End of life Care in

Chronic Kidney
Disease
 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
Life Expectancy – ESRD Patients
Survival
Patient Population
(%)
1-yr for all incident patients, unadjusted 80.4
2-yr for all incident patients, unadjusted 67.8
5-yr for all incident patients, unadjusted 39.8
10-yr for all incident patients,
unadjusted
19.9

Sources5 (Table I)
Charleston Comorbidity Index (CCI)
1 point MI, CHF, PVD, CVA,
Dementia, COPD, PUD,
Mild liver disease
2 points Mod-severe CKD, CA w/o mets
DM with end-organ damage
3 points Mod-severe liver disease
6 points Metastatic solid CA
AIDS
1 point Each decade in age > 40 years
Prognosis from CCI
Low score Mod Score High Score Very High Score
CCI Points ≤3 4-5 6-7 ≥8
Mortality (per pt-yr) 0.03 0.13 0.27 0.49

Source8
 Two (2) Roads to Death
THE DIFFICULT
Confused Tremulous ROAD
Restless
Hallucinations
Normal
Mumbling Delirium
Sleepy
Myoclonic Jerks
Lethargic

THE USUAL Obtunded Seizures

ROAD
Semicomatose

Comatose

Death
 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
 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
 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

Psychologically
Socially

Spiritually
Physical
 Model of Quality of Life
 Well-being: physical, psychological, social and spiritual
Physical Psychological
Functional Ability Anxiety
Strength/Fatigue Depression
Sleep & Rest Enjoyment/Leisure
Nausea Pain Distress
Appetite Happiness
Constipation Fear
Pain Cognition/Attention
Quality of
Life
Social Spiritual
Financial Burden Hope
Caregiver Burden Suffering
Roles and Relationships Meaning of Pain
Affection/Sexual Function Religiosity
Appearance Transcendence
 Beaumont Hospital
 Haemodialysis - 191 (Hospital) 12 (Home)

 CAPD - 42

 Cadaveric Transplant - 138 - 2011

 Living Related Transplant - 16 – 2011

Disease Trajectory
 Female Renal Patient Age 37 Timeline
 1984 – 1985 Haemodialysis

 1985 Transplant

 1985 – 1987 Haemodialysis

 1987 Transplant

 1987 – 1991 Haemodialysis

 1991 Transplant

 1992 - 2005 CAPD / HD

 2005 Transplant
 2005 – 2011 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 Haemodialysis

 1986 – 1988

 1989 – 1998
Haemodialysis

 1998 – 2004

 2004 – 2011 Haemodialysis

Patient on HD 20 Years
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 8.7%

 Peritoneal/CCPD 3.5%
 Average Age of Death – 52 years

59% > 70years

PLACE OF DEATH

 HOSPITAL = 89.5%

 HOME = 8.7%

 HOSPICE = 1.8%
 Itis 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 – Physical = Pain Free

 Social – 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.
 Notall 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
 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 - 3 Patients 76 years

81 years
85 years

 R.I.P. - 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
 April
 May 2009 – Recovered function
 Nov 2010 – CKD
 March 2011 – Conservative management
 June 2011 – Change of mind
(GP/Consultant)
 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 · Ensure request for withdrawal is not Withdrawal Process
due to any possible reversible factors
such as-
· Identify the patient’s preferred contact
· Withdrawal from dialysis may be Painful needle insertion and seek their permission to discuss
raised by patient, family or member of Frequent hypotensive episodes their health.
the MDT. Depression
· Ensure that the patient’s preferred
contact is aware of the decision to
· Symptoms/Issues er; undergo Non Dialysis Management/
· MDT inclusion in all discussions Conservative Management.
regarding withdrawal of dialysis Dyspnoea
especially core staff already involved Pruritis · Consider a trial period of dialysis in
in the care. Update communication to Restless Legs patient’s with depression, other
all as necessary. Intradialytic muscle cramps psychological conditions.
Pain
Fatigue · Discuss patient’s preference of place
Nausea of care.
· Assess patients decision making
capacity by: · Refer to the Conservative Kidney
Nephrologist · Patient’s perception that they have Management Guidelines.
Medical Team poor quality of life and that they are a
Psychiatrist burden.
Psychogeriatrician
 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 -

 Multidisciplinaryinput.
 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.