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 a lawyer'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.
Some doctors criticize modern ethics practice, because "the ethical interpretation of patients’ best interests at the end of life has been reduced predominantly to an external agent’s assessment of quality of life."
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:
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
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:
Canada distinguishes 3 types of patients:
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