Posts Tagged ‘Patient engagement’

Huffing and puffing

February 26th, 2015 8 comments

can't breaathI don’t generally talk much about my own health, but when I think it might help somebody else out, why not?  I have been a generally healthy fat woman most of my life, and I hardly ever go to the doctors.  I don’t take many medicines and I haven’t had as much as a cold this winter. In my lifetime, I have had a two  babies, a few gynecological procedures, got my tonsils out,  had a broken ankle, two kidney stones, and that bout with uterine cancer a few years ago….quickly cured with surgery.  That’s my history in a nutshell.

But, lately I have suffered with shortness of breath. It’s no fun because small tasks like doing laundry and brushing my teeth brings it on, and it diminishes my stamina and interferes with walking distances.  For several years, I have had difficulty breathing after climbing stairs, but it has gotten much worse.   After a flight home last November, when I got off my plane, I started feeling a tightness in my chest and then the unrelenting cough that followed.  Since then, I have had persistant difficulties.  I have blamed it on our pellet stove, my weight, getting old, a dusty house, etc.  But, it finally sunk in that  this was not going away, and it is not smart to diagnose myself.  I am not a doctor, and I don’t pretend to be one.

So, today I had my first doctors appointment for SOB.  This  is only my 2nd visit ever with this new doctor.   I really appreciate his manner, his  no nonsense way of speaking, and his intelligence.  Mostly I appreciated that he both listens AND speaks.  We partnered up!   He ordered a 6 minute walk test, a pulmonary function test, an EKG (all done in his office)  and a Chest Xray.  He considered adding a chemical stress echo cardiogram, but we delayed that because the PFT indicated emphysema!


I smoked in my youth and until I was 35. It’s been 30 years since I lit up.   Interestingly one of the reasons I quit is that in two of my nursing jobs,  I administered  PFTs , and so I did a couple on myself!  My pulmonary function was declining back then because of smoking  and so I quit.  It was one of the hardest but best things I ever did for myself.  I had an immediate improvement in my breathing, stamina and capacity for exercise back then.

I’ve always been proud that I quit, and afterward, I could  do things without huffing and puffing.  My deceased father had emphysema, and my mother has asthma.  I have seen them both struggle to breath.   I have watched them suck in inhaler mists and take medications for most of my adult life.  I never thought I would have emphysema, but could it be the lesser of two evils?  The differential diagnosis was  Coronary Artery disease/blockage….and guess what they would have recommended for that.  No, I don’t want to think about that.  We won’t go there unless necessary.

So, my plan is to drop some of this weight, start some kind of walking regimen (spring MUST be almost here isn’t it?), use the steroid inhalers that the doctor gave me, and hope for improvement.

I’ll go back in 2 weeks.  I’m hoping to avoid further testing and procedures.  We shall see.  I’ll share this journey, like I did with the cancer. It just might help someone else.  I’m so pleased that I found a doctor that I could ask as many questions as I wanted.  He explained ‘our’ plan in detail, and we move on.

Chapter 2 in 2 weeks.

Who gets to say that Healthcare is Patient Centered?

October 23rd, 2012 2 comments

Patient engagement and Patient Centered Care are buzzwords and trendy goals of primary care doctors, Hospitals and other providers these days. I will attend a meeting with PCORI, or Patient Centered Outcome Research Institute starting on Friday. Before I go and absorb what the other 149 stakeholder attendees have to say about Patient Centered Care, and I forget what ideas are mine and what are somebody else’s, I am going to write this blog entry.

There was a day when becoming a healthcare worker was considered a calling. That calling was rated right up there with becoming a nun or a priest. It was kind of a sacrifice, a career chosen to be in service of society and sick people. There have always been different levels of caring. Some cared more than others, and some were just plain mean spirited..(nasty tempered crotchety nurses and doctors were not unheard of for sure). But, generally, becoming a medical worker meant your patients came first, and you genuinely cared. You didn’t just care because you were paid to. When you cared for patients, you didn’t consider what kind of insurance they had, or if they had any at all. You didn’t worry about who they were or where they came from. You never judged them. You just knew they were sick or injured and vulnerable and they needed your comforting and help. You gave that help/care unconditionally. I’ll admit, that was difficult sometimes, like the time I had to triage an arrogant young murderer and rapist of a little girl , or when I had to care for the young woman who beat my son black and blue when he was only 3 years old, while she baby sat him. But, I was never cruel to anyone, even those despicable people.
I didn’t recognize it during my years working as a nurse, but I believe I was delivering patient centered care. Of course, I never asked them how I was doing, so it might be a little arrogant of me to say that.

Now we have corporate centered money making care, government centered care, rich vs poor centered care, political centered care, and provider centered care.

The quality of care that a person gets now depends on way too many factors. Money is #1. If you do not have good insurance coverage, you will find it terribly difficult to find a practice that will care for you. Some say…that’s no problem…just go to the ER. The ER does not give patient centered care. They treat a problem, not the entire person. Healthcare maintenance and necessary screenings are not provided in ERs. If you cut yourself they will sew you up, but you will not get your hypertension or other chronic illness treated there. They only treat the immediate problem.

If you do have good insurance, there may be some who will take advantage of that and order studies that are not necessary. Automatically doing an MRI for back pain is not patient centered care…that would be money oriented care. MRIs are very expensive. Advil, heat alternated with ice and some gentle exercise may cure your back pain and at a much lower cost, to both you and your insurer.

Balance is necessary for care to qualify as patient centered.
This is a list of components that I think are absolutely necessary to qualify care as Patient Centered.

1. The patient is at the hub of their care
2. The patient is revered, respected and deferred to on all decisions
3. The patient makes the final decision on care
4. Questions are encouraged and answered.
5. All alternatives, including no care at all, are discussed and the advantages and disadvantages of all.
6. Possible complications, including possible harm and or infections must be part of the discussion of alternatives. Real time patient safety and quality data will be readily available on hospitals and other healthcare settings, and on providers.
7. No one will be asked to sign an “informed consent” until they are informed.
8. All projected costs would be laid out for the patient.
9. The patient’s age, healthcare status,  medical literacy, cognitive skills, abilities and disabilities, cultural beliefs, and all other particulars about the patient will be considered in recommendations and decisions about their healthcare.
10. Decisions on end of life or comfort care will be the decision of the patient as long as they are competent to make that decision. All patients will be encouraged to assign a durable Power of Attorney, and write a living will.
11. All possible preventative education will be provided to patients prior to treatment and/or hospitalization when time allows or during Hospitalization during emergencies
12. Appropriate screenings will be done according to age, and the care or procedures that patients are facing. Unless emergent, procedures will be delayed if screenings indicate that the patient is currently at risk if they have elective procedures.
13. A trusted bedside advocate will be with the patient if they want, at any time of day. Restricted visiting hours would be eliminated.
14. RN to patient ratios would always be appropriate for the level of care being delivered.
15. Long waits in waiting rooms and for assistance when hospitalized would be eliminated.
16. If things go wrong, honest immediate disclosure would take place and assistance (emotional/financial/other) in dealing with any harm would ensue. Patients would never be charged for costs associated with preventable healthcare harm. Patients and their families would become integral in the root cause analysis, and considered part of the solution so other patients would not suffer through a similar preventable harmful event.
17. Second opinions would be encouraged and a matter of routine. All insurances would reimburse for second opinions.
18. Patients will be able to request their records or at least a look at their records and there will be no reluctance or altering of records by the provider. Better yet, the patient can access their entire health record online.
19. Patients would not be expected to leave their free will at the door of a Hospital or other healthcare setting.
20. Patients would be cared for in freshly disinfected room with clean equipment, and never in a room with another patient. This eliminates chances of contracting an infection from a roommate or being mistaken for the roommate, and will be more conducive to having an advocate with the patient. All healthcare workers would wash hands with soap and water before and after any patient contact and it would be done without reminders from Patients or families.
21. Verification of patient identity and staff identity would be routine, particularly prior to procedures and medication administration. Evidence based bundles and check lists would always be used , observed, and mandated.
22. Only recipients of care get to declare if the care was Patient Centered.

This is a long list, I know, and it is probably incomplete. I can add to it anytime. I welcome additions!

Great healthcare outcome. Luck or planning?

October 17th, 2012 No comments

It’s weird the things you remember…maybe even more weird the things you forget. One year ago today, I got my diagnosis of uterine cancer. I remember that phone conversation with my doctor almost word for word. It was alarming, but it didn’t really floor me. I just knew I had to get busy…and I got busy. I found the best GYN oncologist surgeon in Maine, and the best hospital to have my surgery in. Other than a long delay for an appointment and surgery, my experience was stellar. I am one of the lucky ones….or maybe it wasn’t all luck. Maybe it is what healthcare leaders and consumers are calling Patient Engagement. Every patient should do their homework before asking their doctor questions about prognosis, alternative care, and other things. Then they should research all that is availa
ble about their providers and learn about possible complications and what they can do to avoid them. I honestly think that preparing for healthcare…surgery or other procedures….is half the reason that some patients do better than others. Watch your caregivers…trust them to do right, but don’t assume they will….get them to wash hands, and not touch you unless it is with clean hands. Follow advice on showing up clean for surgery (antibacterial showers for a few days before), get a MRSA screening done, and have a trusted loved one or friend stay with you in the hospital. I did all of the above and more….and look at me today. I am cancer free and I had absolutely no surgical complications. I don’t consider myself a survivor…cancer was just a temporary condition that I managed to get rid of with some incredible help. I was very lucky, but I was also very careful making my choices.