Being a caregiver is one of the most beautiful expressions of gratitude and love there is. At some point, most of us will find ourselves in the position of providing care to an aging family member or friend. Three years ago, I found myself caring for both my father who was sick with stomach and esophageal cancer, as well as my mother who had five strokes simultaneous to his illness. It was a devastating time for our family. On several occasions my mother was in-patient in the silver “stroke tower” of our local hospital, while my father was in the adjacent orange tower being treated. I was instantly thrust into the world of caregiving at a level I could never have imagined.
According a 2018 General Social Survey on Caregiving and Care Receiving, nearly one in four Canadians aged 15 and older (7.8 million) provided care to a family member or friend that year. Providing care for a loved one can be humbling, emotional and overwhelming. Knowing how to help your patient navigate through the rough waters can often ease anxiety and foster better communication, which reduces the risk of potential medical harm. From my experience, one of the most helpful tips has been preparing well for each doctor visit. This includes compiling a list of questions you’d like answered during your appointment. During the visit, take notes so you can remember what was discussed. When you get home, add any thoughts or impressions you had while the conversation is still fresh. Here are some helpful questions to get you started
Seven key questions you should ask your patient’s healthcare provider:
1) What is the patient’s condition/prognosis and what is the plan of care going forward?
Asking direct questions about what’s happening to the patient’s body and receiving an honest assessment of the situation is the only way to make a realistic plan of action for treating an illness. Having a tentative picture of future appointments, tests, procedures or surgeries will help you and the patient better schedule your time. You will also know whether you need to enlist help. Once you understand the patient’s condition, you can begin to look for resources and alternative treatment options that might be available.
2) What are the risks and benefits of this treatment plan? Are there other less-invasive options? Is “watchful waiting” an option?
For example, at 70 years old, my great uncle Bob was diagnosed with prostate cancer. Our hearts sank; we immediately thought it was a death sentence. His doctor explained that uncle Bob’s prostate-specific antigen (PSA) numbers were not “too bad,” and that he’d prefer to conservatively monitor his progress over time. I’m happy to say that uncle Bob passed away at 104 due to a completely unrelated cause! However, without asking about all options available doctors might defer to the most common treatment plan without fully considering the patient’s unique situation.
3) What is the best way to communicate with you, and how will we coordinate the patient’s care team?
For some conditions and illnesses, the treatment plan will require a team of care providers. As my mother recovered from her strokes, in addition to her primary care physician she had a vascular neurologist, an electrophysiologist, a physical therapist and a speech therapist. Along with daily home-health care visits, there were multiple doctor appointments each week. It’s essential to ask how the team will coordinate care and keep you informed.
The pandemic has expedited the use of technology to keep patients and healthcare workers connected. In fact, 52% of caregivers in Canada have reported having increased responsibility for learning and managing healthcare technology due to the pandemic. Most healthcare systems offer online portals that allow you to contact care team members with questions or to refill prescriptions. Whether you are tech savvy or not, always ask providers for their business card. It’s good to write the name and number of the doctor’s nurse practitioner or nurse coordinator on the back as well. Reaching out to them directly is often the quickest way to get your calls returned and questions answered.
4) What other types of care or services would be helpful?
When asking about your patient’s unique situation, the physician may share ideas you may not know are available options. For example, the doctor may recommend that your patient see a wound care specialist and consider switching from wet-to-dry dressings to the more aggressive wound vacuum-assisted closure therapy. In some wound care cases, they might even recommend hyperbaric oxygen chamber treatments. If your patient needs transportation to medical services, the doctor may prefer that your loved one use an EMT-certified driver rather than a random layperson working for a rideshare service. Asking questions like these lets the doctor know the patient is open and receptive to a variety of treatment options. It also gives them the freedom to think creatively about ways to improve the healing process. There are often many alternative therapeutic options available if you ask.
5) What are the range of medication side effects (from mild to severe) that we should be aware of?
The importance of medication safety is widely established. Medication incidents are a leading cause of patient injury. Unlike medication incidents, an adverse reaction doesn’t involve a mistake and typically can’t be prevented. Still, we must be on alert for unwanted side-effects that can happen when drugs are used under normal conditions. Frequently, we are so focused on looking for something major that we miss the minor reactions we assume are unrelated. For example, a patient taking the beta-blocker Metoprolol Tartrate may find themselves feeling a bit more tired and sluggish. After a normal household activity, they may feel as though they just finished an intense workout class. Thankfully, because our doctor told us about this seemingly insignificant side-effect, we were able to alert him of my mom’s reaction to the medication and he reduced her dosage. She was immediately back to her energetic, vivacious self. Even something like a skin rash, diarrhea or headache can be enough to impact or curtail a patient’s daily activities. This can lead to despair and affect their overall health. Our job as caregivers is to be on top of any situation that may keep our wards from feeling their best.
6) Are there any dietary issues to be aware of?
My father loved grapefruit in the morning! They are nutritious, full of vitamin C, antioxidants and tangy-sweet flavor. However, did you know that all forms of grapefruit—the fresh fruit, the juice and even the frozen concentrate can adversely interact with many drugs? This includes some antibiotics, allergy medicines, seizure medicines, cholesterol-lowering agents and certain cancer drugs. Make sure to ask the primary care provider how to best adjust your patient’s diet and what foods should be limited based on their medications. This applies to leafy greens like kale and certain anti-coagulant medications, as well as milk and iron supplements. Talking with the doctor about possible dietary interactions beforehand can help to ensure your healthy eating choices have the desired positive effect.
7) Can I get some training for specialized care given at home?
Sixty-six percent of caregivers in Canada say the pandemic has made caregiving even harder. While attending to patients newly discharged from the hospital, many caregivers are finding themselves performing challenging medical tasks at home, such as injecting medicines and inserting catheters. It is important that caregivers are properly prepared to undertake these duties and keep the patient safe. Getting detailed instructions and even a demonstration of how to do necessary procedures before the patient leaves the hospital is paramount. Prior to my father’s discharge with a feeding tube, I asked to observe the nurses’ in-service training and met several times with the nutritionist to learn exactly what needed to be done. Once he was home, the insurance gave me two weeks with a skilled nurse to continue learning how to care for him. It was a frightening responsibility at first, but by the end of the training I felt confident, and my father knew he was in great hands. So, whether it’s tube-feeding, CPR, wound dressings or something else, don’t be afraid to ask for help and training. With your earnest desire to do the best for your patient, you will be surprised by how quickly you learn!
As a caregiver, you play an essential role in helping to prioritize patient safety. Over 300 million patients are impacted by a medical error but having a dedicated advocate by a patient’s side asking questions and providing the healthcare team the proper information can help reduce these numbers.
For more information or resources, visit: https://patientsafetymovement.org/i-am-a-family-or-personal-caregiver/
Healthcare speaker Alicia Cole, is a medical error survivor turned patient safety consultant and board member of the Patient Safety Movement Foundation.
