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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.
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.
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.' "
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.
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.
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.
Considering whether care is helpful or futile, AMA opposes "the concept of 'futility,' which cannot be meaningfully defined."
AMA has intricate rules for considering advance directives in "Ethics Opinion 2.037 - Medical Futility in End-of-Life Care." They expect sick patients in the hospital to negotiate for whether their wishes will be followed. AMA's background reports for this opinion show their thinking goes back to 1990 when CPR rarely succeeded. AMA says (emphasis added):
"give consideration to patient or proxy assessments of worthwhile outcome... [The] intent... should not be to prolong the dying process without benefit to the patient or to others with legitimate interests. They may also take into account community and institutional standards..."
"(1) All health care institutions… should adopt a policy on medical futility; and
"(2) Policies on medical futility should follow a due process approach. The following seven steps should be included…
"(a) …negotiate… on what constitutes futile care for the patient, and what falls within acceptable limits for the physician, family, and possibly also the institution.
"(b) Joint decision-making should occur between patient or proxy and physician to the maximum extent possible.
"(c) Attempts should be made to negotiate…
"(d) Involvement of an institutional committee such as the ethics committee should be requested if disagreements are irresolvable.
"(e) If the institutional review supports the patient’s position and the physician remains unpersuaded, transfer of care to another physician within the institution may be arranged.
"(f) If the process supports the physician’s position and the patient/proxy remains unpersuaded, transfer to another institution may be sought and, if done, should be supported by the transferring and receiving institution.
"(g) If transfer is not possible, the intervention need not be offered."
Unfortunately the AMA language about futility in End-of-Life Care dates to 1990 when CPR rarely succeeded for patients with certain diseases. The 1990 Report supporting this Ethics Opinion says,
An updated report in 2005 did not update the data on success of CPR.
Three professors from Columbia and Harvard recommend (JAMA 3/7/2012, emphasis added):
"Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital."
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."
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:
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):
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 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?
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.