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Medical Representative, Life-Supporting Treatment,
and Advance Directives Direct
url: aaa.globe1234.com Comments, problems
with page or links: comment@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. https://www.trilliumstudios.com/archive/2017/12/1/scott-and-melanies-story
Contents Life-Supporting Treatment at Any Time How People Handle Major Issues 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. Mail the form, or
create and sign into your Medicare.gov account and submit the form online,
https://www.cms.gov/Medicare/CMS-Forms/CMS-Forms/CMS-Forms-Items/CMS1193148
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. HOW PEOPLE HANDLE MAJOR ISSUES
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, 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. Creative people design fashionable
cloth or other covers for assistive devices 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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