Although the story presented here describes the journey of Diane, a patient with a chronic pressure ulcer, it highlights how, for every patient with a wound, the aims of treatment will vary. Often as clinicians, we aim for healing, adhering to best practice guidelines and local protocols to get there. However, on our mission to get the job done, we can overlook what is important to the patient, for whom healing is often not the main priority.

It is important that we listen to their interpretation of what living with a wound is like, and the impact our treatment choices and readiness to label patients as non-concordant can have on their life with a wound.

From Diane’s story, it is easy to see how she felt that healing would come at the expense of her social life, quality of life and lead to isolation, so for years she struggled on with a wound. She was labelled as non-concordant at times. When she did relent and follow advice, her mood became low as her fears of being socially isolated came true, however, she did eventually realise that the improvements in her wound would improve her QoL, as turned out to be the case…

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Diane’s story

Diane is 65 years old and was diagnosed with multiple sclerosis (MS) 22 years ago, which has progressed over time and resulted in reduced mobility, joint stiffness and increased muscle spasticity. The MS has relapse and remission stages, which Diane believes are induced by stress. Giving up work and living alone has had its difficulties as the disease has progressed. She has gone from being an independent lady to relying on carers and nursing teams visiting her home daily for full assistance with personal, wound and catheter care. Diane has children and grandchildren and loves to spend time with them.

In 2013, Diane was experiencing increased numbness to her legs and struggling to walk short distances, making even trips to the bathroom difficult. As a consequence, she was spending more time seated, increasing the risk of pressure ulcer development. As she was exposing her ischial tuberosities to direct pressure for long periods, a pressure-reliving cushion was provided for her chair.

Clinicians from district nursing visited Diane to provide catheter management and pressure ulcer prevention risk assessment once every three months and more frequently if any issues arose between visits. The risk assessment included a skin examination of all areas with particular attention paid to pressure. During one visit in March 2013, a pressure ulcer risk assessment including skin examination was carried out and a superficial lesion measuring 2mm² was noted on the left buttock. It was diagnosed as a category 2 pressure ulcer. As per the local pressure ulcer policy in line with NICE guidance on pressure ulcer prevention and management, the nursing team advised Diane that regular pressure relief was needed; a trust NHS advice leaflet was provided. A dressing was applied and twice weekly visits scheduled to monitor and manage the pressure ulcer.

The category 2 pressure ulcer healed quickly, but after several weeks, tissue breakdown occurred again in the same place. This is common, as old pressure ulcer sites are a risk factor for recurrence. A person in their own home does not have access to 24-hour care and assistance with repositioning every two hours. Diane also liked to sit in a particular room in her recliner chair and struggled to off-load pressure herself, as a result of reduced mobility as her MS progressed. Despite advice, patients often believe the ulcer to be superficial and not a serious problem in the early stages of pressure damage.

Diane had to use a powered wheelchair to get around at home and also when out and about, but she continued to lead an active lifestyle, which was important to her: going to the hairdressers, shops, and seeing her daughter and grandchildren. A high-risk pressure cushion was provided and used in her wheelchair following assessment by wheelchair services in the trust. Despite this, the pressure ulcer deteriorated — it was larger and colonised with slough — and was assessed as category 3 in 2014 as per EPUAP categorisation guidance.

In 2015, Diane’s mobility worsened. She became unable to reposition herself in bed, or to manage personal care despite home adaptations, and carer support was needed four times daily, including hygiene needs, meal provision, transferring from bed to wheelchair, up and downstairs and pressure relief in repositioning, with a hoist used for all transfers.

The pressure ulcer became static and dressings were applied twice weekly by the district nurse team. It was suggested by the lead district nurse that rest on the bed in the afternoons might help the pressure ulcer to improve, and as Diane was finding it too painful to sit she did start to do this. The home care team came to her home early in the morning, Diane would be assisted to get out of bed, go downstairs, sit in the chair, and after lunch at the second visit, go back to bed for four hours, repositioned off the pressure ulcer in a 30-degree tilt. Then, at the late afternoon visit, Diane would go downstairs for dinner and the evening, before a later evening visit by carers would see her positioned in bed for the night. Initially, the pressure ulcer did improve with this daily routine, but Diane then chose not to go back to bed for the four hours’ rest in the afternoon. As a result, she was sat in her chair for sometimes a 12-hour period, only able to reposition when carers or family visited to assist.

By 2015, the pressure ulcer started to deteriorate, becoming larger and deeper. The district nurses visited early morning when Diane was still in bed for dressing changes, and reiterated that the afternoon bed rest to relieve pressure would be beneficial. Diane said she would consider it again, but declined when carers were in the home.

The ulcer continued to deteriorate and by 2016, the community nurses were visiting Diane at home for daily dressing changes due to exudate and odour produced by the ulcer. It was infected and Diane required antibiotics.

Once the wound bed was debrided to create an optimum wound healing environment, negative pressure wound therapy (NPWT) was started to try to manage her symptoms more effectively. NPWT was used for 14 weeks and improvement occurred, with a reduction in size and depth, and granulation tissue was present on the wound bed. The district nurse lead once again broached the subject with Diane of sitting in the chair for a minimum period of time, i.e. four hours in the afternoon with the rest of the time in bed to relieve the pressure from the buttock. Diane said she would think about it. She did want it to improve, so agreed to go back to the afternoon bed rest.

The ulcer deteriorated again and in March 2017 bone became palpable and a referral was completed for the tissue viability nurse specialist (TVNS) to visit; an assessment at home confirmed a category 4 ulcer. The TVNS talked with Diane about her concerns, what the pressure ulcer was currently assessed to be, and the risk factors associated, such as infection, osteomyelitis and sepsis. Diane said she would stay in bed longer, but her choice to sit downstairs for four hours in the afternoon was vital to her quality of life.

Diane had a high-risk foam pressure-relieving mattress as she did not like air dynamics. Diane commented, ‘the air mattress when I tried it before was noisy because of the pump. I couldn’t sleep, it felt uncomfortable’.

At the same time, Diane was feeling she needed more care input and a social worker came to visit after referral by the district nurses. A period of respite care in a residential care home was discussed and arranged.

During the six-week respite care period, the ulcer improved as carers could provide regular support with repositioning, 24 hours a day. Diane then returned home after this period and the TVNS visited for a follow-up review. The TVNS was looking into trialling a new air dynamic mattress type that had smaller cells and a pump, which the manufacturers claimed was very quiet. Diane agreed to trial this over a 12-week period, and found it comfortable and quiet.
   

The ulcer did improve over the next three months, reducing in depth and becoming covered with granulating tissue. It was still producing a moderate to high volume of exudate and because of the position of dressings on the buttock, they quickly became wet.
   

The TVNS visited again for a review and discussed with Diane starting with NWPT again to manage the exudate and promote healing, which she agreed to do. This started in July 2017 for 16 weeks until November 2017.

Diane remembered: ‘Christmas was coming up and I really wanted to go to my daughter’s for the day and was worried I couldn’t, but I trusted all the nurses that there was a lot of improvement. I had been in bed such a lot, sitting out only few hours and sometimes I was totally fed up with it’.

Diane did go to the family for Christmas day dinner and was very happy about this. After the NWPT was discontinued, a new foam dressing was applied which had good absorbency and only needed changing twice weekly; it conformed well and stayed in place. The ulcer improved throughout 2018, decreasing further in size. Currently, the ulcer still remains, but is manageable with dressing changes once or twice weekly by the district nurses. Diane has a routine of sitting in the chair downstairs, but with some time in bed to relieve pressure in the day, and is also going out in the wheelchair again with her daughter.

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SUMMARY

Diane wanted her pressure ulcer to heal, but she had already lost so much independence through her MS symptoms, making own choices about whether to sit out in a chair was her only remaining independence left, and she felt it improved her quality of life. Take that away and self-esteem, and mental well-being is affected. Diane was so frustrated, but also fearful when the pressure ulcer deteriorated to a category 4. At this point, she was determined it was going to improve, as hard as it was, and so she made the decision to maximise pressure relief by staying on the bed with a new air mattress and repositioning by carers.

The nurses had given advice, especially the district nurse lead, who had built a good nurse–patient relationship with Diane. At times, when an air mattress was initially declined and Diane was sitting for long periods in the chair, the term non-concordant was used, but there was an understanding that quality of life was Diane’s ultimate goal, not necessarily total healing.

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KEY MESSAGES

As clinicians, our goals are often ‘wound healing’ orientated, but we should remember that the patient’s goals may differ. Diane’s wishes were to go about her life initially, then, as the ulcer deteriorated, to be involved in making decisions, such as around reducing odour/exudate and, then finally, to start healing. This was Diane’s journey and the clinicians had to support her and her needs, not just consider wound healing.

As clinicians, we should always give full evidence-based information and advice to patients so that they can make informed decisions about their treatment. Capacity should be assessed, if a person has capacity in decision-making for these aspects of care, choices should be adhered to, and exploration of why a person, despite best advice, declines an intervention or piece of equipment must be explored and revisited on other occasions, not simply documented or the patient labelled as non-concordant. If a person does not have capacity to consent, decisions in their best interest must be discussed with family and carers of the patient and involve the multidisciplinary team.
 

Consider the whole patient, not just the hole in the patient — holistic assessment is vital alongside wound assessment, and inclusion of QoL assessment tools can help in situations where non-concordance is displayed. Building good nurse–patient relationships and ongoing communication are key to ensure that the patient feels safe and supported.

Not all patients will have good outcomes in wound healing. As clinicians, it is difficult to accept this, as our core training is to help and heal people. We have to understand human factors; people can make bad choices, some are happy and content with ‘as good as it gets,’ even if not fully healed due to multiple factors. In Diane’s case, these factors included MS, which when relapsing affected mobility, mental health and nutrition.