Skin changes at life's end (SCALE): a consensus document

/Home/Caregiving and Alzheimer's/Caregiving Tips for Coping with Symptoms/Alzheimer's and Pressure Sores (Bedsores)

The occurrence of pressure damage
in the dying patient has been
realised for many years. Charcot
(1877) described a specific butterfly-
shaped ulcer over the buttocks in patients
who died soon afterwards. Shenk (2003)
noted the development of pressure
damage in a patient, ‘at the end she was
confined to bed, in a fetal position, was
incontinent and in spite of all care and
attention she suffered from decubitus’.
More recently, Kennedy (1989) recorded
the Kennedy Terminal Ulcer (KTU) as
a specific subgroup of pressure ulcers
developed by some individuals as they
are dying, usually butterfly-shaped and
situated predominantly, but not exclusively,
over the buttocks. This generated interest
and investigations were undertaken
within palliative care settings. Hanson et al
(1991) reported that 62.5% of pressure
ulcers in hospice patients occurred
within two weeks of death. Reifsnyder
and Magee (2005) noted that pressure
ulcers on individuals in a hospice setting
were more prevalent in those who had a
previous history of pressure ulceration or
dementia. While Bale et al (1995) found
a prevalence of 24% in hospice residents.
Galvin (2002) performed an audit cycle
in a hospice setting to discover whether
the incidence of pressure ulceration could
be reduced, and concluded that pressure
damage at the end of life in some
individuals may be inevitable, coining
the term skin failure. This term is rarely
used, but perhaps the time has come for
healthcare professionals to acknowledge
openly that prevention of pressure
ulceration is not possible in all patients,
and to begin to familiarise themselves,
colleagues and the public with this term,
in order that realistic expectations of
outcomes of care can be made.

In 2008 an expert panel was
established in the USA to formulate a
consensus statement on skin changes
at life’s end (SCALE) (Sibbald et al,
2009). The panel discussed the nature
of SCALE, the concept of the KTU
and skin failure towards the end of life.
The panel concluded that: ‘Our current
comprehension of skin changes that
can occur at life’s end is limited: that
SCALE process is insidious and difficult
to prospectively determine; additional
research and expert consensus is
necessary; and contrary to popular myth,
not all pressure ulcers are avoidable.’
Specific areas requiring research and
consensus were identified by the panel:
>> The identification of critical
aetiological and pathophysical factors
involved in SCALE
>> Clinical and diagnostic criteria for
describing conditions identified
with SCALE
>> Recommendations for evidence-
informed pathways of care.

Healthcare professionals have been
conscious for some time that, as a
person reaches their life’s end, this fact is
reflected within the body. Most signs are
hidden, such as diminishing renal function,
however some are more pronounced
and may cause distress to that person
and their family. End of life is defined as a
phase of life when a person living with an
illness will experience deterioration due
to that illness, which will eventually cause
death. This time period is not restricted
to that short time period when the
person becomes moribund, when death
is imminent, but may begin some weeks
beforehand (Qaseem et al, 2008).

The SCALE (2009) document
proposes that the skin, the largest
organ of the body, is not impervious to
dysfunction at the end of life and that
this may result in varying degrees of
skin/tissue damage, including pressure
ulceration. Skin compromise may include
decreased cutaneous perfusion and
localised hypoxia, resulting in a reduced
availability of oxygen and the body’s ability
to utilise vital nutrients and other factors
required to maintain skin integrity.

Healthcare professionals engaged
in caring for those patients who suffer
extremely debilitating effects during the
final months of their lives have noted
that despite providing good skin care,
repositioning, appropriate pressure-
relieving equipment and optimising
nutrition where possible, some patients
will still develop pressure damage. This
has been a source of frustration for the
professional and regarded as a failure
in care by patients/relatives, leading
to complaints and litigation. Clearly
communication has a large part to play.
Healthcare professionals need to engage
with patients and their relatives to alert
them to the possibility of pressure
damage as a result of SCALE.

Many tissue viability nurses (TVNs)
will have encountered the phenomenon
of assessing a patient with pressure
ulceration to their heels, only to discover
on performing a Doppler ultrasound that
the patient’s vascular supply has become
dramatically diminished or vanished. This
is often due to a combination of factors,
diabetes and peripheral vascular disease
being the most obvious, but also in the
extremely aged patient, this may be a
natural consequence of their extreme
age and should not be regarded as
abnormal. It then becomes imperative
that professional colleagues and relatives
acknowledge that this person may be
coming to the end of their life and
so provision should be made for a
comfortable and dignified demise.

The Liverpool Care Pathway (LCP),
(Marie Curie Palliative Care Institute,
2009), which has been implemented
in many care settings has been
demonstrated to be an invaluable tool
in caring for those patients at life’s end,
when no further active treatment is
delivered and the emphasis of care
lies in symptom control to enable the
individual to die with comfort and
dignity. The publication of SCALE raises
the question that perhaps the inclusion
of a risk assessment process within the
LCP is required, to indicate the use of
specific pressure-relieving equipment,
according to whether the patient
has flexion contractures which limit
repositioning, or the patient’s wish not
to be repositioned, etc. Currently, the
LCP indicates that the pressure ulcer
risk assessment tool for that individual
organisation is utilised. However, this
may not assist healthcare professionals
in making the correct selection of
equipment — it would surely be more
correct to utilise a risk assessment tool
specifically for the terminally ill patient
to gain direction in management of the
patient, for example, skin care (Chaplin,
2000). SCALE recommendations
would support this change within the
LCP, which could be achieved at local
organisational level following discussion
with the palliative care team, TVNs
and other interested parties, especially
patient groups.

The statements within the SCALE
(2009) document would support
the inclusion of a palliative care risk
assessment tool and do bear a distinct
resemblance to the aims of the LCP,
specifically with regard to communication
with the individual, family and friends,
considering the patient’s desire to
mobilise or sit in a chair rather than be
nursed in bed, working in accord with
the patient’s desire to take nutrition
and whether any artificially delivered
nutrition/fluids should continue in a
reduced amount or totally discontinued,
skin care and symptom relief. However,
the difference lies in that SCALE
(2009) makes an overt statement that,
‘physiological changes that may occur as
a result of the dying process may affect
the skin and soft tissues and manifest as
observable changes in skin colour, turgor
or integrity’. This is not made clear within
the LCP, nor is there any provision made
for a specialist skin assessment under the
circumstances of the dying patient.

It could be argued that the SCALE
document has arisen from a need to
avoid complaints or litigation. Regardless
whether that is in part true or not, the
SCALE document is the first of its kind
to be frank and admit that pressure
ulceration may be part of the dying
process. Now that this is in the open
arena, it falls to healthcare professionals,
whether working in primary, secondary
care, nursing homes or hospices, to
ensure that this is acknowledged and that
all appropriate means are taken so that
the dying patient’s skin remains intact
where possible.

There may be a danger in those
care settings caring for the older person
of making an assumption that the
development of pressure damage at the
end of life is a natural occurrence for
all, and using the SCALE consensus in
order to avoid the implementation of
more technical, and therefore expensive,
pressure-relieving equipment. To avoid
this scenario, it will be necessary for all
care settings to provide robust evidence
in the form of risk assessment and
documentation of care delivery, perhaps
the employment of a TVN to provide
an expert opinion as to whether the
patient’s pressure damage could be
avoided or not.

The SCALE (2009) consensus
document is long overdue and will
provoke examination of current practice
in many care settings. It is to be hoped
that this will, in turn, lead to a change in
practice and the delivery of appropriate
care to the dying in all care settings, not
just the hospice.


References

Bale S, Finaly I, Harding KG. (1995) Pressure
sore prevention in a hospice. J Wound Care
4(10): 465–8
Chaplin J (2000) Pressure sore risk
assessment in palliative care. J Tissue Viability
10(1): 27–31
Charcot JM (1877) Lectures on the diseases of
the nervous system. Translated by G. Sigerson.
The New Sydenham Society, London
Galvin J (2002) An audit of pressure ulcer
incidence in a palliative care setting. Int J
Palliative Nurs 8(5): 214–21
Hanson D, Langema DK, Olsen B, et al (1991)
The prevalence and incidence of pressure
ulcers in the hospice setting: analysis of two
methodologies. Am J Hopsital Palliative Care
8(5): 18–22
Kennedy KL (1989) The prevalence of
pressure ulcers in an intermediate care facility.
Decubitus 2(2): 44–5
Marie Curie Palliative Care Institute (2009)
What is the LCP? Marie Curie Palliative Care
Institute, Liverpool. Available online at: www.
mcpcil.org.uk/pdfs/LCP%20V12%20New%20
Documents/What%20is%20the%20LCP%20
-%20Healthcare%20Professionals%20Nov%20
2009.pdf [last accessed 13/12/09]
Qaseem A, Snow V, Shekelle P (2008)
Evidence-based interventions to improve
the palliative care of pain, dyspnoea and
depression at the end of life: a clinical practice
guideline from the American College of
Physicians. Ann Intern Med 148(2): 141–6
Reifsynder J, Magee H (2005) Development
of pressure ulcers in patients receiving home
hospice care. Wounds 17(4): 74–9
Sibbald RG, Krasner DL, Lutz JB, et al (2009)
The SCALE expert Panel: Skin Changes At
Life’s End. Final Consensus Document.
Oct 1, 2009
Shenk D (2003) The Forgetting: Alzheimers:
Portrait of an epidemic. Anchor: chapter 1


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Beldon P. Skin changes at life’s end (SCALE): a consensus document. Wounds uk, 2010, Vol 6, No 1