APPs can temper expectations of palliative intervention for malignant bowel obstruction
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Malignant bowel obstruction is a common and serious complication that occurs most frequently in patients with advanced gastrointestinal and gynecologic cancers.
It is estimated to affect approximately one-third of all patients with gastrointestinal cancer and more than half of patients with ovarian cancer.
Malignant bowel obstruction (MBO) often signals the approach of the end of life, with median survival of about 4 months. In addition, MBO is associated with a high physical symptom burden, including refractory nausea, vomiting and abdominal pain. Patients with MBO are unable to eat or drink, experience psychosocial distress, and have poor health-related quality of life.
APPs play a crucial role in helping patients to understand the outlook associated with MBO and supporting them throughout end of life.
Use of drainage PEGs
Placement of a drainage percutaneous endoscopic gastrostomy (dPEG) is a palliative intervention for inoperable patients with MBO who fail medical management. The gastrostomy tubing is attached to a drainage bag that needs emptying several times a day.
Data indicate that the dPEG usually provides symptomatic relief for these patients. However, this procedure does not enhance the likelihood that the patient will be able to receive further cancer-directed treatment, nor does it extend the patient’s life expectancy.
For instance, we evaluated data of 125 patients with metastatic gastrointestinal cancer who received dPEG for MBO. Results, published in JCO Oncology Practice, showed only 15 of the 117 patients who were discharged received additional chemotherapy, which rarely prevented disease progression. Median time to death for these patients was 37 days (95% CI, 29-45), with a 6-month OS rate of 3.7%.
Most patients reported good understanding of the advanced nature of their disease, but few were accurate about their overall poor prognosis.
Although some patients may be able to tolerate small amounts of liquid or food by mouth after placement of the dPEG, they cannot resume full oral intake, and their intake by mouth does not contribute meaningfully to any improvement in their hydration, nutritional status, weight or strength; the dPEG drains what the patient drinks and eats.
There is a small risk for procedural complications from placement of the dPEG, and patients may experience continued discomfort and/or other burdens after the procedure, including additional days in the hospital.
Managing patient expectations
There is evidence to suggest that, in general, patients are very likely to overestimate the benefits and underestimate the harms associated with medical interventions; our clinical experience demonstrates that the same is true for our patient population.
Although patients are generally informed of the potential risks of this intervention and the potential benefits of greater comfort, many misunderstand the main goal of dPEG placement and have unrealistic expectations of its outcome.
Some patients seem to believe that the dPEG will make it possible for them to receive more cancer therapy, resume full oral intake with digestion, improve nutrition and strength, and/or prolong their survival. Such patients can feel disappointed, angry, regretful, distressed and depressed as they confront the discordance between their expectations and the reality of progressive deterioration.
Patients may also express regrets about their decision-making and dissatisfaction with their clinicians. These stressors can add to the existing burdens of living with advanced cancer.
APPs can help align patients’ expectations with their future experience and support them to manage challenges to come through effective communication and shared decision-making. We have a responsibility to advocate for and provide exceptional medical care, communication and teaching for patients with cancer.
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