Recently, my wife paged me during a clinical meeting. “Call Mom urgently!” After negotiating the practical challenges of placing an international call from New York to South Africa while trying to guess what the crisis was, I was told my dad was in the operating room. His surgeon had just emerged to say that my father had cancer, which had spread to the liver (bad) and the lining of the abdominal cavity (worse). There was “nothing to be done.”
Three months earlier, I walked the golf course with my dad, who was still working full-time in his mid 70s and with no apparent health issues! Now the nightmare of every immigrant who left loved ones behind was my reality.
This scenario is not unusual now as we live in a mobile society. Our parents, children or relatives who may be far away from you might face serious illness and need help. Here are some tips on how to manage the crisis:
* Manage yourself. Stay calm and prioritize. Colleagues and family will respond to your request for urgent practical help so that you can work simultaneously or cover your commitments and hold the fort for you at home. They can also help you locate resources to draw on.
* Manage the family. Smaller families, spread out in different places coupled with the stresses of modern life all reduce the chance that there is someone in the family who is completely free to assume the role of caregiver. One family member should, however, assume a leadership role and can act as a spokesperson transmitting information to the rest of the family, as well as to the doctors.
* Gather information. Start to compile lists about the diagnosis and the planned course of treatment, as well as the prognosis. Are there alternatives to the proposed treatment? Clinical trials for this disease? The Internet is a fabulous resource for information, but even as a physician who speaks the language of “Medicine,” information on the Internet is unfiltered and can be very confusing. Start with reputable sites like the American Heart Association (www.heart.org), American Cancer Society (www.cancer.org) or the National Institutes of Health (www.health.nih.gov).
* Weigh the Information. Well-meant platitudes or the experience of someone’s cousin or nail lady is not necessarily relevant to your relative’s situation. When I had a rare and life-threatening cancer myself, I was told by an acquaintance that if one had to have a cancer, mine was the sort one would choose. (So wrong!) Enlist help from someone who understands the technical language to interpret the results of your searches. The family caregiver alliance is a very useful resource (www.caregiver.org).
* Talk to the doctor. Once you have permission from the patient, an introductory phone call can be useful. Email is especially useful for back and forth communication and used by most physicians especially if distance and time zones are an issue. When you travel, try to see the patient’s doctor face to face. Have a prepared list of written questions and get someone to accompany you to help record answers and impressions and supplement your questions. Try to set up a timeline and goals for treatment so you can plan future trips.
* Talk to the other care providers. Nurses in both hospital and outpatient settings, physician assistants and nurse practitioners are all invaluable sources of information about the treatment course and practical issues. Build a relationship with them, as they will undertake much of the patient care. Again, have the patient make his or her wishes clear that you can have access to medical information.
* Consider practical matters. Set up a plan for care including transportation, nutrition, and exercise (physical and mental). Ask for and accept specific help from friends, family and others where you live and where your loved one is. People will want to help, but you need to be specific with each offer (walk my dog/fetch me from the airport/find me the name of a specific specialist for a second opinion). When far away, religious community leaders can be a useful resource.
* Plan for emergencies. In the worst case scenario, a call to 911 can result in a patient being deposited in the emergency room of the nearest hospital where no one knows the patient history and time might be wasted and painful tests repeated unnecessarily! Avoid this and create an emergency packet that can go with the patient. Include a list of essential phone numbers and names, a list of medicines and allergies, a list of doctors and their phone numbers, and a timeline of the medical history.
* Pace yourself. Remember to conserve your own health. I tell my patients’ relatives that major illness is not a sprint event but a marathon and you need to pace yourself accordingly. Try for a healthy diet, maintain or increase your exercise level (to counteract the stress and all that sitting in waiting rooms), and try to get enough sleep and rest. Get help from your own doctor if needed.
Darryl M. Hoffman, MD, is a Cardiac Surgeon at Beth Israel Medical Center.