Medical Representative, Life-Supporting Treatment, and Advance Directives

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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.


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.



Life-Supporting Treatment at Any Time

Naming a Representative

Feeding Tubes


Disability Paradox


Mental Exercise

Breathing Tubes

Lack of Speech


Advance Directives or Living Will

Organ Donation and Definitions of Death

Doctors' Viewpoints

Legal Viewpoints

Patients' Viewpoints, DNR, Hospice, Comfort, POLST

Will People Follow Your Instructions?

Some States' Standard Wording

Ethics Guidance




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



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:


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.




Tube feeding can actually be comfortable, helpful and dignified, especially with help of Chloraseptic (to prevent discomfort when pushing the tube down the throat) and small tubes (smaller than hospitals usually use, see link). It can be temporary or permanent.


Click to go to a page with explanations and videos about people who use tube feeding, and issues related to it.




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.


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.

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.



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 can 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.


Ruth Fitzmaurice, wife of a man with ALS (Lou Gehrig's disease, or MND Motor Neuron Disease) said,

  • "With each stage, you mourn the loss of it. But then - you have a cry. We cried a lot. You have a cry and then you pick yourself up and you move on. And that's the surprising thing to realize that you can suffer that much and mourn the loss of something, and yet wake up the next day, and still have the strength to keep going. And that's a really powerful thing because you begin to really believe in yourself and you begin to believe in each other." (at minute 37:08 in It's Not Yet Dark).

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

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. Canada has been criticized for lack of this care.


"[S]uddenly paralyzed... patients, having absorbed negative attitudes about disability and likely unaware of medical, technological and financial resources, dont 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.

Movies about living with disabilities are at



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.




Owner/operator of 181-bed nursing home in Pennsylvania describes levels of activities for different levels of dementia.


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.


Minnesota program encourages people to visit nursing home residents as volunteers.


Several programs provide dogs for people with mental issues, such as veterans with PTSD.


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.




In this video, a woman with a spinal injury describes living on a ventilator. A 2014 and 2018 book and 2016 documentary about an Irishman are both called "It's Not Yet Dark." A 2017 movie based on a different true story is Breathe.

A study interviewed patients who had DNR and DNI ("Do Not Intubate" orders. (Questions just covered intubation, though the authors called it "resuscitation.") 58% of patients wanted intubation in some scenarios, which calls into question their care or knowledge in accepting DNI orders.

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 donors 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"

Patients on ventilators can often live at home. Some nursing homes provide care, though not many, since care can cost more than Medicaid pays. Carers do not always get enough training in keeping the machine adjusted. A 2018 study said that with good care, ventilation for ALS patients "may prolong survival for 10 to 30 years," though the average is 3.5 years, (74 months with ventilation, compared to 32 months without, in Japan). Up to 2018, Emory University said a ventilator for ALS "will prolong someones life indefinitely," and they dropped that wording in 2019.


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.


As always, there are support groups and books. Here is written advice from a polio organization:


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.



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. with slides at


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.



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: 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. 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 from centers specializing in coma care (specialists don't call any comas permanent any more, see Coma article), if the representative is convinced the recovery time is longer than the patient 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.​ A study interviewed patients who had "Do Not Intubate" orders. (Questions just covered intubation, though the authors called it "resuscitation.") 58% of patients wanted intubation in some scenarios, which calls into question their care or knowledge in accepting orders not to intubate.


[_] 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.



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.[1719] 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":

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.

2018 " 'Dont 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 nurses mistake was based on a misguided belief that living wills automatically include "do not resuscitate" (DNR) orders."



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:

Consumer Checkbook has a good checklist of tasks after death.



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."


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.


Another article discusses how to find lawyers who specialize in health care.



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


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


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


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


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


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


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


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


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


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


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


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



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

  • 45% end care when they want to, even if the family wants further care
  • 34% end care when the family asks, even if the doctor thinks the patient may recover. This 34% is up from 28% in 2014. 19% refuse the family's instructions, down from 22%. 48% say "it depends"
  • 27% in 2014 said they would end care for a newborn if they thought s/he would have a "terrible" quality of life (not asked in 2016-2018)
  • 12% think some patients are taken off life-support too soon.
  • 20% under-treat pain since they fear trouble from the government, up from 9% in 2014 and 6% in 2010
  • They surveyed 5,000 US doctors in 2018, 7,500 in 2016, 17,000 US doctors and 4,000 European doctors in 2014.


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


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

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

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


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

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

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


Family members do not always follow instructions. Public radio quotes New Hampshire's "Long Term Care Ombudsman - basically the complaint department for New Hampshire nursing homes. He says whats directed in the form doesnt 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, thats not their job.' "


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.



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.



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


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


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


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


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


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


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


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


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


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

Centenarians who Stay Active


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.


108-year-old walks 5 miles each day. 104-year-old sprints.



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


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