Health care rights and responsibilities
 

Since joining SR almost three years ago, one of the more common topics/concerns I've noticed in our forums is about experiences with health care providers.

This hits close to home for me on several levels. Until switching sectors several years ago, I worked as a non-clinical professional in health care (mainly hospitals) for 21 years; I learned a lot by being part of the system. Beyond that, as a daughter, I have spent lots of time in hospitals and clinics, mainly with my mother. Mom, who is frail and elderly, was in the hospital from Saturday 'til earlier today. Beyond that, I've recently begun a new journey, seeking some help for anxiety and depression -- not an easy thing for me to share broadly, but something I'm glad I've done, especially because I'm committed to safeguarding my sobriety and recovery. I'm just a tad over three years sober.

I've spent most of the last six days in the hospital with my mother. It gave me a lot of downtime to ponder health care, its role in our lives, our expectations, our rights, our responsibilities and what we can do to be partners with those who provide health care and have experiences that help us. Some thoughts:

1. Hospitals and health care providers may excel at providing patient- and family-centered care. Or they may not be so great at it. Or somewhere in the middle. Regardless, every hospital is required to have someone whose job is to field complaints from patients/families, advocate for them and work toward a solution. If you didn't have a good experience, ask for the contact information of the person charged with patient advocacy so that you can discuss what happened.

2. Be completely honest about your alcoholism/addiction. This includes the amount and frequency of alcohol use, as well as legal and illegal drugs. Don't let embarrassment stand in the way because your care providers need to have a totally clear picture of your drinking/use in order to safely care for you. They've heard it before. When I confided to my new physician that I'm a recovering alcoholic, she didn't judge me. She high-fived me. I cannot guarantee everyone will have that experience but you just might.

3. Don't wait to get medical attention. Fellow SRers care about you but we cannot help you medically. When you're advised to seek medical care, it's because it's the right thing to do. Not doing it can have dire consequences.

4. Be your own advocate. Ask questions. Raise concerns. Yesterday, for instance, I told the anesthesiologist caring for my mother that she was really impacted by the sedatives used a couple days earlier for a procedure. He told me he was glad I mentioned that because there was a different sedative he could use, one that would leave her system faster. I was so glad I spoke up because Mom was far more lucid after the second procedure. I also got frustrated and teary over her lack of sleep and, working with the physician on duty, we were able to craft a solution that allowed her more sleep, including melatonin at night. It helped a lot.

5. Expect a very conservative approach to pain control. The medical (and dental) systems have been part of the problem with opiate addiction and they're trying hard to fix that. Ask about forms of treatment to help with pain such as physical therapy, aquatic therapy, integrative treatments (including aromatherapy, massage, guided imagery) and other options. Larger hospitals will have physicians who deal solely, or mostly, with pain. Ask to see a physician or advanced practice professional such as a nurse practitioner who focuses on pain control.

6. Follow instructions. You'd be surprised how many problems arise in health care because a patient decided not to comply with discharge instructions. Or didn't understand them. Again, ask questions if you're not sure. Bring someone with you to help you with the process.

7. Say "thank you" when you have a good experience. You can be sure that every single person who works in clinical care has experienced verbal abuse, and worse, from patients and/or their families. They've been told how stupid they are. They've been threatened. A kind word and expression of gratitude go a long way.

A lot of what I've written above is about your role and your responsibilities in being a partner in health care. More about that is available here: Patients & Consumers | Agency for Healthcare Research & Quality

You also have rights. Here is more information, particularly regarding medical error, discharge issues and quality concerns. This link also describes how you can file a complaint about a hospital/health care system: http://www.hhs.gov/answers/health-ca...are/index.html

(I should note this information is U.S.-specific.)

It's not a perfect system. Providers know that, especially when it comes to mental health and addiction. This morning, I saw this sign in my clinic lobby. I think it's progress.

http://www.soberrecovery.com/forums/...3-img-3724.jpg

Excellent, Venecia. Thank you.

Thank you for a most informative post, Venecia.

I'm sorry to hear about your Mother.

I hope she's on the mend. :hug:

Thank you so much for this post. Very well written and informative!

Great post, Venecia, thank you. I hope your mom is better!

I would comment on two points:

I think this is an issue for many of us addicts / recovering addicts, especially when we have neglected healthcare appointments for a long time and don't have doctors that we know and trust. Also, many people are reluctant to admit the addiction because they are afraid of it going into medical records and potential privacy violations. I agree with the honesty completely though, treatment can be ineffective or even dangerous without the doctors' awareness of especially an active addiction problem.

This one is something quite easy to forget or ignore. I have experienced it myself having done clinical work in the last couple years. People often say even if the received care is decent, they don't own a 'thank you' or gratefulness to the providers since it's a paid service and the money is enough reward. I think there are special elements of this especially in the mental health factor.

In 1972 the American Hospital Association adopted the "Patient's Bill Of Rights" (revised in 1992.)

http://www.qcc.cuny.edu/SocialScienc..._of_Rights.htm

I personally like the concept of patients' "Rights AND Responsibilities" and think it's a good idea for hospitals to somehow inform patients what those are; either in a brochure or posted in places that are easy to read. Here is a link to what Johns Hopkins has.

http://www.hopkinsmedicine.org/the_j..._of_rights.pdf

This is a really excellent post Ven X

There are many useful observations in your post Venecia thank you. I hope your mom is on the mend

Thanks, Teatreeoil. I really like the Johns Hopkins piece. Bill of Rights tend to be based on state policy and hospitals are required to post them. The result, though, is that what's posted and distributed to patients is often a verbatim reprint of long, bureaucratic language. Some hospitals also are beginning to post patient responsibilities. Again, I really liked JH's.

Thanks, all, for the kind support for my mother. She's home now and continues to do well.

That's a great post Venecia, sorry to hear about your mother!! :hug: