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Presentation to the Department of Internal Medicine, King
Fahad Medical City, on March 5, 2013 by Dr Omar Hasan
Kasule Sr.
Definition of Advance directives (ADS)
·
Advance
directives (ADs) respect patient prospective autonomy[1].
·
They
do not solve all issues[2]
but they help shift responsibility for end of life decisions from the health
care providers (HCPs) and the family to the patient.
·
In
essence ADs assure psychological difference between ‘pulling the plug’ by the
HCPs to ‘honoring the patient’s wishes’[3]
even if the outcome of the decision is the same.
·
ADs
address two questions to the patient in anticipation of decisions during future
incapacity: (a) what would you like us to do for you? (b) who do you designate
to decide for you?.[4]
Classification of Advance Directives
·
ADs
are classified into 2 categories: (a) Instructional directives (IDs) / living
will made by a competent person to address future treatment decisions; (b)
proxy directives (PDs) that involve designating a substitute decision maker.
·
In
practice IDs and PDs are used together
·
POLST
(Physician Orders for Life-Sustaining Treatment) a process that translates what
the HCPs understands from discussion with the patient as patient goals for end
of life care into medical orders. [5]
Instructional directives (the living
will): advantages and disadvantages
·
Advantages
(a) reassuring the patient that terminal care will be carried out according to
patient desires (b) providing treatment guidelines for caregivers and relieving
them of the burden of end of life decisions and associated legal liabilities[6] (c)
relieving the family of the mental stress involved in making decisions about
terminal care.
·
The
major disadvantage of the ID is that it cannot anticipate future situations
perfectly and ends up limiting the best treatment options available to the
caregivers and the family. It also has other ethico-legal complications in its
formulation and implementation that will be discussed subsequently.
Proxy decision maker: 2 approaches
·
The
substituted judgment standard (decide what the patient would have decided if
able): The substituted judgment standard takes into consideration the patient’s
personality, beliefs, values, personal philosophy, character, life experiences,
or previously expressed opinions.
·
The
best interest standard (decide in the best interests of the patient): The best
interest standard is based on what an average individual in that society would
decide after consideration of benefits and risks of various medical interventions
or non-intervention. The balance of risks and benefits should not be focused on
the patient alone, the family and the community, resources are considered
CASE DISCUSSION 1
Case #1: An elderly nursing home
resident with advanced lung cancer while competent wrote an ID authorizing his
son to make decisions in case of incapacity but added a condition that in no
case was he to be admitted to a hospital if he developed respiratory arrest, he
wanted to die in the home. Two years later he developed severe aspiration pneumonia
leading to respiratory distress. The HCPs advised his son that hospital
admission was necessary. The son refused according to the father’s ID (qa’idat al qasd)
Case #2: A 40-year old woman with
recurrent breast cancer was admitted to the ICU and had discussions with the
HCPs about what would be done if she was incapacitated and oncologists wanted
another cycle of chemotherapy. The HCPs listened to her views and wrote medical
orders that the patient would be treated aggressively for her cancer. Later an
old PD was discovered in her file authorizing her son to make decisions for
her. When she became incapacitated and the oncologists wanted the son’s
approval for chemotherapy the son refused. (qa’idat al yaqeen)
CASE DISCUSSION 2
Case #3: A young businessman who was a
heavy smoker wrote an ID that if he ever got cancer he should be treated
conservatively and should not be admitted to the ICU if he developed cardio-respiratory
failure. He explained that the he wanted to leave money for his young children
instead of spending it on medical bills. Thirty years later he developed lung
cancer and needed ICU care. His ID was found in his medical records but by that
time his two children and wife had died in a swimming accident. (qa’idat al
qasd)
Case #4: The wife of a demented patient
had been named a proxy decision maker years before the current disease
developed. When called upon to make an end of life decision she was confused.
Her husband had told her 10 years ago while still healthy that he did not want
CPR but 3 year ago he had said that he wanted to try any treatment at whatever
cost and did not want to give up on life and had written an ID to that effect. (qa’idat
al yaqeen)
CASE DISCUSSION 3
Case #5:A proxy decision maker was faced
with a difficult decision for his 90-year old father on consenting to a 10-hour
double operation that would involve de-bulking advanced lung cancer followed by
chemotherapy and open heart surgery to replace AV valves. There was no room in
the ICU for post operative care..(qa’idat al dharar)
Case #6: An elderly nursing home inmate
suffering from complications of arthritis and diabetes for a long time wrote an
ID that if he ever gets a heart attack he should not be resuscitated and should
be left to die in dignity because he was tired of suffering with pain (hifdh
al nafs)
Case #7: An aphasic post stroke
patient who seemed to understand and respond to verbal communication was asked
whether he would like to return home or go to a nursing home. He indicated his
choice by signs (qa’idat al ‘urf)
CASE DISCUSSION 4
Case #8: An elderly patient with
dementia forgot his age and names of his children and was sometimes not sure of
the time and day but he managed his stock exchange portofolio and wrote a daily
column in the nursing home newsletter. He called the nurses and asked for forms
to write his advance directives. (qa’idat al yaqeen)
Case #9: A 15-year drug addict with
several psychiatric illnesses was arrested by the police for disorderly
behavior and was taken to the mental hospital for treatment. He had in his
pocket an ID note written on his last
charge from the hospital and properly witnessed refusing any chemotherapy for
his drug and psychiatric problems. The mental hospital needed to give him
medication to control his agitation and violence but were not sure what to do. (hifdh
al nafs, qa’idat al dharar)
CASE DISCUSSION 5
Case #10: An unconscious patient was
picked up from the road by the police and was taken to hospital. Initial
examination showed that he had cranial trauma that required immediate and
prolonged surgery by the neurosurgery team. He had a note in his shirt pocket
with the telephone of his father who lived in a foreign country. The hospital
director refused to call the father for authorization of the surgery arguing
that an unconscious patient has lost autonomy rights and that the doctors can
decide for him. (qa’idat al dharar) .
Case #11: A metropolitan hospital posted
notices on ward notice boards that patients who needed discussion of ADs could
approach the nursing managers. In an internal memo all HCPs were warned not to
initiate discussions of ADs unless the patients asked for fear of accusations
of coercion. (qa’idat al dharar)
CASE DISCUSSION 6
Case #12: The nurse manager approached a
terminally ill patient to discuss writing an AD. The patient was very angry
saying ‘you people want me to die, you want me to sign my own death warrant so
that you can legally avoid giving me the best care possible’. The nurse
retreated and forgot about the matter. (qa’idat al dharar)
Case #13: A patient approached to
initiate discussions about an AD was angry and retorted ‘you are HCPs who are
agents of cure the real cure is from Allah and it is Allah who determines life
and death. Do not talk to me about dying and preparing for it, you know nothing
and have no authority’ (hifdh al ddiin)
CASE DISCUSSION 7
Case #14: HCPs providers asked relatives
whether an unconscious terminally ill patient had an AD. They brought in 2
documented the next day signed on the same date one asking HCPs to do all what
they can to save life and the other saying that tubes should never be stuck in
his throat. (qa’idat al yaqeen)
Case #15: A terminally ill patient had
an AD recorded orally and witnessed by a nurse while she was still competent.
When she fell unconscious the HCPs could not decipher the AD. A line with a
different pen crossed out the sentence ‘I direct doctors to do all they can to
save my life’. (qa’idat al yaqiin)
CASE DISCUSSION 8
Case #16: A dispute arose between HCPs
and a patient who refused to complete government provided AD forms that were
too complicated and wanted to write the AD in his own handwriting and using his
own words. The HCPs refused to recognize the patient’s document and returned it
to him refusing to include it in the medical record (qa;idat al yaqeen)
Case #17: A professor of bioethics who
published several articles favoring CPR in terminal cases was admitted to the
ICU in serious illness. His family insisted on letting him die in dignity
because his case was futile. The HCPs who had read his articles decided to do
CPR against the wishes of the family even against the threat of being sued. (qa’idat
al dharar, hifdh al nafs)
CASE DISCUSSION 9
Case #18: A physician admitted
unconscious to the ICU had a witnessed AD refusing any intubation. His family
interpreted this to mean that no other resuscitative measures would be
undertaken including chest compressions, mouth-to-mouth breathing, ionotropics,
and oxygen masks. The HCPs wanted to go ahead with resuscitative measures that
excluded intubation and lung ventilation. (qa’idat al dharar)
Case #20: A patient aware of the
legislation about ADs asked the HCPs for advice and forms on how to complete an
AD. They told him they could not help since ADs had never been completed in
their hospital. The patient contacted his lawyer to sue the hospital. (qa’idat
al dharar)
CASE DISCUSSION 10
Case #21: An ambulance crew that was in
the neighborhood arrived 2 minutes after the patient collapsed. The 90-year old
patient showed by her hands that she did not want them to touch her. Her
daughter who was with her told them the mother has a written AD in which she
refused CPR in case of collapse but that she did not know where the document
was stored. The emergency personnel did not know what to do. (qa’idat al
yaqeen)
Case #22: An elderly patient who for the
past 30 years used traditional/complementary medicine and written an ID
refusing anything to do with hospitals developed what daughter nurse diagnosed
clinically as acute hepatitis. She refused to go to hospital preferring to die
in the nursing home. As her liver failure progressed she lost consciousness. In
view of the deterioration and the infectiousness of the condition the daughter
decided to take her to hospital where she could be treated in isolation. (qa’idat
al dharar)
CASE DISCUSSION 11
Case #24: A patient with advanced
nasopharygeal carcinoma issues an ID that he did not want insertion of a
nasogastric tube and appointed his brother as a proxy to ensure that the
decision would be carried out without any modification whatever the
circumstances. (qa’idat al dharar)
Case #25: A father write an AD
appointing his oldest son as a proxy decision maker. The son returned hurriedly
from a course in the US when the father fell unconscious and HCPs called him to
make decisions. On arrival he refused to made the decisions and said he never
knew about his appointment and if he had known he would have refused. He
delegated the responsibility to his uncle and decided to return to the US. (qa’idat
al dharar)
CASE DISCUSSION 12
Case #26: A proxy decision maker designated
by the patient in an AD decided on CPR for his unconscious father who had had a
heart attack. The mother objected saying that her husband had been telling her
all through the past 15 years that he would never agree to CPR if his heart
stopped. (qa’idat al yaqeen)
Case #27: A patient issued an AD shown
to the HCPs with two proxy decision makers: his son and his brother. The two
disagreed on what decision to take. The son, in the absence of his uncle, told
the doctors that he had decided on CPR for his father. The doctors carried out
the CPR and the uncle was furious on his return. (qa’idat al dharar)
CASE DISCUSSION 13
Case #28: A stroke victim in and out of
coma had issued an AD during a period of consciousness appointing his wife as
proxy decision maker. When he fell unconscious the wife made the decision to go
ahead with CPR despite her knowledge of his vehement opposition. When he woke
up and realized what she had done he told the doctors that he had dismissed her
as proxy. (qa’idat al dharar)
Case #29: A wife appointed as proxy
decision maker was stressed and started crying when the patient lost
consciousness and the doctors were asking her to make a quick decision on
intubation. She hesitated and told them she had resigned from being a proxy
decision maker.
(qa’idat al dharar)
CASE DISCUSSION 14
Case #30: A proxy decision maker
designated by a comatose keto-acidotic patient was perplexed when doctors asked
him to consent to foot amputation to prevent fatal septic shock. All members of
the family were against the amputation saying that the patient had always
repeated his desire to be buried in one piece and not mutilated like his sister
who had died of diabetes several years after losing two of her legs by below
knee amputation that in the end did not save her life. (maqsad hifdh al
nafs)
Case #31: A proxy decision maker was
confused how to decide on a spinal operation for his brother who had severe
limb pains and failure to walk for 3 weeks following a car accident. The
neurosurgeons told him that the operation had a 5% percent chance of success resulting in return
of complete function. It also had an 80% chance of being complicated by
paraplegia. (qa’idat al dharar)
CONCLUSIONS
·
Advance
directives are useful tools for making end of life decisions
·
Advance
directives are not as popular as they should be because of lack of awareness
and knowledge
·
Implementation
is beset with a lot of problems
REFERENCES