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Incorporating Palliative Care Into Your Dialysis Unit. Alvin H. Moss, MD West Virginia University. RWJF ESRD Workgroup Recommendation: Dialysis Units.

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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 Recommendation:Dialysis 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 daughter’s 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

N=165

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 life—physical, emotional, social, spiritual, and financial—over the past two days the quality of my life has been:

Very bad 0----------------------------10 Excellent



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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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Association Between Reports of Troublesome Symptoms and Quality of Life Measures

Total Score

Note: All results statistically significant, p values <.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

Fentanyl

Oxycodone

± Adjuvants

2moderate

A/Codeine

A/Hydrocodone

A/Oxycodone

A/Dihydrocodeine

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 Recommendation:Advance 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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Advance Care Planning

  • Identification of Medical Power of Attorney

  • Goals of treatment

  • Cardiopulmonary resuscitation (CPR)

  • Feeding tubes

  • Mechanical ventilation

  • Dialysis

  • Organ and tissue donation


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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 staff’s attention to and comfort with discussing advance directives (Perry, Holley)


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DNR in the Dialysis Unit:A 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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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

Peer Resource Consulting



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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 May;130(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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Would you be surprised if the patient died in the next year?


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Referral to Hospice or Use of a Palliative Care Approach

Recommendation No. 9, RPA/ASN CPG

“…With the patient’s 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 Recommendation:CMS 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 Recommendation:CMS

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.