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Patients Susceptible To Ulcers Need Education, Legal Sign-off

Providers should begin to educate certain patients and their families about "unavoidable" pressure ulcers to help fend off related litigation, two medical malpractice attorneys recommended in the National Law Review.

Emily L. Fernandez and Alan B. Friedberg of Wilson Elser Moskowitz Edelman & Dicker proposed advising patients and documenting the process with a standardized form, even though it is not a liability waiver.

"Many pressure ulcers are unavoidable, but patients-turned-litigants do not seem to know that fact even when they develop a pressure injury incident to treatment that saved their lives," the attorneys wrote in June. "A jury should not be the first to learn that a patient's ulcers were unavoidable. … The patient should be the first to know, in real time, and preferably before a pressure ulcer ever develops."

While they targeted their June 5 article toward hospitals, the same advanced notification principle could be applied to nursing homes, which often treat patients with costly and hard-to-heal, hospital-acquired pressure ulcers or end-of-life wounds known as Kennedy terminal ulcers.


Tissue Viability And Care Of Malignant Wounds In Patients Near The End Of Life

This article, the third in our series on palliative and end-of-life care, considers skin changes at the patient's end of life.

Abstract

Skin changes at the end of life are common and can be attributed to a variety of factors. These changes can impact the appearance, texture and overall health of the skin, and can affect the person's comfort and overall wellbeing. It is important for health professionals to address these skin issues by providing appropriate skin care, pain management and emotional support. This article, the third in a series on palliative and end-of-life care, discusses risk assessment and monitoring of pressure ulcers, caring for malignant wounds and the importance of individualised care in a multiprofessional team.

Citation: Russell J et al (2024) Tissue viability and care of malignant wounds in patients near the end of life. Nursing Times [online]; 120: 8.

Authors: Julia Russell is senior quality improvement and clinical manager, Hospice UK; Alison Schofield is an independent tissue viability nurse and tissue viability nurse consultant, Pioneer Wound Healing and Lymphoedema Centres; Lynn Cornish is tissue viability lead, St Margaret's Hospice, Somerset.

  • This article has been double-blind peer reviewed
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  • Introduction

    Palliative care' is defined by the World Health Organization (WHO) (2002) as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness", usually progressive. It seeks to prevent and relieve suffering through the "early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual" (WHO, 2002). Every patient with a palliative diagnosis will have their own diverse journey, and individualised care is key for ensuring high-quality, safe and person-centred care.

    The term 'end-of-life care' broadly refers to care in the last year of life, and while palliative care and end-of-life care can be aligned, they are not synonymous.

    This article looks at skin changes at the end of life with the aim of helping nurses to provide evidence-based practice. We also discuss the under-researched area of malignant wounds, and the nurse's role in providing care, dignity and compassion for patients nearing the end of their life with a wound of this kind. As patients' function and nutritional state declines, understanding the risk of developing a pressure ulcer is a key role for nurses and the wider multidisciplinary team, which we will explore further.

    Tissue viability at the end of life

    Skin care at the end of life is important for maintaining comfort and dignity. In the last days of life, organs begin to fail, which can result in compromised factors required to sustain normal skin function, and this can be referred to as 'skin changes at life's end' (SCALE) (Beldon, 2011). Nurses must assess all pressure ulcers or SCALE holistically, and consider treatment and management based on the patient's condition (Mitchell and Elbourne, 2022).

    Pressure ulcers and skin failure at the end of life are certainly linked, but they are also two different clinical manifestations. Pressure ulceration is defined as a localised injury to the skin and/or underlying tissue, usually over a bony prominence, "as a result of pressure or pressure in combination with shear" (European Pressure Ulcer Advisory Panel, National Pressure Injury Advisory Panel and Pan Pacific Pressure Injury Alliance, 2019). Additional risk factors, such as reduced tissue perfusion and nutritional deficits, can then impact further and increase pressure damage occurrence.

    Some of the common skin changes that occur at the end of life are listed in Box 1.

    Box 1. Common skin changes at the end of life

  • Pallor
  • Jaundice
  • Dryness and thinning
  • Pressure ulcers and skin breakdown
  • Oedema
  • Bruising
  • Pruritis
  • Pressure ulcers can be associated with patients who are nearing life's end due to physiological processes to support the skin at the end of life, with the blood supply diverted from the skin to the vital organs. There are various terminologies used to describe this, which can be confusing, such as 'decubitus ominous', 'Kennedy terminal ulcer', and 'skin failure' (Levine, 2016). 'Kennedy ulcer' was used widely across UK health services, with a description of a butterfly-shaped discolouration of skin with or without ulceration, presenting in the sacral area (Latimer et al, 2019).

    In 2018 however, NHS Improvement, in its revised definition and measurement framework for pressure ulcers, advised that pressure ulcers at the end of life should be classified in the same way as all pressure ulcers and not be given a separate category, and that the term 'Kennedy ulcer' should cease to be used in reporting and clinical practice, with the aim of improving the accuracy of reporting (NHS Improvement, 2018a).

    "Care planning in advance of the end-of-life stages must be discussed with a patient, their family and carers to reduce the risks of severe pressure ulceration"

    Risk assessment

    The SCALE document states that pressure damage at the end of life may be unavoidable even with appropriate interventions and optimal care, due to the compromise of the skin, which is part of the dying process (Sibbald et al, 2010). However, it is important that health professionals establish that a patient is actively dying before assuming that pressure ulcers are unavoidable (Hotaling and Black, 2018).

    Another consideration is medical device-related pressure ulcers (MDRPUs), which are a particularly high-risk in patients at the end of life (Chaplin, 2000). In 2018, MDRPUs were added to the framework for the definition and measurement of pressure ulcers, which states that this injury should be reported separately (NHS Improvement, 2018a).

    Pressure ulcers occurring on the nasal bridge, nares (nostrils), fingertips, ears and lips can only be attributable to medical devices located in this area (Black et al, 2010), although lack of assessment and care can also be involved (Young, 2018). They generally involve devices such as nasal oxygen tubing and catheters. Skin assessment around the site of devices is essential to ensure the skin is intact, the microclimate is considered, and the skin is properly cleansed.

    Risk assessment for devices should be undertaken, and prevention according to the device itself may include fixation and the use of prophylactic dressings. Advice and support must be given to patients and carers to facilitate self-care and identify signs of skin damage and infection. In addition, patient factors that increase the risk of MDRPUs, such as incontinence, malnutrition and altered levels of consciousness or sensation, should be identified in care plans (Schofield, 2020).

    The National Wound Care Strategy Programme has recently published Pressure Ulcer Recommendations and Clinical Pathway, which emphasises that "everyone receiving care from a health or care professional should be screened for pressure ulcer risk using the PURPOSE T tool" (National Wound Care Strategy Programme, 2023). Indeed, PURPOSE T now has the strongest supporting research evidence of any pressure ulcer risk assessment tool, and it is recommended that clinicians should use it or "any other tool which, as a minimum, contains the same risk factors" (Fletcher, 2023).

    Vulnerable skin is highlighted as a risk in PURPOSE T, which SCALE would be deemed to be, and reassessment should be viewed as "hierarchical" (Fletcher, 2023). The priority for risk assessment is if the patient's condition changes, and then at a pre-planned interval – which should be at a minimum weekly in hospital and monthly in a community setting.

    "Skin care at the end of life is important for maintaining comfort and dignity"

    Skin care

    Should pressure prevention interventions stop when a person is at end of life? Time and the dying process can fluctuate, and high standards of care must continue. However, a flexible approach must be discussed if a person becomes very unwell and distress has been caused; communication is vital in understanding the care aims.

    Care planning in advance of the end-of-life stages must be discussed with a patient, their family and carers to reduce the risks of severe pressure ulceration, and to maintain comfort, dignity and a quality of life.

    Using a gentle and compassionate approach, consider the five Ps (Box 2) when planning any interventions. This involves prevention, prescription, preservation, palliation, and preference.

    Box 2. The five Ps

  • Prevention
  • Prescription (if healing is possible)
  • Preservation (maintain skin condition without deterioration)
  • Palliation (provide comfort and care)
  • Preference (patent desires)
  • Source: Brown (2021)

    Additionally, it is essential to tailor the care plan to the individual's specific needs and preferences while respecting their autonomy and wishes.

    Using a care bundle such as the aSSKINg framework (Box 3) (NHS Improvement, 2018b) acts as a guide to all the fundamental aspects of a person's care needs. The aSSKINg care bundle is a series of actions for the nurse to complete regularly to contribute to pressure ulcer prevention.

    Box 3. Elements of the aSSKINg bundle

    A Assessment of risk

    S Skin inspection and care

    S Support surface selection and use

    K Keep your patient moving

    I Incontinence and moisture care

    N Nutrition and hydration management

    G Giving information

    Source: NHS Improvement (2018b)

    Provision of support surfaces that have properties of emersion and envelopment may offer comfort when mobility reduces. Also, there are many options of turning devices and mattresses that gently reposition if this is restricted, giving micromovements as opposed to full 30-degree tilt (Emmons et al, 2014). This reduces the pain which manual repositioning can trigger and decreases distress for nurses, carers and family members when performing this procedure.

    Malignant wounds

    Malignant wounds are a devastating complication among cancer patients. Aetiologies include primary skin cancers, and erosion from subcutaneous cancers (Alexander, 2010).

    Pathogenesis of malignant wounds involves destruction of lymphatic and vascular structures, resulting in oedema, impaired perfusion, necrosis, proliferative growth, ulceration and infection (White and Kondasinghe, 2022). Wound symptoms include pain, bleeding, odour and exudate, resulting in impaired mobility, emotional distress and poor quality of life (Vardhan et al, 2019; Finlayson et al, 2017). Distressing wound symptoms can result in psychosocial symptoms such as fear, embarrassment, guilt, isolation, depression, changed social roles, and reduced quality of life (QoL) (Goldberg and Beitz, 2010).

    Due to the lack of incident recording, exact numbers of patients with malignant wounds are unknown. It is estimated that malignant wounds occur in 5-10% of cancer patients (Goode, 2004; Grocott, 2000), possibly rising to 15% within palliative patients (Furka et al, 2022). As malignant wounds generally do not heal, focus shifts to symptom control, and maintaining patient comfort and dignity. A multidisciplinary approach is required, ensuring that both physical and psychosocial symptoms are addressed.

    Malignant wounds are a visible reminder of advanced disease (Watret, 2011; Alexander, 2010). Research has demonstrated that some patients share their cancer diagnosis but will hide their malignant wounds (Lo et al, 2008). Many patients delay seeking advice until their malignant wound becomes unmanageable (Probst et al, 2013). Trusting relationships between the health professional, patient and family should be formed initially, enabling the patient to communicate their needs, fears and concerns, with the aim of managing distressing wound and psychological symptoms.

    Needs of the healthcare professional

    Nurses caring for malignant wounds can often struggle to cope. Alexander (2010) investigated the experiences of people with malignant wounds from the perspectives of those providing care. Wilkes et al (2003) conducted semi-structured interviews with nurses caring for people with wounds of this kind, and highlighted difficulties for nurses in:

  • Applying dressings;
  • Coping with odour;
  • Emotional strain.
  • Nurses require education, knowledge, appropriate resources, time and support to manage malignant wounds. Support should include a place where nurses can express their feelings in a safe environment, helping to prevent feelings of hopelessness, failure, and a fear of managing malignant wounds.

    Maintaining skin integrity in patients with malignant wounds

    Due to the lack of robust qualitative and quantitative research regarding this topic, nurses are required to rely on their own and colleagues' experiences when caring for patients with malignant wounds.

    The limited research in this area can be attributed to a combination of ethical and practical considerations. Ethically, conducting research on malignant wounds involves working with vulnerable populations and researchers must carefully navigate the balance between advancing medical knowledge and ensuring the dignity of the individuals involved. Practically, these wounds are often a complex and multifaceted challenge, making it difficult to standardise protocols for research.

    The location of a malignant wound affects repositioning options, increasing the risk of acquiring a pressure ulcer. Malignant wound location can result in patients only being able to remain in one position. Health professionals should ensure that the patient is pain free and relaxed before performing any intervention, and the site and characteristics of the malignant wound and any other complications like oedema – along with disease-related symptoms such as nausea, vomiting, seizures and shortness of breath – should be taken into consideration when deciding on repositioning techniques and equipment to use.

    Palliative patients with a malignant wound may accept a full 30-degree tilt system, but for those who find this physically or psychologically difficult, a tilting mattress that tilts to a lesser degree, or has a different mode of action, is generally acceptable.

    Strategies that help minimise interruption from nurses during the last few days or hours of life when families wish to spend quality time with their loved ones are vital. However, motorised repositioning equipment should not be viewed as a replacement for manual repositioning. More research in this area is vital.

    The case study in Box 4 explores the distress a malignant wound can cause and shows what can be achieved when symptoms are well controlled.

    Individualised care

    Caring for dying patients, wherever the setting, presents varied challenges, with a key one being the maintenance of skin integrity (Mahan and Cole, 2022). The main role of skin care at the end of life is to protect and maintain skin integrity and to reduce skin complications while prioritising comfort and dignity, rather than healing the wound or ulcer.

    Skin care is an essential part of palliation for the person receiving care and their loved ones. The pathophysiology of the dying process increases the risk of pressure ulcer formation and, as death approaches, the goals of care focus on the provision of emotional and palliative care to optimise comfort. Determining when the end of life is near for the person can be an emotional and difficult decision and must be approached with sensitivity and compassion. The nurse might want to consider involving loved ones in the skin care of the dying patient.

    Some points to consider are:

  • The National Institute for Health and Care Excellence (NICE)'s guideline Care of Dying Adults in the Last Days of Life (NICE, 2015) recommends that health professionals "continue to explore the understanding and wishes of the dying person and those important to them". This is applicable to skin care. Loved ones providing care for patients at the end of life play a crucial but often challenging role in ensuring the comfort and wellbeing of the individual;
  • Open and honest communication is needed to manage expectations and to provide emotional support when loved ones are involved in the care of the dying patient; the role of the nurse is to facilitate, support and to help ease the distress or anxiety that all parties might be experiencing;
  • Increasingly, there has been a policy shift in emphasis from nurses instructing patients what to do in pressure ulcer prevention, to a more partnership model with shared decision making (Truglio-Londrigan and Slyer, 2018). This is particularly important in community settings, where, due to healthcare workers' limited time capacity and resources, contact can be episodic, and patients and their families are increasingly involved in managing care themselves (Wondimeneh et al, 2020).
  • Conclusion

    Tissue viability for patients receiving palliative or end-of-life care is an important consideration for the multiprofessional team. A collaborative approach should be employed in care planning for pressure prevention and management through a person's palliative care to the end of life, always involving health and social care professionals with the patient and their family at the centre of the care.

  • The next article in this series aims to help nurses recognise dying and the dying phase in palliative care
  • Key points
  • Nurses have a key role to play in managing skin changes at the end of life
  • Such changes can include pressure ulcers and malignant wounds
  • Skin care is an essential part of palliation to optimise comfort
  • Carefully conducted risk assessments are essential
  • The patient and their family must be at the centre of all care provided
  • References

    Alexander SJ (2010) An intense and unforgettable experience: the lived experience of malignant wounds from the perspectives of patients, caregivers and nurses. International Wound Journal; 7: 6, 456-465.

    Beldon P (2011) Skin changes at life's end: SCALE ulcer or pressure ulcer? British Journal of Community Nursing; 16: 10, 491-494.

    Black JM et al (2010) Medical device related pressure ulcers in hospitalized patients. International Wound Journal; 7: 5, 358-365.

    Chaplin J (2000) Pressure sore risk assessment in palliative care. Journal of Tissue Viability; 10: 1, 27-31.

    Emmons KR et al (2014) Palliative wound care, part 2: application of principles. Home Healthcare Nurse; 32, 4, 210-222.

    European Pressure Ulcer Advisory Panel, National Pressure Injury Advisory Panel and Pan Pacific Pressure Injury Alliance (2019) Prevention and Treatment of Pressure Ulcers/Injuries: Clinical Practice Guideline. The International Guideline. EPUAP/NPIAP/PPPIA.

    Finlayson K et al (2017) Topical opioids and antimicrobials for the management of pain, infection, and infection-related odours in malignant wounds: a systematic review. Oncology Nursing Forum; 44: 5, 626-632.

    Fletcher J (2023) National Wound Care Strategy Update: Pressure Ulcer Consultation. Wounds UK; 19, 3.

    Furka A et al (2022) Treatment algorithm for cancerous wounds: a systematic review. Cancers; 14: 5, 1203.

    Goldberg E, Beitz JM (2010) The lived experience of diverse elders with chronic wounds. Ostomy Wound Management; 56: 11, 36-46.

    Goode ML (2004) Psychological needs of patients when dressing a fungating wound: a literature review. Journal of Wound Care; 13: 9, 380-382.

    Grocott P (2000) The palliative management of fungating malignant wounds. Journal of Wound Care; 9: 1, 4-9.

    Hotaling P, Black J (2018) Ten top tips: end of life pressure injuries. Wounds International; 9: 1, 18-21.

    Latimer S et al (2019) Kennedy terminal ulcers: a scoping review. Journal of Hospice & Palliative Nursing; 21: 4, 257-263.

    Levine JM (2016) Unavoidable pressure injuries, terminal ulceration, and skin failure: in search of a unifying classification system. Advances in Skin & Wound Care; 30: 5, 200-202.

    Lo SF et al (2008) Experiences of living with a malignant fungating wound: a qualitative study. Journal of Clinical Nursing; 17: 20, 2699-2708.

    Mahan S, Cole N (2022) End-of-life skin care: what every clinician should know. Journal of Community Nursing; 36: 5, 44-49.

    Mitchell A, Elbourne S (2022) Pressure ulcers at the end of life. British Journal of Community Nursing; 27: Sup3, S14-S18.

    National Institute for Health and Care Excellence (2015) Care of Dying Adults in the Last Days of Life. NICE.

    National Wound Care Strategy Programme (2023) Pressure Ulcer Recommendations and Clinical Pathway. NWCSP.

    NHS Improvement (2018a) Pressure Ulcers: Revised Definition and Measurement. Summary and Recommendations. NHSI.

    NHS Improvement (2018b) Pressure Ulcer Core Curriculum. NHSI.

    Probst S et al (2013) Malignant fungating wounds: the meaning of living in an unbounded body. European Journal of Oncology Nursing; 17: 1, 38-45.

    Schofield A (2020) Device-related pressure ulcers in community settings. British Journal of Community Nursing; 25: 6, S14-S18.

    Sibbald RG et al (2010) SCALE: Skin changes at life's end: final consensus statement: October 1, 2009. Advances in Skin & Wound Care; 23: 5, 225-236.

    Truglio-Londrigan M, Slyer J (2018) Shared decision-making for nursing practice: an integrative review. The Open Nursing Journal; 12: 1-14.

    Vardhan M et al (2019) The microbiome, malignant fungating wounds, and palliative care. Frontiers in Cellular and Infectious Microbiology; 9: 373.

    Watret L (2011) Management of a fungating wound. Journal of Community Nursing; 25: 2, 31-36.

    White D, Kondasinghe JS (2022) Managing a malignant wound in palliative care. Wound Practice and Research; 30: 3, 150-157.

    Wilkes LM et al (2003) The hidden side of nursing: why caring for patients with malignant malodorous wounds is so difficult. Journal of Wound Care; 12: 76-80.

    Wondimeneh SS et al (2020) The global burden of pressure ulcers among patients with spinal cord injury: a systematic review and meta-analysis. BMC Musculoskeletal Disorders; 21: 1, 334.

    World Health Organization (2002) National Cancer Control Programmes. Policies and Managerial Guidelines. WHO.

    Young M (2018) Medical device-related pressure ulcers: a clear case of iatrogenic harm. British Journal of Nursing; 27: 15, S6-S13.

     

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