For seniors, there’s only one thing worse than receiving a sudden, serious medical diagnosis: It’s when your spouse gets the diagnosis.
You’re just as scared and stunned. But you’re also on the outside looking in, a spectator as your loved one takes a direct hit of grim news.
It’s hard enough when the diagnosis involves a degenerative disease such as dementia or Parkinson’s. But it’s even tougher when your spouse faces an immediate health threat and must get surgery or other invasive interventions right away.
Ideally, you would maintain your composure and tackle the tasks at hand with a minimum of fuss. You’d quickly get a second opinion from a top specialist, reset your priorities on the fly and enlist help from friends and family.
But reality is rarely that simple.
“You’re in the vortex of a tornado and everything is happening to you,” said Cindi Gatton, vice president of healthcare advocacy at Caribou, a Miami-based healthcare software provider. “You don’t have a lot of time to get your head around it and think about next steps.”
Of course, you’ll offer emotional support to your mate. But don’t stop there. Ensure that your husband or wife sets up an account on their physician’s online portal.
“The old way of calling your doctor and getting a return call isn’t happening the way it used to,” Gatton said. Medical practices typically respond far more readily to questions sent through the portal.
Through the provider’s portal, you gain access to medical records (lab results, diagnostic tests, etc.). You’ll need those records when your spouse seeks a second opinion.
How do you identify the best second-opinion specialist, especially when the clock is ticking and you don’t have months to find the best of the best?
Start by asking your spouse’s current medical team for guidance. Contrary to popular belief, many practitioners are comfortable offering a referral to one of their esteemed peers. They usually treat it as a perfectly normal and reasonable request.
Advances in telemedicine allow you to broaden your search for a second opinion. First, use websites such as Medscape and Pubmed to gather names of researchers who have published articles on a particular medical condition. If these researchers also see patients, explore setting up a virtual appointment.
When you accompany your spouse to medical appointments, bring a notebook and your fully charged phone.
“Ask the provider first if you can record the conversation,” said Ailene Gerhardt, an independent board certified patient advocate in Brookline, Mass. “Most providers will welcome that [request],” as it tends to reduce misunderstanding and produce better patient outcomes.
In any case, take detailed notes. Politely interrupt to ask the doctor to translate medical jargon to plain English.
Gerhardt also suggests that whenever you accompany your spouse to see a provider or visit the hospital, you should bring a folder with a written summary of the patient’s health history, names of all medical providers and an updated list of medications (and who prescribed them).
“Having it in your hand is helpful,” she said. Don’t assume that every provider who enters the room will be able to tap a button on their touch screen and instantly see the patient’s electronic health record.
When a doctor delivers jarring news about a serious medical diagnosis, emotions can interfere with attentive listening. Initial disbelief can cloud your ability to digest what you’re hearing.
Gerhardt recommends asking two questions:
Given the diagnosis, what are some reliable resources for us to learn more?
What are our options going forward?
As the physician runs through the options (treatments, surgeries, etc.), try to prioritize them based on likelihood of a successful outcome. Number the options, starting with the most promising one, and confirm with the doctor that you’re accurately capturing what he or she just said.
If you’re high-strung, watch out. Beware of ratcheting up the anxiety level and adding to your spouse’s agitation.
“When someone’s crying and upset, you don’t want to get very upset,” said Bonnie Sheeren, a Houston-based independent board certified patient advocate. “It’s very hard to think straight when emotions take over.”
It’s only human to share in the shock of receiving a grim diagnosis. But once you recover from the shock, act as a calming, clearheaded ally.
Sheeren advises spouses to let their husband or wife express emotions freely. Listen without judgment. Don’t jump to conclusions or declare what they should (or should not) do or feel.
“Don’t assume you know why they’re upset,” she said. By allowing them to work through what they’re going through, you can gain a better understanding of their concerns and fears.
Another way you can make yourself useful, Sheeren says, involves establishing clear lines of communication so that family and friends get the same information at the same time.
“You want to have one point person,” she said. “You don’t want all of your adult children calling providers.”