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Pain not only skin deep

When managing malignant wounds a holistic approach is needed, reports Annie May.

The physical pain can be indescribable. The emotional pain even worse. Malignant wounds are a devastating complication of cancer that usually signifies advanced and incurable disease with limited therapeutic options and a grave prognosis.

These wounds can have ongoing effects on patients, carers and nurses, yet these psychosocial consequences have been almost totally overlooked.

This is according to CQUniversity doctoral student Susan Alexander whose article ‘Malignant fungating wounds: key symptoms and psychosocial issues’ has been published in the Journal of Wound Care. It was part of a series of four articles on the management of malignant wounds.

“People living with malignant wounds, and those who care for them in their final months of life, are often deeply affected by the overwhelming demands of wound care,” says Alexander.

Alexander’s decision to investigate the lived experience of malignant wounds came after nursing a patient with a malignant wound in his groin. She became aware that there had been little research into these wounds, particularly into the lived experience.

“There had been a small number of previous articles from the perspective of nurses, and two from the perspectives of patients. However, they didn’t examine the experience from the perspectives of caregiver, as well as patients and nurses,” she says.

“For treatment plans to be effective assessment must take account of the wound’s multidimensional nature – physical, psychological, social and spiritual. Although some tools have been developed to assess the psychological issues of patients with malignant wounds, there remains little formal guidance on managing them.”

The most common physical symptoms of malignant fungating wounds are malodour, exudate, pain and bleeding. The psychological symptoms include depression, embarrassment, guilt, loss of confidence and social isolation.

Of all the symptoms, the offensive smell has been described as the one causing most distress to patients, their careers and families.

Likened to the smell of rotting flesh, maladour is frequently recognised by nurses as one of the most difficult symptoms to treat, says Alexander. The odour can permeate clothing and furnishings, and be detectable both inside and outside the patient’s residence.

In Alexander’s study, participants described maladour as the biggest issue with psychosocial issues second. Both are connected, she says.

“For many the wound signifies the body’s rotting away, and is an inescapable reminder of their approaching death. Yet, there is little recognition of the intensity of such experiences,” she says.

“Some patients are so embarrassed by their wound’s odour and appearance, they avoid contact with friends, and some delay seeking medical help.

“Carers are often left to cope on their own, their lives dominated by the demands of wound dressing, showering and laundry.”

Alexander believes that many carers experience post-traumatic stress disorder after their loved ones have died.

In her study, Alexander investigated the experience of one caregiver whose husband had a malignant wound. She described having no time for herself, as she struggled to cope with her own morbidities, the extra laundering, showering and the dressing.

Exacerbating these physical tasks was the stress of living with a man that she no longer recognised as her husband of 50 years. “She blamed the malignant wound for changing him from a gentle, passive man, to one who was always angry and verbally aggressive,” says Alexander.

“During the last six months of her husband’s life, she was not able to get a full night’s sleep that she often had to get up and assist him with problems caused by exudate leaking from the wound. She told me that on the rare occasions she did go out, she always hurried back, because she was worried about what might have happened in her absence.”

Even now, three years after her husband’s death, she continues to lie awake at night replaying what happened to her husband, and what she might have been able to do differently.

“That was very poignant, when you think that despite having devoted every moment to her husband’s care, she still feels guilty that she was not able to do more,” says Alexander.

Treating patients with fungating malignant wounds can also have overwhelming effects for nurses.

Although their experiences were typically less intense than those of patients and caregivers, Alexander’s research shows nurses can feel frustrated, inadequate, guilty and angry that they were not able to care for their patients to the standard they felt was required.

“Nurses said they were among the most traumatic cases they had ever managed, with patients leaving an enduring impression on them years later, “ she says.

“Knowing about their patient’s social isolation, and experiencing traumatic situations during treatment, can traumatise not only the nurse involved, but whole teams of community nurses.

“At times, they also experienced particularly traumatic instances when patients’ body parts actually came away during treatment.”

Alexander also looked at measures taken by nurses as they attempted to reduce the effect of the patient’s malodour upon their own bodies. This included taking a change of clothes, or deliberately leaving the patients with malignant wounds until the end of the shift so that they could go home and shower and change and get rid of that malodour, before they passed it onto other people.

“They were so aware that the malodour was actually clinging to their bodies,” she says.

There is an urgent need for health care professionals to address the psychosocial effects in patient management plans, says Alexander.

“Care must be multidisciplinary, holistic and individual to the needs of each patient and their family. It can’t just concentrate on physical issues.”

Although lack of information on psychosocial issues has hampered discussion of management options, there are some simple interventions. One simple and cost-effective way of helping patients manage their condition is to listen to their story.

“It sounds very simple, and it is. Knowing that they have been heard and their difficulties acknowledged can be therapeutic for the patient, leading to improvements in treatment. Once the practitioner understands the challenges being faced by patients, they will be better placed to help them,” says Alexander.

But most importantly it’s to never lose sight of their personhood.

“It takes very little to recognise somebody as a person but that small act can reap huge rewards for both the practitioner and patient.”

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