Making sure that patients have the information they need to weather storms should be viewed as another patient teaching function.
Hurricanes, tornadoes, floods, and other natural disasters can put a person out of their home environment and away from their cancer treatment teams for an extended period of time. Making sure that patients have the information they need to weather these storms should be viewed as another patient teaching function.
“After Hurricane Katrina, many cancer patients had their lives totally disrupted,” said Diane Blum, MSW, executive director of CancerCare in New York City. “They were moved from their homes and sent to other cities for extended periods of time. The challenge we found during that time was how to help a patient continue their treatment in a time of crisis.”
Access to medical records in a timely manner was a major concern identified. This can lead to lack of important information on what treatments were currently being used, the dosages, relevant blood work and other testing, and medications.
“A sample of Katrina victims evacuated from New Orleans to Houston found more than 40% needed some kind of prescription medicine for maintenance,” says Steven Rottman, MD, professor of emergency medicine and community health sciences and director of the Center for Public Health and Disasters at the University of California at Los Angeles. “A large number were not able to get their needed medications.”
An additional impediment to continuity of care in disaster situations is the fact that oncologists themselves may very well be impacted by the emergency. Relocation, damage to office facilities, and lack of electricity to run computerized information systems are all possible results of any emergency situation.
To address these issues, the American Society of Clinical Oncologists (ASCO) and the National Cancer Institute (NCI) developed a wallet card that they hope will be useful to patients in the event they are not able to reach their medical team. The card contains the patient’s name, diagnosis, treating physician and current treatment regimen. It also includes the address for ASCO’s website and the NCI cancer information service.
“Hopefully the physicians will be able to update their listings on both websites with current contact information to help facilitate communication,” says Blum. “In the immediate aftermath, space on the back lets the medical staff give a brief overview of the patient’s care in case they are treated by a doctor not familiar with their diagnosis or treatment.”
Both experts interviewed agreed that disaster planning should be an important patient teaching function. The first step is to look at what types of emergencies are likely to occur in your area and their likely outcomes.
“In an earthquake, for example, we may very well lose medical buildings, hospital capacity and other infrastructure,” says Rottman. “This means that access to care by those who survive initially is likely to be limited. Many of these issues could go on for a long time with people caring for themselves for extended periods. Plus, physicians have no immunity from the same impacts experienced by their patients.”
Hurricanes and earthquakes may cause destruction over large geographic areas. Floods and tornadoes might have much smaller footprints, but still cause the same kinds of disruption. Damage to offices, medical records, or hospitals can occur in any type of natural disaster. Even small floods may cause patients to be relocated outside of the area to family and friends.
“It is important for clinicians to be aware of what may happen in their area,” says Rottman. “Then they need to think about what the immediate and long-term impacts may be on their patients and work with them to formulate their plans.”
Keeping some sort of up-to-date record of their treatment in a safe and easily accessible place should be an important part of any patient’s disaster planning. While the ASCO/NCI card is a start, Ms. Blum suggests more information is often needed.
“If someone is being treated actively, encourage them to keep an ongoing record of what is happening to them,” she says. “Perhaps a diary. If the practice uses a patient education form that includes a summary of treatments, this would serve two very important purposes.”
The question the oncologist needs to answer and convey to the patient is basically, what they should know about their illnesses and treatment plans if they get displaced, separated from their medications, or if medical records are not available.
“I want the patient to be able to advocate for themselves in an emergency,” says Rottman. “They need to know their disease, how it is being managed, and what they need to do take care of themselves. The burden should be on the practitioner to find a mechanism to make sure their patients have critical medical information in a form sufficiently portable so all they have to do is grab it and go. Clinicians should ask themselves what they would want the patient to bring along if they were asking you to take over their care.”
Kurt Ullman is a freelance health and medical writer based out of Indianapolis.