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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.
WILL PEOPLE FOLLOW YOUR INSTRUCTIONS?
Medical staff may ignore family instructions. Medscape surveyed physicians in 2018, 2016 and 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:
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.
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.
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.
103-year-old American rode a tricycle daily to the beach.
102-year-old Frenchman sets a bicycle record for centenarians.