Chronic specialist care
Once upon a time, I asked my hot-shot pain specialist (I’ve had some real rock-stars) for something heavy-duty and intense (I forget what).
He told me that he wanted to stick with using current meds a little differently and upgrading my self-management skills, because I had a lot of years left and he wanted to keep something in reserve for when things got worse.
This doctor really understood long-term palliative care — palliative care meaning, you’re not expected to recover, so treatment means managing symptoms for as long as possible.
That’s not about dying comfortably, most of the time. It’s about living anyway. Being sick is not the end of life. It’s just a heck of a detour.
He was apologetic and sympathetic, hoping I wasn’t too dismayed and disappointed. I was delighted to realize this physician firmly intended for me to have a long and active life, and was asking me to step up to the plate to help to make it so. I don’t think he realized that, in that moment.
I said to my specialist, “My job is to figure out how to get through my days as gracefully as possible. Your job is to hold the long view for me, and figure out how to manage my care over time so I can get through the years as gracefully as possible.”
He looked at me in perfect stillness for a long moment. For someone who likes talking as much as he does (for good reason; interesting talker), that was weighty.
He asked, “Would you please come to my severe-pain support group and say that?”
Sadly, I really couldn’t drive safely that late and knew I couldn’t get a ride for it. (This was pre-pandemic, so, no remote possibilities.)
It’s possible that he was as frustrated and disappointed that I couldn’t come and say this to his patients as he had expected me to be about the medication. So, Dr. Saberski, this one’s for you!
Emergency visits
The purpose of the Emergency Department (or A&E/Casualty, for the other English-speaking countries) is to figure out if anything is going to kill or disable you in the next 24-48 hours. It’s a very specific remit.
Flare-ups of chronic conditions can creep into that remit, severe pain being very disabling in itself.
However, another condition of mine, gastroparesis, is not a great candidate. The heavy-duty pain meds in the ER are mostly narcotics, which rarely work for intestinal pain and, more importantly, make the intestinal paralysis worse. The anti-vomiting meds may not be better than what your doctor prescribes, although they may be different and worth trying for that reason alone.
ER nurses used to have an effective line in moving stubborn bowels. It seems this is no longer the case. It’s often considered a specialist task, not that specialists do it either. If in doubt, look up “soap-suds enema” and follow the instructions carefully. Stay near a toilet for the next 6 hours as your guts remember their job.
It’s vital to know that dehydration can be deadly or disabling, and the ER is exactly the place to go for treating that. So, if you can’t keep even sips of water down for a day or two, for any reason, and you’ve got the sunken eyes and play-dough skin (pull up a little fold on the back of your hand, and it stays there), the ER is the place to go.
Bodies can’t recover without water. Water really is life.
If your condition requires specialist knowledge to treat, but probably won’t kill you or further disable you in the next 24-48 hours, the ER can be bitterly frustrating, because thats not their brief and it feels unfair to ask them for it when they don’t have the training or funding.
However, it’s perfectly okay to phone them up and ask the triage nurse what to do. I’m an old triage nurse and I loved it when people were “on it” enough to call and ask. If they didn’t need to come in, I could tell them what to do and what to report if things changed. If they needed to come in, I knew they would do as well as possible and I could get them sorted and into appropriate care faster and with a rare smile on my face.
Being deliberately involved in your care is that powerful a message to send to your system. We can’t consciously control our systems, except in nudging things here & there, after specific training. We can deliver primal shoves with our basic approach, with how deliberate and mindful we are about our care.
Urgent care
Urgent Care is where you go if you’re pretty sure you aren’t going to die or be (further) disabled, but you do need same-day care.
Keep in mind that these providers do not have specialist training, but might be able to make a call to your specialist or be willing to discuss what you want from them. I said “might” — it depends on factors beyond your, or even their, control.
In the US, they usually can’t make referrals — except to the ER, if they find that you need further scans or a higher level of care.
It’s not fair to them to expect specialist care. That said, it’s not fair to you to have an inaccessible specialist. Lousy situation.
Primary (general) care
This person is supposed to be the ring-master who holds the ends of all the threads of your care. They’re supposed to take over your prescriptions (unless they’re actively in the “figuring out what works” stage) or you’ve got a specialist who wants to stay absolutely on top of things.
This is the person you usually call for coughs and colds, annual checkups, questions about whether you might need another specialist or different care, and when you want to talk over health care concerns, including confusion with how the system works.
They’ve still only got 5-10 minutes with you, but it’s time well spent if you’re confused or overwhelmed. As ever, note your issues and questions before going in, to make the best use of your time together.
One of the uses of those “talking” visits is for a medication review, one of the best uses of time there can be for us. See the Pharmacist section for more.
Pharmacist
These are the medication bosses. Their depth of knowledge of medications, interactions, side-effects, and alternatives is absolutely daunting. They’re the wizards of meds.
If you’re having symptoms that might be side-effects, this is who you ask about it. If you’re unsure about a new med or dont know what to expect, this is who you ask about it. If you’ve got genetic variants that might affect medication metabolism, this is who you ask about it.
Medication review
If you’re concerned at how many meds you take, talk to your pharmacist first. Then, with the notes from that conversation in hand, talk to your doctors.
This is called a “medication review” and everyone can do it annually, or more often if things are changing for you.
Pharmacists can’t prescribe, because the depth of knowledge about various bodies in sickness and health is the reason why physicians spend even longer in training than anyone else. Most of medical care is beyond medication. It’s why nutrition and self-care matter so much.
The body is its own unique thing and needs its inhabitant to be involved for best results.
In short
Medicine is really, seriously deep and complex. Each of these segments of the health care system is necessary, and none can substitute for the others.
It’s an imperfect system. It should be much better, but, heaven forfend, that might cut into enormous corporate profit margins. Patients, doctors, pharmacists, and every actual helping human has to work within the restraints of enormous corporate profit margins.
Hope this helps clear a few things up!