As a caregiver, you may take on the role of an advocate for your family member. You should keep in mind one of the foundational principles of western medical ethics: autonomy – respect the values and wishes of the patient.
Sometimes what we want for our family members is in conflict with what they want for themselves. Physicians choose to respect the wishes of the capable and competent patient. When patients are no longer able to make their own decisions, we still strive to respect their values – what they would have chosen for themselves under these circumstances.
Communicating with Doctors
The List The patient’s list of problems is loved and hated by my medical colleagues. I find the list is a problematic if the patient has a list but hides it or chooses to bring out one problem at a time so that after we have gone through the history, physical examination, and discussion about diagnosis, investigation and treatment of one, another is brought up that we work through, then another and another.
The list is best shared up front when booking the appointment so that enough time may be allotted in the schedule. What is covered in a single office visit or consultation should be negotiated at the beginning of the visit, so that sufficient time is spent on a problem rather than rushing to cover things in a limited time. Mistakes are more likely to happen in the latter case when a physician doesn’t have time to think through a problem.
The Doctor’s Orders As doctors, we are notorious for giving complicated instructions to our patients and not writing it down. When we do write it down, like a prescription, you might not be able to read it.
If I ask a patient to do more than two things, such as reducing the dose of one medication and starting a new one, I will write (or print) my instructions and review them with my patient. Never leave the doctor’s office without being clear on these instructions.
A Word About Compliance In the past, patients who didn’t follow through on the doctor’s orders were labeled as “noncompliant.” This literally means not bending to or following the direction of the physician. In this day and age with educated and empowered patients, it sounds ridiculous.
If I ask a patient to do something and he comes back not having quit smoking, taken his medication or started exercise, I don’t label him as noncompliant. I would recognize that the goals I set weren’t really the patients or I didn’t give him the support he needed to achieve those goals.
Just like the agenda for the appointment is a negotiation. The course of action after the visit is a collaboration. The goals really belong to patients if they are they ones who will be carrying them out in their real and complicated lives.
As a physician, I give information, advice and options. Once a patient chooses the course aligned with their goals and values, I can help anticipating challenges and arranging appropriate support and follow-up.
What You Should Know About Every Medication To make an informed choice about starting a medication, a patient needs to know: (1) the indications – what is it for? (i.e. to treat high blood pressure, reduce cholesterol, control the heart rate, lower blood sugar); (2) what are the alternatives? (i.e. other medications, no medications, lifestyle changes); (3) what are the common risks or side effects; (4) what are the most serious side effects?.
If you are acting as an advocate or your family member is not capable of making an informed medical decision, you should ensure that you have the answers to these questions for each medication prescribed.
Surviving the Hospital Stay
Being in a hospital can be a depersonalizing experience. We take away your street clothes, make you wear gowns that don’t keep anyone warm, make your wear a wrist band, and write all about you in charts that you can’t see.
You can be given medications to take that are unlabeled and given tests without the informed consent you would expect at the doctor’s office, but the same rules apply. For every intervention and investigation, the patient or the proxy decision maker should know (1) the indication, (2) the common risks, (3) the serious risks, and (4) the relative risks of the alternatives.
In the hospital, you may be treated by a variety of healthcare providers, but for every patient, there is one attending or most responsible physician. As a patient or advocate, you need to know who that is. That name will usually be on your wristband. This is the physician who should be able to answer all your questions about medical status and treatment plans.
This is part of my presentation this evening at the Paetzold Health Education Centre, Jim Pattison Pavilion in Vancouver General Hospital (Thursday, May 12th at 7 p.m.) as part of A Celebration for Family Caregivers. The event is sponsored by the United Way, the Alzheimer Society of British Columbia, the Parkinson Society British Columbia, Vancouver Coastal Health, and the Stroke Recovery Association of British Columbia. To RSVP for free but limited seating call 604-877-4650 or email firstname.lastname@example.org.