By Thea Arnold and Angela Todd
“Half of advocacy is persistence.” Thea Arnold
Gender roles haven’t changed enough to change the statistic that by and large women are still the caretakers of both their parents and their children. As our parents age and reach the stage of medical intervention, those of us in the ”sandwich generation” are often juggling working full time, raising children, and making sure our parents are safe in their homes and cared for properly by medical professionals. If our children or siblings have also had medical or developmental needs, that means that we have had the opportunity to hone our medical advocacy skills all along the age spectrum.
This introductory-level list has grown out of that experience:
- Figure out if you are acting alone or if you need to get consensus from siblings, spouses, step-parents, or romantic partners. Then provide the hospital with the name of the point person and/or a list of folks allowed to get information on the patient.
- Keep track of medicines. Take photos of them and write down what each one is, what it does, how much the patient is to take, and how often. Should they be taken on a full stomach? With water? Avoid grapefruit juice? Avoid calcium supplements? Does the dose change from day to day? Does the amount in the blood change if the person is dehydrated (from vomiting, for example)? When a new medication is added, check with doctors or your pharmacists about any potential reactions or medicine interactions that may give rise to new symptoms.
- When in the hospital, introduce yourself every shift change. Have the nurse write her/his name on the patient’s whiteboard, and keep a candy dish in the patient’s room. Work on the fine balance between being a friendly and approachable family member with being a firm and well-researched advocate.
- Take notes regarding which specialists come in and what they say – doctors and specialists often disagree and keeping straight which doctor proposes which options will help you discuss and decide upon a course of action. Ask, “why might your course of action outweigh the others?”
- Make sure the patient’s personal needs are getting met – food and medicine allergies should be recorded, and writing them on a patient’s whiteboard may ensure that they are remembered. Keep track of a patient’s bathing schedule, or turning in the bed to prevent bed sores. What are their sensory needs? In other words, if they can’t speak for themselves, would they want lip balm or hand lotion applied frequently throughout the day? Do they like their covers tucked in around their feet or loose? Would they want the TV on or off, and tuned to what channel? Would s/he be soothed by music, or potentially upset by it? Would s/he find a weighted blanket soothing? Blinds open or closed to sun? Overhead lights on or off? Etc. A list of these preferences may be hung on the whiteboard or at the patient’s bedside.
- Get it in writing in advance if at all possible when an adult has a strong hospital preference. Also get in writing any DNR orders, proxy, will etc. and always have on hand.
- Meet the hospital social worker. Build a relationship. This will pay off, especially if you have to report treatment irregularities, request a staff change around the patient, or need support or guidance in terms of community supports and services.
- Ask about medical advocates on staff. Some larger hospitals do employ them. Be sure about their rates and who is obligated to pay for their services before you contract one.
- To get in sooner to see a specialist, ask “Do you maintain a cancellation list? I’ll take this appointment, then please put me on the cancellation list. I’m anxious and flexible.” Make sure that your parent/elder has access to last minute transportation.
- Speed up communications if you’re busy by specifying, “Can you please leave me a message if I can’t pick up?” or “I can hold.”
- Search outside your geographical area for the best care, especially for rural patients, to participate in new drug or medical trials, or for complicated cases. You can read about NIH trials here: https://www.nih.gov/research-training/clinical-research-resources
- Use photos and videos to your advantage — photograph medicines, charts, notes left on the whiteboard in the hospital room for recordkeeping. Also make sure to have framed pictures and handwritten cards on the bedside table of the patient. This “humanizes” the patient, and it reminds the nurses and other staff that even though this person may seem like just another crabby old guy, he has family who love him and a whole life outside of his illness/complaints.
- Track symptoms and reactions using a calendar that you can take with you to the doctor’s office. Physical reactions may warrant photographing a rash or taking video of a tremor. Include on this the patient’s weight, if the diet has changed in any way, new symptoms, and any changes in medication.
- Ask “what are our treatment options?” to all the doctors involved in care. Nurses may have many more (anecdotal) details about how diagnoses, medications, and therapies “play out” at home or over time. Ask “what’s the best we can expect?… Now what steps can we take toward that?” Also about complementary care, whether massage or nutritional supplements are counter-indicated, and how to be sure insurance covers them… do they provide an in-network list? Do you need a referral?
- Speak Up. Consider yourself a partner on the health care team with valid questions and concerns. Offer an adult patient your skills in voicing their concerns or asking questions on their behalf. For non-verbal kids and adults this is obviously important, but even if they can speak, they may feel shy or befuddled once you are facing the doctor.
Ideally, patient care should be a partnership between the patient her/himself, the family, and the various medical practitioners attending the patient. However, given the various exigencies of medical care and the correlation of care and/or diagnostic procedures to cost, sometimes patients’ needs are not met. Sometimes patients experience unremediated pain. Sometimes patients suffer from hospital-acquired infection. All of this means that patients, whether adults or children, need an advocate to help them navigate the hospital system and to get their needs met in a timely fashion.
There may also be support groups for caregivers or patients with the illness at hand – ask your nurses or social worker.
Get a good, detailed discharge plan, and be sure the patient and care providers all understand it. Ask, and note on the discharge papers, who to call if there are questions after everyone gets back home.
Thea Arnold is a Parent Educator in New York State public schools. Her grant-funded position is through PACT (Parents and Children Together), and is part of a home visiting program that supports and educates pregnant moms and moms of kids through age 5. Merging her academic and disabilities services backgrounds, she guest lectures on the college level and speaks publicly on local services available to people with disabilities. At Binghamton University she has advised bioengineering seniors, on their projects in software design, wheelchair design, and DME (durable medical equipment) for people with disabilities. Thea lives in upstate NY with her mate, a neurotypical adult son, and a teenaged daughter with multiple diagnoses.
Angela L. Todd is a speaker, coach for moms and a consultant in Family Culture and History. With academic and archival backgrounds, she believes families are microcultures, more than the sums of their parts! Capturing that family culture helps kids feel more confident and emotionally savvy. Consider starting your family history today by stoppping at her web site, Angela L. Todd. You can also read her blog and find her on LinkedIn, Facebook, and Pinterest. She lives in greater Pittsburgh with her “Running Mate,” two kids, two cats, and occasional fish.