How often have you noticed something that needs to be addressed in order for your loved one to have the best care? Probably almost as often you have felt mentally, emotionally and physically exhausted.
The key to dealing with these situations is to be prepared, to be as informed as possible. Armed with the relevant information you will feel empowered and confident.
These eight practical suggestions will ensure quick access to the records you need to be effective in your dealings with medical professionals and bureaucrats when issues arise.
At every appointment, take notes and always date them.
Be sure to include a list of all participants. At meetings with medical practitioners ensure that you record key terminology and associated terms, and any recommendations that are made. This applies not only to specific medical concerns but also to diagnosis and treatment options. I kept these notes in one notebook making it easy for me to quickly locate relevant information. This helps immensely if you should decide to question a medical decision.
2. Get copies.
Always insist that you receive any report that is generated concerning your patient. I found that doctors were usually willing to have an assistant photocopy documents for me. I even received ECG printouts when I asked for them.
3. In the Province of British Columbia you have the right to a printout of any lab test results requested by your doctor. However you must tell them you want a copy when you submit the initial requisition to the lab. The lab will then either give you a card with the internet address where you can access the results, or if you prefer, have them mailed to you.
4. Ask the pharmacists to photocopy all original prescription requests from your doctor. This allows you to compare the dosages indicated on bottles or vials to what the doctor actually prescribed. It also enables you to check prescriptions against previous ones. On rare occasions this additional check helped me to determine, with a pharmacist’s assistance, that the prescription filled was either inaccurate or inadequate. I found that Costco pharmacy was always willing to go this extra distance to ensure my peace of mind.
5. Don’t back down. If you have gathered all the information and know that you are right, don’t yield. Always be calm and courteous, but insistent. Do your research. If you are lucky enough to have a nurse or doctor in the family or in your circle of friends, discuss the issues with them. They may put your mind at ease with the medical advice you have been given, or they may indicate possible strategies for intervention.
6. Make phone calls. Write letters. Both are most effective when you maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands! Use phrases like “it seems that this is the case…”, or “is it not the case…?”, or “could you please explain to me…?”, or “it seems to me…” as opposed to “you made a mistake…”, or “you lied…”.
7. In the case of bureaucratic delays or rejections, where time is crucial to ensuring the well-being and best care of your patient, state that if necessary you are willing, while be it reluctantly, to go to wider public resources: the local newspaper or TV station, or a letter or visit to your MP or MLA. Remain calm, state the facts. When you have the evidence to back up your position, you need never back down.
8. You are your loved one’s lifeline. Never forget that. A caregiver’s first and foremost endeavour is to advocate for those who are under their care.
Have I got the latest list of meds? Did I remember Chris’ needle and insulin, his noon meds for the journey home? Has he taken his morning shot, his morning pills? Do I have the purse with the medicare cards, ID and any other necessary forms or documents? Did I get gas recently or do I need to stop at a gas station?
It was often a harried rush just to get to the car, let alone the doctor’s office. That’s why I felt it was so important to plan ahead the night or even days before.
In his book, What Dying People Want: Practical Wisdom for the End of Life, Dr. David Kuhl gives some thought-provoking suggestions for visiting the doctor’s office. What I’m presenting here is a mere snippet of this information:
Before the appointment, list your concerns in writing. Then prioritize them. Its always a good idea to put a notebook and pen in your bag for note-taking at the doctor’s office. At the beginning of your appointment explain to the doctor how many concerns you have and then inquire regarding the time constraints of the appointment. Deal with what you can in the time provided, keeping to your pre-assigned priorities.
Be specific about symptoms and issues (You should have notes to refer to regarding these).
Regarding tests: be sure you ask and understand what the tests are for, what they will involve. (Make sure the person in care has a chance to ask questions, to get answers, too!)
When given a diagnosis, ask questions until you are sure both you and the cognizant patient understand.
If given a new prescription, find out what the proposed effect is. How long will they take it? How will it affect them? How will it react with their other medications?
To sum up, its good to always clarify what the doctor is saying. Be sure you truly understand the processes you’re about to embark on. Take notes. And perhaps most important of all, make sure the patient is comfortable with his/her own level of understanding of what’s being said.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.