When patients are diagnosed with malignant mesothelioma, they are quickly scheduled for meetings with a wide range of specialists and support personnel. They have appointments with oncologists and surgeons, social workers and pulmonologists. They also set aside time to meet with family and friends to break the news, and may seek guidance from their spiritual advisors. But a study conducted by researchers from the UK’s Nottingham University is pointing to one other meeting that needs more attention: a meeting to discuss palliative care.
The power of palliative care
Palliative care has proven to be profoundly helpful for helping mesothelioma patients manage their symptoms, but despite its success, the researchers found that patients are not being provided this essential care as early or as often as they should be.
Speaking with more than 700 mesothelioma patients over a two-year period, the scientists found that there is a real interest in discussing palliative care early after diagnosis, and that need is not currently being met.
Mesothelioma is a disease with a long latency period: the disease spends years growing and spreading throughout the body without the patient being aware of its presence, and by the time symptoms begin to manifest themselves, it is often too late for meaningful treatment. This is not only a source of frustration, but also means that at the same time patients are being diagnosed, they are experiencing symptoms such as breathing difficulties and fatigue that are having an impact on their quality of life. They are also facing grief, anxiety and fear.
Mesothelioma patients want more information on palliative care
In light of the immediacy of these physical and mental symptoms, it makes sense for palliation to begin at the same time as diagnosis. Palliative treatments might include attending support groups and receiving counseling or it could jump immediately to pain relief, but it is frequently the case that palliative care is not offered until the patient is near death. The survey showed that after speaking to medical professionals following diagnosis, twenty to thirty percent of mesothelioma patients felt like they wanted more information about relief.
The group concluded that mesothelioma specialists need to place a greater emphasis on palliative care to address the “high level of need.”
The Patient Advocates at Mesothelioma.net can help you or your loved one find whatever kind of support you most need. Contact us today at 1-800-692-8608.