When I meet a new healthcare provider, I put them in one of two categories.
One category is for the providers who have a set list of questions that suit their own needs. They go with their own tune. When I ask a question, disagree, or want to discuss a different treatment option the healthcare provider is not aware of, the provider reacts with surprise or shock. These providers may sing the song of health care, but they don’t know my melody.
The other category is the health care provider that is interested in my specific melody. What is important to me? Studies show over and over again that empowered patients live longer. This type of healthcare professional recognizes the importance of patient engagement and values my input by using open-ended questions to gather information. These healthcare providers try to get in tune with me so we can harmonize.
I have lived with kidney disease since the age of two. I have learned the best ways to support my inner instincts and needs, and I respect the lifelong knowledge I have gained of my body and the melody that keeps it thriving.
What beat makes me dance?
Take, for example, the home nurse and nurse-in-training who came to help with an infusion of my IV antibiotic. As they bumbled a bit with supplies, I carefully watched every move they made to be sure they observed infection precautions.
I mentioned I needed to call the doctor about a medication missing from my list to ensure it was not a mistake. When they looked at my discharge papers and said the medication was not listed, I told them that did not mean the list was correct. I reminded them that medical errors happen all the time, which is why I check everything and wanted them to verify the list with the doctor. I mentioned I have prevented serious harm to myself on many occasions by catching mistakes.
The nurse asked me if they transplanted my left kidney or the right one. I replied that both of my kidneys were removed when I was 13, and my latest kidney is right smack dab in the middle of my body. She went on to ask why I was not on Medicare since I had a kidney transplant. I explained how Medicare health coverage applies only during the first 36 months after a transplant after which I had to apply for private health insurance.
As the nurse began to prime the lines for my IV, saline sprayed all over my iPad. Luckily, I had paper towels nearby. As the nurse continued to work, I educated her and her colleague on kidney disease and treatment options, and summoned my husband to bring them a stack of kidney education materials.
Since I was experienced in doing home dialysis for over a decade, I told them I would feel more comfortable if I did the infusions myself. I only needed a few supplies, including small gloves. Without responding, the nurse said someone would call me the next day to set up my infusions. I guess they were satisfied now because the boxes had been checked off for their patient visit.
If you have been in the hospital lately, you know there are doctors or specialists for every body part. And in most cases the person in charge is a hospitalist who doesn’t know your beat, or what tune makes your heart sing.
Whenever I am in the hospital for an unrelated kidney issue where the doctors do not know me, it is always refreshing to have them come and talk to me about my needs. It goes without saying that my primary need is to get better, but in addition to the medical care, the two other things I need are to have my pain managed and to get some sleep.
An important question healthcare professionals should ask is if you have a high tolerance for pain medication. It is about how they can make you more comfortable so you can get the sleep you need. I realize there is concern about opioid abuse and addiction, but when I have Level 8 pain I do not really care. I care about getting my pain under control so I can sleep. Then I can get out of bed with the energy to get better and go live the life I was meant to live.
Most of the time I’ve been lucky, and my healthcare providers do beat to the rhythm of what I need. But on occasion, I have been left to suffer alone in a hospital room without anyone taking the time to really listen to me and understand what I need. These are some of the darkest hospital memories of my life.
I write this with the hope that if you have also felt this way, you will no longer feel you have suffered alone.
The healthcare field is supposed to work for and with us. Standardized healthcare checklists are helpful. However, I would add a few more questions so that healthcare providers better know how to find the melody of the patient and tune in to that individual person’s needs.
- How long have you been caring for yourself with this illness?
- What is most important to you while receiving care from me?
- Do you have any fears or challenges concerning your care we can work on together?
- What are you looking forward to when you get better or are released from treatment?
- We are going to do our best to help you feel better and address your medical needs. Okay?
- And finally, validate the patient’s own ability to manage and survive with an illness.
- Patients don’t care how much you know until they know how much you care.
I think the next time I am in the hospital (hopefully never, but I’m a realist), I’m going to have a one-page sheet of paper to give my healthcare team. On it will be a head shot of me to remind them I am a real person, along with a few sentences about me so they can learn my tune. Who knows? We may even enjoy the same music.
Lori Hartwell is the Founder and President of Renal Support Network (RSN) and the host of KidneyTalk™ Podcast Radio. Lori was diagnosed with kidney disease at the age of two. In 1993 she founded RSN to instill “health, happiness and hope” into the lives of those affected by chronic kidney disease. Lori is also the author of the inspirational book Chronically Happy: Joyful Living in Spite of Chronic Illness and is a four-time kidney transplant recipient.
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