What do patients want from their healthcare providers? They assume that we are competent to provide the service they are seeking. However, most will tell you, that first and foremost, they want to be treated as a person and not a diagnosis, number or an inconvenience. They want us to not only listen to them, but "hear" them. Treat them with respect and courtesy; answer their questions in a way that they will understand; explain what we are doing and why; explain why we are giving a medication and what side effects they need to be aware of. All of these topics and more come down to communication.
It's not just direct patient care givers who need to communicate effectively and appropriately with patients and their families, but everyone within the organization. The scheduler who is rude and uncaring about the patient's urgency for an appointment; A receptionist that says "we're out of wheelchairs, you'll have to walk" when it's clear that the person isn't able. Both are examples of a culture that isn't tuned into "caring" and sets the tone for the whole encounter.
Unfortunately, Karyn and Chelsea have experienced this recently. You have an abnormal test result for which you are waiting for an appointment. Two weeks pass, three weeks and no appointment date. Karyn calls to enquire when she can expect an appointment and is told "I don't do scheduling, you'll just have to wait like everyone else." Imagine the frustration, anger and anxiety this type of response caused. You are waiting to find out if your cancer is back and you're told to wait. While it may be true that this individual doesn't do the scheduling, wouldn't it have been better to say: "I'm sorry that you haven't been contacted yet. I don't do the scheduling, but let me check with them to see what the delay is. Can I put you on hold, or would you prefer I call you back?" The outcome may not be any different (she's STILL WAITING), but at least she wouldn't feel like nobody cares and that she is inconveniencing them.
Unless you or a loved one has gone through a major illness, you might not understand how every contact shapes the patient's experience and perception. We have an obligation in healthcare to do the right things, the right way for the right reason. Patients are not an interruption to our work, they are the reason for our work!
Saturday, May 14, 2011
Friday, May 13, 2011
The Ultimate Tool For Life Changing Events
Some friends of ours who are about to have a baby have introduced me to a great site! Carecalendar.org is a free tool for those looking to recruit and organize helpful family/friends/church members to help their loved ones through stressful times. This is a wonderful resource for those who are going through a life changing event like short term or chronic illness, having a baby, or losing a loved one. The calendar is customizable depending on the specific needs of the recipient - meals, transportation, house work, errands, you name it! You can let people know exactly what is needed and when, the calendar shows which needs have been met and which ones still need to be fulfilled, and the site even sends email reminders to those who have signed up to help.
I hope you can use this site as a tool to alleviate stress, maintain wellness for yourself and/or a loved one, and promote the sense of community that we all need throughout different stages of our lives!
-Chelsea
I hope you can use this site as a tool to alleviate stress, maintain wellness for yourself and/or a loved one, and promote the sense of community that we all need throughout different stages of our lives!
-Chelsea
Your Daily Dose of Inspiration
Meet Carly, a teenage girl who's changing the world of autism (Spanish subtitles):
http://www.youtube.com/watch?v=M5MuuG-WQRk&feature=related
To learn more about Carly:
http://carlysvoice.com/
Wishing you wellness!
Chelsea
http://www.youtube.com/watch?v=M5MuuG-WQRk&feature=related
To learn more about Carly:
http://carlysvoice.com/
Wishing you wellness!
Chelsea
Wednesday, May 11, 2011
Happy Fibromyalgia/CFS/ME Awareness Day!
To learn more about these syndromes, visit this informative and easy to read fact sheet: http://fmcfsme.com/documents/fmcfsme_factsheet2011.pdf
-Chelsea
Tuesday, May 10, 2011
I'm no expert.
My name is Chelsea, and I'm not an expert. At least not in the medical field. I went to school to become a licensed Massage Therapist, I did well in science in college, and I've had my share of health problems, so I'm not totally ignorant to the way the body works and how to fix it when something goes wrong. I can't say, though, that anyone is ever prepared for their mom to have as many health problems as mine has had (many of them secondary issues caused by Lupus,) and then to be diagnosed with cervical cancer.
My mom did the right thing. She hadn't been to the OB in a long time, because she'd taken care of me and my Nana. I began having seizures in 5th grade, was finally diagnosed a few years later, and was weaned off medication in my mid teens. At the same time, my grandmother was suffering from heart problems. There was a time when my mom was literally sitting in between my grandmother, who was having a heart attack, and me, having a seizure. Then, after the three of us moved into a beautiful house together, Nana was diagnosed with small cell lung cancer. So, you can see why taking care of her own personal health wasn't my mom's top priority - until she had a heart attack after her mom passed away. (That's a story for a different day, titled "How My Mom Stopped Smoking Cold Turkey.") She began going to the doctor regularly, found out she has type 2 diabetes, and began eating accordingly, exercising on a regular basis, and being the patient every doctor wants. I was so proud of her!
To continue the trend of taking better care of herself, she made an appointment for a well woman exam. The doctor saw something, but assured her it wasn't cancer. Obviously, he was wrong. I went into "taking care of business" mode, like I do in most emergency or stressful situations. We went to every appointment together, then every treatment. The treatment was intense - 6 weeks of chemo assisted radiation, where, you guessed it, they give them both during the same time period. I learned that there are as many combinations and types of chemo and radiation as there are flavors of Jelly Bellies. I learned that ginger ale can be a miracle, and that my mom really does have that much hair. (She lost half of it during treatment, and you could barely even tell.)
I also learned that I will speak up for myself and my family when it comes to their well being, no matter how high up in rank that person is - or thinks they are. I calmly and respectfully called the radiologist a liar when he insisted he told us one thing when he told us another. I wrote a long letter to the Quality Care department explaining that the radiologist was only at half the appointments, and that his PA was either too busy or not qualified to stand in for him. I explained that my mother didn't even know that she should have seen a social worker until her last day of treatment, at which point it was too late for her to receive any benefits. I recounted the times we were lied to, ignored, and mistreated. I praised the radiology nurses and techs and the chemo team, who were all kind, compassionate, and funny. I praised the oncologist, who carried a rolodex of all her patients in her pocket and made phone calls after hours to check on them. And you know what? I saw results. Suddenly, there were a bunch of very concerned people who had read my letter. Suddenly, people were being "reassigned."
I'm no expert, but you don't need to be to stand up for what's right. It helps to educate yourself and ask questions, because other people won't always do it for you, but you don't have to know everything. You just have to care. You just have to make your voice heard, because you may be the only one speaking for hundreds who can't speak for themselves.
My mom did the right thing. She hadn't been to the OB in a long time, because she'd taken care of me and my Nana. I began having seizures in 5th grade, was finally diagnosed a few years later, and was weaned off medication in my mid teens. At the same time, my grandmother was suffering from heart problems. There was a time when my mom was literally sitting in between my grandmother, who was having a heart attack, and me, having a seizure. Then, after the three of us moved into a beautiful house together, Nana was diagnosed with small cell lung cancer. So, you can see why taking care of her own personal health wasn't my mom's top priority - until she had a heart attack after her mom passed away. (That's a story for a different day, titled "How My Mom Stopped Smoking Cold Turkey.") She began going to the doctor regularly, found out she has type 2 diabetes, and began eating accordingly, exercising on a regular basis, and being the patient every doctor wants. I was so proud of her!
Nana and me.
To continue the trend of taking better care of herself, she made an appointment for a well woman exam. The doctor saw something, but assured her it wasn't cancer. Obviously, he was wrong. I went into "taking care of business" mode, like I do in most emergency or stressful situations. We went to every appointment together, then every treatment. The treatment was intense - 6 weeks of chemo assisted radiation, where, you guessed it, they give them both during the same time period. I learned that there are as many combinations and types of chemo and radiation as there are flavors of Jelly Bellies. I learned that ginger ale can be a miracle, and that my mom really does have that much hair. (She lost half of it during treatment, and you could barely even tell.)
Mom walking me down the aisle. After the wedding, I donated my hair to Locks of Love,
and she donated hers to chemo.
I also learned that I will speak up for myself and my family when it comes to their well being, no matter how high up in rank that person is - or thinks they are. I calmly and respectfully called the radiologist a liar when he insisted he told us one thing when he told us another. I wrote a long letter to the Quality Care department explaining that the radiologist was only at half the appointments, and that his PA was either too busy or not qualified to stand in for him. I explained that my mother didn't even know that she should have seen a social worker until her last day of treatment, at which point it was too late for her to receive any benefits. I recounted the times we were lied to, ignored, and mistreated. I praised the radiology nurses and techs and the chemo team, who were all kind, compassionate, and funny. I praised the oncologist, who carried a rolodex of all her patients in her pocket and made phone calls after hours to check on them. And you know what? I saw results. Suddenly, there were a bunch of very concerned people who had read my letter. Suddenly, people were being "reassigned."
I'm no expert, but you don't need to be to stand up for what's right. It helps to educate yourself and ask questions, because other people won't always do it for you, but you don't have to know everything. You just have to care. You just have to make your voice heard, because you may be the only one speaking for hundreds who can't speak for themselves.
Monday, May 9, 2011
Where to begin?
The biggest challenge in starting this blog is where to start. Start at the beginning (about 6 years ago) or what's happening now? To better understand the complexity of this, here are a few more background details.
Our mother was a strong, professional and very prideful person. The last years of her life she endured many major health problems including cardiovascular and cancer. She wasn't the easiest patient to deal with. She demanded respect and expected all of her caregivers to provide excellent, TIMELY and effective care. If you didn't meet her expectations, she had no problem letting you know. Over a period of time, mom's health declined to the point that she no longer felt safe living alone. Always at mom's beck and call, my sister Karyn and her daughter Chelsea moved in with her. Living in another state, my ability to provide daily assistance wasn't an option. Karyn became her primary caregiver until she passed away. We developed a very close bond with nightly phone calls and visits as frequently as possible. Being in healthcare, I frequently was the interpreter of all the medical gibberish.
After Mom's passing Karyn, Chelsea and I dealt with all of the usual issues with the estate and some very disfunctional family members. This only served to bring us closer together. Of course the majority of the estate concerns fell to Karyn. As many of you know, this is a very stressful and emotional process.
Flash forward a few months, and I'll never forget the phone call. "I'm having chest pains, trouble breathing and feel like I'm going to pass out...."
Our mother was a strong, professional and very prideful person. The last years of her life she endured many major health problems including cardiovascular and cancer. She wasn't the easiest patient to deal with. She demanded respect and expected all of her caregivers to provide excellent, TIMELY and effective care. If you didn't meet her expectations, she had no problem letting you know. Over a period of time, mom's health declined to the point that she no longer felt safe living alone. Always at mom's beck and call, my sister Karyn and her daughter Chelsea moved in with her. Living in another state, my ability to provide daily assistance wasn't an option. Karyn became her primary caregiver until she passed away. We developed a very close bond with nightly phone calls and visits as frequently as possible. Being in healthcare, I frequently was the interpreter of all the medical gibberish.
After Mom's passing Karyn, Chelsea and I dealt with all of the usual issues with the estate and some very disfunctional family members. This only served to bring us closer together. Of course the majority of the estate concerns fell to Karyn. As many of you know, this is a very stressful and emotional process.
Flash forward a few months, and I'll never forget the phone call. "I'm having chest pains, trouble breathing and feel like I'm going to pass out...."
You're too young to have all these problems....
Heart attack, Cardiogenic shock, 3 STENTS, Epilepsy, Lupus, Fibromyalgia, Type II Diabetes, 3 knee surgeries, Aortic Valve Insufficiency, Cervical Cancer and Polyneuropathy. Oh, and throw in a broken toe to boot!
The list of diagnoses is to represent all of the different specialities that Karyn has encountered and to show that the behaviors good and bad cut through all areas of this healthcare system. I wonder how their patient satisfaction scores look? Think I will look them up on Hospital Compare.
If you go to the following website, you can see how patients rate specific hospitals. Last updated on 4-11-11. http://www.hospitalcompare.hhs.gov/ Sadly, the healthcare system Karyn is using is below state and national averages in all areas except one. Clearly we aren't the only ones that have had less than stellar experiences. Do they not know that starting as early as the end of 2012, that their reimbursement is going to be reduced and they will have to earn it back based on their Patient Satisfaction scores in addition to other quality criteria? Regardless of payment, treat patients like they are your favorite family member or friend, it's the right thing to do.
The list of diagnoses is to represent all of the different specialities that Karyn has encountered and to show that the behaviors good and bad cut through all areas of this healthcare system. I wonder how their patient satisfaction scores look? Think I will look them up on Hospital Compare.
If you go to the following website, you can see how patients rate specific hospitals. Last updated on 4-11-11. http://www.hospitalcompare.hhs.gov/ Sadly, the healthcare system Karyn is using is below state and national averages in all areas except one. Clearly we aren't the only ones that have had less than stellar experiences. Do they not know that starting as early as the end of 2012, that their reimbursement is going to be reduced and they will have to earn it back based on their Patient Satisfaction scores in addition to other quality criteria? Regardless of payment, treat patients like they are your favorite family member or friend, it's the right thing to do.
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