A week ago, my world was rocked to its core. My sister, caught in the throes of a medical crisis, where doctors had to put her into medically induced coma. She spent several agonizing days drifting in and out of consciousness as doctors raced against time to figure out her condition. Our family was in a constant state of flux, ping-ponging between home and hospital to be by her side as she battled her way back to health.
Thankfully, the worst is behind us now. Yet, I find it crucial to reflect on this experience and extract the lessons offered on best practices as a patient advocate.
Centering with Peace
Energy is Key: As a patient advocate or an advocate of any kind, your energy can greatly influence the situation. Initial shock and panic are natural, but it’s essential to center yourself and strive for calmness, clarity, and focus. I found solace in brief meditation sessions, deep breathing, and visualizing positive outcomes. While I appreciate the power of prayer, I believe meditation – the act of listening rather than asking – has its unique value during medical crises. And that is especially when you are working as a patient advocate. It helped me stay grounded and focused, even when my sister had to be intubated and put into a medically induced coma. Rather than letting my emotions run wild, I asked pertinent questions and continuously advocated for measures to help her breathe independently, knowing that prolonged dependence on a breathing apparatus could increase her risk of pneumonia.
Find Support
Find a Stand-In: If you can’t be there personally, ensure someone reliable is present with your loved one. This person should familiarize themselves with the attending doctors, understand the procedures being prescribed, and monitor your loved one’s condition. Their presence can make a significant difference, ensuring your loved one receives appropriate care and attention from the hospital staff.
Patient History
Know their Medical History: Having knowledge of your loved one’s medical history can be instrumental in making critical decisions. Something as seemingly insignificant as knowing whether they have a stent or any other metal implant can influence the choice of diagnostic procedures and medications.
PHONE ETIQUETTE
Preparedness During Phone Updates: When calling for updates, it’s beneficial as a patient advocate to have a list of questions prepared in advance. This ensures you cover all bases and don’t overlook any important details. I have found that when I get an answer I am not expecting I can get blown off track and caught up emotionally in what I’ve been told and then forget a question. It’s equally essential to document the responses you receive. Jot down these answers, along with the name of the medical personnel you spoke with, the date, and time. Store this information in your phone’s notes section for easy reference later. This practice can be a lifesaver if there are mix-ups or misunderstandings about procedures and their timelines.
Establishing a Consistent Calling Schedule: Make it a point to inform the person you communicate with (usually the attending nurse) about your plan to call back at a specific time, and stick to this schedule. Remember, nurses are managing multiple patients, so try not to call excessively. If your loved one cannot answer the phone themselves, calling two to three times a day is usually sufficient. Also, be mindful of shift changes, typically around 7 am and 7 pm. Avoid calling during these transition times when the staff is busiest. Instead, reach out once the new shift has settled in, perhaps around 8 am, 2 pm, and 8 pm, unless the nursing staff advises otherwise.
REMAIN OPTIMISTIC
Maintaining a Positive Outlook: When presented with challenging information, it’s crucial to approach it with a balanced perspective. Medical opinions are often based on available data and past patient experiences. They are not absolute predictions of your loved one’s trajectory. It’s essential as a patient advocate to hold onto hope and faith, acknowledging the possibilities but not surrendering to negativity.
BE COURTEOUS
Fostering Good Relations with Hospital Staff: While at the hospital, make an effort to show appreciation towards the staff and nurses. A little courtesy, kindness, and appropriate humor can go a long way in creating a positive atmosphere. The energy you bring can significantly impact how your loved one is treated and how swiftly they receive attention in a crisis.
TAKE BREAKS
Prioritizing Self-Care: Don’t forget to take care of yourself during this taxing time. Allow yourself mental breaks; a short walk in the fresh air or even around the hospital can rejuvenate your energy levels. If possible, let another family member stand guard while you catch up on some sleep. Fatigue only compounds stress and can cloud your judgment when your loved one needs you the most.
UNDERSTAND LIMITATIONS
Acceptance of Limitations: As the oldest child, I’ve always been my mother’s “go-to” helper. This role taught me to be resourceful but also burdened me with a constant sense of obligation to fix everything. In medical situations, this is often impossible, and it can leave you feeling helpless. Sometimes, even doctors can’t fix things. When faced with such circumstances, the best course of action is to stay hopeful. You should provide the support your loved one needs, be an informed advocate, and help in ways within your control.
KIND COMMUNICATION
Never Underestimate the Power of Communication: This is perhaps one of the most crucial lessons I learned. Never assume that someone in a coma or unresponsive state cannot hear or understand what’s happening around them. My sister shared instances where nursing staff made disparaging remarks about her when they thought she was unconscious, and no family members were present. They assumed she couldn’t hear them because she couldn’t respond or see them. This incident underscored two significant points: First, always speak positively to your loved ones, even if it seems like they can’t hear you. Numerous accounts suggest that people in comas can hear and understand their surroundings, and positive reinforcement can potentially aid their recovery. Second, treating someone with dignity and respect is paramount, regardless of their conscious state. Incidents like the one my sister experienced are disheartening and infuriating. It highlights the need for a vigilant patient advocate to ensure your loved one receives the care and respect they deserve. Unfortunately, not everyone in healthcare will treat your loved one as they would their own.
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