End-of-Life Decision-Making and the Role of the Nephrology Nurse Module 1 Techniques to facilitate discussion for Advanced Care Planning (ACP)

End-of-Life Decision-Making and the Role of the Nephrology Nurse

Module 1Techniques to facilitate discussion for Advanced Care Planning (ACP)

The objectives of Module Iare to…

Identify ESRD patients at risk to die in the next 6-12 months.

List 4 core skills for initiating advance care planning discussions.

Provide 5 examples of how to implement advanced care planning skills.

Introduction

80% of Americans have a chronic illness Most will spend years managing illness In the final months of life, there will be

disability, poor QOL & hospitalizations Most will die suddenly, unprepared 50% will be unable to make their own

decisions Most are willing to discuss and plan

Identify patients at risk to die in next 6-12 months

ESRD End-of-Life Demographics Significantly shortened life span Rising median age of ESRD population Over 65,000 ESRD patients die per year ~20% die after decision to withdraw High percentage with co morbidities High in-hospital death Unknown but low % die with hospice

Expected Remaining Years of Life For Dialysis Populations

Age Black Male

Black Femal

e

White Male

White Femal

e20-24 16.9 14.7 14.2 13.130-34 12.6 11.2 9.8 9.240-44 9.4 8.6 7.2 6.950-54 6.9 6.4 5.3 5.160-64 4.8 4.8 3.8 3.870-74 3.4 3.4 2.7 2.785+ 1.9 1.9 1.6 1.6

USRDS Annual Report 2002

Sentinel Events & Conditions that predict prognosis of dialysis patients

Serum Albumin < 3.5 gm/dl1 year survival= 50%2 year survival= 17%

(Goldwater, 1993)

Cumulative Survival following first amputation after renal failure:

1996-2001Level N 30

day60 day

90 day

180 day

365 day

730 day

Total 49,708 88.5 79.7 73.8 62.4 49.0 33.7

Toe 15,776 95.2 89.6 84.9 74.7 61.4 44.6

Below Knee

23,952 89.3 80.5 74.7 63.3 49.5 33.7

Above Knee

9,980 76.4 62.2 54.2 40.6 28.2 16.4

Eggers, NIH 2004

All Cause Mortality (%) After AMI by Etiology of ESRD: 1996-2001*

Etiology

N 1 yr 2 yr 3 yr 4 yr 5 yr

Total 31,785

52.1 66.9 76.9 83.3 87.6

DM 15,460

53.0 68.8 79.4 86 90.5

HTN 9,112

53.9 68.8 78.6 84.5 88.7

Other 7,213

47.8 60.9 69.5 76.3 80.5

* Dialysis Patients only Eggers, NIH, 2004

ESRD Cardiac Arrest: CPR survival

Died 92%

8%

Lived to discharge

Late Referral to Nephrologist

More Hispanics, Blacks Lower Serum Albumin Lower HCT Greater number malnourished S CR GFR More catheters

Stack AJKD 2/03

Relative Risk of Death Late Referral patients

At 6 months 1.65 (65% higher risk)

At 12 months 1.57 (57% higher risk)

At 2 years 1.22 (22% higher risk)

(CI 95%)Stack AJKD 2/03

Ask the Nephrologist

“Would you be surprised if this patient dies in the next 6-12 months ?”

Emotional Symptoms of Readiness

Anger Hopelessness

Spiritual distress

Anxiety Fear Dependency

Financial distress

Depression Why me?

Signs That a Patient May be “Ready”

Giving belongings away Increased hospital stays, medical

decline Withdrawing from personal attachments Decreased interest in eating Increased sleep/fatigue They tell you You just sense it by their overall look

Examples of Verbal Cues

“I don’t want to be a burden” “I don’t know if all of this is worth

it to me anymore” “I’ve had enough” “What happens if you stop

dialysis?”

Core Skills

The nephrology nurse has multiple opportunities to initiate discussion and provide guidance with decision-making over time

Collaborative team incorporates ACP into the overall care plan

Advanced Care PlanningAdvanced Care Planning ACP

and

Advance DirectivesAdvance Directives

are NOT the same thing

AD

Advanced Care Planning is NOT a “one-size fits all”

concept

Advanced Care planning IS a process for:

Understanding, Reflecting, Discussing &Formulating a plan with the patient

Guiding Principles

Seek first to understand; let patient tell his/her story

Be there; offer opportunities many times

Focus on talking and learning; not making decisions

Encourage patient to reflect Listen, explore, and listen more

Core ACP Skills

Initiate routine and urgent discussions

Explore understanding of renal disease progression

Search out values of living well

Clarify statements

Discover meaning of experiences

Core of ACP Skills, continued

Assist in understanding ACP

Explore barriers to planning

Assist in selection and preparation of proxy

Advocate for & communicate patient wishes

Make referrals

Initiate Routine Discussion It’s never too early to plant a seed Begin discussion prior to dialysis,

and at regular intervals e.g. care conferences

Provide basic information first, then add more discussion over time

Incorporate as a component of good patient care (“We’re trying to begin these talks with all of our patients”)

Initiate Urgent discussions Person you would not be surprised

died in the next 12 months, e.g. sentinel event, low serum albumin

Frequent hospitalizations Declining functional status Verbal cues e.g. “I’m not sure all of

this is worth it to me anymore”

Where to begin?

Walk the path with patients

Explore understanding of illness progression

“Describe for me what you think your kidney disease is doing to you.”

“Do you have ideas of what complications could happen to you?”

“Are you interested in knowing more about your illness and what might happen?”

Explore values/goals on living well

“What future or present experiences are important for you to live well?”

“What fears or worries do you have about your illness?”

“What helps you get through when you face serious challenges in your life?”

RESPECTING CHOICES® Advance Care Planning

Clarify statements e.g….

The nurse says “What do you mean when you say…” “I don’t want to be a burden” “I don’t know if all of this is worth it to

me anymore” “I’ve had enough” “What happens if you stop dialysis?”

Explore experiences… with last

hospitalization/complication “The last time you were

hospitalized (or some incident) what was it like for you?”

“Did it change any of your goals or values for the way you are living your life?”

Explore understanding of ACP

“Have you ever written down any of your thoughts about future medical care?” “Tell me what you’ve done?” “Why or why not?”

“Are you willing to begin to learn a little more about what this involves?”

Explore patient barriers to discussion

“Why is this a difficult topic for you to talk about?”

“What are your fears or concerns if you talk about it?”

“Are there any religious, cultural or personal reasons why talking about this may be difficult?”

Explore experiences…in making health care

decisions for others “Have you had any experiences

making health care decisions for a loved one, perhaps even end-of-life decisions?”

“What did you learn through those experiences that might help you make your own decisions or help those you love make them for you”?

Assist in understanding importance of ACP

“You have an illness that’s difficult to predict if and when a complication may occur”.

“If this happens, it may leave you unable to make your own decisions”

“As health professionals, we would need to turn to a loved one to make decisions for you”

“Often, loved ones have little idea of what kinds of decisions you would want”

“Sometimes people avoid talking too much about these things”

“A proxy who has to make decisions is often very stressed”

“While we ‘hope for the best’ we also want to help you ‘plan for the worst’”

Understanding, continued

Assist in selection and preparation of proxy

Help patient choose a person who: Is willing, trustworthyUnderstands values/goals Is able to make decisions under

stress Is willing to understand the role they

need to play and the importance of this ongoing relationship

Selection & preparation, continued

Offer to arrange meeting with chosen decision maker to facilitate patient expression of values and goals

Provide information on what the role of the decision maker might include, or what decisions may need to be made

Encourage decision maker to ask questions; stay involved in patient’s care

Advocate for patient wishes

Discuss concerns with patient’s interdisciplinary care team

Identify need or desires for outside support- spiritual leaders, mental health professionals, palliative care & hospice

Facilitate patient family care conferences to assist patient in expressing values and goals

To complete a written advance directive

Look For Other Modules To Follow! Produced by the ANNA

Ethics Committee 2004 With a grant from ANNA In consultation with Linda

Briggs, RN, MS, MA Asst. Director Respecting Choices, Gunderson Lutheran Med. Foundation, La Crosse, WI. [email protected]

ANNA National OfficeEast Holly Avenue, Box 56

Pitman, NJ 08071www.annanurse.org