TAKING THE MYSTERY OUT OF MAID - JULIE CAMPBELL, NP WILLI KIRENKO, NP COPYRIGHT - DO NOT USE WITHOUT PERMISSION - THAMES VALLEY FAMILY HEALTH TEAM

Taking the Mystery Out of MAiD
              Julie Campbell, NP
               Willi Kirenko, NP
  (Copyright – do not use without permission

Faculty/Presenter Disclosure
• Presenter:
                 Julie Campbell and Willi Kirenko
                Medical Assistance in Dying (MAiD)

• Relationships with commercial interests:
   –   Grants/Research Support: N/A
   –   Speakers Bureau/Honoraria: N/A
   –   Consulting Fees: N/A
   –   Other: N/A

Disclosure of Commercial Support
• This program has received financial support from no organizations.

• This program has not received in-kind support from organizations.

• Potential for conflict(s) of interest:
• The speakers have received no payment/funding from any organizations
  supporting this program.

Presentation Objectives
• Understand & integrate ethical principles & legal/regulatory requirements in
  the care of patients requesting MAiD

• Evaluate how organizational policies influence the experience of patients
  requesting MAiD

• Access support for self & support for patients &families

• Identify challenges patients have experienced in their request for MAiD &
  explore ways to reduce barriers to access

• Discuss with patients options for care delivery including home based &
  organizational based MAiD

Canadian Attitudes 2014

The Legislation
• On June 17, 2016, the federal government
  passed Bill C-14 which outlined
  requirements that patients must meet to be
  eligible to receive MAiD, & establishes
  safeguards that must be followed to legally
  provide MAiD
• On May 10, 2017, Ontario's MAiD Statute
  Law Amendment Act, 2017, came into force
   – It provided greater clarity & legal protection
     for health care providers & for patients
     navigating MAiD
   – It also established a new role for the coroner
     in overseeing assisted deaths

Who is eligible for MAiD in Canada?
1.Eligible for publicly funded health services
 in Canada

2. At least 18 years of age and capable of
 making decisions with respect to their
 health

                                             7

Who is eligible for MAiD in Canada?
3. “Grievous and irremediable medical
 condition” = all of the following:
 • A serious and incurable illness, disease or disability
 • In an advanced state of irreversible decline in capability
 • The illness, disease or disability or that state of decline
   causes enduring physical or psychological suffering that is
   intolerable and cannot be relieved under conditions that
   they consider acceptable
 • Natural death has become reasonably foreseeable, taking
   into account all of their medical circumstances, without a
   prognosis necessarily having been made as to the specific
   length of time that they have remaining.

Who is eligible for MAiD in Canada?
4.Voluntary request, no external pressure

5. Informed consent, and counseling
 regarding other means available to
 relieve their suffering, including palliative
 care

‘Reasonably Foreseeable’
                  Natural Death
• CAMAP guideline:
  – Clinicians should be aware that Bill C-14 makes MAID an end-of-life option
    for individuals whose natural deaths are reasonably foreseeable.
  – As an aid to clarity, clinicians can consider interpreting “reasonably
    foreseeable” as meaning “reasonably predictable” from the patient’s
    combination of known medical conditions and potential sequelae, whilst
    taking other factors including age and frailty into account.
  – Clinicians should not employ or support rigid timeframes in their
    assessments of eligibility for MAID. Bill C-14 contains no requirement for a
    prognosis having been made as to the length of time the patient has
    remaining.

Conscientious Objection & Making an
        Effective Referral (Ontario)

              CPSO                                CNO
• Where physicians are              • An NP should consider their
  unwilling to provide … care         ability to provide these
  for reasons of conscience or        services early in the process
  religion, an effective referral     to support timely access to
  to another HCP must be              care
  provided to the patient           • NPs who do not personally
• An effective referral means a       provide medical assistance
  timely referral made in good        in dying must refer the
  faith to a non-objecting,           client who requests this to
  available, and accessible MD,       another NP or physician
  NP or agency                        who provides this service

MAiD is NOT Collaboration
• MAID is the only part of medicine that is not a
  collaborative decision between the NP &
  patient
• It’s not about what we think, it is solely a
  patient’s decision
• No longer having a meaningful quality of life
  is the primary motivation for wanting quality
  of death

Does Choosing MAiD Mean We’ve
       Failed in Some Way?
• No, it means the patient is experiencing
  suffering that cannot be relieved under
  conditions that they consider acceptable
• They get to decide when they’ve suffered
  enough

Meet Joe
•   Joe Gartune, age 87
•   Lives in a hospital palliative care unit
•   Widowed with two adult children
•   Diagnosed with prostate cancer (Gleason score 9) 8
    months ago
•   Depression following death of spouse in 2012
•   Metastases to liver and bone
•   Has lost 80 lbs since diagnosis
•   Total care
•   No delirium or confusion to date

Poll
How many people think Joe qualifies?
- YES/NO

Joe’s Pathway
    • Joe’s care provider Dr. X is a conscientious objector & Joe currently resides in a faith-
      based facility
    • Dr. X gives Joe’s son the number to refer Joe to the Provincial Care Coordination Service
1     1-866-286-4023

    • Information about Joe’s condition and providers is collected
    • NP at the CCS reviews Joe’s file and connects with a MAiD assessor and/or LHIN
    • LHIN ensures care plan for all other care is up to date and establishes plan if necessary
2     for supportive nursing agency care

    • MAiD assessor ensures Joe knows about & has completed Form A (Patient Request Form)
    • MAiD assessor completes Form B (provider) or Form C (assessor) & associated note
3

Joe’s Pathway
    • A second assessor gets involved (they were likely asked to be an assessor by
      the other assessor, the LHIN or the CCS)
4   • 2nd assessor completes the Form B or Form C and an associated note

    • Patient / provider select a date – discuss details of patients wishes
    • Orders sent by provider to LHIN for peripheral IV access x 2 and for
5     medications from pharmacy

    • Procedure Day (in this case discharge home) MAiD provider calls Provincial
      Coroners Office. Nurse Investigator calls back to talk to provider & family
    • Death certificate is completed and paperwork sent to Coroners office
6   • Nursing provides after care as is routine in EDITH

Legal Criteria
•   Grievous and Irremediable Medical Condition
     – Prostate cancer with mets, no longer a treatment candidate
•   Advanced stage of irreversible declining capability
     – Late stages of cancer, requires complete ADL support
•   Enduring physical and psychological suffering
     – Pain is controlled, rapid weight loss, fatigue and weakness along with loss of
        independence and dignity. This is not tolerable to the patient
•   Death has become reasonably foreseeable
     – Likely course would be death with ongoing wasting & cardiorespiratory arrest
•   Voluntary request
     – Request made without external pressure/coercion. Children are supportive
•   Informed Consent
      – Joe understands his illness is not curable, he understands the result of MAiD is his
         death. His depression was situational and managed & he exhibits no signs that he is
         currently influenced by depression. He has decided he wants to be in control of the
         end of his life and understands he must have capacity to do so. He is aware he can
         rescind his request at any time
•   Formal Request in writing
     – Joe has signed and completed the Form A on April 2, 2018. He is aware of the 10 day
        reflection period and that he can rescind his request at any time. He is aware of the
        role of the Coroner

Meet George
• George Clipper, age 96
• Lives in a Retirement Home x 8 years
• Requires assistance for all ADLs, two sons assist with care 10 hours per
  day plus assisting him to bed + PSW support
• Reports full body itch causing “excruciating pain” x 7 years. No Rx,
  home remedies or considerations for environmental causes have
  provided relief
• Last year he rode his scooter out on trails, now he has difficulty getting
  to the dining room for meals and mostly stays in his room
• Successful businessman x 50 years, “happy life, wonderful family”
• Euthymic and seated comfortably throughout assessment with easy
  humor and logical flow to conversation
• Meds: Pantoprazole 40mg od, Metoprolol 25mg BID, Apixaban 25mg
  BID, Terazosin 1mg hs, Hydroxyzine 10mg hs

Poll
How many people think George qualifies?
- YES/NO

George’s Pathway
    • George’s provider Dr. B isn’t confident that he meets the eligibility criteria so Dr. B
      calls the SW LHIN and speaks with the Care Coordinator who links Dr. B in with the
1     MAiD Navigator

    • LHIN ensures care plan for all other care is up to date and establishes plan if
      necessary for supportive nursing agency care
2

    • MAiD assessor ensures George knows about & has completed Form A (Patient
      Request Form)
3   • MAiD assessor completes Form B (provider) or Form C (assessor) & associated note

George’s Pathway
    • A second assessor gets involved
    • 2nd assessor completes the Form B or Form C and an associated note
4

    • Patient / provider select a date – discuss details of patients wishes
    • Orders sent by provider to LHIN for peripheral IV access x 2 and for
5     medications from pharmacy

    • Procedure Day MAiD provider calls Provincial Coroners Office. Nurse
      Investigator calls back to talk to provider & family
    • Death certificate is completed and paperwork sent to Coroners office
6   • Nursing provides after care as is routine in EDITH

Legal Criteria
• Grievous and Irremediable Medical Condition
    – Frail (Rockwood 8-9)
• Advanced stage of irreversible declining capability
    – Advancing decline with steep trajectory over past year, assistance with all
      ADLs
• Enduring physical and psychological suffering
    – Chronic intractable itch x 7 years that has not responded to any treatment
• Death has become reasonably foreseeable
    – Requires constant care
• Voluntary request
    – Request made without external pressure or coercion. Children have indicated
      their support
• Informed Consent
    – George understands the result of MAiD is his death. He understands he must
      have capacity to consent at time of procedure. He is aware he can rescind his
      request at any time
• Formal Request in writing
    – George has signed and completed the Form A. He is aware of the 10 day
      reflection period and that he can rescind his request at any time. He is aware
      of the role of the Coroner.

Meet Stacy
•   Stacy Lamage, Age 54
•   Lives with husband and 12 year old son
•   Dx: Multiple myeloma
•   Confirmed by abnormal labs, skeletal survey & bone
    marrow biopsy
•   With treatment prognosis is fair (median 3 years but
    some 10 years)
•   Treatable but not curable
•   Declines any treatment other than analgesics
•   Two ED admissions within 3 months for
    hypercalcemia crisis
•   Very private couple & not sharing plan with anyone
    (even medical care team)

Poll
How many people think Stacy qualifies?
- YES/NO

Stacy’s Pathway

    • Stacy self-refers to Provincial Care Coordination Service and does not give permission for anyone to
      contact her medical team because of fear of pressure to accept treatment
1

    • Limited information about Stacy’s condition and providers is collected
    • NP at the CCS reviews Joe’s file and connects with a MAiD assessor
    • Stacy declines any other involvement in her care.
2   • Clinical notes are found on Clinical Connect and at Stacy’s request through hospital medical records
      department

    • MAiD assessor ensures Stacy knows about & has completed Form A (Patient Request Form)
    • MAiD assessor completes Form B (provider) or Form C (assessor) & associated note
3

Stacy’s Pathway
    • A second assessor gets involved
    • 2nd assessor completes the Form B or Form C and an associated note
4

    • Patient / provider select a date – discuss details of patients wishes
    • Orders sent by provider to LHIN for peripheral IV access x 2 and for
5     medications from pharmacy

    • Procedure Day MAiD provider calls Provincial Coroners Office. Nurse
      Investigator calls back to talk to provider & family
6   • Death certificate is completed and paperwork sent to Coroners office

Legal Criteria
• Grievous and Irremediable Medical Condition
    – Life-limiting disease with bone pain, weakness, nausea, & hypercalcemia
• Advanced stage of irreversible declining capability
    – Advancing decline with steep trajectory over past few months with hypercalcemia
• Enduring physical and psychological suffering
    – Pain, weakness, nausea & hypercalcemia – NOT required to accept treatment
• Death has become reasonably foreseeable
    – At high risk for death due to hypercalcemia crises
• Voluntary request
    – Request made without external pressure or coercion. Husband assisting with
      support
• Informed Consent
    – Stacy understands the result of MAiD is her death. She understands she must have
      capacity to consent at time of procedure. She is aware she can rescind his request
      at any time
• Formal Request in writing
    – Stacy has signed and completed the Form A well in advance. She is aware of the
      10 day reflection period and that she can rescind his request at any time. She is
      aware of the role of the Coroner

What makes MAiD similar to any other
              death in the home?
MAiD at Home                                 “Natural” Death at Home
DNR- C and EDITH completed                   DNR C and EDITH completed
Care planning, coordination and provision by Care planning, coordination and provision by
H&CC                                         H&CC
Palliative care provided                     Palliative Care provided
Patient request form and 2 assessments by    None
independent, non-objecting providers
Ensure nursing support is provided by non-   Nursing support by any organization
objecting organizations
Patient selects time and date of death
MAiD procedure – usually 2x PIV,
medications accepted by nursing or brought
by provider, procedure completed,
medication picked up by pharmacy

After care & support provided                After care & support provided

Reducing Barriers

• Patients experience many barriers to their request for MAiD
   – Many hospices or faith based institutions require dying patients to be
     transported off-site for MAID assessment or provision
   – Delays in obtaining MAiD assessments are common if supporting
     medical information is not sent from MRPs.
   – Patients are often influenced by the views of providers
   – Organizational processes are sometimes barriers
   – Informal network of providers and assessors

Effect on Providers
• Dr. Marg McKee & Dr. Megan Sellick studied
  the impact on physicians who provided MAiD.
  – “profoundly positive, meaningful, even life-
    transforming for the providers”
  – Study identified administrative & institutional
    obstacles as the major sources of stress

Around the World

• From 2001 – 2013 assisted dying rates in
  Belgium have increased from 1 – 4% due to an
  increased number of patient requests and
  higher granting rates of physicians
• Belgium has no evidence to support a ‘slippery
  slope’ or that euthanasia is applied to
  ‘vulnerable’ groups

Connecting Patients
• Provincial Care Coordination Service
   – 1-866-286-4023
   – 24/7 365 days per year
   – Patient information, clinician support, links to regional
     resources

• South West LHIN
   – Coming soon….one number for clinicians – questions,
      advice, navigation, mentorship opportunities etc..
   - julie.campbell@lhins.on.ca

Thank You!
    Questions or Comments?
We would be pleased to connect any time:
    juliemaycampbell@gmail.com
          Willi@Kirenko.com