End of life Care in Chronic Kidney Disease

1
End of life Care in Chronic Kidney Disease

• Margie Kennedy Renal Nurse Counsellor
• September 2011

2
This presentation -

• Introducing some background information
• What is involved for a person living with Chronic
  Kidney Disease?
• What are the guidelines ?
• What are the challenges faced so far since
  implementing these guidelines in January 2011?
• Can these guidelines be modified to be of use in
  other areas of Chronic illness?

3
DEFINITIONS

• Chronic Kidney Disease (CRD) Slow onset of
  kidney disease which is irreversible.
• End Stage Kidney Disease (ESKD) Advanced kidney
  disease.
• Dialysis (HD) An artificial process which
  removes chemical substances and water from the
  blood by passing it through an artificial kidney.
  

4
Progression of Chronic Kidney Disease

• Glomerular Filtration Rate (GFR normal
  120mls/min)
• CKD Chronic Kidney Disease
• CKD 1 GFR Greater than 90mls / min
• CKD 2 GFR 60 89mls / min
• CKD 3 GFR 30 59mls / min
• CKD 4 GFR 25 29mls / min
• CKD 5 GFR less than 15mls / min

5

• Advanced kidney disease is not asymptomatic.
• Potential complications of dialysis is longer
  than those of chronic kidney disease alone.
• Clinicians often assume a more favourable
  prognosis than is justified.
• For many patients dialysis is not the bridge to
  renal transplantation.
• Dialysis doesnt transform lives it is often
  palliative treatment. (Brown et al 2007)
  

6
End Stage Renal Disease

• Options 1.Dialysis - Haemodialysis
• CAPD (Peritoneal
  Dialysis)
• APD
• 2.Transplantation Cadaveric
• Living Donor / Related ,
• Non - Related
• 3. Death

7

• Haemodialysis 4 hrs X 3 times week in Hospital
  or at Home.
• APD 8-10 hours nightly Home
• Diet restriction
• Fluid restriction
• Medications
• Loss of independence

8

• Transplantation
• Work up approx 3-4 month
• Wait average 2-3yrs
• Average Function 15-16
  yrs
• Success Rate 95 - 1year

9
Chronic Kidney Disease is for Life

• Post Transplant Immunosuppression
• Risk of
  Rejection
• Risk of
  Infection
• Risk of Diabetes
• Risk of Skin
  Cancer
• Others
• Clinic Visits for life every 3 months

10
Dialysis / Transplantation affects a Person
Psychologically
Socially
Spiritually
Physical
11
Beaumont Hospital

• Haemodialysis - 191 (Hospital) 12 (Home)
• CAPD - 42
• Cadaveric Transplant - 138 - 2011
• Living Related Transplant - 16 2011

12
Disease Trajectory
13
Female Renal Patient Age 37 Timeline

• 1984 1985
• 1985
• 1985 1987
• 1987
• 1987 1991
• 1991
• 1992 - 2005
• 2005
• 2005 2011
• Patient on
  Dialysis 16yrs

Haemodialysis
Transplant
Haemodialysis
Transplant
Haemodialysis
Transplant
CAPD / HD
Transplant
Haemodialysis
14
Female Renal Patient Age 43 Timeline

• 1984 1990
• 1990 2006
• 2006 2011
• Patient on HD 11 years

Haemodialysis
Transplant
Haemodialysis
15
Female renal patient aged 53 Timeline
Haemodialysis

• 1983 - 1986
• 1986 1988
• 1989 1998
• 1998 2004
• 2004 2011
• Patient on HD 20 Years

Transplant
Haemodialysis
Transplant
Haemodialysis
16

• Patient needled 312 per year.

163 Blood tests per year.
17

• Exacerbations and patterns of decline ?
  intensity of psychological, social or spiritual
  symptoms as well as the more obvious
  deterioration.
  
• (Palliative
  care for all 2009 )

18
Veteran Dialysis Patient

• Years of suffering
• Cumulative stress/ anxiety
• Innumeralable needling/procedures/ investigations
• Challenge of coping/ enduring/ hoping
• Failed transplant
• Resilience / Endurance
• The illness is an ambiguous loss a constant
  grieving process which is mood related and never
  ending. You are always well enough but never
  quite right. Rarely sick but always ill
• 
  (Liam McCarthy Nov 2007)
• He who has a why to live can bear with almost
  any how
• 
  Nietzsche (Frankl 1959)

19
In Relation to the Veteran dialysis patient,
the biggest challenge of all is how to introduce
the subject of End of Life Care

• How do you broach the subject ?
• Should you broach the subject?
• When should you broach the subject?
• How do you balance the intent to provide good end
  of life care with the possibility of taking away
  the persons hope?

20

• Death is often seen as simply a physiological
  event, and some even view it as a failure, and
  even in some instances, a kind of moral failure
  ..the ultimate defeat.
• But the truth is, death is a developmental
  phase in our life cycle.
• (Joan
  Halifax Roshi)

21

• The experience of dying is more than a set of
  medical problems to be confronted. In fact the
  fundamental nature of dying is not medical at
  all. It is personal and experiential. Dying is a
  personal experience.
• (Dr.
  Ira Byock)

22
2010 Renal Deaths -

• Total 115
• Haemodialysis 54.8 - Acute HD19.1
  
• 
  Chronic HD 35.7
• CKD Stage 2-5 33.0 (Pre-dialysis)
• Transplant 8.7
• Peritoneal/CCPD 3.5

23

• Average Age of Death 52 years
• 59 gt 70years

24

• PLACE OF DEATH
• HOSPITAL 89.5
• HOME 8.7
• HOSPICE 1.8

25

• It is important to recognise when End of Life may
  be approaching, signalling the need to re-focus
  the emphasis of care to relief of symptoms
  maintenance of comfort and attention to
  psychological, social and spiritual concerns.

26
A Healthy Death

• Medical Physical Pain Free
• Social Emotional Supportive
• Pastoral Spiritual Peaceful
• (Sacred Art of Living
  Center, 2004)

27
Dying Persons Bill of Rights

• Non Abandonment
• Alleviation of Suffering
• Respect for total Personhood
• Choice based on truth telling
• (Sacred Art of Living
  Center, 2004)

28
Guideline

• A statement of principles giving guidance but
  allowing for professional initiative.
• The Guideline provides a template of care to all
  staff in End of Life care of patients within the
  TUN Directorate.

29
Principle

• It is our responsibility to support people
  with advanced kidney disease to live life as
  fully as possible and enable them to die with
  dignity in a setting of their own choice. In
  addition, family members are supported throughout
  the illness of their relative, and are treated
  with compassion and in a caring manner following
  the death of their relative.

30

• Not all deaths can be anticipated or planned for.
  
• Sudden unexpected deaths
• traumatic for family, staff, other patients
• closely associated through friendship/
• shared experiences/ proximity of treatment.
• Local practice

31
Timeline to development of this Guideline

• Invitation by letter to nursing / medical staff
  in the unit to join an ad hoc committee to work
  on drawing up a policy on End of Life Care.

32
Steering Committee

• 1 Nephrologist
• 1 Consultant Palliative Medicine/ Specialist
  Palliative Care Nurse
• 1 Renal Registrar
• 2 Patient Care Co-ordinators
• 3 Ambulatory Care CNS
• Staff Nurses
• Renal Counsellors
• 10 meetings between April 2010 Feb 2011
• Signed off at Nephrology Guideline Committee
  Meeting 11th March 2011

33
3 parts to Guideline

• Conservative Kidney Management Guideline.
• (B) Non- Dialysis Management Guideline.
• (C) Care in the last days of life Guideline.
• (Beaumont
  Hospital)

34
Conservative Kidney Management Guideline

• Applies at point on the disease trajectory where
  the patient has made a decision not to opt for
  dialysis , Likely at CKD stage 3-4

35
(No Transcript)
36
(No Transcript)
37
CONSERVATIVE MANAGEMENT

• January 2011 August 2011- 7 Patients
• Currently - 3 Patients 76 years
• 81 years
  
• 85 years
• R.I.P. - 2 Patients 87 years 3/12
• 70 years
  2/52

38
Change of Mind 2 patients

• 1ST Patient Female 80 years
• Feb 2011 CKD
• April 2011 Conservative Management
• May 2011 Counsellor appointment
• August 2011 Change of Mind (Amb.C./Consultant)
  

39

• 2nd Patient Male 78 years
• April 2009 ARF
• May 2009 Recovered function
• Nov 2010 CKD
• March 2011 Conservative management
• June 2011 Change of mind (GP/Consultant)

40
Non-dialysis Management Guideline.

• Patients who have made a decision to withdraw
  from dialysis, and for whom dialysis is no longer
  a suitable treatment for clinical reasons.
• NB The patient continues to be actively cared
  for in all but the provision of dialysis.
• - proceed to Guideline for Conservative
  Management of Care in the last days of life.

41
(No Transcript)
42
(No Transcript)
43
Withdrawal from Dialysis

• Total 6
• 2 Regular (Chronic) HD 84 yrs old -4yrs HD
• 
  82 yrs old -8yrs HD
• 4 Acute (Trial) HD 79yrs old - 13 days HD
• 87yrs
  old 15 days HD
• 94yrs
  old 21 days HD
• 78yrs
  old - 1 month HD

44
Case Study of Withdrawal of Haemodialysis

• 82 yrs old Female
• 10 yrs on HD
• Decided herself to withdraw from dialysis.
• Reasons
• Tired of dialysis,
• No quality of life,
• Recent surgery which greatly impeded her
  mobility .
• Little prospect of improvement to mobility.
• Depression. Psychiatric review. Patient declined
  anti-depressant.
• Competency to make decision supported by
  Consultant
• Nephrologist, who knew patient X10yrs.
• Patients daughter very upset but supportive of
  patients decision.

45

• Patient experienced a crisis of faith,
• Spiritual pain.
• Chaplaincy input/ regular support.
• Specialist Palliative care supervision/support re
  medications to maintain comfort.
• Slipped into peaceful coma,
• RIP 13 days later.

46
(No Transcript)
47

• The single biggest problem with communication is
  the illusion that it has taken place.
• (G.B.Shaw)

48
Challenges so Far -

• Communication.
• Conservative Management
• Decision on ward (In-pt) - refer to Patient
  Care Co - ordinator.
• Decision in OPD - refer to Ambulatory Care.
• Document form and fill out fully.
• Arrange follow-up OPD appointment.
• Refer patient to other Health Professionals as
  required.

49

• Discontinue all non-essential medications before
  patient leaves the hospital for discharge.
• Letter to be sent to the GP. Template letter
  currently in 3rd draft.
• Dr. to speak to GP also ensure you have the
  correct GP , address, etc.
• Ensure main carer knows who to contact for
  support/advice before they leave the hospital.
• DNA. follow up call from Ambulatory Care.
• Notification of Death.

50

• Colleagues
• Communication lt
• Carers
• Commitment
• Compassion
• Caring
• Common Sense
• Charting Communicate changes In Chart
• 
  To GP
• Checking Update information / review patients
  needs
• Changing Has the patients condition changed ?
  Are any alterations needed to their care?

51

• Application of these Guidelines to other areas
  of Chronic illness -
• Multidisciplinary input.
• Outline significant areas of change on the
  disease trajectory.
• Decide on appropriate response to these changes.
• Document and implement.
• Review.

52
For a
NurseMay you never doubt the gifts you
bringRather, learn from these frontiersWisdom
for your own heart.May you come to inheritThe
blessings of your kindnessAnd never be without
care and love When winter enters your own life.
(ODonohue
2007)
53
Thank you

• To the Palliative Care Team for Collaboration
  with us on these Guidelines.