in a patient with a poor prognosis"
healthcarejournalno.com/HJNO/2013-jan-feb/2013-jan-feb/#/14/

Patients on ventilators can often live at home. Some nursing homes provide care, though not many, since care can cost more than Medicaid pays.
Picture
Breathing tubes and mechanical ventilation are used primarily in emergencies or general anesthesia. The video shows basics and placement. The tube goes into the windpipe, then a collar is inflated to seal the gap to the walls of the windpipe and let air be pumped in or pulled out. An inflated collar prevents speaking, by blocking air outflow, so some models let the collar inflate and collapse with every breath, to let the person speak on the outflow, as Chris Reeves did.
youtube.com/watch?v=V8VIw0fk4X0

As always, there are support groups and books. Here is written advice from a polio organization: post-polio.org/edu/pphnews/pph17-2c.html


Picture
This video is a longer explanation for patients with a weak diaphragm muscle. A first step is CPAP or BiPAP (Continuous or Bi-level Positive Air Pressure) to increase air taken in by each breath at night. It can provide air through small nose plugs (called "pillows") which let the patient speak, eat or drink, or a mask which is set aside to speak, eat or drink. The air pressure may help muscles avoid further deterioration. The video covers early symptoms and later symptoms to an audience treating ALS (which Lou Gehrig had). An early symptom is poor oxygen levels in the blood, especially supine, measured by a gauge taped on a finger overnight ("oximetry"). There are experimental trials of a proposed next step in the form of a "diaphragm pacemaker" to help the diaphragm muscle work, just as a heart pacemaker helps the heart. Otherwise the next step is a ventilator, which provides the full volume and rate of breathing, usually 24/7. People on a ventilator need a feeding tube because it is hard to swallow, since the collar or balloon filling the windpipe presses back onto the esophagus. They also need someone with them 24/7, apparently because the machine is unreliable. When it malfunctions, the patient cannot breathe, so cannot adjust the machine. Mucus needs to be sucked out several times a day, though that in itself would not need 24/7 assistance.
youtube.com/watch?v=mqTkThNgtts


DIALYSIS

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This city inspector in Chicago talks about getting kidney failure because of his diabetes, and going 3 times per week to a dialysis center, 4 hours each time.
youtu.be/IjFnkwQPyLQ

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A dialysis company interviews patients who get dialysis at home while they sleep, so they don't have to spend hours at a dialysis center. 
youtu.be/8ET6_HPNPJU

 LACK OF SPEECH

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If the ventilator in the windpipe does not let the person speak, they need other ways to communicate, such as writing, or pointing to letters on a letter chart (which also has common phrases and symbols, such as I love you, and can be high tech). For a person who cannot point and can only indicate yes, no, maybe, a partner can point to the 6 rows of a letter chart, until they get to yes, then the 6 columns, thus indicating any one of 36 symbols.
youtube.com/watch?v=RIoY16dhcY8 with slides at alsphiladelphia.org/document.doc?id=1994


Picture
This video shows a man spelling quickly just by looking at letters, with a laser pointer attached to his glasses, so his wife can see the letters his laser points at. They like this better than higher tech methods.
youtube.com/watch?v=AooDQOzdOyE


You can also find support groups, books, and use ProPublica and Medicare to compare dialysis centers.  Medicare has more recent data, but gives only a summary 1-5 star rating for each center, while ProPublica gives detailed breakdowns of each center's quality of care.

MENTAL EXERCISE

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Owner/operator of 181-bed nursing home in Pennsylvania  describes levels of activities for different levels of dementia.
youtube.com/watch?v=vk4wcLK9nTc

Even advanced dementia can leave patients able to recognize and enjoy families a few hours a day. There are ways to address anger. Patients below age 60 can have trouble finding a nursing home to accept them, when anger causes them to lash out.

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Minnesota program encourages people to visit nursing home residents as volunteers. 
youtube.com/watch?v=Xp9wVh3GcP0

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Several programs provide dogs for people with mental issues, such as veterans with PTSD.
youtube.com/watch?v=o3nzeykzpy8

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If a nursing home might be needed after a hospital stay, a NY Times story explains that people cannot trust Medicare star ratings, and need to visit nursing homes and research complaint files before starting the hospital stay. The hospital will give only 24 hours notice, which is not enough. They recommend several visits to a nursing home, and conversations with others using it.
youtube.com/watch?v=-UVq5Cm40ac

WILL PEOPLE FOLLOW YOUR INSTRUCTIONS?

Medscape has a scary and pointed survey of how doctors decide what care to give:
  • a third pull the plug when they want to, even if the family wants further care
  • a quarter pull the plug when the family asks, even if the doctor thinks the patient can recover
  • a quarter pull the plug on a newborn if they think s/he will have a "terrible" quality of life
  • a tenth under-treat pain since they fear trouble from the Drug Enforcement Agency or patient addiction
  • a tenth deny treatment when insurance won't cover it, even when the patient can pay privately
medscape.com/features/slideshow/public/ethics2014-part1?src=wnl_edit_specol
They surveyed 17,000 US doctors and 4,000 European doctors.


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.

 ETHICS COMMITTEES

When a patient or representative disagrees with a hospital doctor's plan of care, either can appeal to the hospital's ethics committee, which has 1 or 2 people on call to listen and advise. If patients are in a hurry they need to decide whether to spend a few hours on this internal procedure or go straight to court, based on an attorney's advice. 

Loyola University has 3 free video case studies, which use actors to train ethics committee members. Loyola says the committee should get the doctor's story first, and prepare the doctor before the meeting, "prepare any health-care team members for participation in the conference." No one prepares the patient or representative. In 2 of the 3 cases the doctors get what they want by their forceful arguments. Ethics committee members' goal seems to be getting a decision made and accepted by doctor and representative. Rubin says mediation by untrained mediators subverts ethics, and adds, "it would not be unexpected to find more disagreement than consensus surfacing as difficult cases are discussed in the ethics consultation process."

The case studies never address the financial incentives everyone has: the hospital (which employs committee members) is generally paid a flat fee for each hospital stay, based on the patient's main diagnosis, but not based on the length of his/her stay, so shorter treatment saves the hospital money, and death prevents future readmission penalties. Furthermore enrollment in hospice will remove the death from the hospital's death rate, as tracked by Medicare.

In all 3 of Loyola's training videos, the representative goes into a room with 3 hospital staff, and there's no discussion of getting a second opinion from an independent doctor. The representatives are tired from care-giving. One says she's been with her mother for 30 hours. The doctors are understandably in a hurry to get back to other patients. The ICU doctor has either left the ICU for the meeting, or has stayed for a meeting after the end of her 12-hour shift, and she'll have to take the decision back to the next doctor to carry out. To avoid medical errors, representatives are advised to keep someone in the patient's room at all times, so if the representative has an ally at the hospital, that ally is probably in the patient's room. For these life and death decisions, a representative really needs an ally who's been through the process before, like a former ethics committee member, a nurse-advocate, or a lawyer.

The chair of U of Michigan Medical Center's ethics committee describes how his committee works (starts at 2:15 minutes into the video and goes to 17:15 minutes). He says that two committee members discuss the issues with doctors and representatives or patients, then post their draft report on an internal website for other committee members to post comments.

LAW

Federal law requires: "42 CFR 489.102 (a)  Hospitals, critical access hospitals, skilled nursing facilities, nursing facilities, home health agencies, providers of home health care... must maintain written policies and procedures concerning advance directives... and are required to: 

"(1)  Provide written information to such individuals concerning— 
"(i)  An individual's... right to accept or refuse medical or surgical treatment and the right to formulate, at the individual's option, advance directives... and 
"(ii)  The written policies of the provider or organization respecting the implementation of such rights...
"(4)  ...The provider must inform individuals that complaints concerning the advance directive requirements may be filed with the State survey and certification agency"
A lawyer says this rule is almost never enforced.

TALKING WITH DOCTORS

"But most people die in the healthcare system. Indeed, most of them die as the result of a deliberate decision to stop medical treatment that might have prolonged their life" (Pope, 2011, Widener Law Review)

When a patient enters a hospital, s/he is sick, weak and/or in pain, and has often forgotten to wear hearing aids. Hospitals may not let the
representative in the room at first. At that moment an unknown doctor asks orally whether the patient wants CPR, electric shocks or a breathing tube if the heart or breathing stops. The questioning occurs even if there is an advance directive, since the patient's choice might change. Miscommunication is possible.

Hospitals and doctors have trouble talking to patients about the end of life. This section gives examples from the American Medical Association, Los Angeles. and Canada.

Six professors and doctors from the University of Chicago, Johns Hopkins, Northwestern, St Luke's-Roosevelt and Massachusetts General say (J of the Am. Geriatric Soc. 1/2013), "clinicians lack sufficient understanding of the predictors of survival after CPR to assist in such discussions." There are ways to estimate life expectancy, accounting for patient health, but these are little better than chance.

​The medical representative must deeply probe for possible treatments, probably by reading UpToDate, since many doctors do not offer complete options to older people.

AMA Code of Medical Ethics Opinion 5.5

  • Physicians should only recommend and provide interventions that are medically appropriate—i.e., scientifically grounded—and that reflect the physician’s considered medical judgment about the risks and likely benefits of available options in light of the patient’s goals for care.
  • Physicians are not required to offer or to provide interventions that, in their best medical judgment, cannot reasonably be expected to yield the intended clinical benefit or achieve agreed-on goals for care. Respecting patient autonomy does not mean that patients should receive specific interventions simply because they (or their surrogates) request them.
  • Many health care institutions have promoted policies regarding so-called "futile" care. However, physicians must remember that it is not possible to offer a single, universal definition of futility. The meaning of the term "futile" depends on the values and goals of a particular patient in specific clinical circumstances.
  • As clinicians, when a patient (or surrogate on behalf of a patient who lacks decision-making capacity) request care that the physician or other members of the health care team judge not to be medically appropriate, physicians should:
(a) Discuss with the patient the individual’s goals for care, including desired quality of life, and seek to clarify misunderstandings. Include the patient’s surrogate in the conversation if possible, even when the patient retains decision-making capacity.
(b) Reassure the patient (and/or surrogate) that medically appropriate interventions, including appropriate symptom management, will be provided unless the patient declines particular interventions (or the surrogate does so on behalf of a patient who lacks capacity).
(c) Negotiate a mutually agreed-on plan of care consistent with the patient’s goals and with sound clinical judgment.
(d) Seek assistance from an ethics committee or other appropriate institutional resource if the patient (or surrogate) continues to request care that the physician judges not to be medically appropriate, respecting the patient’s right to appeal when review does not support the request.
(e) Seek to transfer care to another physician or another institution willing to provide the desired care in the rare event that disagreement cannot be resolved through available mechanisms, in keeping with ethics guidance. If transfer is not possible, the physician is under no ethical obligation to offer the intervention.

Comments on AMA Ethics

  • No court asks a person to negotiate a life-changing case while sick, as required in (c).
  • Every 12 hours the doctor changes, and a new negotiation may be needed. Doctors cannot be identified in advance, so this AMA ethics approach offers no way to negotiate when the patient is healthy. 
  • No guidance in preamble for how to "agree" on goals: seeing another dawn, time to pray, hugs?
  • Appeal process in (d) is inside the hospital. Few patients know about it. Few patients know which treatments they are not offered.
  • No agreement in (e) means no treatment, which satisfies some patients, but not all.
  • AMA tells patients a fib, "an advance directive, can ensure that your wishes will be honored."
  • AMA's 2010 report on advance care planning does not mention these negotiations will happen.
A bioethicist for Mercy Health (4 hospitals in and near Philadelphia) notes (AMA  J of Ethics May 2007 emphasis added):
"If agreement is not reached between the physician or hospital and the patient or surrogate, either party may seek injunctive relief from the courts, or the patient/surrogate may file medical malpractice action... the threat of litigation alone will deter some physicians from ever invoking a futility policy... a consensus among physicians can then be submitted as evidence in legal proceedings to demonstrate that the standard of care was not breached."
  • If patients and representatives/surrogates want to follow the hospital bioethicist's suggestion of injunctive relief, they need to choose a specialized lawyer. Lawyers always say to contact them before a crisis happens. Malpractice lawyers are the most common specialty with experience understanding hospitals' decisions.
Other chapters of the AMA code of ethics include the following:
  • 1-Doctor-patient relations
  • 3-Communication
  • 3-Privacy and records
  • 4-Genetics + Reproduction
  • 5-End of life
  • 5-Organ Donation
  • More discussions

Los Angeles

Nine major Los Angeles hospitals and medical groups issued a press release promising "shared-decision making with patients" at the end of life. They did not release the actual guidelines, so I got them from UCLA under California's Freedom of Information Act. The guidelines cover 33 hospitals, 10,000 doctors and 7,000,000 patients.

Surprisingly, the new guidelines call many standard treatments "non-beneficial," (emphasis added in all quotes in this section) and encourage doctors not to discuss them with patients. They say: "In patients with late-stage terminal illness, use of interventions such as
  • "renal dialysis
  •  "intravenous feeding
  •  "gastric [tube] food feeding
  •  "artificial ventilation
  •  "cardiopulmonary resuscitation or
  •  "admission to an intensive care unit
"are generally non-beneficial and may cause an increase in pain and suffering (i.e. harm)" (footnote 5)

Problems with this Los Angeles guidance include:
(A) there is no definition of "late stage," and 
(B) "terminal illness" is so broadly defined it covers most older people: "any disease affecting one or more organs whose progression is not preventable, and commonly leads or contributes to death or manifest deterioration (mental or physical) within a predictable timeframe" (footnote 3). This definition of terminal illness covers: 
  • arthritis, 
  • failing ears, eyes and memory, 
  • clogged or hardened arteries, 
  • breathing problems, and 
  • people with disabilities. 

The Los Angeles guidelines apply during "late-stage terminal illness." This appears to include:
  • stage 3 cancer, heart or lung disease, or
  • moderate dementia, or
  • life expectancies longer than 6 months,
because "end-stage terminal illness" is defined as: "often includes, though is not limited to, 
  • stage 4 disease of the heart or lungs, stage 4 cancer, or
  • advanced dementia, … [and]
  • life expectancy of less than 6 months" (footnote 3).
So at stage 3, or with life expectancy of 12 months, the guidelines give doctors legal cover, "not obliged to offer or provide medically non-beneficial treatment" (section 4). 

They are allowed to deny dialysis, tube feeding, CPR, ventilation or ICU, so the doctor earns Medicare rewards for saving money, and so patients don't survive to cause very expensive readmission penalties at the hospital. 

By not offering these standard treatments, doctors deny patients the choice of more time with family and friends. A single dialysis session can clean a patient's system, giving a few more days to make decisions on continuing care or to say goodbye. A single CPR has a 23% chance of success, and gives a median of 2 more years of life, in about the same state of health as before.

After a treatment is called non-beneficial California law lets a doctor be silent about it, except when a patient or representative directly instructs it be done. Then the doctor must give the treatment or offer to transfer the patient elsewhere. But patients almost never have independent advice to make such a direct instruction, so doctors are allowed to stay silent while shared decision-making and life disappear.

The Los Angeles guidelines say, "Decisions not to comply with a patient or legally recognized healthcare decision maker's request for medically non-beneficial treatment should be undertaken in accordance with California probate code sections 4734-4736" (footnote 5).

California probate code says, "4735.  A health care provider or health care institution may decline to comply with an individual health care instruction or health care decision that requires medically ineffective health care or health care contrary to generally accepted health care standards applicable to the health care provider or institution." 

Thus the effect of the new guidelines is to permit the silent denial of dialysis, tube feeding, CPR, ventilation and ICU whenever doctors want to deny them to patients with chronic illnesses.

The guidelines cover 33 hospitals, 10,000 doctors and 7,000,000 patients in southern California: 
  • Cedars-Sinai - 1 hospital
  • HealthCare Partners Medical Group - 600,000 managed care patients
  • Huntington Hospital in Pasadena
  • Kaiser Permanente Southern California - 14 hospitals, 6,000 physicians, 3,600,000 patients
  • Los Angeles County–USC Medical Center | Keck School of Medicine
  • MemorialCare Health System - 6 hospitals
  • Olive View–UCLA Medical Center
  • Providence Health and Services - 6 hospitals*
  • UCLA Health System - 4 hospitals, 2,000 physicians, 2,500,000 patients
*Providence, in the list above, is a Catholic health system. Another article discusses the compatibility of Catholic teaching with the guideline above on not offering artificial feeding.

Canada

Canada distinguishes 3 types of patients:
  • "(a) People who are likely to benefit from CPR and people for whom benefit is uncertain will normally be made aware that emergency, lifesaving measures will be instituted if the need arises. This information should be presented during discussion about the plan of treatment so as not to alarm the person.
  • "(b) People for whom benefit from CPR is unlikely should be made fully aware of the limitations of CPR. Their life goals, values and preferences should be discussed before or shortly after admission to a health care facility , before the need for resuscitative intervention arises.
  • "(c) People who almost certainly will not benefit from CPR are not candidates for CPR, and it should not be presented as a treatment option. Whether this is discussed with the person is a matter of judgement based on the circumstances of the case and the principles specified earlier."
Canada has further explanation: 
  • " 'futile' and 'nonbeneficial' are understood as follows. In some situations a physician can determine that a treatment is 'medically' futile or nonbeneficial because it offers no reasonable hope of recovery or improvement or because the person is permanently unable to experience any benefit. In other cases the utility and benefit of a treatment can only be determined with reference to the person's subjective judgement about his or her overall well-being. As a general rule a person should be involved in determining futility in his or her case. In exceptional circumstances such discussions may not be in the person's best interests."

SOME STATES' STANDARD WORDING

A few state forms show the kinds of choices people need to make, but none of the terms is defined, and there is no discussion of the choices. Bold type was added to simplify comparisons:

CALIFORNIA's Attorney General has a form which asks you to check (a) or (b) and optionally (2.2) and/or (2.3):
  • (a) Choice Not to Prolong Life - I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits, OR
  • (b) Choice to Prolong Life - I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.
  • (2.2) RELIEF FROM PAIN: Except as I state in the following space, I direct that treatment for alleviation of pain or discomfort be provided at all times, even if it hastens my death:
  • (2.3) OTHER WISHES:

NEW YORK state's instructions provide model language to include on their form,
  • If I become terminally ill...
  • If I am in a coma or have little conscious understanding, with no hope of recovery...
  • If I have brain damage or a brain disease that makes me unable to recognize people or speak and there is no hope that my condition will improve...
Loved ones and doctors always hope for recovery, so perhaps they mean "low probability" of recovery; would that mean under 1%, under 25%?

TEXAS form lets you choose:

If, in the judgment of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care:
  • I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible; OR
  • I request that I be kept alive in this terminal condition using available life-sustaining treatment. (THIS SELECTION DOES NOT APPLY TO HOSPICE CARE.)
If, in the judgment of my physician, I am suffering with an irreversible condition so that I cannot care for myself or make decisions for myself and am expected to die without life-sustaining treatment provided in accordance with prevailing standards of medical care:
  • I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible; OR
  • I request that I be kept alive in this irreversible condition using available life-sustaining treatment. (THIS SELECTION DOES NOT APPLY TO HOSPICE CARE.)
Additional requests: (After discussion with your physician, you may wish to consider listing particular treatments in this space that you do or do not want in specific circumstances, such as artificial nutrition and fluids, intravenous antibiotics, etc. Be sure to state whether you do or do not want the particular treatment.)
  • After signing this directive, if my representative or I elect hospice care, I understand and agree that only those treatments needed to keep me comfortable would be provided and I would not be given available life-sustaining treatments...
  • If, in the judgment of my physician, my death is imminent within minutes to hours, even with the use of all available medical treatment provided within the prevailing standard of care, I acknowledge that all treatments may be withheld or removed except those needed to maintain my comfort.

LAWYERS who draft a will or trust, often provide custom wording for advance directives too. However they are usually specialists in estate planning, not medical law, so they do not know all the choices which will occur in health care, and in any case patients' choices change with technology and increasing age.

CATHOLIC TEACHING ON TUBE FEEDING

US Catholic bishops asked the Pope's office about tube feeding, and the Pope's office answered,

"First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a 'vegetative state' morally obligatory except when they cannot be assimilated by the patient's body or cannot be administered to the patient without causing significant physical discomfort?
  • "Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.
"Second question: When nutrition and hydration are being supplied by artificial means to a patient in a 'permanent vegetative state', may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?
  • " Response: No. A patient in a 'permanent vegetative state' is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means."
vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_risposte-usa_en.html
Official Commentary: vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_nota-commento_en.html


Another article discusses the compatibility of this Catholic teaching with the Los Angeles guidelines, discussed above, which tell doctors they do not need to offer artificial feeding to certain patients, even if the patients need artificial feeding to live.

TRAINING NURSES ON TUBE FEEDING

There are several instructional videos for nurses, usually showing staff touching many surfaces (hair, nose, glasses, flashlight, stethoscope, cough, etc.) then handling the tube as it goes into the patient's nose and throat. The lack of cleanliness is another reason patients may want to insert their own tubes.
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Fine diameter tubes are for feeding. Larger diameters are for draining gastric contents. The video says to turn the tube 180 degrees when it reaches naso-pharynx, so the slightly curved end will not go down the windpipe in front, but down the esophagus in back.
youtube.com/watch?v=WgfNa7dzSn0

Instructions for 14-18 French; coil tube on your hand to soften it
youtube.com/watch?v=dj45W_LZbyE
Instructions for 14-16 French tube; coil on index finger to get curve
youtube.com/watch?v=en5ctZInOyA

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Slow insertion of big tube. After procedure, trainer instructs nurse to document type and size of tube, which side of the nose was used, length of tube left outside the patient, type of liquid that came out of the stomach on first insertion, and patient's response. The nurse does not make notes of these during the procedure, and many minutes may pass before the nurse writes these down. In this video she brushes the patient's teeth before going to write down the notes.
youtube.com/watch?v=SaNG2Y_bgQY 

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Slow insertion of big tube by nurse trainee 
youtube.com/watch?v=lHp7osmgov8

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Instructor says the procedure is supposed to be clean, but not sterile. Instructor says the nurse can document it after leaving the patient's room.
youtube.com/watch?v=S-GNi6YWID8

ANECDOTES

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.
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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.

Centenarians who Stay Active

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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.

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

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

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