Presenters:

Dr. Christine Jones

Dr. Gaylene Hargrove

Dawn Dompierre RN

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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:

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

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).

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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

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

What is MOST

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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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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

ACP

GOALS OF CARE

MOST

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Ihealth new platform sites: MRP places order through computerized order entry

All other sites (including community):paper form

MOST in Clinical Practice

C2- only designation with CPR

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MOST in Clinical Practice

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• 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

Practice MOST designations

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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

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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

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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ADVANCE CARE

PLANNING

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

8 out of every 10 Canadians have never heard of Advance Care Planning

only 9% had ever spoken to a healthcare provider about their wishes for care

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

• Belied that pt.'s and families do not

want these discussion

• Time constraints

• Postponing until pt. too ill to

participate fully in the discussions fully

• Concern it may destroy hope

Patient related

• Inadequate knowledge about ACP

• Perception that ACP is difficult to

facilitate and/or execute

• Perception that it will not be followed

• Belief that it is the physicians role to

initiate

• Reluctance to broach the issue of

death and EOL planning

• Unnecessary because family will

know what to do

ACP in Patients with end-stage-renal disease, S. Davison (2009)

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My Voice:

Page 8

P.30

P.28

1

2

3

http://www.youtube.com/watch?v=45b2QZxDd_o &feature=list_related&playnext=1&list=SP602EF6A965291D5E

Atul Gawande

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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

Person who makes medical decisions on your

behalf

They will give or refuse consent to treatment in

the event you are incapable

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Action:

Take a few minutes to think about 2 people that would act as your

Substitute decision maker

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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My

Voice:

Page 9

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P.34-43

P.44-49

P.50-51

Section 9 Agreement:

Must be fully capable

power to refuse life-sustaining 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

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REPRESENTATION AGREEMENT

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

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

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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 intra-abdominal 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

Social Hx:

o Married for 55 yrs; immigrated to Canada 1968

o Two daughters (live close by); two sons – one in Hong Kong, other in Edmonton

o Own chain of hotels – family-run business

o Linda and husband speak/understand no English

o Husband has DM2, HTN, CKD

o Daughters visit parents daily, attend all medical appointments, provide assistance with all health-related care

o 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?

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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.

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. 33

Prognostic Tools

http://www2.gov.bc.ca/assets/gov/health/forms/349fil.p

df

The Supportive and Palliative Care Indicators Tool is a guide to identifying people at risk of deteriorating health and dying.

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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.

Goals of Care discussion: o Daughters were substitute decision makers; state mother would

want ‘everything’ done – including defibrillation, mechanical ventilation, hemodialysis, feeding tube

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

Course in ICU:

o Remained ventilator-dependent, pressor-dependent post colectomy

o Developed ventilator-associated pneumonia

o Hemodialysis-dependent; became anuric

o Improved with optimal supportive care extubated, able to

participate in GOC discussion; wanted ongoing aggressive care

o Acutely declined septic shock, blood cultures grew Staph. aureus (6 weeks into ICU stay)

o 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

Seriously Ill

Prognosis:

1-2 Years

18+, Healthy

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

Prognosis:

Weeks to Months

End of Life

• Poor Prognosis

• Revisit Serious Illness

Conversation / Goals

of Care Discussion

• MOLST / POLST

Crises & Decline

• Condition worsening

• Revisit Serious Illness

Conversation

• Goals of Care

Discussion (If clinical

decision)

• Progression of Serious or

Chronic Illness(es)

• Have Serious Illness

Conversation

Diagnosis

of Serious

or Chronic

Illness(es)

• Identify Health Care

Proxy (HCP)

• Conversation about

care preferences

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.

Note: can be ordered from MONKS (RLXSP2034) Greensleeves have been ordered for acute care and residential care sites

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Communicate with the team, patient and

family

DOCUMENT!!!

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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

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:

- 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

The best time to begin ACP conversations is when the person is healthy

Engaging in ACP and & Goals of Care discussions is an interdisciplinary practice and the role of ALL HCP’s

Every capable adult has the right to accept, refuse or change their mind

Emergency contact/NOK may not be the person legally authorized to provide or refuse consent for health care

ACP documents provide direction or consent/refusal ONLY when the adult is NOT capable

A MOST provides direction for providers to follow in any Island Health setting and is honored by BC ambulance and contracted transportation service

The ACP Notes and Conversations flow sheet is a useful tool to record ACP and goals of care discussions

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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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