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Patient Advocacy: Listening and Observing

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I have found myself as patient advocate many times through the years. It is a role I enjoy, excel at, and one that comes quite naturally. I have the ability to become invisible for long periods of time yet pop into action when needed. I’m good in a crisis without becoming flustered or overwhelmed. I can maintain critical thinking and act when pressure ensues without letting my emotions bubble over the top. These are important keys in patient advocacy. I’ll describe three stories here to clearly show why I believe this is a necessary task to be handled when illness or injury interferes with our daily lives.

Story One

My father-in-law was in a long-term care facility. We visited him regularly. It fell to me to see him most often because of my more flexible schedule. I noticed he was “off” one day and checked in with the nursing staff. Though they weren’t initially as concerned as I was, we decided a visit to the ER was warranted.

My husband joined me in watching his father’s steadily worsening state. After nearly an hour and being told dad was going to be transported back to the nursing home, we sought out a doctor for more information. Though not verbatim, we were basically informed that dad was old and people eventually die of something. We were completely floored. We were not given any specific information on the problem or the proposed treatment.

After  transport, I stayed with dad as he continued to be somewhat disoriented and unwell. I inquired about sending him a little further to a different hospital ER for evaluation. It turned out his insurance would cover it (Medicare/Blue Cross), so I insisted. After several hours, they chased down a severe bladder infection and admitted dad to the hospital.

Had someone not been present to advocate for dad, he likely would have died because of that episode. It takes an observant individual who knows the patient well enough to notice what’s out of the ordinary behavior or abnormal. Our intuition and daily interactions with people can be key to helping trigger advocacy.

Story Two

A friend ended up in the hospital with a mysterious ailment and his wife (one of my closest friends) called to tell me about it. I traveled to sit with them each day for several days (until he was diagnosed and well on the road to recovery). While I was there for my sick friend, I was there as much for his wife.

When a loved one is ill or injured, it can be overwhelming to try to function with any normalcy. My friend was traveling to and from the hospital in the dark while trying to keep as many day-to-day necessities functioning as possible. I supplied moral support, her lunch, and took copious notes during the parades of doctors.

It can be vital for someone to keep track of the information different teams of doctors bring to the equation. Taking down names and times at the very least lets a medical team know that someone is holding them accountable. Asking clarifying questions can help everyone remember when emotions overwhelm.

Story Three

Another close friend was hospitalized recently. This is a person that I care a great deal about and with whom I work on occasion. My first visit was only an hour long but by morning I was rearranging my schedule and ready to camp out for as long as was needed. It was clear to me that she needed an advocate to speak with the staff and to inform friends and loved ones who cared and wanted to help but for whom my friend had no tolerance due to her severely ill state. I sat quietly for at least eight hours each day for several days tending to her needs and helping the hospital staff and loved ones stay updated on her status.

Most care facilities are stretched beyond limits. Even when checking vitals and dispersing medication when normally scheduled, it’s not the same as having someone observing constantly—especially when that someone can underscore that what the patient is telling is truth. For instance, this friend was in need of the strong medication they were delivering and it was important for them to know that she usually didn't do any drugs. When she asks, it’s because she really needs them.

It was also important to keep friends informed so they could focus on their best avenues of helping. Not everyone should use their energies to visit the hospital. Often the patient needs peace, solitude, and quiet. Many of us feel a need to care take others or entertain when we are visited. That often isn’t what a hospitalized person needs or wants to do.

While I could go into a lot more detail and give more information about each of these stories, I hope it’s apparent that these aren’t abnormal but rather ordinary experiences. Many people can’t simply set aside their everyday lives to advocate for others but networking can help facilitate the caring for our friends when needed.

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Blythe Pelham is an artist that aims to enable others to find their grounding through energy work. She is in the midst of writing a cookbook and will occasionally share bits in her blogging here. She writes, gardens and cooks in Ohio. Find her online at Humings and Being Blythe, and read all of her MOTHER EARTH NEWS posts here.


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