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

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

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

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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.

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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

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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 70,000 ESRD patients die per year
• 23 die after decision to withdraw
• High percentage with co morbidities
• High in-hospital death
• Unknown but low die with hospice

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Hospice Usage in ESRD Patients

• Pts Who Chose Hospice
• 26 Withdrew from dialysis 65 went to hospice
• 74 stayed on dialysis 6 went to hospice
• (2009 Renal Network Data)

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Expected Remaining Years of Life For Dialysis
Populations
No CKD claim All CKD 585.1-2 585.3-5 585.9-oth.
66-69 24.3 45.0 15.9 41.6 51.0
70-74 28.8 49.4 28.6 49.5 52.5
75-84 49.9 80.8 58.5 73.3 89.5
85 133.9 191.3 161.6 177.0 205.4
Male 59.3 91.8 57.6 86.6 101.3
Female 51.1 85.6 66.0 75.5 94.8
White 54.2 87.6 63.0 80.5 96.0
Af Am 59.3 87.2 54.0 95.0 90.4
Other 47.7 76.5 33.6 62.8 88.4
All 63.9 96.1 69.1 89.7 104.8
USRDS Annual Report 2010
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Sentinel Events Conditions that predict
prognosis of dialysis patients

• Serum Albumin lt 3.5 gm/dl
• 1 year survival 50
• 2 year survival 17
• (Goldwater, 1993)

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Cumulative Survival following first amputation
after renal failure 1996-2001
Level N 30 day 60 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
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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
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ESRD Cardiac Arrest CPR survival
Lived to discharge
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Died 92
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Late Referral to Nephrologist

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

Stack AJKD 2/03
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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
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Ask the Nephrologist

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

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Emotional Symptoms of Readiness
Anger Hopelessness Spiritual distress
Anxiety Fear Dependency
Financial distress Depression Why me?
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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

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Examples of Verbal Cues

• I dont want to be a burden
• I dont know if all of this is worth it to me
  anymore
• Ive had enough
• What happens if you stop dialysis?

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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

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• Advanced Care Planning ACP
• and
• Advance Directives
• are NOT the same thing

AD
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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

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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

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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

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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

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Initiate Routine Discussion

• Its 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
  (Were trying to begin these talks with all of
  our patients)

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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. Im not sure all of this is
  worth it to me anymore

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Where to begin?

• Walk the path with patients

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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?

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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

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Clarify statements e.g.

• The nurse says What do you mean when you say
• I dont want to be a burden
• I dont know if all of this is worth it to me
  anymore
• Ive had enough
• What happens if you stop dialysis?

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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?

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Explore understanding of ACP

• Have you ever written down any of your thoughts
  about future medical care?
• Tell me what youve done?
• Why or why not?
• Are you willing to begin to learn a little more
  about what this involves?

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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?

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Explore experiencesin 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?

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Assist in understanding importance of ACP

• You have an illness thats 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

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Understanding, continued

• 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

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Assist in selection and preparation of proxy

• Help patient choose a person who
• Is willing, trustworthy
• Understands 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

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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 patients care

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Advocate for patient wishes

• Discuss concerns with patients 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

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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.
  labriggs_at_gundluth.org

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