The Other Facts of Life
The talk you must have with your aging parents before a health crisis
If you are one of the estimated 10 million people over age 50 caring for elderly parents this year, consider a different kind of New Year’s Resolution: have “The Talk.” You may have just spent quality, holiday time with them (and saw firsthand how quickly they may be aging). Pick a time for a serious discussion about their health care—followed by some serious paperwork to make those decisions stick.
Why now? Why not? Ask yourself what you would do if the unthinkable happened – a car accident, a stroke – and your parents couldn’t communicate. Would you know what your parents would want you to do? Would their healthcare team even speak with you?
It is a troubling scenario, but all too common, says Maureen Beck, RN, MSN, a gerontological nurse practitioner and co-director of the UT Center for Healthy Aging, part of the UT Physicians clinical practice at The University of Texas Health Science Center at Houston (UTHealth).
“All it takes is one fall for a parent to end up in the hospital, confused and unable to make decisions,” she says.
Patients who prepare advance directives are more likely to receive the care they prefer, according to a 2010 study published in the New England Journal of Medicine. But unless you have signed the correct documents ahead of time, you might not be able to communicate with your parents’ healthcare providers at all (the same is true for children 18 and older)—much less make decisions about their treatment.
“I don’t think the average person my age understands the position they are in without having this conversation with their parents before there’s trouble,” says Karen Krakower Kaplan, director of communications at UTHealth and editor of HealthLeader. She also is the long-distance caregiver to her 89-year-old father in Arizona.
‘It was a real education’
Kaplan, 57, confronted barriers to communication firsthand when attempting to speak to her father’s surgeon about his candidacy for surgery on an abdominal aortic aneurysm. Kaplan’s father has dementia and cannot make decisions for himself. His wife, also 89, needed Kaplan’s assistance, and quickly.
“She needed me to talk to the surgeon and I needed to talk to the surgeon,” Kaplan says. But when the two spoke by phone, the conversation was all too brief. The surgeon – who barely knew her father and certainly did not know his daughter – declined to speak to Kaplan about her father’s condition because that information was private and protected under the Health Insurance Portability and Accountability Act (HIPAA). “Even though the surgeon had my stepmother’s verbal permission, I could not ‘prove’ who I was over the phone.”
Stymied in her attempts for information, but determined to avoid a repeat of her conversation with other doctors, Kaplan flew to Phoenix, picked up her stepmother and proceeded to visit each of her father’s specialists – and her stepmother’s as well. They signed paperwork at each office allowing Kaplan to communicate openly about her father’s health and gain necessary permissions for her stepmother’s eventual needs. She says the experience was “a real education.”
Frustrating as it was, Kaplan says she understood. “Here at UTHealth, we are trained to fiercely protect patient information and privacy, so, I understood the surgeon’s dilemma. I faulted myself for worrying more about my parents’ potential bruised dignity than having the tough talk and getting paperwork in order before a crisis.”
Talking with your parents about their health care is a sensitive issue and one that should be handled with care.
“They are still individuals with rights and they may not want their children involved. It is hard when children need to become more responsible for their parents, because parents often don’t think they need it,” Beck says, adding that it is important to talk with parents about their health care and to have them sign advance directive documents early while they are still mentally able to make decisions.
If you encounter some resistance or reluctance from your parents when broaching the conversation, emphasize your desire to give them a say in making their own healthcare decisions. If they have an accident, or develop dementia, they no longer will be able to make those decisions. You will have to make decisions for them. The correct paperwork will allow you to honor their wishes and help manage their health care.
That paperwork also comes in handy in non-emergency situations, especially for children who are taking care of parents who live far away. Beck gives the example of a patient with a hearing loss who communicates with Beck through her daughter. The patient has a HIPAA authorization form and “medical records release form” in her chart, allowing Beck to talk with her daughter over the phone.
So what kind of paperwork should you keep in your pocket or purse in case of parental emergency? Unfortunately, there is no one-size-fits-all list for children of elderly parents.
“Each healthcare institution has its own way of implementing HIPAA,” says Christina Solis, JD, privacy officer for UTHealth. Legal advance directives also vary from state to state. “I would tell people to always be prepared.” In other words, if your family is spread across the US or resides in other countries, do your homework before trouble strikes.
The following documents will help:
- HIPAA authorization – allows your parents to designate who can communicate with their healthcare providers.
- Durable power of attorney or Health Care Proxy – lets your parents designate who will make healthcare decisions for them in case they are incapacitated. “Somebody needs to be there for you, whether in person or long distance, and that’s definitely when you need durable power of attorney for health care,” Beck says.
- Living will – indicates what kind of care your parents want at the end of life. This includes decisions about pain management, surgery and whether they wish to be kept alive by mechanical breathing, tube feeding or resuscitation.
- Durable power of attorney for property – similar to the durable power of attorney for health care, this document allows your parents to designate a person to handle financial affairs when they are incapable of doing so. This is important because if your parents are incapacitated, they will also be unable to pay their medical bills, mortgage, etc.
- Declaration of Guardian in Event of Incapacity – designates who your parents would want as their guardian if they are incapacitated and unable to make decisions.
An attorney can obtain and prepare these documents for you or you can also find them online. In Texas, the Texas Hospital Association offers free, downloadable advance directives. You can get a HIPAA authorization form from your parents’ doctors. The American Association of Retired Persons (AARP) offers links to advance directives documents for each state. Also, some organizations, such as the Gulf Coast Legal Foundation, provide free or reduced cost legal aid. Search online using keywords “Legal Aid” for resources in your area.
Once you have the paperwork, keep it with you at all times, so you’ll be ready in an emergency or healthcare situation involving your parents.
“You never know where you will be when you get a phone call about your mom or dad being in the hospital,” Beck says. “You may find that no one is going to talk to you if you don’t have that paperwork already signed.”