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Presentation to the Muslim Medical
Professionals Ramadhan Seminar Mombasa Saturday August 3, 2013 by Professor
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 writes 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 make 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