5 Reasons Caregivers Need a Second Opinion

I meet a lot of parents who have had a child recently diagnosed with a critical and/or life-threatening illness.  They are understandably overwhelmed, confronted with a situation they never expected, suddenly required to make life and death decisions based on very little information.  In the beginning, there is so much to know and no way to know it.

Typically, these parents understand that it is a good idea to seek a second opinion when faced with a significant medical situation or a new diagnosis. Yet, whenever I encourage parents to do so, they are almost always resistant to taking that step. They tell me that they, or their partner, feel strongly about sticking with their current care team who has secured their trust by uncovering their child’s condition in the first place.  It feels easier to rely on what their current care providers and specialists are telling them and to not “rock the boat”. These are the experts after all. Who are they to question the experts’ advice? 

Having been in this situation myself, I understand how they feel.  It isn’t easy to question your care team’s recommendations and insist on a second opinion.  It isn’t easy to muster the energy to do one more thing when you feel like the life has been sucked out of you and replaced with the weight of worry.  It isn’t easy, but it is necessary.

You are your child’s number one advocate.  As a result, the responsibility of making sure your child is getting the care they need falls on your shoulders.  Second opinions are a valuable tool in helping you to do this.

Recently, one of these newly diagnosed parents asked me, “What is the goal of seeking a second opinion?”  This is a great question!  The short answer is: to make sure you have collected all of the information you need to secure the best care available for your child’s current needs and circumstances. However, there are several more good reasons why parents should pursue a second opinion and these reasons have a lot more to do with your well-being, as advocate and caregiver, than that of your child.

Below, are 5 good reasons you, as parent and caregiver, will benefit from seeking a second opinion as much as your child:

Benefit #1 - No Second Guessing

Second opinions allow you to verify your child’s diagnosis. Misdiagnosis does happen, though rarely.  Even if you are confident that the diagnosis is correct and you don’t expect that it is likely to change, it is worth taking the step to ask for verification. 

What does verification do for you?  It gives you the security of knowing, for certain, exactly what you are dealing with.  Circumstances will arise where your child’s experience doesn’t fit the standard expectations of their condition.  Under those circumstances, you will start to second guess whether you really have the most accurate diagnosis.

This happened to us a few years into treatment, when Our Girl’s tumor started growing more rapidly than expected for the tumor type.  In this situation, we might have panicked, thinking we were actually dealing with a more aggressive tumor than we had originally thought. We might have responded by switching to a more aggressive treatment. Thankfully, we had just verified the diagnosis.  Because of the extra step we took to verify, we knew to stay the course and continue treating the way we had planned. 

There is nothing worse than second guessing a difficult decision after you have already made it. A second opinion can help eliminate that source of anxiety and give you confidence in knowing exactly what you are up against.

Benefit #2 - No Regrets

Seeking a second opinion or two, will gather the information you need to be confident that you have met due diligence as your child’s advocate.  You can only do the best you can with what you know at the time. The more you know, the better you will do.

By making the effort to seek out the leading research, specialists, and treatments available nationwide, or even abroad, that are related to your child’s specific diagnosis, you can be confident that you have all the information you need to serve your child’s best interests.  No matter how much you trust your care team’s experience and ability, there will always be other resources out there who’s advice you can benefit from hearing, if only to reinforce the opinion you have already received.

We have personally made it a habit to seek a second opinion whenever something changes with Our Girl’s circumstances.  We are very well informed and typically always have a backup plan in place. Yet, even when we have a pretty good idea of what the next step will be, we always want to have a second set of eyes on those test results and confirmation that we have all options in front of us before moving forward. 

Whether the information your second opinion provides changes your course of action or not, you can rest assured that you have made the best possible decision for your child, with the information you have, in the circumstances you are in. You will not have to endure the pain of regret later.

Benefit #3 - No Fear of the Unknown

By gathering a second opinion or two, you will educate yourself on all of the options available for your child’s diagnosis.  Many of these options won’t apply to your child’s current situation. However, while this information may not change your course of action right now, it will be valuable for you to have as you look toward the future.

Having a thorough awareness of all the options available, will help to minimize the anxiety parent caregivers often experience as they anticipate an unpredictable future.  You can use the information provided by your second opinion, along with the guidance of your care team, to narrow down which option would be the next best step if your current plan does not work out as expected. You will benefit from the reassurance that there is another option available and a plan in place should your child’s circumstances change quickly.

Throughout Our Girl’s years of treatment, I have always made sure that we knew what the next best step would be if the current treatment stopped working, at least tentatively.  I found it easier to go into scan days or anticipate bad news when we knew there was another option available and what that option would look like for our family. This helped to cut down on the anxiety I felt by reassuring me that we were prepared for anything.  Second opinions helped us to develop these plans by providing the most up to date options to choose from.

You do not have to limit the information you have, regarding your child’s diagnosis, to only what is relevant right now.  If you prepare a plan for what the next best step might be, it will help to alleviate your anxiety and give you a sense of stability whether you ever actually use it or not.  Second opinions can help to provide you with the information you need to make a relevant, though tentative, plan for the future.

Benefit #4 - Establish Your Extended Care Team

You may have complete confidence in your home care team and their ability to manage your child’s current care needs. However, it is likely to happen that a time will come when your child will require care outside of their realm of expertise.  This is why building an extended care team becomes so important.  Second opinions build your extended care team by establishing relationships with the best in the field.

Don’t think you have to live in the biggest metropolitan areas to have access to the best care providers or researchers.  Second opinions will allow you to get your child’s case in front of specialized teams of providers, and benefit from their fresh perspective and experience. More important than that, second opinions establish a working relationship with these professionals, who you can now call on anytime you need their opinion and advice. 

We absolutely love our local care team for just about everything. But realistically, we know that if we want Our Girl to have access to the most experienced and up and coming care available, we also need to consult with others who see more cases and are more hands on with the latest research.  Over the years, we have made intentional effort to build our extended care team, seeking out specialists from across the country, a neurosurgeon from New York, a radiation oncologist from Chicago, for example.  Our extended care team allows us to enjoy great personal care, close to home, while also accessing outstanding state of the art research and technology from farther away. We don’t have to live near these cities, or even travel there, to get an expert opinion when we need to take a new step.

With a comprehensive care team behind you, you won’t need to worry about unexpected changes. You will have confidence in the established relationships you’ve built with your extended care team, and know that the support and care you need is only a phone call, or e-mail, away.

Benefit #5 - Find Middle Ground

Ideally, there would always be only one course of action that works well, all of the time. There wouldn’t have to be discussion or disagreement about what the next step should be. In the real world however, that isn’t always the case. 

Maybe you have several options in front of you and the professionals are not helping to narrow them down.  Or perhaps you and your partner disagree over which choice is best for your child at this time.  Heavy and difficult decisions can put a lot of strain on relationships and make a tough situation even tougher. A second opinion can go a long way in providing the information and perspective needed to clarify your options and bring differing opinions closer together.

We have often found ourselves in circumstances where we had more options than we had direction.  As co-parents, my husband and I had to find a way to come to a decision we both felt comfortable with.  The more information we had, the easier we found this to be.  This is where collecting several opinions helped to provide direction and take some pressure off of us as parents, caregivers, and as a couple. 

Perhaps a second opinion will reinforce one side or the other or present a whole new option that hasn’t yet been considered. Either way, you can use this information to come to a decision you and your partner agree on and to move ahead as a united front.

Getting a second opinion does not mean that you don’t trust or respect your care team. What it does mean is that you care enough about your own mental and emotional well-being to be proactive and to gather the information you need to be confident and comfortable with the decisions you are making. After all, you are the one who will have to live with the consequences of that decision and you do not want to second guess or regret that decision later.  Any true professional will recognize and respect that.

You should never feel any resistance from your care team for wanting a second opinion. They should always be willing to facilitate gathering and sending the records and reports you need to do so.

Whether your child has just received a new diagnosis or you have been at this for a while, it is never too late to get a second opinion.  When it comes to caring for our kids, we want to be in the best position possible to treat their condition and to protect and improve their quality of life.  This means we never stop learning and we never stop fighting.  It is our right and responsibility as parents to gather the information we need to be the best caregiver and advocate we can be for our child. 

Knowledge is power! Never hesitate to arm yourself with the power of a second opinion. You, your partner and co caregiver, deserve the security that comes from knowing exactly what you are up against, what the options are, and what the future plan might be. You deserve to have confidence in the extended team of experts you have in your corner to support you.

Self-Care Action Discussed in This Post:

Gather the information you need to seek a second opinion. Consider the following: What information or answers to which questions you would like your second opinion to provide and/or verify. Research specialists in the field of your child’s diagnosis to narrow down a source, or sources, to contact for a second opinion. Work with your care team to gather the records and information you need to send to your second opinion. Your care team may even send them for you. 

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