Here at The Mesothelioma Center, we work one-on-one with mesothelioma patients and their families, and over time, we’ve been asked almost every end-of-life question in the book.
Unfortunately, many mesothelioma patients are diagnosed in the very end stages of their disease. This forces families to confront difficult questions that a matter of months ago, they had no idea they’d be considering.
Halcyon Hospice has graciously allowed us to share a few of our most commonly asked questions. Below, we address three end-of-life questions that mesothelioma patients and their caregivers often bring to our patient advocates.
Should we travel to a national specialist or stay local?
Mesothelioma isn’t like other, more common cancers. Because there are just 3,000 cases diagnosed each year in the United States, there aren’t many oncologists who have experience treating it. As a result, patients are often left wondering whether they should pack up and travel to one of the acclaimed experts, like Brigham and Women’s Hospital in Boston.
This one is certainly dependent on several factors. We advise patients to consider:
- Their ability to comfortably fly, drive or otherwise travel to a hospital in another city or state.
- Their insurance company’s willingness to cover out-of-network treatments or specialists.
- Their specific diagnosis (for instance, pleural mesothelioma vs. mesothelioma of the peritoneum), and the nearest center’s ongoing success rate for treating that type of cancer.
Many patients have found that an expert provider improved their prognosis in ways an inexperienced doctor did not. However, we know that travel isn’t always practical, especially when dealing with the painful later stages of mesothelioma.
Should we continue pursuing curative care or opt for palliative procedures?
When your doctor tells you that you’re not responding to chemotherapy, or that you’re not a candidate for surgery, you generally have two options:
- Ask for a second line of curative therapy, such as a reduced dose of single-agent Pemetrexed or,
- Opt to switch to less or non-aggressive symptom-management therapies, such as palliative or hospice care.
Naturally, this is something you’ll want to discuss with your family and your care provider. This is a highly personal decision, and every patient responds differently to various treatment regimens. Some have even survived more than a decade with natural regimens alone. Consider reading stories from other mesothelioma patients, and think the decision through carefully. Then find an oncologist who will respect your choice.
How should we handle finances?
Dealing with bank statements and insurance issues in the midst of an illness is never fun, and it’s an additional stressor when it’s part of end-of-life planning. Thankfully, there are several resources to help mesothelioma patients cope with these challenges.
If you – like many other patients – developed your cancer as the result of military asbestos exposure, your VA branch may offer funeral payment assistance and will planning. Our Veterans Department can even help you apply for those services.
Alternatively, hospice social workers like the ones at Halcyon can help you write directives with your official wishes. They can guide you through the various aspects of financial planning – from allocating business assets to distributing real estate – which allows you to stress less and focus on enjoying your time with your loved ones.
As always, we’re here to guide you through any difficult parts of your journey. Our patient advocates are on call seven days a week to give free advice about medical and legal options. Feel free to call us if there’s anything we can do to give you peace of mind about your choices.