Incorporating Palliative Care Into Your Dialysis Unit

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Incorporating Palliative Care Into Your Dialysis
Unit

• Alvin H. Moss, MD
• West Virginia University

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RWJF ESRD Workgroup RecommendationDialysis Units

• Dialysis units should institute palliative care
  programs that include pain and symptom
  management, advance care planning, and
  psychosocial and spiritual support for patients
  and families.

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Objectives

• Describe the components of a dialysis unit
  palliative care program
• Explain how each component can be implemented
• Apply the elements of palliative care to a tragic
  ESRD patient case

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Not ready to go yet

• A 73 year old woman developed end-stage renal
  failure from multiple myeloma. She has had the
  multiple myeloma for six years and received
  numerous courses of chemotherapy. Her oncologist
  said that her marrow was now burned out and
  that further chemotherapy would not be of
  benefit. The patient had been chronically ill
  and had been admitted monthly for infections,
  anemia, and bleeding. She was anemic with a Hb
  of 7 and thrombocytopenic with a platelet count
  of 90,000.

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Not ready to go yet

• Because she had a terminal condition, her
  attending physician did not think that dialysis
  should be offered to the patient. The patient,
  however, stated that she was not ready to go
  yet and that she wanted dialysis.

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Not ready to go yet

• The patient was started on CAPD and lived for
  nine months. During this time, she had 13
  hospital admissions for anemia, upper and lower
  GI bleeding, and CHF, and she was transfused with
  46 units of packed RBCs and 190 units of
  platelets.

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Not ready to go yet

• On the day she died, she experienced a cardiac
  arrest at her daughters home. The rescue squad
  was called, and the patient underwent
  unsuccessful CPR for one hour. She was declared
  dead in the hospital emergency room.

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Not ready to go yet

• Sadly, she was no more ready to go after nine
  months of dialysis then she had been prior to the
  start of dialysis.
• What is missing from the care of this patient?

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Components of a Renal Palliative Care Program

• A Palliative Care Focus
• -Educational activities (in-services)
• -QI activities (M M conferences)
• -Would you be surprised?
• Pain Sx Assessment Management Protocols
• Systematized Advance Care Planning
• Psychosocial and Spiritual Support (peer
  counselors)
• Terminal Care Protocol (includes hospice)
• Bereavement Program (includes memorial service)

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Pain and Symptom Assessment and Management
Protocols
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ESRD Patient Assessments of QOL

• N165
• Sites DC, NY, WV
• Mean age 60.9 yrs
• Gender 52 men
• Dialysis duration 44 months
• Race 33 African-American
• Biochemical markers Hb 11.8 Kt/V 1.6 Alb 3.7
• Diabetics 34
• Karnofsky Performance Score 60

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ESRD Patient Assessment of QOL

• Single item scale Considering all parts of my
  lifephysical, emotional, social, spiritual, and
  financialover the past two days the quality of
  my life has been
• Very bad 0----------------------------10 Excellent

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Single Item Assessment of QOL
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ESRD Patient Assessment of QOL

• Please list the PHYSICAL SYMPTOMS or PROBLEMS
  which have been the biggest problem for you over
  the past two days.
• Over the past two days, one troublesome symptom
  has been_________________

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The Importance of Pain As a Symptom
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Types of Pain Reported
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Association Between Reports of Troublesome
Symptoms and Quality of Life Measures
Total Score
Note All results statistically significant, p
values lt.01
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Pain Assessment

• Ask the patient and BELIEVE his/her complaint
• Use a systematic approach to assessment using a
  validated pain scale
• Pain History
• Physical examination
• Diagnostic Procedures
• Reassess frequently

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WHO 3-Step Ladder
3 severe
Morphine Hydromorphone Methadone Levorphanol Fenta
nyl Oxycodone Adjuvants
2 moderate
A/Codeine A/Hydrocodone A/Oxycodone A/Dihydrocodei
ne Tramadol Adjuvants
1 mild
ASA Acetaminophen NSAIDs Adjuvants
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Nociceptive pain . . .

• Direct stimulation of intact nociceptors
• Transmission along normal nerves
• sharp, dull, aching, throbbing
• ?somatic
• easy to describe, localize
• ?visceral
• difficult to describe localize
• Tissue injury apparent
• Management
• opioids
• adjuvant / co-analgesics

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Neuropathic pain . . .

• Disordered peripheral or central nerves
• Compression, transection, infiltration, ischemia,
  metabolic injury
• Described as burning, tingling, shooting,
  stabbing, electrical
• Management
• opioids
• adjuvant / co-analgesics often required

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Opioids to Avoid in Kidney Failure

• meperidine
• morphine
• propoxyphene

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Constipation . . .

• Common to all opioids
• Opioid effects on CNS, spinal cord, myenteric
  plexus of gut
• Easier to prevent than treat
• Start stimulant laxative at the same time as
  opioid
• Senna
• Casanthranol

EPEC Module 4, 1999
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RWJF ESRD Workgroup RecommendationAdvance Care
Planning

• Nephrologists should routinely invite patients to
  express their end-of-life care preferences in the
  required semi-annual short-term and annual
  long-term care planning meetings.

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Focus on Health States, not Treatments

• Under what conditions would you not want to
  live?
• Is it more important to you to live as long as
  possible despite some suffering or to live for a
  shorter time but without suffering?

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Dialysis Patients Preferencesfor End-of-Life
Care ()
Singer.JASN 1995
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Increasing the Completion of AD by Chronic
Dialysis Patients

• focus on health states, not interventions
  (Singer, Holley)
• involve surrogates in discussions (Moss, Singer,
  Holley, Swartz)
• increase dialysis unit staffs attention to and
  comfort with discussing advance directives
  (Perry, Holley)

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DNR in the Dialysis UnitA Form of Advance
Directive

• Poor outcomes with CPR of dialysis patients
• Patients rights to self-determination
• Patients belief that other patients wishes for
  DNR status should be honored

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RWJF ESRD Workgroup Recommendation

• CMS should require dialysis units to provide
  reasonable time for social workers to counsel
  patients on psychosocial issues surrounding
  end-of-life care. At present, social workers are
  not using their professional skills for
  psychosocial support of patients because they are
  given other roles such as arranging patient
  transportation. Others might perform these
  functions.

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Peer Resource Consulting

• Role modeling
• Information dispensing
• Empathic listening
• Teaching how to work with the health care system
• Clarifying values

• Helping problem solve
• Relieving anxiety
• Legitimizing feelings
• Consumer identity
• Advocacy
• Bridging staff and patients

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PRC Training
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Questions to Explore Spiritual Issues

• Is faith (religion, spirituality) important to
  you in this illness?
• Has faith (religion, spirituality) been important
  to you at other times in your life?
• Do you have someone to talk to about religious
  matters?
• Would you like to explore religious matters with
  someone?

Lo B, Quill T, Tulsky J. Discussing palliative
care with patients. Ann Intern Med 1999
May130(9)744-9.
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Questions Useful to Discuss Spiritual and
Existential Issues

• What do you still want to accomplish during your
  life?
• What might be left undone if you were to die
  today?
• What is your understanding about what happens
  after you die?
• Given that your time is limited, what legacy do
  you want to leave your family?
• What do you want your children and grandchildren
  to remember about you?

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Referral to Hospice or Use of a Palliative Care
Approach

• Recommendation No. 9, RPA/ASN CPG
• With the patients consent, persons with
  expertise in such care, such as hospice health
  care professionals, should be involved in
  managing the medical, psychosocial, and spiritual
  aspects of end-of-life care for these patients.
  Patients should be offered the option of dying
  where they prefer including at home with hospice
  care. Bereavement support should be offered to
  patients families.

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RWJF ESRD Workgroup RecommendationCMS and ESRD
Networks

• CMS should work in conjunction with hospice and
  the ESRD Networks to develop manuals and training
  for clinicians regarding coordination and linkage
  of dialysis and hospice care for ESRD patients.

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RWJF ESRD Workgroup RecommendationCMS

• CMS should allow application of the Medicare
  hospice benefit to ESRD patients who are
  certified by their physicians as terminally ill
  but choose to continue dialysis until they die.

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Not ready to go yet

• A 73 year old woman developed end-stage renal
  failure from multiple myeloma. She has had the
  multiple myeloma for six years and received
  numerous courses of chemotherapy. Her oncologist
  said that her marrow was now burned out and
  that further chemotherapy would not be of
  benefit.
• What should have been done?

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Baystate Medical Center Dialysis Unit Memorial
ServiceVideotape (5 min)
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Conclusions

• Pain and symptom management are directly related
  to dialysis patient QOL.
• Pain is the most troublesome symptom for dialysis
  patients.
• Advance care planning is necessary to respect
  dialysis patients wishes, including for CPR.
• Psychosocial and spiritual support are key
  components of ESRD patient care.

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Take-Home Message

• The necessary components to incorporate
  palliative care into dialysis units are known.
  What is required on the part of each dialysis
  unit is a commitment to make it happen.