Presenters:
Dr. Christine Jones
Dr. Gaylene Hargrove
 Dompierre
 RN
Dawn
EASING THE BURDEN OF DECISION-MAKING:
MAKING THE MOST OUT OF CONVERSATION Presentation
Relationships with commercial interests:
• Speakers Honoraria: Amgen
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By the end of this session participants will be
able to:
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Understand the basic concepts of MOST, Advance Care
Planning (ACP) and Goals of Care
Practice MOST designations with brief clinical scenarios
Identify the unique challenges of ACP in the renal
population
Access tools and resources to support conversations
Explore practice implications through a case study
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Pt’s with chronic kidney disease are unique…..
o
In table groups talk about what you find challenging and unique in
engaging in ACP & goals of care conversations with renal clients.
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CKD patients (pre-dialysis): 56 deaths
HD patients – 31 deaths
PD patients – 7 deaths
The mean survival would appear to be approximately 4.5 yrs.
after one starts dialysis (if you are over 65 years of age).
In 2010
Dialysis Mortality Rate: 18% Total Dialysis (HD & PD) =81
Mortality rates for pt.'s with ESRD are worse than for most
cancers with an overall median survival of less than 6
years, although this does vary with age.
End of Life Care in Nephrology 2007
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What is MOST
MOST is a physician’s order that has
six designations that provide
direction on code status, critical
care interventions, and medical
interventions.
• MOST is a medical order that is valid across all care settings and
is honored by the BC ambulance service.
• MOST replaces No CPR orders (March 19)
• The MOST policy aligns with the existing:
• 9.1.2 P Adult Cardiopulmonary Resuscitation (CPR) Policy.
• 10.3.9 Cardiopulmonary Resuscitation for Residential Services
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• Agreement between patients' expressed
preferences for care and documentation
in the medical record was 30.2%
Failure to Engage Hospitalized Elderly Patients and Their Families in Advance
Care Planning JAMA Intern Med. 2013;173(9):778-787.
doi:10.1001/jamainternmed.2013.180
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How does MOST link to ACP & Goals of Care?
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ACP
GOALS
OF CARE
MOST
Conversations about:
• Written expression of wishes
• Advance Directives
• Representation Agreements
The adult engages in ACP conversations with
loved ones and health care providers
Conversations about:
• Clarification or review of ACP
• Diagnosis, prognosis, risks, and benefits of
treatment.
• Medically appropriate options for health care
that aligns with the adult’s goals of care.
Conversations about:
• Between the adult, Most Responsible
Provider and other health care providers
about the kinds of health care to provide in
certain circumstances.
The Most Responsible Physician completes a
MOST
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MOST in Clinical Practice
 Ihealth new platform sites:
MRP places order through
computerized order entry
 All other sites (including
community):paper form
C2- only designation with CPR
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MOST in Clinical Practice
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Practice MOST designations
• 53y.o CRF, on dialysis does not
want CPR or intubation
• 83 y.o frail being followed in
KCC- conservative care
• 19 y.o awaiting transplant
• 75 y.o chronic COPD & renal
failure
• 84 y.o frail & moderate
dementia living in residential
care
• 79 y.o CHF, does not want CPR
or to go to ICU
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Advance Care Planning: is a capable adult's
planning for how consent to health care will
be given/refused after he/she loses
capability
Is a way for you to think, talk and plan together with
your family, friends and healthcare providers about
values, hopes and fears for your current and future
health care in advance of a time you are incapable of
deciding for yourself
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ADVANCE CARE
PLANNING
Conversations (Serious Illness Conversations)
Expression of wishes/Living Will(U.S term)
Substitute Decision Maker (ex. Representative,
TSDM)
 Advance Directive
Note:
POA: Finances in BC
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Some adults are very clear about a treatment
they want or do not want
Decreases panic and uncertainty in a crisis
Decreases moral distress for client, families and
HCP
Can provide a peaceful end of life experience for
the patient, family, and staff.
Individuals wishes are honored and have fewer
life-sustaining procedures and lower rates of
intensive care unit admissions
Protects the autonomy of client decisions
Promotes client/family-centered care
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8 out of every 10 Canadians have never heard of
Advance Care Planning
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only 9% had ever spoken to a healthcare provider
about their wishes for care
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over 80% of Canadians do not have a written plan

only 46% have designated a substitute decision
maker – someone to speak on their behalf if they
could not communicate
March 2012 Ipsos-Reid national poll
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Barriers to ACP Conversations
Physician related
• Lack of training and comfort with EOL
decision making
• Belief that ACP discussion are not
needed
Patient related
•
Inadequate knowledge about ACP
• Perception that ACP is difficult to
facilitate and/or execute
• Perception that it will not be followed
• Belied that pt.'s and families do not
want these discussion
• Belief that it is the physicians role to
initiate
• Time constraints
• Reluctance to broach the issue of
death and EOL planning
• Postponing until pt. too ill to
participate fully in the discussions fully
• Concern it may destroy hope
• Unnecessary because family will
know what to do
ACP in Patients with end-stage-renal disease, S. Davison (2009)
My Voice:
Page 8
1
2
3
P.30
P.28
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Atul Gawande
http://www.youtube.com/watch
?v=45b2QZxDd_o
&feature=list_related&playnext=
1&list=SP602EF6A965291D5E
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It is important to go into an ACP
conversation without preconceived
assumptions or predictions about
what people will or should feel or
believe.
Don’t assume how other people
are feeling. Let them Tell you.
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● Ideally:
Healthy Capable Adults to create awareness,
normalize Advance Care Planning
● More Imperative With:
Capable Adults with Chronic Diseases before they
become acutely ill
● Absolutely:
Capable Adults with Life Expectancy Less Than 12
months
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What do I value in terms of my emotional, mental and
physical health?
What would make prolonging life unacceptable for me?
When I think about death I worry about certain things
happening
What brings me comfort?
Do I have any spiritual or religious beliefs that would affect
my care at the end of life?
Action:
My wishes for care at the end of life work sheet
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 Person
who makes medical decisions on your
behalf
 They will give or refuse consent to treatment in
the event you are incapable
Action:
Take a few minutes to think about 2 people that would act as your
Substitute decision maker
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My
Voice:
Page 9
spouse (incld. common-law & same sex)
adult child
parent
brother or sister
Grandparent
Grandchild
another relative by birth or adoption
close friend
person immediately related by marriage
another person appointed by Office of the Public
Guardian and Trustee
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P.34-43
P.44-49
P.50-51
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REPRESENTATION AGREEMENT
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An adult while capable appoints someone to make health and personal care decisions on
their behalf in the event they are unable to speak for themselves
Section 9 Agreement:
Must be fully capable
power to refuse lifesustaining treatment
may include decisions
about admission to
residential care
does NOT allow Rep to
make financial or legal
decisions
Section 7 agreement:
intended for persons with
less than full capability
o (e.g., clients with
developmental disabilities).
for routine health and
financial decisions
does not allow the Rep to
refuse life support or life
prolonging medical
interventions
A
capable adult can create an Advance Directive
 Advance Directive is a document that gives/ refuses
consent to specific treatments in advance
 Legally binding document for health care providers,
document is used as the source of consent without an
intermediary
 Legal and medical advice is recommended before
completing
2
8
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A copy:
On your fridge (Paramedics may only check
for it there)
Copy to family doctor
Copy for your Representative, friend(s) or
family member(s)
Copy with other health care providers
involved in your care
Copy to your lawyer/notary (if appropriate)
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Patient Profile “Linda”
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75 y/o Chinese woman admitted to ICU with intraabdominal sepsis, multi-organ failure
PMHx:
ESRD (diabetic nephropathy), on peritoneal dialysis
for two yrs.; daughters perform PD for her
Type 2 DM – daughters manage all care
Hypertension
OSA – on CPAP
Obesity
Progressive cognitive impairment (?vascular
dementia); Hx of prior stroke
Frequent falls/poor mobility
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Social Hx:
o Married for 55 yrs; immigrated to Canada 1968
o Two daughters (live close by); two sons – one in Hong Kong,
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other in Edmonton
Own chain of hotels – family-run business
Linda and husband speak/understand no English
Husband has DM2, HTN, CKD
Daughters visit parents daily, attend all medical appointments,
provide assistance with all health-related care
Family loves to travel; usually go on 2-3 ‘extended cruises’ each
year (Linda able to do PD on cruise ship)
When should ACP be introduced? And How?
Well
Unwell
Time
Frailty and dementia (prolonged dwindling) Joanne Lynn, “Living Long
in Fragile Health: The New Demographics Shape End of Life Care”
Improving End of Life Care: Why Has It Been So Difficult? Hastings
Center Special Report 35, no. 6 (2005): S14-S18.
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Prognostic Tools
Surprise Question
“Would you be surprised if this patient died in the next 12 months?”
• Validated in clinical studies:
• If physicians answered “NO”, patient 3.5 times more likely to
have died in 1 yr. compared to “YES” pt.
Moss, CJASN 2008
Frailty Scale
•
Is a 7-point tool that provides a practical approach to assessing
frailty using physical and functional indicators of health and
illness burden
• Proactively identifies those who could benefit from interventions.
A global clinical measure of fitness and frailty in elderly people.
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Prognostic Tools
The Supportive and Palliative Care Indicators Tool is a guide to
identifying people at risk of deteriorating health and dying.
http://www2.gov.bc.ca/assets/gov/health/forms/349fil.p
df​
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HPI:
o Shoulder surgery 10 days ago; received peri-operative cefazolin
o 3 days post discharge, developed severe watery diarrhea,
presented to ER with progressive abdominal pain
o Dx: ?peritonitis, ?C.diff. colitis; started on empiric antibx
o Developed progressive hypotension, fever, abdominal distention,
Dx: toxic megacolon
o Transferred from rural hospital to RJH ICU, underwent emergent
colectomy, removal of PD catheter.
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Goals of Care discussion:
o Daughters were substitute decision makers; state mother would
want ‘everything’ done – including defibrillation, mechanical
ventilation, hemodialysis, feeding tube
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Previous Goals of Care discussion (2 yrs. ago):
o Patient indicated she wanted full resuscitation (daughters served
as translators)
o SW attempted to have subsequent discussions, but family
unwilling to engage
o Care providers uncertain how much patient understood re:
diagnosis, prognosis
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Course in ICU:
o Remained ventilator-dependent, pressor-dependent post
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colectomy
Developed ventilator-associated pneumonia
Hemodialysis-dependent; became anuric
Improved with optimal supportive care  extubated, able to
participate in GOC discussion; wanted ongoing aggressive care
Acutely declined  septic shock, blood cultures grew Staph.
aureus (6 weeks into ICU stay)
Daily family meetings re: GOC; discordant views, two sons travel
from afar; daughters accepting of palliative approach, but not
sons
Care seriously ill receive often may harm
them and their families
Aggressive care for patients with advanced illness is
often harmful:
• For patients:
- Lower quality of life
- Greater physical and psychological distress
Wright, AA JAMA 2008; Mack JCO 2010
• For caregivers:
- More major depression
- Lower satisfaction
Wright, AA JAMA 2008; Teno JM JAMA 2004
Advance Care Planning Terminology
Prognosis:
1-2 Years
18+, Healthy
• Identify Health Care
Proxy (HCP)
• Conversation about
care preferences
Seriously Ill
Diagnosis
of Serious
or Chronic
Illness(es)
• Progression of Serious or
Chronic Illness(es)
• Have Serious Illness
Conversation
Prognosis:
Weeks to Months
Crises & Decline
• Condition worsening
• Revisit Serious Illness
Conversation
• Goals of Care
Discussion (If clinical
decision)
End of Life
• Poor Prognosis
• Revisit Serious Illness
Conversation / Goals
of Care Discussion
• MOLST / POLST
Advance Care Planning = Planning in Advance of Serious Illness
Serious Illness Care Conversation = Planning in the context of
progression of serious illness
Goals of Care Discussion = Decision making in context of clinical
progression / crisis / poor prognosis
Where will MOST & ACP documents be stored?
Greensleeve is a green plastic page protector
that is placed at the front of the health record
to identify resuscitation status, scope of
treatment and store ACP documents.
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Note: can be ordered from MONKS (RLXSP2034)
Greensleeves have been ordered for acute care and residential care sites
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 Communicate
family
 DOCUMENT!!!
with the team, patient and
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ICU staff and nephrologist advised:
o No re-intubation
o Consider withdrawal from hemodialysis if further deterioration
o Daughters agree to ‘DNR’ order
o Patient died two days later
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Home Dialysis Clinic staff, nephrologist contacted
daughters one week later
o Severe grief reaction, blamed themselves for ‘not doing enough
to save mom’
 Points to Ponder:
o How could care providers have more effectively
discussed Goals of Care designation two years ago?
o How do we approach the challenge of cultural beliefs
and practices in our discussions?
(the belief that it is disrespectful to disclose a negative
diagnosis/prognosis to a parent/elder)
o How/when do we effectively communicate how changes in
disease trajectory impact quality of life?
Early conversations about goals of care
benefit patients and families
Early conversations about patient goals and priorities in serious
illness are associated with:
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Enhanced goal-concordant care
Time to make informed decisions and fulfill personal goals
Improved quality of life
Higher patient satisfaction
More and earlier hospice care
Fewer hospitalizations
Better patient and family coping
Eased burden of decision-making for families
Improved bereavement outcomes
Mack JCO 2010; Wright JAMA 2008; Chiarchiaro AATS 2015; Detering BMJ 2010; Zhang Annals 2009
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The best time to begin ACP conversations is when the
person is healthy
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Engaging in ACP and & Goals of Care discussions is an
interdisciplinary practice and the role of ALL HCP’s
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Every capable adult has the right to accept, refuse or
change their mind
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Emergency contact/NOK may not be the person legally
authorized to provide or refuse consent for health care
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ACP documents provide direction or
consent/refusal ONLY when the adult is NOT
capable
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A MOST provides direction for providers to follow in
any Island Health setting and is honored by BC
ambulance and contracted transportation service
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The ACP Notes and Conversations flow sheet is a
useful tool to record ACP and goals of care
discussions
Island Health Intra and Internet
BC Seniors: http://www.seniorsbc.ca/legal/healthdecisions/
Speak UP Campaign: http://www.advancecareplanning.ca/
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Failure to Engage Hospitalized Elderly Patients and Their
Families in Advance Care Planning. JAMA Intern Med/Vol 173 (No
9), May 12, 2013
Advance care planning in patients with end stage renal disease
by Sara Davison. Progress in Palliative Care 2009 Vol 17 (No 4)
Integrating Palliative Care for Patients with Advanced Chronic
Kidney Disease: Recent advances, remaining challenges by Sara
Davison. Journal of Palliative Care 27:1 / 2011
Facilitating Advance Care Planning for patients with End-Stage
Renal Disease: the Patient Perspective by Sara Davison.
American Society of Nephrology, 2006
End-of-Life Preferences and Needs: Perceptions of Patients with
Chronic Kidney Disease by Sara Davison. American Society of
Nephrology, 2009
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The Near Failure of Advanced Directives: why they should not be
abandoned altogether by Spranzi & Fournier (2016) in Med Health Care
and Philos
What really matters in end-of-life discussions? Perspectives of patients
in hospital with serious illness and their families. CMAJ Nov 3, 2014.
Thoughts on death and dying when living with haemodialysis
approaching end of life. Journal of Clinical Nursing, 21, 2149-2159
What to discuss near life’s end. Mc Master Network. Spring 2015.
A global clinical measure of fitness and frailty in elderly people.
Rockwood K1, Song X, MacKnight C, Bergman H, Hogan DB, McDowell
I, Mitnitski. CMAJ. 2005 Aug 30;173(5):489-95.
Medical orders for life-sustaining treatment: Is it time yet? Palliative and
supportive Care (2014), 12, 101-105.
It’s Okay to Die by Monica Williams-Murphy MD (2011) – includes
Fierro’s Four R’s (a tool for surrogate medical decision-making)
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 Resource
Videos for Healthcare Providers
Serious Illness Conversation Guide Demonstration (12 min):
https://www.youtube.com/watch?v=fhwa9f5O_U4
How to talk End of Life Care with a Dying Patient: Dr Atul Gawande (3:01
min):
https://www.youtube.com/watch?v=45b2QZxDd_o
An Expert Conversation using Serious Illness Conversation Guide (20:04
min):
https://www.youtube.com/watch?v=xLl1HlCcNYM
What not to do while using Serious illness Conversation Guide (4:53 min):
https://www.youtube.com/watch?v=8TSniMxCU58
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It’s never too early to start conversations but it
can be too late.
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