Lec 2: Ethical considerations in death and dying

Question 1

Decisional Capacity

Answer 1

• Provider makes determination based on clinical examination that a patient is able to make decisions for him/herself
• Differs from competency
• Assessment
   Patient can do the following: Receive information, Evaluate and analyze information, Communicate a treatment preference
   Provider should look for: Understanding, Logic, Consistency

Question 2

Informed Consent: purpose, process, requirements?

Answer 2

• Purpose is to promote autonomy of the individual in medical decision making
• May be viewed as counter productive to physician ideals of patient’s well-being
• PROCESS whereby a provider discloses information to help a patient make healthcare choices
  .
• Requires 3 conditions
   Patient is able to make a voluntary decision
   Patient is informed
   Patient has capacity to make medical decisions

Question 3

Advance Directives: 2 types

Answer 3

1.) Living will
 Provides directions to physicians concerning the types of treatments/interventions to be employed or not if the patient becomes incompetent
.
2.) Decision-maker/surrogate

Question 4

Advance Directives: POLST Paradigm Program

Answer 4

• Started in Oregon in 1991
• Developed as a standardized, advance care planning document to be completed by health care professionals, together with a patient or surrogate decision-maker
• Active medical order that is transferred with the patient throughout the healthcare system

Question 5

In Hospital Sudden Cardiac Arrest. . .

Answer 5

• Several clinical factors have been identified that predict a greater likelihood of survival to hospital discharge
  —– Witnessed arrest
  —– VT or VF as initial rhythm
  —– Pulse regained during first 10 minutes of CPR
  .
• 209,000 treated for in-hospital cardiac arrest in 2016
  .
• Survival to discharge
   24.2% of patients of any age
   23.9% adults
   40.2% children (excluding neonates who experienced in-hospital cardiac arrest with any first recorded rhythm)

Question 6

CPR? and CPR Perceptions?

Answer 6

The procedure of CPR was never intended for use in patients dying an expected death from a chronic, fatal, medical illness
.
CPR Perceptions
-287 elderly surveyed
 41% opted for CPR prior to learning survival statistics
 After learning survival statistics, 22% wanted CPR, only 6% of >86yo
 11% wanted CPR if life expectancy <1 yr vs 5% after learning statistics
.
-524 healthy adults
 Significantly more patients chose DNR when included ”Allow Natural Death” included and comprehensive information given

Question 7

Do Not Resuscitate (DNR) Orders

Answer 7

• No code or allow natural death (AND)
• Typically employed in patients who have failed multiple therapeutic interventions
• Main goal to avoid life-sustaining measures that would be futile or could cause harm in the patient’s final days or hours
• Does not mean “do not treat”
• May include DNI (do not intubate)

Question 8

Problems with DNR Orders

Answer 8

• DNR discussions occur too infrequently and patients’ preferences regarding resuscitation are neglected.
• DNR discussions are delayed until it is too late for the patients to participate in decisions regarding resuscitation.
• Physicians do not provide adequate information to allow patients to make informed decisions.
• Physicians inappropriately extrapolate DNR orders to limit other treatments.

Question 9

Role of Surrogate Decision Maker

Answer 9

Question 10

Withdrawing Care

Answer 10

• Assuming all other life-sustaining treatments have been stopped, including artificial hydration and nutrition, there are several potential outcomes:
   rapid death within minutes
   death within hours to days
   stable cardiopulmonary function leading to a different set of care plans, including potential hospital discharge
  .
  -Families should be informed about the steps involved and counseled about oxygen and medications for symptom support

Question 11

What is Futility? Strict vs. Loose definition

Answer 11

Question 12

Determining Futility

Answer 12

• Futility does not apply to treatments globally, to a patient, or to a general medical situation. Instead, it refers to a particular intervention at a particular time, for a specific patient
• For example, rather than stating, “It is futile to continue to treat this patient,” one would state, “CPR would be medically futile for this patient.”

Question 13

How long should futile intervention or treatment be continued/offered?

Answer 13

• Appropriate to continue temporarily in order to assist patient or family in coming to terms with gravity of the situation
• Allow for time for closure/goodbyes
• Should NOT be used for the benefit of family members if likely to cause substantial suffering to the patient or if family’s interests are clearly at odds with those of them patients

Question 14

Problems with Invoking Futility

Answer 14

• Judgments are often mistaken or problematic
• Futility applies to few patients
• Unilateral decisions polarize parties
• Value judgments may be masked as scientific expertise
• Physicians don’t understand they are not obligated to offer/recommend all interventions

Question 15

Chemotherapy at EOL

Answer 15

• Palliative considerations vs. curative intent
  .
• Elderly significantly underrepresented in clinical trials but fastest growing patient population
   Bone marrow reserve diminishes with aging
  .
• May be a sign of a lack of adequate/ongoing conversation between patient and physician
  .
• Can decrease the quality of remaining life or even shorten survival time
   Not thought to be hastening death, unlike terminal sedation
   Violates nonmaleficence – refrain from harming patients; ethical principal employed to argue against treatments likely to inflict pain & suffering and unlikely to result in benefit

Question 16

Ethical issues unique to long term care

Answer 16

Question 17

The phases and layer of care

Answer 17

Question 18

Morphine and Hastened Death

Answer 18

• Many inaccurately believe that morphine has an unacceptably high risk of causing death, particularly in frail elderly and near EOL – equate its use to heavy sedation and being left to die
• Double effect principle
• Safe when used with appropriate titrations and monitoring
   Drowsiness –> confusion –> loss of consciousness -> respiratory depression
• Meta-analysis of 30,000 post-op pts receiving opioids found incidence of respiratory depression (RR <10) of 1.1%

Question 19

Historically, what medication was utilized most often for MAID?
A. Secobarbital
B. Fentanyl
C. Midazolam
D. Potassium chloride

Answer 19

A

Question 20

Medical Aid in Dying (MAID)/Physician-assisted dying/Death with Dignity

Answer 20

“A practice in which the physician provides a terminally ill patient with a prescription for a life-ending dose of medication, upon the patient’s voluntary, informed request.”

Question 21

Euthanasia define

Answer 21

• The physician would act directly, for instance by giving a lethal injection, to end the patient’s life
• MAID is NOT Euthanasia

Question 22

Reasons patients seek MAID

Answer 22

• Data from Oregon
   loss of autonomy (93%)
   decreasing ability to participate in activities that made life enjoyable (94%)
   loss of dignity (72%)
  .
• “Poor pain control is an indication for better palliation, not death.”

Question 23

Patients who seek MAID

Answer 23

• 75% were 65 years or over, with the median age of 74
• 68% had cancer
• 90% were on hospice at the time of death
• 90% died at home
• 99% had some form of health insurance

Question 24

Elizabeth Whitefield End-of-Life Options Act (HB 47)
New Mexico’s End-of-Life Options Act provides for “medical aid-in-dying”. The law went into effect June 18, 2021… Qualified Individual?

Answer 24

The individual must be an ADULT at least 18 years old and a RESIDENT of NM.
.
The prescribing provider must determine that the individual has:
1. CAPACITY to understand and appreciate health care options available, including significant benefits and risks, and to make and communicate an informed decision.
2. TERMINAL ILLNESS which is a disease or condition that is incurable and irreversible and that, in accordance with reasonable medical judgement, will result in death within 6 months.
3. VOLUNTARILY makes the request for MAID and is not under duress or undue influence.
4. ABILITY TO SELF-ADMINISTER the MAID medication by taking an affirmative, conscious, voluntary action to ingest the medications. (Injection or IV administration are NOT allowed.)

Question 25

Healthcare Provider
.
Any of the following individuals licensed in New Mexico and authorized under NM law to prescribe a medication to be used in MAID:

Answer 25

1. Medical Physician
2. Osteopathic Physician
3. Advanced Practice Nurse
4. Physician Assistant
   .
   At least one physician (MD/DO) must determine, after conducting an appropriate examination, that the individual is qualified. That can be the ”prescribing” provider, a “consulting” provider OR affirmation the individual is enrolled in Hospice. If the individual is not enrolled in hospice, then two providers must affirm qualifications, one of which must be an MD/DO.

Question 26

Capacity

Answer 26

Question 27

Prescribing MAID

Answer 27

• Prior to prescribing, the provider must inform the individual of all available end-of-life care options, including palliative care and hospice.
• The prescribing provider must document all qualifications. The individual’s enrollment in hospice or, if necessary, affirmation of terminal illness by a consulting provider must also be included.
• The form required by law must be completed and signed by the individual requesting MAID and witnessed by two persons, one of which must be a disinterested party. The prescriber will provide the form and then include it in the individual’s health record.
• The prescription, once written, has a 48-hour hold before it can be filled UNLESS the prescriber affirms that, within reasonable medical judgement, the individual will not survive the waiting period.
• The prescribing provider will also be responsible for reporting required information to State.

Question 28

Medication Ingestion

Answer 28

Question 29

Aid-in-Dying Pharmacologic Regimen

Answer 29

Question 30

Pharmacist Role?

Answer 30

• ASHP Statement on Pharmacist Participation in Medical Aid in Dying
• Inclusion in the care team
• Medication dispensing and counseling

Question 31

Palliative Sedation

Answer 31

• “the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms”
• Should only be considered for refractory symptoms
• Level of sedation should be proportionate to the patient’s level of distress
• Treatment of other symptoms should be continued
• Should not be considered irreversible
• Decreased ability to interact with others, inability to change mind, inability to eat/drink
  .
• Refractory Symptoms
   Aggressive palliative treatments have failed or have produced intolerable side effects
   Additional treatments are unlikely to provide adequate relief without intolerable side effects
   Patient is likely to die before conventional treatment could work
  .
• PS most commonly used for pain, dyspnea, delirium, N/V, agitation/restlessness, seizure, myoclonus
• One survey revealed >50% of patients receiving PS have more than one qualifying symptom; 34% received for non-physical symptoms

Question 32

AAHPM Statement on Palliative
Sedation.. Primary objective…and must have

Answer 32

• Primary Objective:
   Ease suffering via pharmacologic and non pharmacologic techniques
  .
• Must have a:
   Specific clinical indication
   A target outcome
   Acceptable benefit/risk ratio
  .
• Level of sedation proportionate to level of patient’s distress
• When able, patients should participate in decision
• Continue other symptomatic treatments alongside sedation
• No guidance on medication selection – safe, effective, available

Question 33

AAHPM Statement on Palliative
Sedation
* Hastening Death

Answer 33

 Palliative sedation does not alter timing or mechanism of patient’s death as refractory symptoms are often associated with advanced terminal illness
 Clear intent to palliate, not shorten survival
 Artificial hydration/nutrition generally not expected to benefit the patient

Question 34

Palliative Sedation Medications

Answer 34

Question 35

If it’s not euthanasia, why are we still uneasy?

Answer 35

1.) Moral experiences
 Evolving terminology doesn’t remove all ethical concerns
 25% of families experienced high levels of distress over decision to use PS (Claessens et al, 2008)
 A survey of nurses in Flanders showed that 77% thought that continuous deep sedation (CDS) was partly or explicitly intended to hasten death (Inghelbrecht et al, 2011)
 Almost 50% of the medical specialists in Quebec surveyed in 2011 reported that palliative sedation can be likened to a form of euthanasia (Vogel L, 2011)
.
2.) Practice variation
 Intent (aim is symptom relief, not unconsciousness)
 Advanced knowledge of symptom management and palliative care
 Variance by provider and country
 Difficulty with prognostication (especially non-cancer)
 Need for improved communication, education, guidelines
 Loss of a holistic approach to human suffering?

Question 36

Existential Suffering

Answer 36

• No concise definition
• Lack of meaning or purpose, loss of connectedness to others, thoughts about the dying process, struggles
  around the state of being, difficulty in finding a sense of self, loss of hope, loss of autonomy, and loss of temporality
• Concerns about separating the physical symptoms from spiritual and psychological distress, moving away from a holistic perspective

Question 37

Use of Medical Cannabis ? and NM stance?

Answer 37

• Lack of efficacy from RCTs regarding efficacy and safety
   Unstandardized dosing, no FDA approval
   Lack of knowledge of risks/benefits
   Lack of data on long term effects
• Most commonly used route of administration is smoked
  (autonomy/harm to others?)
• Palliation of many symptoms experienced in terminal illness
• Variation in THC contents
  .
   NM pharmacists are supporting medical cannabis use.
   The majority of NM pharmacists feel less confident when discussing medical cannabis with patients.
   The majority of NM pharmacists feels their cannabis education was not enough.

Question 38

Psychedelics

Answer 38

Question 39

Psilocybin

Answer 39

Question 40

1. A 60 yo patient that you know well with refractory ovarian cancer (relapsed on standard and salvage chemotherapy regimens) has been approached by her physician to participate in a drug study of a new chemotherapy agent. The doctor has explained that this would be a risky study, but she is considering joining the study since she wants to keep living. At present, her only
   symptom is mild pain (~4/10) for which she takes an NSAID. What information might you share with her about phase I studies.

Answer 40

• discuss the goal of phase I studies to determine safety of dosing, not for efficacy; may involve travel outside of patient’s location, multiple blood draws, etc.
• identify the patient’s perception of the clinical trial and how that may or may not align with her goals
• engage the research team (if available) for further information to provide to patient and family

Question 41

2. You are involved in the care of a 65 yo female who is dying from pancreatic cancer, which has not responded to standard chemotherapy. She has significant depression despite a regimen including paroxetine and amitriptyline. She is receiving the following opioid regimen: MS Contin 100 mg PO Q8h and morphine liquid 25 mg PO Q1-2 prn. She is also receiving Senokot 2
   tabs BID and Miralax, 1 packet/day. She presents new monthly prescriptions for both the MS Contin and morphine liquid, which are consistent with use (i.e. not early refills). Since she knows you well, she asks you about what you think regarding aid-in-dying. She shares with you that she is actually interested in help with dying, because her life is no longer enjoyable and because
   the pain is becoming more intolerable despite her medications. She wonders if you might know the dose of morphine that would be required to allow her to exit the world or if there is another medication that she could take which would also allow her to accomplish her goal. She doesn’t want her oncologist or family to know. What would you recommend (she’s currently taking no
   other medications)?
   What would be your approach to this patient?

Answer 41

• inquire about the nature of the request (something she is considering now or in the future)
• clarify the cause of intractable suffering, is pain causing her not to be able to participate in enjoyable
  activities?
• explore emotional/situational factors
• does she have decisional capacity?
• discuss NM MAID laws and resources available (End-of-Life Options NM non-profit organization for
  further information)
• let her know if would be a good idea that you or the patient discuss this with her oncologist

Question 42

3. LK is a 49 yo male that was admitted last week with an extensive LLE DVT. Over the course of the week, his condition has slowly worsened. He is now intubated in the ICU, receiving antibiotics for endocarditis, and is requiring vasopressors and TPN. His wife is at the bedside. She is unable to discuss any decisions and is constantly crying. They had never discussed end of life care together. Their 4 children are all grown and live out of state. They are on their way back to see him, but have not yet arrived. LK and his wife are devout Catholics, attending mass weekly, and are very involved in their
   parish. Their children have all expressed that they are atheists. You are the pharmacist on the palliative care team that has been consulted to assist with the
   patient’s care. Other members of the team include the physician, chaplain and social worker. There are numerous physician specialists also involved in LK’s care. Several of the medical residents have expressed their opinions that all care should be continued because he is young and possibly could recover. All three specialists have expressed their opinion that no further care will be effective. They have signed off on his case and the pulmonologist is suggesting he be extubated with comfort care.
   -Medical Decision Making: who makes the decision?
   -Futility: when do we stop the current treatment?
   -Conflict of values: what does the patient, family, and healthcare provider value?

Answer 42

Medical Decision Making: who makes the decision?
- wife is the surrogate decision maker per NM law; children can support – family meeting would
be appropriate
.
Futility: when do we stop the current treatment?
- futility defined by specific intervention for specific patient; discuss with providers involved and
explore their concerns with family members during family meeting
.
Conflict of values: what does the patient, family, and healthcare provider value?
- again, explored during a family meeting and discussions with healthcare providers involved –
palliative care team can support providers and the family through ongoing communication/collaboration (skilled in having difficult conversations with patients/families)

Question 43

4. JB is 64 yo male with metastatic right renal cell carcinoma with extensive bone mets involving
   the thoracic spine and iliac crest. He is 6’4” and weighs 110 kg. His most recent appointment at Mayo clinic showed new mets to the right rib cage and both lungs. He is admitted to home hospice and pain is managed well for 2 months with the following regimen:
   Methadone 40mg PO BID
   Hydromorphone 8mg PO q4 hrs PRN pain
   Dexamethasone 4mg PO BID
   Pregabalin 50mg PO TID
   His wife calls the hospice on-call service one night after he has fallen in the bathroom and she is unable to assist him up. He is very confused and combative and is brought into the inpatient unit for more aggressive pain management and symptom control. No longer able to take oral medications, he is converted to an IV infusion of hydromorphone 10 mg hourly with 4 mg IV every 15min PRN. Over the next few days he continues to experience significant pain and restlessness despite continued titration of medications and the addition of lorazepam. His wife is distraught about his ongoing pain and perceived suffering and she asks what else can be done.
   They are new residents of NM and had heard about MAID when they lived in Oregon. She shares that he has stashed away narcotics at home and has even asked their son to bring them to him about a month ago but the family refused and has taken precautions to control his medications.
   Would he be a candidate for MAID based on the NM law?
   What other option may exist?

Answer 43

Would he be a candidate for MAID based on the NM law?
- No, does not have capacity for decision-making and unable to take oral medications
.
What other option may exist?
- palliative sedation
- if this is occurring in a state without MAID, identify if palliative sedation would be an appropriate next step to explore – are there institution-specific policies around palliative sedation, have all interventions been exhausted/intractable symptoms present, is the patient
imminently dying, how does the family feel about this potential option, etc.

Question 44

Historically, which of the following medications has been most commonly used for medical aid-in-dying?

Select one:
a. Secobarbital
b. Tramadol
c. Morphine
d. Diazepam

Answer 44

a. Secobarbital

Question 45

According to the ASHP Task Force Report on Pharmacist Participation in Medical Aid in Dying, what term can imply many aspects of dignity and was not chosen to describe aid in dying?

Select one:
a. Death with dignity
b. Palliative sedation
c. Assisted suicide
d. Hastened death

Answer 45

a. Death with dignity

Question 46

Terminal sedation is a practice that is legal in every state in the United States.

Select one:
True
False

Answer 46

True

Question 47

According to Varadarajan et al., which of the following is considered the most torturous form of aid in dying?

Select one:
a. Euthanasia
b. Voluntarily stopping eating and drinking
c. Physician-assisted suicide
d. Self-administered medication

Answer 47

b. Voluntarily stopping eating and drinking

Question 48

A patient with a designated full code status with metastatic pancreatic cancer and no further treatment options available is an example of which type of medical futility?

Select one:
a. Lethal condition
b. Physiological/quantitative
c. Qualitative
d. Imminent-demise

Answer 48

a. Lethal condition