Transcript End of life Care in Chronic Kidney Disease

End of life Care in
Chronic Kidney
Disease
Margie Kennedy Renal Nurse Counsellor
September 2011
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?
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.
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





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 doesn’t transform lives – it is often palliative
treatment. (Brown et al 2007)
End Stage Renal Disease
 Options – 1.Dialysis - Haemodialysis
CAPD (Peritoneal Dialysis)
APD
2.Transplantation –Cadaveric
Living Donor / Related ,
Non - Related
3. Death
– 4 hrs X 3 times week in
Hospital or at Home.
 Haemodialysis
 APD
 Diet
– 8-10 hours nightly – Home
restriction
 Fluid restriction
 Medications
 Loss of independence
 Transplantation
Work up – approx 3-4 month
Wait – average 2-3yrs
Average Function – 15-16 yrs
Success Rate – 95% - 1year
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
Dialysis / Transplantation affects a Person
Socially
Psychologically
Spiritually
Physical
Beaumont Hospital
 Haemodialysis
- 191 (Hospital) 12 (Home)
 CAPD
-
 Cadaveric
 Living
42
Transplant - 138 - 2011
Related Transplant - 16 – 2011
Disease Trajectory
Female Renal Patient Age 37 Timeline
– 1985

1985
 1985 – 1987

1987
 1987 – 1991

1991
 1992 - 2005

2005
 2005 – 2011
 1984
Haemodialysis
Transplant
Haemodialysis
Transplant
Haemodialysis
Transplant
CAPD / HD
Transplant
Haemodialysis
Patient on Dialysis– 16yrs
Female Renal Patient Age 43
Timeline
 1984
– 1990
Haemodialysis
 1990
– 2006
Transplant
 2006
– 2011
Haemodialysis
Patient on HD – 11 years
Female renal patient aged 53
Timeline

1983 - 1986

1986 – 1988

1989 – 1998

1998 – 2004

2004 – 2011
Patient on HD 20 Years
Haemodialysis
Haemodialysis
Haemodialysis
Patient needled 312 per year.
163 Blood tests per year.
Exacerbations and patterns of decline ↑
intensity of psychological, social or
spiritual symptoms as well as the more
obvious deterioration.
(Palliative care for all 2009 )
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)
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 person’s hope?
 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)
 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)
2010 “Renal” Deaths 
Total = 115

Haemodialysis : 54.8% - Acute HD19.1%
Chronic HD 35.7%

CKD Stage 2-5 : 33.0% (Pre-dialysis)

Transplant

Peritoneal/CCPD 3.5%
8.7%
 Average Age
59%
>
of Death – 52 years
70years
PLACE
OF DEATH
 HOSPITAL
=
89.5%
 HOME
=
8.7%
 HOSPICE
=
1.8%
 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.
A Healthy Death
 Medical
 Social
– Physical = Pain Free
– Emotional = Supportive
 Pastoral
– Spiritual = Peaceful
(Sacred Art of Living Center, 2004)
Dying Person’s Bill of Rights

Non Abandonment
 Alleviation of Suffering
 Respect for total Personhood
 Choice based on truth telling
(Sacred Art of Living Center, 2004)
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.
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.
 Not
all deaths can be anticipated or
planned for.
unexpected deaths –
traumatic for family, staff, other patients
closely associated through friendship/
shared experiences/ proximity of treatment.
 Sudden
 Local
practice
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.
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

3 parts to Guideline
(A)
Conservative Kidney Management
Guideline.
(B) Non- Dialysis Management Guideline.
(C) Care in the last days of life Guideline.
(Beaumont Hospital)
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
CONSERVATIVE MANAGEMENT
 January
2011 – August 2011- 7 Patients
 Currently

R.I.P. -
- 3 Patients 76 years
81 years
85 years
2 Patients 87 years 3/12
70 years 2/52
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)

 2nd
Patient Male – 78 years
2009 – ARF
 May 2009 – Recovered function
 Nov 2010 – CKD
 March 2011 – Conservative management
 June 2011 – Change of mind
(GP/Consultant)
 April
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.
NON DIALYSIS MANAGEMENT GUIDELINE
Addressograph
Name:________________________
MRN:_________________________
D.O.B:_____/_______/___________
Decision Making Process
·
·
·
MDT inclusion in all discussions
regarding withdrawal of dialysis
especially core staff already involved
in the care. Update communication to
all as necessary.
Assess patients decision making
capacity by:
Nephrologist
Medical Team
Psychiatrist
Psychogeriatrician
Withdrawal Process
·
Identify the patient’s preferred contact
and seek their permission to discuss
their health.
·
Ensure that the patient’s preferred
contact is aware of the decision to
undergo Non Dialysis Management/
Conservative Management.
·
Consider a trial period of dialysis in
patient’s with depression, other
psychological conditions.
·
Discuss patient’s preference of place
of care.
·
Refer to the Conservative Kidney
Management Guidelines.
Painful needle insertion
Frequent hypotensive episodes
Depression
Withdrawal from dialysis may be
raised by patient, family or member of
the MDT.
·
·
Ensure request for withdrawal is not
due to any possible reversible factors
such as-
Symptoms/Issues er;
Dyspnoea
Pruritis
Restless Legs
Intradialytic muscle cramps
Pain
Fatigue
Nausea
·
Patient’s perception that they have
poor quality of life and that they are a
burden.
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
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.
Patient’s daughter very upset but supportive of patient’s decision.
 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.
“The
single biggest problem with
communication is the illusion
that it has taken place.”
(G.B.Shaw)
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.

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.
Colleagues

Communication
<
Carers

Commitment

Compassion

Caring

Common Sense

Charting – Communicate changes – In Chart
To GP

Checking – Update information / review patients needs

Changing – Has the patient’s condition changed ? Are any alterations
needed to their care?
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.
For a Nurse
May you never doubt the gifts you bring;
Rather, learn from these frontiers
Wisdom for your own heart.
May you come to inherit
The blessings of your kindness
And never be without care and love
When winter enters your own life.
(O’Donohue 2007)
Thank you
To the Palliative Care Team for
Collaboration with us on these
Guidelines.