I'm questioning my diagnosis and treatment options...
You may have recently received a diagnosis or treatment option that is keeping you up at night. Before panicking, maybe the next best step is getting a second opinion or seek out the opinion of a specialist.
Reasons for a second opinion include, but are not limited to:
Treatment proposal was positioned as standard but typically ineffective.
Treatment proposal is cutting edge but risky. A bit beyond your comfort zone.
Treatment proposal is expensive and not covered by insurance.
Diagnosis is serious but somewhat unsubstantiated, it’s a “best guess.”
Diagnosis is serious but symptoms can be attributed to other issues.
Diagnosis seems correct but there a many different schools of thought for treatment.
In my opinion these types of questions warrant a doctor’s second opinion, and there are a few avenues to achieve this…
First is simply asking your doctor for a recommendation to receive a second opinion. Your doctor *should* welcome the idea of a second opinion to confirm their findings. My concern, personally, would be they refer to someone too like-minded. But you could be clear that you’re looking for doctors that have a different approach if that’s what you’re seeking. The second is to work through insurance, friends, or networks to find well respected and covered doctors within the field. The third, if financially feasible, is to hire a concierge doctor to thoroughly review your medical history and develop a strategic plan on how to move forward. This is all perfectly reasonable, especially when trying to firm up a diagnosis or pursuing known treatment options that your initial doctor isn’t recommending. Generally speaking, I find this overall scenario the way my younger clients (and self) think because health scares are generally preventative, non-life threatening, or fairly routine.
When you need someone other than a doctor for advice…
Alternatively, you may find yourself wanting to understand the big picture rather than confirming diagnosis and treatment because the situation is life-threatening or chronic. These types of second opinions are more related to the ripple effects of diagnosis and treatment. I find many of my elder care clients in this boat.
What are the likely side effects of treatment given my medical history?
What does a “percentage back to normal” mean?
What does Medicare cover and when does Medicaid come into play?
What isn’t the doctor telling me because I didn’t know to ask the question?
If this is running through your mind, maybe an advocacy route makes more sense to provide a broader context.
I hate to say this, but what I find to be true time and time again is that within a medical setting you’re rarely given the option to do nothing. And until it’s said out loud it’s not as obvious as it sounds. It’s as if we have blinders to that option, and if the thought occurs, no one wants to be the monster to even suggest it. This is why Donna Seibert, MD advises her patients to provide their families “with the gift of health directives and using programs like The Conversation Project.” She also recommends reading the book Being Mortal by Dr. Atul Gawande, which I also love. You can find more about becoming legally responsible for aging parents here.
“Doing nothing” and managing the consequences shouldn’t be a radical idea. Consider Hospice. It’s a widely respected and utilized service that focuses on comfort measures and quality of life. And given its been in formal existence since the 60s, the idea of refocusing the goal to quality and comfort shouldn’t be taboo. You’re certainly not a monster for “doing nothing” or suggesting as much. However, while we’ve all heard of Hospice, they don’t always become an option until the 11th hour (triggering eligibility can be difficult for elderly or dementia patients suffering from an overwhelming array of non-life threatening issues vs a patient who is diagnosed with something definitive like cancer, etc). And because of this unfortunate reality, we miss out on education related to “palliative” care when we’re exploring all our options and making critical decisions. So if you’re not presented with Hospice, don’t be afraid to inquire about other palliative care services and measures.
What’s important to understand as you review your treatment options that are absent of “doing nothing,” is you may experience the feeling of dragging yourself or elderly loved one down a rabbit hole of injections, rehab, medications, and/or surgery. “Really – you’re going to give by 90-yo father physical therapy on swallowing? Is this what we’ve come to?” Some of these directives may be very worthwhile, while others only inspire hope and immaterial results. The reasoning behind this is because it’s a medical providers duty to treat. And this is absolutely wonderful for those who want to fight like hell and live as long as possible. But what gets lost in the discussion is whether the cure is worse than the disease and the likelihood of regaining independence. It boils down to quality over quantity.
Lastly, it’s often not discussed on how a patient or their family will tactically manage the recommended treatment, it’s potential repercussions, and any required ongoing care. I’ve been a part of discharge meetings where the medical staff proudly states the patient will be headed home “80% back to their original abilities. They’ll receive PT 2x weekly for an hour. Good luck and stay well!” The family turns to me horrified. 80% of “normal,” which was barely being able to remain home without constant intervention, is a pretty bleak picture. Two hours a week when 24 hours of supervision a day is needed is a huge gap of services which reasonably means outsourcing care to the tune of $30/hr or a transition to assisted living. I couldn’t believe none of this was mentioned. It was a DISCHARGE meeting and the family would be hit hard with this reality within hours. These ripple effect related to diagnosis and treatment is where I highly recommend seeking out the advice of advocates vs pursing a second medical opinion.
Of course, I love to work with my clients as an advocate in terms of providing education on elder care options and running financial plans to get in front of these issues. However, in the midst of crisis, it sometimes makes sense to defer to my medical and insurance counterparts. I’d like to introduce you to a few resources that I highly recommend:
Dr. Donna Seibert of Alongside Medical AllyAlongside Medical Ally: Dr. Donna Seibert is a rare local gem who is the best of both worlds. She blends her medical background (yes -she’s an MD!) and big picture insight on elder care so her clients truly understand their diagnosis and options. https://www.alongsidemedicalally.com/
Beacon Patient Solutions: Did your insurance reject your claim? Do you want a new and effective treatment option but insurance isn’t understanding the efficiency? Are you confused about how to move forward with care without first knowing what Medicare will cover? Aileen and others within her network can help navigate insurance matters: https://www.beaconpatientsolutions.com/
Aging Life Care Professionals: Not local enough to use Donna or Aileen? Or maybe your questions are a bit outside of their scope? Aging Life Care members are generally social workers, nurses, and physical therapists that address challenges stemming from the ripple effects of diagnosis and treatment options. https://www.aginglifecare.org/
Advocacy, Assessment, Crisis Intervention, Care Management, Consultation, Counseling, Education, Entitlements, Guidance for Adults with Disabilities, Guardianship/Conservatorship, Home Care, Insurance, Information/Referral, Placement, Psychotherapy
