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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

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A Look Back at the IDF National Conference

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Posted on 24. June 2015

The Road to New Orleans

The Immune Deficiency Foundation is hosting its annual national patient conference in New Orleans June 25-27. The conference will feature educational and social opportunities for patients and their families to further their knowledge about primary immune diseases. [More]
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Posted on 21. May 2015

PI Parents: We’re No Different

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Posted on 19. March 2015

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IG Living Blog | I Am the Captain of My Own Healthcare Ship
IMMUNE  GLOBULIN  COMMUNITY
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 2. January 2020

I Am the Captain of My Own Healthcare Ship

By William S. Hindin

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I am a strong believer in personal empowerment, especially when it concerns healthcare.

A few years ago, when I was the sole caregiver for my 93-year-old mother, I learned a great deal about being a caregiver and about patient empowerment. I read everything I could in regard to Medicare, ethics, medical literature and how to be the best caregiver I could be.

At a number of points, I needed to make some serious decisions about my mother's healthcare. Luckily, my reading and education regarding patients' rights came in very handy.

I got a call one Friday evening from my mother's primary care physician, who said it was time for me to put my mother into hospice. I asked him why, and he gave reasonable facts to support his recommendation. I replied that he saw my mother once every four to five weeks, and I was with her 24 hours a day. I explained that I did not believe my mother belonged in hospice at that time. I understood the benefits of hospice but also the services that would be discontinued under hospice.

I told him that as my mother's caregiver, in my opinion my mom was not yet ready for hospice. She was still enjoying life, able to go out and interact with the world, and was eating and drinking normally for her situation. She woke up every morning at 8 a.m., got dressed with my help, brushed her teeth and hair herself, and even insisted I help her put on her favorite earrings. She was still living a happy life.

The next thing I said to the doctor took a lot of inner strength, but I think it was important. After I stated I did not believe she was ready for hospice, I asked him if he was insisting I do so. He said no, but he said he disagreed with me. I replied: "You are a very, very important part of our team. But you are not the captain of our team. My mother and I (as power of attorney and sole caregiver) are co-captains of the team. We have the power to make the final decisions on her care."

I explained to the doctor that my mother and I had recently discussed her going into hospice, and she clearly understood the changes that would come. She unequivocally expressed she did not want to go into hospice at that time.

I asked the doctor if he was quitting the team, and if he was, I needed to know immediately as I would quickly have to find another doctor to be on our team. He remained my mother's caring primary care physician until the end of her life nine months later, and he provided kind and compassionate treatment to my mother throughout.

I feel strongly that each of us as patients is empowered to make our own healthcare decisions. The members of our team — the doctors, physician assistants, nurses, healthcare workers, social workers, clergy and many others — are all integral parts of our assembled team. Each one has a unique set of skills to add to making decisions regarding the quality of our lives.

We are the captains of our team. We can make informed choices regarding our treatment. We have the power to say no to any recommendations, as well as yes. But, we have a tremendous responsibility to educate ourselves, fully and completely understand our rights, investigate our options, and make informed decisions in taking full responsibility for our own healthcare.

There is one more point to be made and it may be the most important part of this discussion: Whether caregiver, patient advocate for someone else or for ourselves, our overriding guide must be that we show kindness, compassion, sympathy, sensitivity and forgiveness at all times. These attributes must be at the root of all we do at all times. Without love, there is no life.

We are all captains of our own healthcare team.


Copyright© 2019 William S. Hindin

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