Own The Phone

Get your doctor's number, get his nurse's number, get the radiology department's number, infusion, interventional radiology, study coordinator, protocol department, lab, insurance, radiology preauth, prescription plan, local pharmacy, special pharmacy, therapist, and palliative care. Get their numbers. Put them in your phone. If they're all one number and a million different menus, put the menu choices in the description, save yourself what few headaches you can, because you will burn up days on the phone.

Learn the name and birth date and social security number of the person for whom you're caring.

Memorize it. Live it. Use a calendar, put it in your phone, too.

Please and thank you, even when you're fighting a lazy, broad-beamed admin in the depths of a department in order to get what is needed for your loved one's treatment. The dropouts and nepotized love being a hurdle, so don't play their game, just get the job done and leave, then write the comment/suggestion/complaint to their boss. You might be surprised how quickly those people shape up or leave when they are anonymously called out for their awfulness.

There's this double-edged sword called the Joint Commission (on Hospital Accreditation) and they are (rightly, in many cases) hated by Doctors, Nurses, and the productive members of Hospital society because they create surveys and standards by which hospitals are graded and reported on. Many of their surveys cover patient satisfaction, and many more cover standard treatment regimens with no scientific basis, but the hospitals fear them, and so the hospitals will bend over backward in order to fix things that might hurt their survey scores. Keep that in mind when dealing with poor responsiveness from a hospital. Interestingly, since the Joint Commission's not always a science-driven standards organization, many hospitals with higher satisfaction scores also have higher mortality rates.

Be a human. Tell your story. Know what's going on with the treatment. Don't be afraid to say, "I don't know," but don't be afraid to volunteer information or ask questions. Your doctors will trust you so much more if you are communicative, honest, and forthright with them. Don't hide symptoms, but don't overreport, either. Read up on the condition, but you must absolutely not become a WebMD hypochondriac.

Get your shit together and advocate tirelessly for your loved one. No one else will do it for you.

Be wary of case managers within the insurance or hospital organization, as they serve the same role as an insurance adjuster or body shop manager, they're there to maximize profit or minimize loss for their organization.They can be helpful and useful, but don't count on it without checking.

Trust but verify. Follow up. Squeak. Don't forget to breathe.

Good luck.