Whenever a doctor cannot do good, he must be kept from doing harm.
Talking to our parent's doctor probably wasn't something that we needed to do when our parents were in their 50s and 60s. Then, one day, we may have realized that our parents were no longer well enough to see the doctor alone or when we talked to them about their health they refused to share information or, worse yet, couldn't remember what the doctor had said. What to do? This is a complex issue. Perhaps, the most complicated thing is the issue of patient privacy and confidentiality. In many, although not all countries, the privacy of the patient is an overriding concern. If your parent has dementia and has been declared mentally incompetent, then the issue is clearer. However, for most of us who are helping care for and support our aging parents, there is more gray than black and white. During the past several years, I've spent what feels like hours in doctor's appointments with both my mom and dad. I have spent even more time talking to doctors in the hospital. Here are a few things I've learned from these experiences.
There is no substitution for being there
The statement above may sound harsh, but, in my experience, it's true. The best way to get to know your parent's doctor is to be there when a medical crisis occurs or, if you live close enough, tag along with your parent when they go to the doctor. If their health and cognitive functioning are still good, that's the best time to start. Don't wait until things have gone downhill because sometimes that can be a very steep slope. Keep it casual. Ask if your parent(s) mind if you drive them to the doctor. If they refuse, leave it there for now. Bring the subject up again in a few months. Kind of the way you present broccoli to kids. But don't leave it too long. The sooner you get to spend time with your parent's doctor(s) the longer you'll have to work on the relationship. Above all, keep things friendly and respectful and treat the doctor as part of the team, neither a god-like being nor the enemy.
In the United States, patient privacy is protected under the Health Insurance Portability and Accountability Act (HIPPA) of 1996. In theory, this act means that you can't talk to your parent's doctor without their permission. Try to get your parent's permission in a friendly way. Don't make it into a big deal. Say something like, "do you mind if I ask a few questions" before you leave for the doctor's. If your parent is in the hospital, and conscious and coherent, the situation is similar. Either way, state the fact that you'd like to speak to the doctor too, in a matter-of-fact, I'd like to help kind of way. If your parent says yes, that's all there is to it. Verbal consent is usually enough and nothing has to be signed.
There are exceptions, particularly for aging parents with dementia or other cognitive issues. My mother's doctor (a geriatric physician) has a caveat on his website that says that if the patient is unable to agree to or object to the sharing of personal health information (PHI) then the doctor will share necessary information with family members as needed. In Canada, patient privacy and confidentiality issues appear to be handled somewhat differently in each province. In Australia, things appear to be more straight forward; however, individuals may need to do some research or ask their doctor what the rules are.
Take advantage of a medical crisis
This may sound mercenary, but if your parent is sick they will probably welcome the help. I have spent many nights at the hospital with my mother. If you are in the room when doctors arrive - and make every effort to be there - then they will naturally include you in any discussion that takes place. It's best to introduce yourself. Then, as much as possible, listen to what the doctor has to say and let your loved one ask the questions. I always take notes, but, at first, it was difficult to explain why. My parents never take notes when they see the doctor; I think it's a generational thing. You don't take notes when the gods speaks, or something like that.
Get to know your parent's nurses and aides
When your parent or loved one is in the hospital, you will normally see more of the nursing team and the aides then you will of the doctors. At least that's been my experience. That's great because they have more time to answer questions. Make every effort to be patient, cooperative, and - above all - grateful to these hard working members of your parent's medical team.
What if you don't live nearby or can't come during a medical crisis?
In most hospitals, you can phone and identify yourself and explain what you'd like to know, and nurses and doctors are usually happy to help. It's important, however, to talk to your parent(s) first and get their permission: if they are conscious. Make your request low-key unless your parent is so sick that they can't talk to the medical team anyway. It's best to speak to whoever is available on the team by phone because emails may go unanswered during a crisis. If you have a large family, designate one or possibly two people as the family's spokespeople, so the staff aren't inconvenienced by too much input. If you have access to a computer, you can send updates to others via email. I have found that nurses are happy to find out whatever they can about the patient. Surprises in the hospital are not usually good ones.
Work to become part of your parent's medical team
The long haul is the important thing. You may lose a few battles, but if you are patient and strategic, you'll win the war. The important thing is to be as friendly as possible with your parent's doctor. Inform yourself so that you can ask intelligent questions. Remember, if your parents are anything like mine, they are not used to asking questions at all. Unfortunately, it can be hard to tread gently here, as you and your parents may have very different expectations about medical interactions. The best thing to do, is to explain calmly that you are asking questions because you're concerned about their health and you love them. If both of your parents are alive, they may see their medical matters as private ones and become defensive. Again, patience is the best approach. Eventually, you should be able to win your parents' trust and they will welcome your help in difficult medical situations.
More Resources on Talking to Your Parent(s) Doctor
- Improving Doctor Visits for Your Aging Parents
- Prepare for Unexpected Medical Emergencies
- How to talk to your parents' doctor
Whew! This is a lot of information. Next time, my own story: how I got my mother away from a dangerous doctor and what happened then.