A few years ago, I worked with a patient close to 100 years old. She had diabetes for most of her adult life, which affected circulation in her foot. Without circulation to her foot, it turned black, and then her calf turned black.
In this stage of deterioration, no one is talking about treating metabolic disease; often, patients even stop checking their blood sugar. But, the impact of metabolic disease on the body complicates end-of-life care, with wounds as a factor. That means many with metabolic disease endure the excruciating burden of festering wounds, robbing them of dignity and comfort as they face their final days.
For this patient, dressing changes were so painful that we had to figure out how to minimize them to keep her comfortable because healing was no longer an option. Soon after, she went into hospice care.
However, in similar situations, even hospice nurses who know patients are in there for palliative reasons feel they need to heal a wound like this. The gap between palliative and curative wound care creates tension in hospice systems amid myriad challenges.
Today, our nation faces a meteoric rise in metabolic disease that is showing up in end-of-life care in a devastating way. The increasing prevalence of metabolic disease combined with an aging population and a critical shortage of nurses is coalescing in unmanageable, painful wounds.
As a nurse with more than two decades of experience in hospice care, I have witnessed the distressing consequences of neglecting proper wound care during this critical stage of life, and the rise in metabolic disease amplifies this issue. That’s why I now work as head of care delivery for the Wound Company, which works with wounded patients across all care settings. In my work, I have discovered that we need a two-pronged approach to ultimately decrease the incidence of non-healing wounds during the end of life journey: (1) interventions to manage metabolic disease earlier in patients’ lives and (2) system-wide education to get everyone on the same page about palliative wound care. The prospect of patients experiencing a dignified death depends on making these changes.
Metabolic disease — characterized by conditions such as diabetes and obesity that lessen patients’ bodies’ abilities to heal themselves — often leads to wounds that can create conflicts between families and patients. Some years ago, the adult child of a patient with a necrotic foot asked for a wound consult. I saw the patient, but there was little I could change about the course of treatment beyond minor tweaks. The wound worsened, and the patient’s child insisted on another consultation. At this point, the parent’s whole foot was dead, and there was nothing my colleagues and I could do but ease her pain.
Instead of continuing in the palliative route, the patient’s kin took her out of hospice and checked her into the hospital, saying: “I’m not going to let my mom die with a rotten foot.”
Directing a loved one’s end-of-life care is an excruciatingly painful and emotionally taxing process. But the best thing for this patient would have been to continue on the palliative route.
However, I understand why this child, trying to do best by their dying parent, made the decision. Metabolic wounds — and wounds generally — are impossible to ignore and distressing for everyone in the room. All too often, I have seen patients with a long history of metabolic diseases such as diabetes develop wounds from arterial insufficiency (a lack of blood flow to the lower extremities) or osteomyelitis (a bone infection under the wound itself). These wounds require painful dressing changes. Beyond this, patients’ legs ache constantly, often leading to difficult-to-manage neuropathic pain.
The arterial wounds eventually decay and develop extensive amounts of dead tissue. The foul odor caused by these wounds permeates a room, and you can smell it immediately, even before removing the dressings. Devastatingly, these wounds can go on to become contaminated with maggots. I once saw a black toe fall off in the dressing.
In addition to causing suffering for both patients and families, these wounds also make nursing much more challenging. The number of touch points a specialist needs increases significantly, straining existing staffing challenges. But there are ways to address this problem.
To mitigate the issue at hand, we must first advocate for earlier interventions in metabolic disease management to lessen the burden on health care systems, such as educating patients when they are first diagnosed about the long-term complications if they don’t manage their blood glucose, stop smoking, improve their nutritional health, and/or work to reduce their weight. While this won’t work for everyone, either because their disease is more complicated or because they are unable to make these changes, the result will still be that fewer patients go into hospice due to non-healing wounds, and fewer patients in hospice will develop these excruciating wounds.
More importantly, by managing metabolic disease earlier in life, we can increase the likelihood of a dignified end-of-life experience for patients not characterized by rotting wounds.
Second, we must work to increase education among caregivers (patients, family members, and nurses in SNFs and hospice) about palliative wound care during this challenging transitory phase of life. Beyond conflicts between patients’ loved ones and care staff, conflict exists between skilled nursing facilities and the hospice agencies elected to manage palliative care. Skilled nursing facilities often encourage more curative measures due to a lack of knowledge of the goals of palliative care or the fear of a negative outcome during a regulatory survey.
Hospice wound care must prioritize the patient’s comfort over healing, and pressures to aggressively treat these wounds are contrary to what’s best for the patient’s overall suffering. For instance, many hospices do not have certified wound care nurses contracted or on staff. It’s crucial to change that.
Recently, I was able to simplify and reduce the frequency of dressing changes for a patient, minimizing her overall pain. Her son said that the change brought emotional comfort to him and physical relief to his mother — something I wish could take place at hospices every day.
Julie Roskamp, B.S., R.N., CWOCN, is head of care delivery at the Wound Company.