Anne Watson (not her real name), who has malignant melanoma, was in hospitals to undergo limb perfusion therapy. Her account of her hospital stay shows that the nursing care she received was substandard
Having any surgical intervention will cause anxiety, both pre-operatively and post-operatively. Patients need information about what to expect and what support they will receive. Nurses providing pre- and post-operative care need to familiarise themselves with the procedure their patients are undergoing, so they are able to discuss it with them. This article describes the care of a patient with malignant melanoma who underwent limb perfusion to treat extensive recurrence in a lower limb. Isolated limb perfusion therapy is a complex and invasive procedure with potential physical and psychological consequences. The article provides a brief outline of the procedure and illustrates how, through a patient’s eyes, nurses may fail to meet the needs of patients who undergo an interventional procedure of this kind.
Citation: Nelson E, Watson A (2019) Supporting patients undergoing surgery– a patient’s experience. Nursing Times [online only].
Authors: Elizabeth Nelson (sister of Anne Watson and a nurse); Anne Watson (not her real name).
- This article has been double-blind peer reviewed
The incidence of malignant melanoma is increasing. It is highest in New Zealand and Australia (33.5 and 33.9/100,000, respectively). In the UK, the incidence is 15.1/100,000 (world age-standardised rate) (2018 figures from IARC Cancer Today). In Scotland, a 64% rise by 2022 has been predicted (Walton et al, 2015).
To reduce the risk of the melanoma spreading, early local excision is required. The high risk of recurrence of some lesions means further excision may be needed. If a lesion presents again on an extremity, isolated limb perfusion therapy (ILPT) may be performed (Box 1).
As with any intervention, the nurses involved in the patient’s care need to understand the procedure, its potential side-effects (Ashton, 2012) and the impact of the diagnosis so that they can support patients undergoing the treatment.
Box 1. Isolated limb perfusion therapy
Isolated limb perfusion (ILPT) is an invasive and complex procedure. Patients receive a general anaesthetic and remain in hospital for 6-10 days (Ma et al, 2016). Before surgery, the affected limb is enclosed in foil. During surgery, the major artery and vein of the affected limb are accessed, clamped, cannulated and connected to an oxygenated extracorporeal circuit. Collateral vessels are tied and a tourniquet applied. This allows high doses of chemotherapy to be delivered regionally (De Simone and Vaira, 2006). The operation takes 3-6 hours (Coleman et al, 2009).
After surgery, patients are prescribed bedrest for at least 24 hours and need to be closely monitored. Potential complications include local or (rarely) systemic toxicity. Local toxicity is confined to the effects of the anti-tumour agent on the treated limb, which can potentially cause oedema, functional disturbance, compartment syndrome or severe reaction necessitating amputation. Systemic toxicity results from leakage of the perfused agent into the systemic circulation (Grunhagen and Verhoef, 2016), with mild-to-severe effects including nausea and vomiting, hypotension, leucopenia (Sanki et al, 2011; Ashton, 2012), muscle wasting, lymphoedema, infection and bleeding (Fortuna et al, 2016).
After the procedure, there is an increased risk of falls, particularly when the surgery has been performed on a lower limb. Mobility is severely restricted for 2-3 months after discharge and long-term disability may result (Sanki et al, 2011; Ashton, 2012).
The patient’s story
Anne Watson (the patient’s name has been changed) was diagnosed with malignant melanoma in 2010. After further recurrence with inoperable disease in early 2016, she underwent ILPT. Throughout her stay in hospital, she encountered a culture of poor communication and disinterest, where nurses failed to fully meet her physical and psychological needs.
I arrived at the hospital accompanied by my husband and my sister. We were all very anxious. After having ‘checked in’, I was taken aside by a nurse. She introduced herself and asked me to call my husband and sister over. I thought she would explain what was to happen next and that we would be taken to a room to wait. As soon as my husband and sister approached, the nurse turned towards them and said: “You have to leave now”. She then handed them a slip of paper containing the ward telephone number. We were taken aback, because we had expected more time and more information. I was very distressed because I had not been given the opportunity to say goodbye properly.
Comment: Failure to consider Mrs Watson’s and her relatives’ information needs, and failure to give them time to say goodbye, heightened the patient’s pre-operative anxiety. The need for good communication in healthcare is well documented (McDonald, 2016). Drawing support from relatives and carers can reduce patients’ anxiety, have a positive effect on their immune system and improve their physical and psychological wellbeing (Bor et al, 2018).
Preparing for theatre
My anxiety increased when the nurse preparing me for theatre told me she would have to cover my affected leg with a foil blanket but, as she hadn’t done this before, she hoped she would get it right. The blanket was duly applied and I was transferred to the anaesthetic room, where the leg to be operated on was identified and marked.
Comment: The nurse’s admission of her lack of knowledge of the procedure required at this stage did not promote Mrs Watson’s confidence in the staff providing care.
I woke from the anaesthetic and became aware that I had an oxygen mask, urinary catheter and intravenous infusion in place. Because I had not been told to expect this, I was concerned that something had gone wrong. Now I know that these are part and parcel of the procedure.
When I was allowed out of bed, I was very unsteady on my feet and my leg was very swollen. I could not place my affected foot on the floor and needed help to go to the toilet. The nurse looking after me seemed unaware of my fear and instability, because she left me standing at the bathroom door while she went to look for a sheet protector. I stood holding on to the door handle with one hand and the wall with the other, waiting for her to come back. After some time, she returned with another nurse, but still seemed unaware of my plight. I managed to get myself from the toilet door to my bed while they chatted to each other. They left the room, still in conversation, while I unsuccessfully attempted to manoeuvre myself into a comfortable position.
Comment: The lack of patient focus is evident here. It is difficult to understand why staff failed to identify Mrs Watson’s care needs. Regardless of the reasons, her safety was put at risk and she was left feeling uncared for.
Care and discharge
I was nauseous and vomited frequently. I could not tolerate the food that was offered but no alternatives were provided. Information about my progress and rehabilitation was scant. Worryingly, staff proceeded to ‘tick’ my care sheets indicating that procedures had been carried out when they had not been.
Needless to say, I was anxious to be discharged. On that long-awaited day, I asked for a wheelchair so that I could be taken to the designated pick-up area, which was three floors below and some distance away. I was told that my family would need to collect one from the porter’s room on the ground floor and bring it with them when they arrived to pick me up. I was discharged with no information about what to expect regarding the after-effects of treatment.
Comment: A small study by Mako et al (2016) found that caring attitudes of staff, receiving help when it was needed, and being cared for by knowledgeable staff all contributed to patients’ perceptions of feeling safe and therefore to good care. Failure to see the situation from the patient’s perspective and lack of adequate information provision were viewed as threats to good care.
Mrs Watson’s story is an honest and direct account of her time in hospital for ILPT. Although her experience is unique to her, the issues she raises are unlikely to be isolated incidents. The extent to which uncaring, and in some instances dangerous, practices occur in hospital is not known. Despite patients being encouraged to report their concerns, many will refrain from doing so because they fear that it will have a negative impact on their continued or future care (Boon et al, 2013).
Many patients diagnosed with melanoma report being dissatisfied with the information they receive (McLoone et al, 2013) and around one-third report psychological distress (Kasparian et al, 2009). Shock and panic at diagnosis, unsatisfactory care and ongoing physical problems are reported (Tan et al, 2014). McLoone et al (2013) point out that confidence in the treating physician and feelings of being ‘cared for’ provide reassurance, instil confidence and increase satisfaction with care.
If nurses are to demonstrate competence, professionalism, compassion and care – as their professional code requires them to (Nursing and Midwifery Council, 2018) – they need more than adequate knowledge of the treatment and procedures they are involved with. They need to be cognisant of the impact a procedure can have on a patient’s short- and long-term outcomes. They also need to be aware of the impact of their own actions on the patient.
Box 2 outlines points for reflection and Box 3 points to further guidance and resources for professionals and patients.
Box 2. Points for reflection
Consider the four core elements embodied in the Nursing and Midwifery Council’s professional standards of practice and behaviour (NMC, 2018):
- Prioritise people;
- Practice effectively;
- Preserve safety;
- Promote professionalism and trust.
After reading Mrs Watson’s account, reflect on the following:
- What elements of the NMC code were not demonstrated?
- What aspects of Mrs Watson’s stay in hospital put her at risk?
- What simple actions could have been taken to ensure risks were minimised and the core elements of the code were met?
Box 3. Guidance and resources
- National Institute for Health and Care Excellence guideline on Melanoma: assessment and management
- Ashton KS (2012) Nursing Care of patients undergoing isolated limb procedures for recurrent melanoma of the extremity. Journal of Peri-Anesthesia Nursing; 27: 2, 94-109.
- Macmillan Cancer Support information on Having a chemotherapy into a limb
- Melanoma Action and Support Scotland (MASScot) website: http://www.masscot.org.uk/
- Skin Cancer Foundation
Although it may not be possible to provide complete reassurance regarding the outcomes of procedures such as ILPT, meeting patients’ expectations and alleviating their anxieties regarding is important. Providing support, empathetic care and adequate information may help reduce the anxiety and distress patients and relatives experience. Sadly, as demonstrated by Mrs Watson’s account, the NMC professional standards were not consistently met in her case. Some simple measures would have resulted in a dramatically different experience, with little financial cost or additional effort.
- Nurses supporting patients undergoing surgery need to understand the peri-operative procedures, potential adverse effects and long-term outcomes
- The patient’s expectations and anxieties about a procedure should be addressed
- Patients who have undergone isolated limb perfusion therapy to manage recurrent malignant melanoma are at risk of toxicity, hypotension and compartment syndrome
- Their risk of falls is increased due to limited mobility and potential hypotension
- Patients require holistic assessment and empathetic care pre- and post-operatively
Ashton KS (2012) Nursing care of patients undergoing isolated limb procedures for recurrent melanoma of the extremity. Journal of Peri-Anesthesia; 27: 2, 94-109.
Boon M et al (2013) Fear of raising concerns about care. A research report for the Care Quality Commission. London: ICM Research.
Bor et al (2018) Communication with a patient’s family. In: Lloyd M et al (2019) Clinical Communication Skills for Medicine. London: Elsevier.
Coleman A et al (2009) Optimizing regional infusion treatment strategies for melanoma of the extremities. Expert Review of Anticancer Therapy; 9: 11, 1599.
De Simone M, Vaira M (2006) Hyperthermic isolated limb perfusion. In: Baronzio GF, Hager ED (eds) Hyperthermia in Cancer Treatment: A Primer. New York, NY: Springer.
Fortuna M et al (2016) PS-005 Effectiveness and toxicity of hyperthermic isolated limb perfusion with antitumour drugs in treatment of in-transit metastases of melanoma and sarcoma. European Journal of Hospital Pharmacy; 23: A216.
Grunhagen DJ, Verhoef C (2016) Isolated limb perfusion for stage III melanoma: does it still have a role in the present era of effective systemic therapy? Oncology; 30: 12, 1045-1052.
Kasparian NA et al (2009) Psychological responses and coping strategies among patients with malignant melanoma. Archives of Dermatology; 145: 12, 1415-1427.
Ma Q et al (2016) Use patterns and costs of isolated limb perfusion and infusion in the treatment of regional metastatic melanoma: a retrospective database analysis. Advances in Therapy; 33: 282-289.
McDonald A (2016) A long and winding road – Improving communication with patients in the NHS.
Mako T et al (2016) Patients’ perceptions of the meaning of good care in surgical care: a grounded theory study. BMC Nursing; 15: 47.
McLoone JK et al (2013) Melanoma survivors at high risk of developing new primary disease: a qualitative examination of the factors that contribute to patient satisfaction with clinical care. Psychooncology; 22: 9, 1994-2000.
Nursing and Midwifery Council (2018) The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates.
Sanki A et al (2011) Isolated limb perfusion and isolated limb infusion for malignant lesions of the extremities. Current Problems in Surgery; 48: 6, 371-430.
Tan JD et al (2014) A qualitative assessment of psychosocial impact, coping and adjustment in high-risk melanoma patients and caregivers. Melanoma Research; 24: 3, 252-260.
Walton R et al (2015) Scottish Public Health Network Report. Skin cancer in Scotland: what scope is there for further public health action?