Relieving symptoms, listening and improvising
Palliative wound care is no longer about healing a cancer-related wound, it's about holistic care and symptom relief.
By Anke Kayser
For patients and their families, the mental and physical effects are an immensely heavy burden. Nevertheless, the care provided to these people during their often very limited time left seeks to achieve a high quality of life. How the patient feels takes absolute priority. The needs expressed by patients can vary greatly and cannot be reduced to a universal formula.
For those caring for people with ulcerating cancer wounds, it's essential to always be aware of the person as a whole and to treat them with respect. This is because patients notice even the slightest careless remark or nonverbal behavior, and it can deeply injure their sense of dignity.
Not infrequently it is a challenge for both patients as well as caregivers and family members that the clearly visible, often foul-smelling cancer wounds no longer allow them to push aside the life-threatening illness, and this can even lead to disgust and refusal. This is why the main focus of palliative care is now on relieving symptoms, including reducing odors, while being respectful of patients' dignity and self-determination. It also focuses on providing psychosocial support to patients and their family members.
In order to help as much as possible in such a situation, unconventional paths often need to be taken and creative solutions sought out. It's also important to be able to rely on an interprofessional team to exhaust all options for assistance. Oncologists, pain therapists, psycho-oncologists, internists, surgeons, orthopedic surgeons, nutritionists, physical therapists, occupational therapists, speech therapists, nurses, palliative care nurses and wound specialists all act in concert for the patient. Reciprocal, consistent communication as partners is important. So far there have been no objective statements on the effectiveness and benefit of the various dressings available on the market. What dressing is ultimately the right one to relieve the patient's suffering the most efficiently is not infrequently a matter of trying them out. Whether this dressing's mode of action is desired for this kind of wound should always be closely scrutinized.
Since the condition of the wound and the patient's wishes can change rapidly, caregivers need to react to changes with a high level of professionalism.
In this special situation, there can be no prescribed regimen. The dressing intervals need to be constantly adapted to the needs and wishes of the patient, with a rule of thumb of "as often as needed, as infrequently as possible."
Hubert Berner*: Caught in a web
Hubert Berner* was 59 years old when he was diagnosed with metastatic hypopharyngeal cancer in August 2008. Given the extent and location of the tumor in the lower throat area, an operation was initially out of the question. Berner was given a chemo port for chemoradiotherapy and a PEG tube due to difficulty swallowing. Although Berner practiced studiously, his speech training saw little success.
In 2010, the tumor spread to the right side of his throat. The penetration of the metastases through the skin resulted in an obvious change in Berner's body image. At the request of his family, Berner took his file and findings to the Center for Head and Neck Cancer at the University of Tübingen in September for a second opinion. An operation followed.
In February 2011, the cutaneous metastases proliferated rapidly. A wound consultation at the University Hospital Leipzig brought bad news: Additional operations were no longer possible.
Palliative wound care
I first met Hubert Berner in September 2010. Together with his family, we discussed the goals of the treatment, and talked about his thoughts and feelings. From December 2010 to March 2011, the ulcerating cutaneous metastasis on the right side of his face and neck progressed immensely. On the front of his throat was a cauliflower-like tumor with surrounding metastases. The surrounding skin looked like parchment. The wound exuded a perceptible odor.
While changing his dressing, a detailed and intense conversation developed between Berner and me. He told me about his family, his feelings and fears arising from his disease. He felt as though he were caught in a web from which he could no longer escape. Life with a potentially fatal disease had become visible to the outside world, he could no longer push it aside. At home, he was withdrawn and limited contact with his family to a minimum.
During this emotional conversation, it could be made out that Berner thought the smell of the wound was the worst thing about it. A stench continually would go up his nose and he feared those around him also smelled this foul odor. He didn't complain of pain. He only reported a strange, unpleasant sensation on the right side of his neck.
By March 2011, Berner could no longer bear his deformed appearance. Whenever he looked in the mirror, he discovered new metastases. He greeted me in a washed-out, almost incomprehensible voice. He was happy to see me. He asked me if I wasn't disturbed at how he looked: His face was swollen and lopsided. The corners of his mouth drooped. Metastases had infested his throat and chin.
After a long pause, I replied with a rather heavy heart: "You can probably see that I'm shocked and it's not easy for me to look you in the face." I asked him: "What's the worst thing about it for you?" Since talking was very difficult for him, he wrote his answer on a piece of paper. He had a smile on his face and, despite his distorted voice, he told me about his greatest wish: "I want to be there when I become a grandpa. The delivery date is in April." What a touching moment for me!
Wound care steps
I explained to Berner the steps in which his dressing would be changed. The old dressing was gently removed. I warmed up the wound irrigation solution and checked whether Berner could handle it. My first choice was the Octenisept antiseptic. He felt a burning sensation on his skin at the test site. I then decided on a mechanical, atraumatic wound cleaning using polyhexanide antiseptic. The ulcerating tumor and surrounding metastases were irrigated with Prontosan and carefully swabbed.
I avoided unnecessary irritation and friction, since this could have caused bleeding and that could have caused anxiety. To prevent the dressing from sticking to the wound, I tried out several spacer fabrics until I found one that did not stick to the edges and bed of the wound.
For eliminating the smell, a 2% chlorophyll solution proved effective. It was important when placing the dressing to make sure the fixing material was applied without tension and without constriction. Fixing the dressing with a soft gauze bandage didn't go well, as Berner felt strangulated and uneasy: "I'm not getting as much air, it's constricting me." We then tried tape. For some time, it worked very well until itchiness and redness set in. After switching to silicone tape, his complaints vanished.
Hubert Berner died a few weeks later. His heart's greatest desire - to see his first grandchild - would no longer come to pass. The tiny new arrival came into the world a few days after Berner's death.
About Anke Kayser
Nurse and German Diabetes Association adviser Anke Kayser is trained as a wound specialist and wound care therapist with Initiative Chronische Wunden (ICW), an association specializing in chronic wound care. She works in wound consulting at the Heinrich Braun Hospital in Zwickau. One of her specialties is the palliative care of wounds caused by ulcerating tumors, metastases or bedsores. In 2011, Kayser and her colleagues won 1st Prize at ICW's German Wound Prize for implementing expert standards of care for people with chronic wounds. Since 2011, Kayser has also been sharing her expertise as an lecturer.
More information about palliative wound care can be obtained from:
Palliative Care Department, B. Braun Melsungen AG
Contact via editor's e-mail: firstname.lastname@example.org