"If you're going to tell the patient she needs a driver to [bring her to] an appointment, then you need to come up with better accommodations for the driver than to tell her she has to wait an hour or more in a hot car with no air conditioning in the summer. If you saw someone's dog in the car under those conditions, then you'd report it. IF YOU WOULDN'T DO IT TO A DOG, THEN YOU SHOULDN'T DO IT TO PEOPLE EITHER!!!!"
With those capital letters and exclamation points, you don't have to be a mind reader to figure out how angry she was. You can see her in your mind's eye roasting in the front seat of her car while waiting impatiently for her mother to finally come out of the doctor's office. You can imagine her feeling steamed as she clutched the steering wheel with sweaty hands and drove her mother home in tense silence.
This unfortunate incident, some may say, is just an unintended consequence of this medical office's recently adopted policy to fight COVID-19. By limiting the number of people entering the building, the mother's doctor was protecting everyone — patients, staff members and family caregivers — from contracting the coronavirus. But this daughter's reaction fits into an older, more deeply rooted narrative: Family caregivers often sense that physicians expect them to make selfless sacrifices for their loved ones without complaint. The doctors, though, neither credit family caregivers for their essential assistance nor seem to give a hoot about these individuals’ well-being. Little wonder that some feel taken for grant and used.
By venting her concerns on social media, the daughter was announcing to doctors everywhere the need to care for caregivers, as well. Actually apprising her mother's doctor of her concerns would have required speaking her mind directly to him or the office manager. Why don't more caregivers take that step? Many believe they'll be ignored. Others are afraid physicians will label them as out of line or “difficult.” Some worry that their loved one will receive lower-quality care if they hassle the doctor too much.
How can family caregivers overcome these fears and build trust with their loved ones’ physicians? Here are some ideas.
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Become a proactive communicator
Many doctors strive for a laserlike focus on the needs of patients as their utmost clinical and ethical responsibility. That's how they've been taught to practice “patient-centered care.” But few physicians will dismiss input from family caregivers that helps them do a better job with patients. They'll welcome working relationships with family caregivers who are knowledgeable and credible informants about patients’ behaviors, attitudes and responses to treatments.
Family caregivers can step into that role of credible informant if they take every opportunity to share information, without waiting for the doctor to ask. Keep a journal of what you observe and hear from your loved one about her symptoms and offer to share it with the medical provider. Ensure that she has all the medications she needs and is taking those medications correctly. A family caregiver who is seen as a treatment ally will get a more sympathetic hearing from the doctor if she has a legitimate concern to air later.
It's about time
You know the saying “Timing is everything"? With doctors, a more accurate saying is “Time is everything.” Most physicians drag-race through their days to diagnose and treat all the patients on their schedules, complete hours of documentation about those visits and answer multiple phone calls and emails from colleagues and case managers. They see anything and anyone who might slow them down as speed bumps. That includes inquisitive, talkative or complaining family caregivers.
You can accommodate physicians’ time constraints by communicating concisely. State your observations, questions and concerns in a brief voice mail or e-mail to the doctor before the patient's visit or hand her a bulleted list as you enter the examination room with your loved one. At the end of the visit, repeat to the physician a summary of her instructions for the patient, to indicate that you understand what needs to be done. Keep it all short and sweet.
Be assertive, not aggressive
This is a universal therapy rule: No one likes to be steamrolled by an overly passionate or angry advocate. Physicians will regard you as a treatment adversary, not an ally. Even if they ultimately agree with whatever point you are making, they will draw back from you. That's why you need to speak your mind with calm restraint. Come across as pleasant, knowing and respectful. Be the committed team player whom physicians come to rely on to enable their best performance for your loved one's sake.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.