There are many different terms used throughout the literature to describe pressure ulcers seen in the final days and hours of a dying patient’s life, such as ‘Decubitus ominous’, Kennedy terminal ulcer’, and ‘skin failure’. Levine (2016) reported that the differing definitions were causing confusion for healthcare professionals and called for a unified classification system which resulted in the National Pressure Ulcer Advisory Panel (NPUAP) developing 10 consensus statements. These outlined the probable causes of skin changes at end of life and suggested the focus of care, in this patient group, to be very important.
In 2018, the National Health Service Improvement (NHSI) ‘Pressure ulcers: revised definition and measurement’ document recommended that, in the UK, a pressure ulcer that has developed at end of life, due to ‘skin failure’ should not be referred to as a ‘Kennedy Ulcer’ and that pressure ulcers at the end of a patient’s life should be classified in the same way as all pressure ulcers, and not given a separate category (NHSI, 2018).
It is widely recognised the skin can fail in the last few days of a patient’s life (Black et al, 2011). Skin changes at life’s end (SCALE) is an acronym, and not a definition, which is being used to explain skin/tissue failure, both at cellular and molecular levels, which can lead to tissue hypoxia (lack or reduced presence of oxygen). Skin failure starts with reduced tissue perfusion that results in the tissue’s inability to resist normal pressures or traumas alongside a reduced ability to remove waste products (Hotaling & Black, 2018. Sibbald and Krasner, 2010).
The question that is often asked is whether pressure ulcers are unavoidable at the end of a patient’s life?
It is very important to understand that pressure ulcers and skin failure are two distinct, yet related, clinical phenomena, and can occur simultaneously when failing skin is subjected to increased forces of pressure and shear.
Skin failure occurs due to deterioration in general health and often mirrors the failure of other body systems. Blood is shunted away from the skin to maintain perfusion and nutrition to other vital organs, such as the heart, lungs and brain, and can be categorised as, acute, chronic or end stage.
- Acute skin failure occurs due to critical illness and acute tissue hypoperfusion, and often has major organ compromise such as in circumstances of respiratory, renal, cardiac or liver failure or sepsis.
- Chronic skin failure occurs in conjunction with chronic diseases and is gradual, running alongside multiple chronic comorbidities which eventually lead to organ failure.
- End stage skin failure occurs in the final days or weeks of the end of a person’s life. When death is inevitable, skin failure can manifest over a short period of time (within days or hours) and in this circumstance the acronym SCALE is used to describe the presence of end-of-life skin failure.
It is this deterioration of general health, whether acute, chronic or end-of-life, that leaves patients open to higher risks of developing pressure ulcers, due to the reduced tolerance to pressure and shear forces on the failing skin (Delmore et al, 2015. Langemo & Brown, 2006).
Enhancing end-of-life care to prevent pressure ulcers
Schofield (2014) argues that there is evidence to suggest that skin management at the end-of-life is often an ignored ‘phenomenon’ and that many clinicians fail to consider the impact that reduced skin perfusion and nutrition will have on increasing a patient’s risk of developing pressure ulcers. This is very concerning when most of the literature recognises that the prevalence of pressure ulcers, in patients suffering from skin failure as they approach the end of their lives, is significantly higher and therefore, prevention is key (Livesey 2023). Hotaling and Black (2018) highlight how important it is that clinicians establish that a patient is actually actively dying before assuming that pressure ulcers are unavoidable.
Care planning needs to take into consideration the imminent deterioration, which despite excellent care may result in skin changes, and this should include the following:
Skin assessment – skin changes
- Patients with cancer, who are approaching the last stages of life, may have altered physiology due to various factors such as nutrition, SCALE, medication, and radiotherapy (Ripley & Collier, 2016). Changes in skin colour, turgor, oedema, temperature, integrity, or localised pain can lead to skin breakdown, despite appropriate care (Beldon, 2011). An awareness that skin changes may result from deteriorating health could reduce possible guilt felt by carers, that may arise following the development of SCALE (Shank, 2009).
- A total skin assessment should be performed more regularly paying special attention to areas of skin over bony prominences, and not forgetting areas such as ears, back of the head, or any part of the skin that is in contact with a medical device (i.e., oxygen tubing, splints, catheters, leg bags). Skin assessments could be incorporated into other care activities, including repositioning, to minimise disruption to comfort.
- The breakdown of skin should not be considered inevitable, and can only be considered unavoidable, if all the evidence demonstrates appropriate risk assessment, interventions are undertaken, and suitable equipment and repositioning regimes are in place. Sensitive sharing of information about skin changes with the patient, family or carers can support the development of appropriate care plans or the need to change pressure relieving equipment.
- Pain can be difficult to manage or poorly managed in end-of-life care, and it is important that an MDT approach, which includes palliative care expertise, is used to maintain quality of life during this time. It is important to recognise that medication used to manage pain can impair healing and tissue repair, and strong opioids can reduce spontaneous movement requiring patients to be moved more frequently. Pain can be detrimental as it interferes with the immune response, thereby negatively impacting the healing process, resulting in a delay of wound closure or the normal tissue repair process (Sussman and Bates-Jensen, 2012).
- Patients may also experience significant pain on movement and may need to have analgesia administered prior to repositioning. When the patient has a pressure ulcer, it is important to assume that they have pain and a study reported that 84% experienced pain at rest and during dressing changes (Sussman and Bates-Jensen, 2012). Consider using a support surface offering good immersion and envelopment of the patient and dressings which do not cause injury to the skin and that ideally does not need frequent changing.
- There are many things that can impact on the ability of clinicians to reposition regularly or effectively. These can include reduced tissue mass due to weight loss over bony prominences, respiratory symptoms that may require the patient to remain in a seated position for long periods, nausea, pain, level of consciousness and patient/family preference.
- Providing pressure area care may cause professional dilemmas when caring for EOL patients, as it can lead to challenges in promoting comfort if patients experience significant pain on movement (Ripley & Collier, 2016). If repositioning is restricted, the clinicians may need to consider a higher specification of pressure redistributing support surface that may or may not include some lateral tilting features (Emmons et al, 2014).
- When an individual is actively dying, interventions to prevent and/or treat a pressure ulcer are often superseded by the need to promote comfort by minimising turning and repositioning, plus allowing the individual to determine frequency of turning and choice of position (Langemo, 2006).
- This should not, however, lead to poor care, as infrequent repositioning due to inadequate staffing can contribute to pressure ulcer formation and reduced healing rates in terminally ill individuals (Kayser-Jones et al, 2008).
- Sensitive discussion and clear documentation are needed with the patient and family about the potential limitations to repositioning or the need for a change of equipment in line with the patient’s wishes and clinical needs.
- The individual’s goals, wishes, comfort and tolerance.
- Pre-medicate the individual 20-30 minutes prior to a scheduled position change for individuals who experience significant pain on movement.
- Pressure redistribution characteristics of the support surface.
- The individual’s current clinical status.
- The combination of comorbid conditions as medically feasible. (Langemo et al, 2015)
- Poor or malnutrition is a fact in the development of pressure ulcers clinicians need to recognise, that alongside a decrease in appetite, possible dysphagia, a dependency on others for feeding, or personal choice, the absorption of nutrients may be impaired as patients approach the end of life. Matzo and Sherman (2019) report that most cancer patients who are receiving palliative care pass away from malnutrition and suggest that measures should be taken to maintain adequate dietary intake, preserve life, and increase quality of the remaining time rather than increasing weight.
- Remove all dietary restrictions, assess bowel pattern to avoid constipation, and introduce stool softeners if appropriate. Consider what the patient’s own goals are with nutrition and consider providing food sources that would not be considered optimal or the ‘healthiest’ choice. Simple measures to maintain intake, such as frequent offerings of small nutritional portions, identifying favorite foods, changing the consistency or slow hand feeding can be used to support nutrition and hydration status.
- Improved nutrition may lead to an improvement in wound healing that may result in a decrease in the level of discomfort for the patient. Other indicators of poor nutritional status include low hemoglobin, low serum albumin and pre-albumin, and low protein intake (Langemo and Brown, 2006).
- Monitoring weight can also be helpful.
- How you give information and communicate with a person who is receiving end of life care will differ according to each individual, so it is important to communicate in a way that is right for each person. Remember where appropriate to include families and carers who know the person. Clear, timely and sensitive communication with the patient, their family or carers is of vital importance and will help to manage their expectations with honesty and compassion. This should ideally take place prior to the active dying phase and may need the input of the multidisciplinary approach.
- Establishing goals of care, creating realistic care plans which take account of the individual’s preferences, cultural and religious beliefs, alongside how their decisions on preferred care may impact on the development or not of pressure ulcers, is crucial. These discussions need to be clearly documented and reflected in the ongoing care plan and revisited regularly (Firnhaber et al, 2020. Ripley & Collier, 2017. Hotaling & Black, 2018. Sibbald et al, 2009. Brown, 2021).
- Beldon P (2011) Skin changes at life’s end: SCALE ulcer or pressure ulcer? British Journal of Community Nursing. 16, 10, 491-494.
- Black J, Edsberg LE, Baharestani MM, Langemo D, Goldberg M, et al. (2011) Pressure ulcers: avoidable or unavoidable? Results of the National Pressure Ulcer Advisory Panel Consensus Conference. Available at https://pubmed.ncbi.nlm.nih.gov/21350270/ (accessed 16/08/23).
- Brown, A. (2021). Are pressure injuries unavoidable at the end of life? Journal of community nursing, 35 (5) Pg 36-41. Available at https://www.jcn.co.uk/journals/issue/10-2021/article/are-pressure-injuries-unavoidable-at-the-end-of-life (Accessed 24/07/23)
- Delmore et al, 2015). Differentiating a Pressure Ulcer from Acute Skin Failure in the Adult Critical Care Patient. Clinical management extra in Advances in Skin & Wound Care, 28 (11). 514-524). Available at https://pubmed.ncbi.nlm.nih.gov/26479695/ (Accessed 24/07/23)
- Emmons KR, Dale B, Crouch C (2014) Palliative wound care, part 2: application of principles. Home Healthcare Nurse. 32, 4, 210-222
- Firnhaber, G. Roberston, D. Kolasa, K. (2020) Nursing staff participation in end-of-life nutrition and hydration decision-making in a nursing home: A qualitative study. Journal of advanced nursing, 76 (11). (Available at) https://doi-org.ezproxy.brighton.ac.uk/10.1111/jan.14491 (accessed 24/07/23)
- Hotaling, P. Black, J. (2018). Ten top tips: end of life pressure injuries. Wounds International. Vol 9. 19-21.
- Kayser-Jones J, Kris AE, Lim K, et al (2008) Pressure ulcers among terminally ill nursing home residents. Res Gerontol Nurs 1(1): 14-24
- Langemo, D. Brown, G. (2006). Skin fails too: acute, chronic, and end-stage skin failure. Adv Skin Wound Care. 19, 206-211. Available at https://pubmed.ncbi.nlm.nih.gov/16641567/ (accessed 24/07/23).
- Livesey, J. (2023). The role of the nurse in providing wound management at the end of life. Expert Comment. Wound Care Today. Available at. https://www.woundcare-today.com/journals/latest-issue/wct (Accessed 24/07/23)
- Levine. J. (2016) Unavoidable pressure injuries, terminal ulceration, and skin failure: in search of a unifying classification system. Adv Skin Wound Care. 305: 200-202. Available at https://pubmed.ncbi.nlm.nih.gov/28426565/ (Accessed 24/07/23)
- Matzo, M. Sherman, D.W. (2019). Palliative Care Nursing: Quality care to the end of life. 5th Ed. Springer Publishing Company, New York.
- NHS improvement (2018). Pressure ulcers: revised definition and measurement. Available at https://www.england.nhs.uk/wp-content/uploads/2021/09/NSTPP-summary-recommendations.pdf
- (Accessed 24/07/23)
- Ripley, KR. Collier, M. (2017). Managing tissue viability issues in patients with cancer approaching the end of life. Nursing Standard. 31, 22, 54-61.
- Schofield, P. (2014) Expert commentary. Journal of Community Nursing. 28(3): 62
- Schank JE (2009) Kennedy terminal ulcer: the ‘ah-ha!’ moment and diagnosis. Ostomy/Wound Management. 55, 9, 40-44.
- Sibbald, G,. Krasner, D. (2010) (SCALE): Skin changes at life’s end: Final consensus statement. October 1, 2009. Adv Skin Wound Care 23(5): 225–36
- Sibbald RG, Krasner DL, Lutz JB, et al. (2009) The SCALE Expert Panel: Skin Changes At Life’s End. Final Consensus Document. Available at https://www.epuap.org/wp-content/uploads/2012/07/SCALE-Final-Version-2009.pdf
- Sussman C, Bates-Jensen B (2012) Wound Care: A Collaborative Practice Manual for Health Care Professionals. 4th edn. Lippincott, Williams and Wilkins, Baltimore M