If you're a caregiver for a loved one, you have a lot on your plate. But one of the most difficult tasks — especially if they have any health conditions — may be figuring out how best to communicate with their medical team.
Here's how to go about taking over the medical care of an aging parent or other loved one who can no longer make their own medical decisions.
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1. Do Some Prep Work
One of the most important things you can do is make sure all your loved one's legal affairs are in order while they're still healthy and able to make sound decisions, says Robert Gasparro, an elder law attorney in Haverford, Pennsylvania.
That includes having them choose a health care proxy, otherwise known as power of attorney for health care.
Once they've decided, have a lawyer help them create a legal document that allows the proxy to talk to their loved one's doctors, nurses and other members of the care team, as well as read medical records, in the event that the person can no longer make medical decisions for themselves.
Sometimes, your loved one will also want to create a living will, where they list out specific medical treatments they may or may not want (for example, a "do not resuscitate" order). Some states have a standardized form for both, while others allow you to draft your own, Gasparro says.
Another option is to use Five Wishes, a document that's legally valid in most states. Whatever method you choose, it's always a good idea to have all forms reviewed by an attorney before signing.
Once that's done, make copies of the forms for your loved one's medical providers, so they have proof that they're authorized to speak to you. "When you're appointed as health care proxy, your responsibilities begin right away once a patient is no longer able to communicate," Gasparro explains.
If your loved one never named a health care proxy, and you disagree with a physician or hospital's plan of care, most states require that you go to court to request a court-appointed guardian to make medical decisions. That's why it's always better to have this planned out well in advance, Gasparro stresses.
2. Accompany Your Loved One to All of Their Medical Visits
If possible, you should plan to attend doctor appointments together. "This is a good idea for everyone, even people who aren't incapacitated," says Annette Ticoras, MD, a board-certified patient advocate in Westerville, Ohio. "It's an extra set of eyes and ears to make sure you're not missing anything."
Here's her suggested checklist for each appointment:
- Make sure your loved one gets all their questions fully answered.
- Make sure you both understand any new diagnoses, as well as any new medications or therapies prescribed at the appointment.
- Relay to the provider how any related medical conditions affect your loved one's quality of life.
- Assess your loved one's cognitive functioning: "If Mom can't remember what prescriptions she's on, or doesn't seem to understand what the doctor is saying to her, it may be a red flag she needs more care," Dr. Ticoras adds.
If you're strapped for time, or physically unable to be there, you can also hire a caretaker to get your loved one ready for their appointment and accompany them there.
"A doctor visit for an elderly parent, for example, can take up to five hours, if you factor in helping them dress, transporting them there, sitting in a waiting room and then taking them to the pharmacy afterwards," points out Pamela Wilson, a caregiving expert working with BrightStar Care in Lakewood, Colorado. "This way, you can just show up in person for the appointment, or even FaceTime in if you can't get there easily."
Even in the era of electronic health care records, you can't always assume members of your loved one's medical team are communicating with each other. That's why you'll need to keep track of tests, diagnoses and treatments yourself, and then share the information with your loved one's health care providers. To help, you can use an app like My Health Records.
One good idea is to bring a complete list of all over-the-counter and prescription medications, supplements and vitamins your loved one is taking to each office visit, Wilson adds. This will help medical providers spot drug interactions, and prevent an accidental doubling up of similar medications.
4. Keep Your Loved One Involved
To really serve as your loved one's health care proxy, you need to make sure you understand their values and wishes in any situation, so you can make the best decisions about their care, Dr. Ticoras says. That may mean asking them to write down any questions they have before a medical visit in advance, to make sure they're addressed by health care providers.
It also means having honest conversations with them about their condition and how it's affecting their quality of life.
"There are some people who want to do everything possible to manage a disease, so they can continue living an active life, and others who are fine with a less-aggressive treatment as long as they are still able to spend time with family," Dr. Ticoras says.
This is especially important if you are talking about hospice or palliative care. "There are some patients who don't want to continue living if it means they have to live with a feeding tube, and that's OK," Dr. Ticoras stresses. "If you're managing their health care, though, you need to respect their wishes."
5. Switch Doctors if You Need To
If your loved one's physicians don't return calls, seem rushed and distracted during appointments or dismiss the concerns of either you or your loved one, get a second opinion, Wilson advises.
"Keep in mind that if you are having trouble talking to them now, it will be even worse during an actual health crisis," she says.
If you have a disagreement with a medical provider about your loved one's treatment plan, Wilson recommends you make a separate appointment to discuss your concerns.
"The best way to do this is to offer specifics about what you know about your loved one — for example, that they responded well to a certain medication in the past, or a similar situation came up once before with others," she says. "Doctors do not deal well with emotional outbursts. They want facts and information."
Keep in mind that most of the time, both you and the medical team have the same goal: to provide your loved one with the best possible care during the last few years, or even months or weeks, of their life.
Is this an emergency? If you are experiencing serious medical symptoms, please see the National Library of Medicine’s list of signs you need emergency medical attention or call 911.