Advance Care Planning in Haemodialysis
patients-Staff engagement versus patient
wishes
Susan Heatley
Renal Matron
What is Advanced Care Planning?
“A way of exploring your wishes and preferences for your
future care and enabling others to know about them”
(NHS Direct 2011)
Context
Escalating health care, concerns about an ageing population
and perceptions that death and dying lacks the quality of
basic human dignity. ACP identified as a means of
facilitating a ‘good’ death, enable access to palliative care,
reduce hospital admissions and interventionist treatment
(DH 2008, NEoLc programme, 2004)
Strategic Focus
Advance care planning (ACP) is a key element of the End of
Life Care (EoLC) Pathway and a key element of EoLC Quality
Innovation Productivity and Prevention work. Ensuring people’s
wishes are known so that they can receive the care they wish in
the location of their choosing where possible is an essential part
of the national, regional and local EoLC Strategies
(National EoLC Programme. 2008. ACP: A Guide for Health and Social Care
Staff)
Aspects of Advance Care Planning
Opening up the
conversation
Explore patients
options
Identify patients
wishes and
preferences
Letting people
know patients
wishes
Being in control
of their EoLc plan
Helps Carers to
become involved
in their loved
one’s EoLc plan
What does the evidence say patients want from
ACP?
Opportunity to be able to
talk about my death with
those caring for me, be
able to plan my EoLc
To be provided with
time to say Goodbye
to important people in
my life
To inform my loved ones
of my wishes for treatment
To have someone to
have the
conversation with,
someone to listen to
me and my wishes
To be the given opportunity
to write down my choice of
where I want to die
To write down what I want when
nearing the end of my life ie, to be
free from pain, to die with dignity
To have my
family
prepared for
my death
What do Staff Say is their Role in ACP with their
Patients?
Support patients and
their carers in ensuring
their wishes are granted
at the end of their lives
By knowing what they
want will assist me in
helping patients to die
with dignity, pain free
and comfortable
Start the
‘conversation’, listen
to patients
Be an advocate
for the patients
and their
carers
Talk to patients and their
carers about their EoLc
plans, help them to write it
down
Start the
conversation
Write down
choices
Ensure plans
are in place
Wishes are
granted
Die with
dignity, pain
free
Both Nurses
and their
patients share
the same
perspectives
and the need
for ACP
Why Do ACP with Patients Undergoing Haemodialysis?
 Increasing number of elderly patients with co-existing complex comorbidities entering hospital haemodialysis programmes (Renal Registry
2009, )
 Life expectancy of patients undergoing haemodialysis aged 75 years
is 2 years (Renal Registry 2009)
 Evidence has identified that the vast majority of these patients die
within acute care settings-with no reference made to their EoLc
wishes (NHS Kidney Care 2010)
 Renal dialysis nurses have a unique opportunity, based on their long
term nurse/patient relationships to address patients EoLc wishes
through ACP (Calvin 2004, Harwood et al. 2005, Davison 2009)
Why ACP not a Concept Renal Staff Engage in?
FEAR-of upsetting patients
Evidence
• Renal patients welcome ACP and expect
medical and nursing staff to initiate these
discussions (Davison & Thorngrund 2007)
• No evidence that ACP takes away hope in renal
patients (Davison 2009, Rabetoy 2007, Yee et
al. 2011)
• Renal patients are not more depressed or
anxious following end of life care discussions
(Davison 2009, Rabetoy 2007, Yee et al. 2011)
Why ACP not a Concept Renal Staff Engage in? Cont….
• TIMING-Ambiguity of starting
the conversation
• CULTURAL-Lack of recognition
of cultural and religious
practices in relation to EoLc
Why ACP not a Concept Renal Staff Engage in? Cont….
• INSTITUITIONAL-workload, culture
of working patterns on dialysis unit,
nurse-patient relationships
• GAPS IN KNOWLEDGE-education
and training needs relating to EoLc,
ACP
• CONFIDENCE-communication
skills, Role Clarification, MDT
responsibilities
A major finding in the Evidence
Nurses personal and
professional
experiences with ACP
greatly affected their
confidence, ability,
skill and willingness to
engage in ACP
discussions with their
patients
Addressing the Challenges
 Dealing with death and dying are part of the nature of nursing
 High Mortality of renal patients
• Increasing confidence through education, training, communication skills
training
• Responsibility and opportunities provided by academic institutions
• Cultural Competency embedded in education strategies
• Recognition of educational needs of staff by managers
• Role modelling
Hospice staff exchange
programme
ACP project,
CFC registers
Renal staff
education and
training
Meeting the EoLc
needs of renal
patients through
ACP
Sharing practice
and renal patient EoLc
Communication
needs networking with
Skills training, sage
Primary care teams
and thyme courses
Where are we now?
12 patients placed on CFC register
All had ACP in place, following regular discussions with the
patient family and GP
Six patients died in acute care setting following sudden and
unexpected deterioration
Six patients died in the place of their choice-home or
hospice
Letter from wife and son of a haemodialysis
patient who died
‘Although this was a very difficult and often upsetting time as
‘George’s’ health deteriorated we felt well supported as a
family and took comfort in being able to be involved in
important decision making, especially towards the end’.
‘As you can appreciate this was a very difficult time for us
but dad had wrote down his wishes and knowing what he
wanted help relieve the burden for us and allowed us to
be able to give dad his wishes at the end of his life’.
Thank you
susan.heatley@cmft.nhs.uk