Joy, bureaucracy, Medical Assistance in Dying burnout · Medical Assistance in Dying 3 Who am I? 1....
14
Medical Assistance in Dying 1 Joy, bureaucracy, burnout Rural & Remote 2019 Halifax Ashley White MD CCFP MPH This Photo by Unknown Author is licensed under CC BY-SA-NC Medical Assistance in Dying 2 I have no conflicts to declare. I am speaking for myself, and myself only. This Photo by Unknown Author is licensed under CC BY
Transcript of Joy, bureaucracy, Medical Assistance in Dying burnout · Medical Assistance in Dying 3 Who am I? 1....
Med
ical
Ass
ista
nce
in D
ying
1
Joy, bureaucracy, burnoutR u r a l & R e m o t e 2 0 1 9 H a l i f a x
A s h l e y W h i t e M D C C F P M P H
This Photo by Unknown Author is licensed under CC BY-SA-NC
Med
ical
Ass
ista
nce
in D
ying
2
I have no conflicts to declare. I a m s p e a k i n g f o r m y s e l f , a n d m y s e l f o n l y .
This Photo by Unknown Author is licensed under CC BY
Med
ical
Ass
ista
nce
in D
ying
3
Who am I?1 . F i n i s h e d r e s i d e n c y i n
2 0 1 7 i n f a m i l y m e d i c i n e .
2 . P r a c t i c e i n f a m i l y m e d i c i n e , E R , h o s p i t a l i s t a n d m e d i c a l a e s t h e t i c s i n r u r a l O n t a r i o .
3 . I r u n o u r a r e a ’ s M A i Dp r a c t i c e o f f t h e c o r n e r o f m y d e s k , a p p rox i m a t e l y t wo c a s e s a m o n t h .
4 . I a m f ro m t h i s t ow n . I a m r e l a t e d t o a l o t o f p e o p l e .
Med
ical
Ass
ista
nce
in D
ying
4North – South: 100kmEast – West: 180 km
Med
ical
Ass
ista
nce
in D
ying
5
Who are you?
1.MAiD Providers?2 .MAiD Assessors?3 .MAiD Al l ied?4 .MAiD Curious?5 .Other?
This Photo by Unknown Author is licensed under CC BY-SA-NC
Med
ical
Ass
ista
nce
in D
ying
6
What do you want to learn today?
• We w i l l adap t to t h i s a s we go .
• Wri te you r anonymous que s t i on s down and we w i l l s pend t he l a s t 15 m inu te s an swer i n g t hem .
This Photo by Unknown Author is licensed under CC BY-NC-ND
Med
ical
Ass
ista
nce
in D
ying
7
Context Matters:
Urban MAiD (Mostly in Hospital) Rural MAiD (Mostly at Home)
This Photo by Unknown Author is licensed under CC BY-NC-ND This Photo by Unknown Author is licensed under CC BY-SA-NC
Ethicist
System Navigator
SLP
Social Work
MRP
2nd Assessor
Pharmacist
Provider
This Photo by Unknown Author is licensed under CC BY SA NC
Provider
2nd Assessor
GP
Social Work
System Navigator
Ethicist
Pharmacist
SLP
You home care team may have these people but they will not likely be skilled in MAiD enough to take the lead on many crucial issues.
Until you build it.
Med
ical
Ass
ista
nce
in D
ying
8
Objectives1 . E n c o u r a g e yo u t o s h a r e i n t h i s
w o n d e r f u l w o r k .
2 . S h a r e 3 r u r a l M A i D c a s e s .
3 . S h a r e s o m e o f t h e p e r s o n a l b e n e f i t s a n d c o s t s o f p ro v i d i n g m e d i c a l a s s i s t a n c e i n d y i n g .
4 . P ro v i d e s o m e u s e f u l a d v i c e t o r u r a l p ro v i d e r s i n t e r e s t e d i n i n c o r p o r a t i n g M A i D i n t o t h e i r p r a c t i c e .
5 . N e w :
6 . N e w :
Med
ical
Ass
ista
nce
in D
ying
9
JoanM y f i r s t c a s e .
77
Wife and step-mother. Gardener. Retired. Snow bird.
Carcinomatosis with unknown primary. PPS 30.
I was the MRP. She asked for MAiD. I told her I would figure it
out. I had never been involved in a case before.
I read our hospital policy, the CEP tool, I spoke with the CMPA.
I didn’t take the course.
I kept asking her if she was ready, kept triple and quadruple
checking myself. She was amused by this.
This Photo by Unknown Author is licensed under CC BY-NC-ND
Med
ical
Ass
ista
nce
in D
ying
10
JoanM y f i r s t c a s e .
What I learned:
1. Patients Know: Patients have symptom improvement and an
unearthly calm when they know there is a date. It is immensely
reassuring to all involved.
2. Know Their Story: Knowing her life course, about her childhood,
her work story, her relationship allowed me confidence in her
capacity, and in my own theory of her case.
3. This is within our scope.
This Photo by Unknown Author is licensed under CC BY-NC-ND
Med
ical
Ass
ista
nce
in D
ying
11
JoanM y f i r s t c a s e .
Issues:
1. Ontario Quirk: Patients must be informed of their eligibility
(that they have a grievous and irremediable medical
condition fulfilling 4 criteria) prior to signing their written
request for MAiD. Timelimes are everything.
2. Check your Witnesses: Witnesses were not independent.
3. Result: Her Reflection Period had to restart three times
before her final date was confirmed. This has major
emotional consequences for family, in particular.
This Photo by Unknown Author is licensed under CC BY-NC-ND
Med
ical
Ass
ista
nce
in D
ying
12
HansU l t i m a t e l y , i n e l i g i b l e .
89
Neuropharmacologist. Still publishing manuscripts.
Father to a physician. Husband to a clinical researcher.
Idiopathic Parkinson’s Disease.
Major point of suffering: Abdominal pain. Not motor or
cognitive symptoms, which were mild.
Followed by neurology and GI. Appropriately worked up.
Med
ical
Ass
ista
nce
in D
ying
13
HansU l t i m a t e l y , i n e l i g i b l e .
DUE TO THE ILLNESS
Eligibility hinged on: Was the abdominal pain due to GI dysmotility secondary to Parkinsonism?
Yes: EligibleNo: Ineligible
Med
ical
Ass
ista
nce
in D
ying
14
HansU l t i m a t e l y , i n e l i g i b l e .
This question was posed to his neurologist and his
gastroenterologist.
Neither gave me clear responses.
I spoke at length to the CMPA counsel. Many times.
I declared him ineligible. He was heart broken. I said I
would return in a few months. I assessed again. Still
ineligible. I encouraged him to reach out for second
assessments and opinions.
Med
ical
Ass
ista
nce
in D
ying
15
HansU l t i m a t e l y , i n e l i g i b l e .
While away doing extra training, I received an email
stating that he was going to end his life by drowning
himself in the lake. His wife was not there.
I called 911. His wife and son were grateful. He was
furious.
I reassessed him a third time. Still ineligible. Asked for
opinions again from neurology and GI. “Maybe”.
Hans went on a hunger strike and died a few weeks later.
Med
ical
Ass
ista
nce
in D
ying
16
HansU l t i m a t e l y , i n e l i g i b l e .
What I learned:
1. Eligibility has nuance: Suffering must be attributed to the
disease.
2. Patients don’t always appreciate the stakes you face: Making
a decision about eligibility must be taken very seriously.
3. Ineligibility is always harder than eligibility: Patients know
when they’re ready to go.
g
Med
ical
Ass
ista
nce
in D
ying
17
Would/Should I keep doing this work?
Then I got my next referral.
Med
ical
Ass
ista
nce
in D
ying
18
Darlene & ToddO n t a r i o ’ s f i r s t c o u p l e .
86 + 87
Parents to five. Grandparents to many.
Entrepreneurs.
Renal Cell Carcinoma + CHF with Class 4
symptoms.
They wanted to die together at home.
Med
ical
Ass
ista
nce
in D
ying
19
Darlene & ToddO n t a r i o ’ s f i r s t c o u p l e .
Issues:
1. Can requests for simultaneous MAiD
ever be considered truly voluntary?
2. How do I provide to two people at
once when there isn’t another provider
in the area?
Med
ical
Ass
ista
nce
in D
ying
20
Darlene & ToddO n t a r i o ’ s f i r s t c o u p l e .
What I learned:
1. Ask the Lawyers: The CMPA will not tell you what to do. They will discuss
precedent and the law. You have to make the decision.
2. Assess them as separately as possible: I was able to talk through their own
individual decision making. If not together, they would go alone.
3. Meet them. Again. Then Again: In cases where I am not sure, I make many trips. I
will become sure soon enough.
4. Explore your Team: Todd’s GP eventually decided to provide alongside me. He
hasn’t been involved in subsequent cases.
5. Living funerals are the best: The family had a huge party the night before. The
children and the patients were so content and prepared. They had a beautiful
goodbye.
Med
ical
Ass
ista
nce
in D
ying
21
I should keep doing this work.
This Photo by Unknown Author is licensed under CC BY-NC-ND
Med
ical
Ass
ista
nce
in D
ying
22
Then I called the Coroner….
This Photo by Unknown Author is licensed under CC BY-NC
And she said “Oh no!”“We’ve never had this before!”
“Are you sure you did it right?”
Med
ical
Ass
ista
nce
in D
ying
23
Med
ical
Ass
ista
nce
in D
ying
24
Referral
Nurse Screening
Gather Documentation
First Assessment
Second Assessment
Planning for Death
Pharmacy Communication
Check In
Provision
LHINColleagueDirectNeighbouring Town
Increasingly Knowledgeable TeamNew MAiD Clinic
GPAsk MAiD COP
HospiceHospitalHomeIO
Wildly variable.
You may need additional input and comments from allied health and specialists.
Organized systems help you get from Referral to Provision. It gets easier every single time.
Med
ical
Ass
ista
nce
in D
ying
25
Personal Benefits and CostsCosts
• Shuffling schedules to accommodate urgent provisions. Costs to my family practice patients.
• Opportunity cost ($) because MAiD does not pay. Especially when I travel distances.
• The cost of the dissonance inside created when you provide death. Usually, this dissonance is small.
• Lack of formalized debriefing (except in hospital, where we always debrief).
• The pain of ineligibility.
• Solo. Only one of my FHT colleagues will provide a second assessment.
• “Dr. Death” + Contradictions of my Work
• Exposure to ? Protest.
Benefits
• The joy of a good death.
• Allowing patients their dignity.
• Giving patients certainty.
• Becoming intimate with a patient’s real life story, not just their HPI.
• Watching the weight lift from caregivers’ shoulders.
• The challenge of thoughtful, pensive, nearly legal, work.
• Improved relationships with hospice.
• Precedent setting for tiny hospitals in our hospital corporation.
• Providing my colleagues & their patients this legally enshrined right/resource.
Burnout Antidote.
Med
ical
Ass
ista
nce
in D
ying
26
WHAT WOULD YOU LIKE TO KNOW?
This Photo by Unknown Author is licensed under CC BY-SA-NC
