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Medical
Representative, Life-Supporting Treatment, and Advance Directives Direct url: aaa.globe1234.com 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. trilliumstudios.com/scott-melanie Contents Life-Supporting
Treatment at Any Time Advance
Directives or Living Will Organ Donation and
Definitions of Death Patients'
Viewpoints, DNR, Hospice, Comfort, POLST Will
People Follow Your Instructions? LIFE-SUPPORTING TREATMENT AT ANY TIME 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:
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: https://www.cms.gov/Medicare/CMS-Forms/CMS-Forms/CMS-Forms-Items/CMS1193148.html 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:
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,
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.
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. 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.
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. 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
In
this video, a woman with a spinal injury describes living on a ventilator. youtu.be/YcVP2xBMaBI 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" healthcarejournalno.com/HJNO/2013-jan-feb/2013-jan-feb/#/14/ 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. 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
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 ADVANCE DIRECTIVES OR LIVING WILL 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. globe1234.org/coma.html
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. MORE CHOICES: [_] 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. GIVING ADVANCE DIRECTIVE TO DOCTORS? 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. http://ascopubs.org/doi/pdf/10.1200/JOP.2017.022566
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." https://elderlawnews.blog/2018/08/14/you-may-have-signed-a-living-will-but-scary-mistakes-can-happen-at-the-er/ ORGAN DONATION + DEFINITIONS OF DEATH 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. 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:
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.
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.' " 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:
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):
NEW YORK state's instructions
provide model language to include on their form,
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:
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:
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.)
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. |
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