While administering medical care, filling out associated paperwork, and discoursing with patients, how often does one pause to think about the meaning of this word: treatment?
Its functional definition has a wide-reaching influence in the realm of healthcare. It comes into play when patients are weighing the risks of a potential new intervention, or tolerating the side effects of their current regimen. Additionally, conflicting viewpoints of its meaning create friction between the people living and working on different sides of the provider-patient relationship. Patients who sense this tension are seeking reasonable ways to voice their needs in a medical setting.We can honor their faith in healthcare providers by gaining a thorough and accurate understanding of their point of view.
With the pace and volume of a busy hematology clinic, this task can seem impossible. After all, the experiences and conclusions drawn by patients vary widely. In an effort to better gauge the perspectives of people living with Sickle Cell Disease and their loved ones, the Food and Drug Administration held a Public Meeting in February 2014. This gathering provided a forum for people directly affected by the disease to speak about their daily challenges and give direction to regulators, the pharmaceutical industry and clinical researchers.
Specifically, meeting attendees and participants who joined via webcast were grouped by age and asked to speak about the following aspects of their health and medical treatment:
- How does Sickle Cell Disease affect my daily life?
- How do I treat the symptoms of this disease, and what impacts do those treatments have?
- What factors are important in the development of future therapies for Sickle Cell Disease?
The knowledge shared in this forum directly relates to the question posed in the title of this article. Comments and survey responses of the hundreds of Americans who revealed their experiences and hopes for the future are compiled in an FDA publication titled “The Voice of the Patient: Sickle Cell Disease.” A PDF version can be directly accessed by clicking the preceding link.
The unifying sentiment among participants was that negative interactions with health professionals often contributed to negative health outcomes. Several people shared moving stories like symptomatic carriers being denied treatment in the clinic; or isolation from peers and family members who couldn’t understand them. Conversely, there were also success stories of patients who felt welcomed as partners helping to work toward their health goals. Another critical takeaway is a lack of communication from care providers on relevant clinical trials for Sickle Cell patients, many of whom expressed a keen interest in participating.
It is my experience that, just as temperature and altitude are environmental factors relevant to this population, a compassionate atmosphere will contribute to wellbeing. Many clinical practitioners are aware that emotional stress is a common trigger for pain crises although the biochemistry underlying this link is not clearly understood. A renewed focus on the profound value of even small actions to preserve the dignity of a
person experiencing an episode of poor health is critical while we move closer to the date that improved therapies are widely available for Sickle Cell Disease.
Pole ni dawa: “Concern is like medicine” – Swahili Proverb