“The majority of people who are hospitalized are scared, confused, vulnerable and clearly not at their best — and that’s before we give them the hospital gown to wear,” says Dr. Adam Myers, chief operating officer and chief medical officer for Texas Health Physicians Group based in Arlington, Texas, and a former member of American Hospital Association’s Committee for Clinical Leadership. “The ability to communicate is often limited by their health status as well as just the fact that they’re pretty unnerved, and frankly at the time, this is all happening when the stakes probably couldn’t be much higher.”
Nor is communication always seamless between health providers in the whirlwind that can proceed from the emergency room to a patient being admitted into the hospital. That’s where family and friends advocating for a patient can be a big help, experts say, providing not only moral support but helping patients weigh important, and often difficult, treatment decisions, as well as alerting clinicians to concerns or questions as they arise. “If your loved one is well enough to communicate and speak for themselves, count yourself blessed — that’s not always the case,” Myers says.
To add to the challenge, frequently caregivers — like members of the Sandwich Generation, who are taking care of aging parents and kids — have other obligations, and time is of the essence. They can’t be at the hospital 24/7 and have fewer opportunities to speak with clinicians.
“One of the most challenging things is when you don’t know when the doctor’s coming back in and you’re sitting there waiting and waiting and waiting,” says Shelley Fuld Nasso, CEO of the advocacy organization National Coalition for Cancer Survivorship. “I know some of that can’t be helped.” But experts say it’s important to ask when, for example, a doctor providing care will be around, and to schedule accordingly so you can be there for status updates and to talk about medications or other care questions. Especially if there’s a discussion that needs to happen regarding a treatment plan, arrange your schedule to be there for that with your loved one, Fuld Nasso says.
If the concern is urgent, call the doctor’s office or ask a nurse to page the doctor to schedule a meeting, the NCCS advises as part of the organization’s tips to improve communication with the doctor while in the hospital. Here are other ways to stay informed and in touch with health providers delivering care to you or a loved one at the hospital:
Write down questions in advance. Yes, you’ll likely forget questions or have others come up later; but the point is to be prepared, so that you can make the most of each conversation. The NCCS encourages patients or their loved ones to have a notebook handy and take notes and jot down questions. Think details — such as getting the particulars of a diagnosis and the benefits and risks of different care options — and about the big picture, as well, like what might be the long-term effects of treatment. “The best thing that patients and families can do is be prepared to talk about what their goals are, and also to understand that goals change,” says Gwen Darien, executive vice president of patient advocacy at the National Patient Advocate Foundation.
Lisa Rice of the District of Columbia, who goes with her 85-year-old mother to all doctor’s visits and advocates for her in the hospital, as well, keeps that big picture focus. Her mother, Lillian Rice, has been diagnosed with Alzheimer’s disease, suffers from heart disease and is a two-time breast cancer survivor. “I work with all of my mother’s doctors toward one goal: a life with dignity and minimized pain and confusion,” she says. “Sometimes, that means asking questions we might not otherwise: Why continue this med (ones she’s been on for years)? Is this useful at an advanced stage?” Or it may be asking whether a reduced dosage would be beneficial.
When Rice’s mother went to the hospital recently for a mastectomy, or breast removal surgery to treat her cancer, she talked with the surgeon about her mother’s end-of-life wishes not to be rescued if she went into cardiac arrest. “He stood with me in making sure the anesthesiologist understood that, if my mother coded on the table, there were no rescue attempts to be made,” he says. Ideally, Myers recommends the patient will already have a packed hospital bag ready to take with them that contains everything from patient records, a list of medications, power of attorney documentation (if applicable) and a living will — to make clear a patient’s wishes, if the patient has one, which he recommends.
Record your conversations with health providers. “Ask permission first, but tape the conversations you have with the providers — specifically the ones where you’re getting instructions and information about what to do next,” Myers says. “There’s only so much that you can remember.” If you have a smartphone, you can just use the recording function to do this.
Check on options to communicate with the doctor away from the hospital. You won’t always have the luxury of speaking face-to-face. Fortunately, it’s possible now to communicate with many health care providers via email or through secure patient portals set up by health systems and doctor’s offices. Or it may be an option to speak by phone. Fuld Nasso notes that sometimes, if a particular doctor is out, another health provider may still be available to answer questions. Generally speaking, numerous health providers — doctors and nurses — are routinely involved in a patient’s care in the hospital; so you have options. “I think one of the things to remember is there’s a health care team,” Darien says.
Patients or their loved ones can also speak to the hospital social worker or patient advocate, who can help navigate the system for them, she adds.
Frequently, it’s when a patient first arrives at the hospital, as well as anytime treatment decisions are being made and right before discharge, experts say, when it’s most helpful to have a family member or another caregiver present to advocate for them.
“It’s overwhelming when you’re in the hospital, and you’re poked and prodded and things may change in your care, and particularly if you’re a cancer patient, you’re already dealing with such a difficult disease that it’s really hard to keep all the information straight,” Fuld Nasso says. That’s all the more reason for patients or their loved ones to ask early on the best way to reach clinicians when you’re not able to be in the same room. “You always think of things after the person has left the room that you wished you’d have asked — whether you’re talking about an in-person office visit or in the hospital,” she says.