To speak up for care and ask the right questions can go a long way in getting your loved one the care they deserve. When the gap in the system gets too big.
Pam recently had a personal experience advocating for her mom while she was in the hospital and then the nursing home for rehab. Advocating for a loved one in the healthcare system can sometimes feel overwhelming. Hospitals and nursing homes are often fast-paced environments, and gaps in communication or care can leave families feeling powerless.
But your voice matters immensely. By asking thoughtful, targeted questions, you can help ensure your loved one receives the best care possible. We will share some practical tips and essential questions to ask to become their strongest advocate. We will also share examples to help you understand where things can go wrong.
Speak Up for Care, Advocacy Does Matter
Navigating the healthcare system for a loved one is no small task. Picture this: your mother has just been admitted to the hospital. She’s feeling sick and overwhelmed, and you notice the doctors and nurses seem spread thin. Some things you’re told don’t add up, and you’re worried about medication errors or missed care. It’s moments like these when stepping in and proactively asking questions is critical to filling the gaps and ensuring her well-being.
Real Life Example One: Following discharge from the hospital mom was admitted to a nursing home for rehab. My sister took her to the follow up cardiology appointment. Pam was on speaker phone for the appointment. Mom was started on a new medication in the hospital. Entresto for her heart failure. All other blood pressure medications were stopped. After a couple of days of her blood pressure getting lower it got as low as 60/40 and the staff rushed into action. Entresto discontinued, IV fluids started and a fluid expander Albumin was given.
Upon discharge from the hospital the hospital doctor put mom back on her Lisinopril for her blood pressure and heart failure.
The cardiologist wanted to know why her Entresto was discontinued. “I want her back on this medication.” Pam explained what happened and he insisted on the fact that the Lisinopril caused her drop in blood pressure. I tried to explain that she was not on the LIsinopril when her blood pressure dropped. He wouldn’t listen. We insisted that now was not the time to go back on Entresto. The cardiologist was not pleased with Pam but this was a great example of standing your ground when advocating for a loved one.
Real-life challenges like this happen every day. While medical professionals work tirelessly, the system isn’t perfect. Your involvement helps provide the oversight and compassion only a loved one can offer. (or your advocate!) 👩⚕️
Questions to Ask During Doctor Visits or in the Hospital
Whether you’re speaking directly to your loved one’s doctor or coordinating with staff at a nursing home, here are some quick yet impactful questions to help you advocate effectively:
- What is the care plan for today, and why?
Understanding the immediate plan can help you stay aligned with the medical team and spot any potential oversights. - What options do we have for treatments or interventions?
Exploring all possibilities ensures your loved one isn’t rushed into a one-size-fits-all solution. - Are there any side effects or risks to this medication or treatment?
Medications and treatments bring benefits but may also have unintended effects. This question keeps your loved one’s safety front and center. - How are you managing their comfort or pain?
Ensuring that pain or discomfort is managed adequately fosters dignity in care and improves overall recovery. - What should we look out for when it’s time for discharge or continued care?
This helps you transition to the next stage of care fully informed and prepared. - Who should I contact if I have questions after this visit?
Knowing how to follow up ensures you’re never left struggling for answers later.
For help in preparing for a doctor’s appointment we have shared a link in the resource section for our free download, “Preparing for the Doctor Appointment”. This form will help you stay organized and write down questions you may have.
Advocating in Hospitals and Nursing Homes
When a loved one is in long-term care or a hospital for an extended period, your advocacy becomes even more important. Here are some specific steps you can take to address gaps and advocate effectively:
- Understand their rights. Be familiar with patient rights under Medicare and Medicaid. Nursing home residents, for example, have the right to be involved in their own care plan decisions.
- Build a rapport with staff. Regularly communicating with nurses, aides, and administrators creates a collaborative environment. Simple kindness can make staff feel appreciated and more likely to address issues quickly.
- Monitor the care provided. Take note of your loved one’s condition, how medication is administered, and overall hygiene. Don’t hesitate to speak up if something feels off.
- Ask about support services. Many facilities provide access to social workers, case managers, or ombudsmen, who can help mediate concerns regarding care.
Real Life Example 2:
During mom’s rehab (short, that is a tale for another day) stay we encountered issues with her receiving her pain medications timely. Oftentimes our recommendation for “as needed” medications such as pain medications be scheduled in the nursing home.
There may be only one nurse passing medications in the morning for a whole wing of residents. They may go from one end to the other before circling back to address the needs of your loved one. To avoid this possibility, ask if pain medications can be scheduled so they have a designated time to give and it is a “must give” medication vs. an “as needed.”
Unfortunately, we were not able to use this method. Mom had to get her pain medication before physical therapy so she had her pain controlled to participate better. The bad part was there was no schedule of therapy. It could be morning, noon, afternoon, or late afternoon. We never knew, so we could not have her pain medication scheduled. It was not uncommon for mom to wait 45 minutes and up to 1 hour and 15 minutes before her call light was answered and a pain pill brought to her.
Navigating Challenges
There may be moments when issues persist despite your best efforts. Here’s how to effectively handle those tougher situations:
- Stay calm and document everything. Keep notes of conversations, treatments, and decisions to help support your case if escalation is needed.
- Request a care meeting or “care conference.” Asking to meet with key members of the medical team or facility staff gives you an opportunity to clarify concerns and find solutions collaboratively.
- Use external advocates. If problems remain unresolved, don’t be afraid to contact outside advocacy organizations or an elder care ombudsman. These resources exist to ensure your loved one’s care is safe and respectful. We are here for you!
A Compassionate Reminder
Advocating for a loved one is no easy task, and there may be days when you feel frustrated by the system’s limitations. But remember that your presence and care make an incredible difference. Even asking small questions ensures your loved one feels supported and protected. You are their voice, hand-holder, and champion, providing a layer of care that no institution alone can give.
Often mistakes or errors are due to a lack of communication or training. We saw training as the biggest issue in the nursing home. We did speak to the administrator and she did acknowledge gaps in training.
There is so much more to this tale. We will share bits and pieces as it pertains to bringing you tips and strategies to advocate for your aging loved ones.
Final Real Life Example 3
We did choose to take mom out of the nursing home before staff felt she was ready to be discharged. Pam also knew mom would benefit from more intensive therapy at the nursing home.
Before you consider removing your loved one from a nursing home before “ready”, you must consider “AMA” or Against Medical Advice. If you cannot get a doctor’s order for discharge, your loved one may be faced with “Yes, you can leave, but it will be against medical advice.” If this happens while leaving a nursing home, your loved one may have the insurance or medicare advantage and deny payment to the nursing home for the days spent there. This could create an unwanted financial responsibility to your loved one. This would be a great time to consult a nurse patient advocate on how to avoid this situation.
Our last tool we would like to share is our checklist and guide to transitions in care. What is a transition? It is anytime your aging loved one changes levels of care. With Pam’s mom, she had 3 transitions. To the hospital, to the nursing home for rehab, and then back home. Each transition comes with its own set of challenges and risks for errors.
Our “Caregiver Checklist for Successful Care Transitions” walks you through different types of transitions and cues to make each change in care a success.
Quick Summary-Speak Up for Care-Simple Steps for Advocacy
- Ask direct questions like, “What’s the care plan today?” or “What are the risks of this treatment?” to ensure clarity in your loved one’s care.
- Monitor your loved one’s condition and create a strong partnership with medical staff.
- Be prepared to escalate concerns respectfully through care meetings or external advocacy resources when needed. Collaboration is always best.
- Remember, your love and involvement speak volumes, ensuring they feel seen and cared for even in challenging healthcare settings.
Every small step you take toward advocacy creates a safer, more supportive environment for your loved one. You’re making a profound impact one question at a time. 💛
Thank you for spending time with us this week. We’re so glad to be part of your journey in caring for your aging loved ones. It’s an honor to share resources, insights, and a little encouragement to support you along the way. We look forward to bringing you more helpful tools and compassionate guidance in the weeks ahead. See you back here soon!
With care,
Pam and Linda
Your Nurse Advocates
“Compassionate Care for Aging Adults Along With Peace of Mind for the Family”
Resources:
Prep for the Doctor Appointment-A Guide and Checklist
Your Nurse Advocate Free Resources
Transitions in Care Free Guide and Checklist
Advance Care Planning for Families of Aging Loved Ones. National Institute on Aging
About the Authors
At Your Nurse Advocate Consulting, Pam and Linda’s mission is to empower aging adults and their families to take control of their health, prepare for life’s uncertainties, and secure their peace of mind. We are dedicated to providing compassionate guidance, personalized support, and expert resources to help our clients navigate complex medical needs and organize their personal affairs.
As independent patient advocates we have a steadfast commitment to clarity, family well-being, and empowerment, we strive to make a meaningful impact by ensuring our clients feel confident, prepared, and cared for every step of the way on their healthcare journey.
Expert Guidance You Can Trust
With over 80 combined years of R.N. experience navigating the complex healthcare system, we stand as trusted guides for seniors and their families. Our expertise ensures they can access the care and resources they need without feeling overwhelmed by red tape or confusion.
