|
Direct url: aaa.globe1234.com
Contents
[ ] After my representative gets second opinions and is convinced I can never have a life I would want: LET ME GO: DNR-Do Not Resuscitate. No Cures. YES to comfort, hospice, palliative care. ▷ [ ] ORGAN DONATION: Keep my 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 my representative thinks are worth trying, to improve or maintain my health, muscles, mental functions, or reduce my decline or pain. ▷ [ ] LIMIT PAIN: I can 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. Get consultation from a "Pain Management" specialist. Their training and exams have more detail on both drug and non-drug control of pain than palliative/hospice doctors, hospitalists, or others. Along with pain management, I want treatments to improve or maintain my health, or reduce my decline.. ▷ [ ] LIMITED TUBES can be OK. 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 I stay unconscious and need tubes for a long time, follow the coma instructions. ▷ MORE CHOICES: [_] CONSULTATIONS: Get additional opinions from independent experts. [_] Play TALKING BOOKS, MUSIC, etc., in case my mind is aware. [_] Get me ASSISTIVE DEVICES to write, talk, use social media, control light and heat, etc. 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. Click for a form where you can make the choices above: word or pdf 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:
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:
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 PARADOXIt 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.
"[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 TUBESTube 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.  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.  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:
 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  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:
There are more videos at the bottom of the page to train people for inserting nose tubes. BREATHING TUBES 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/  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  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 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  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  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  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  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.  Minnesota program encourages people to visit nursing home residents as volunteers. youtube.com/watch?v=Xp9wVh3GcP0  Several programs provide dogs for people with mental issues, such as veterans with PTSD. youtube.com/watch?v=o3nzeykzpy8  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:
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:
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.
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:
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
(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
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."
Other chapters of the AMA code of ethics include the following: Los AngelesNine 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
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:
The Los Angeles guidelines apply during "late-stage terminal illness." This appears to include:
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:
CanadaCanada distinguishes 3 types of patients:
SOME STATES' STANDARD WORDINGA 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):
NEW YORK state's instructions provide model language to include on their form,
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:
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 FEEDINGUS 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?
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.
0 Comments
Leave a Reply. |
|