Partners with Patients Summitt
JARI HOLLAND BUCK is a business consultant, trainer and medical layperson who spent seven and a-half months in four hospitals by the side of her critically ill husband. She dealt with thousands of doctors and nurses and almost daily crises. During her husband???s six plus months on full life support, every organ in his body failed, some more than once. And ultimately, a stroke caused by a hospital-acquired infection destroyed the personality and mind of the man she married.
Her book, Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved Ones, described the lessons she learned and used in partnership with the medical community to produce a miracle, her husband???s survival. The book was recognized as the Winner in the ???Health Fitness for Family??? category of Parent-to-Parent Adding Wisdom Award and a Finalist in the ???Health??? category of Fresh Voices Book Awards. Her work following her husband???s discharge from the hospital and their ultimate divorce has been focused on helping others avoid the pain and loss both she and her now ex-husband have endured.
Jari???s advocacy work has been acknowledged by the Institute for Healthcare Improvements with a full scholarship to attend the 22nd Annual National Forum on Quality Improvement in Health Care as one of fifty patient activists. She has provide advice to the University of Toledo Patient Advocacy Certificate program and Hospital Stay Handbook is used as one of two textbooks. She also serves as an Advisory Board member for the University of Kansas Medical Center Otolaryngology Department and is currently authoring a series of six articles on patient advocacy for a Health and Human Services publication called, The Best Times. Jari contributes to www.healthy.net,www.whathappensnow.com, www.llewellyn.com, www.bizymoms.com, www.selfgrowth.com, www.disabled-word.com, www.lovinghealing.com, The Story That Must Be Told and was featured in ???Ahead of the Curve: Patient Advocate,??? US News and World Report, December 11, 2008. She maintains a Twitter account on patient advocacy + new medical findings @ twitter.com/JariHollandBuck.
**** Please remember these are my PERSONAL notes from this session and done during the session so excuse the typos and remember these may be my thoughts and impressions! AND This is a PANEL with some Power Houses so it will be organized by How and when they speak???
- Time Before / Time During / Time After ??? if you have lived through a catastrophic medical event this is how you see “time”
- What is a SIGN ?
- The Free Dictionary definitions are varied: “a portentous incident or event” sounded with her from a Barn Owl showing up two weeks prior to her husband’s incident
- patient / family – healthcare providers – advocate
- It is working IF the doctors discuss issues willingly with patient & advocate / doctors answer questions posed by / nurses readily provide education, as requested
- (quote that was too long)
- Important points:
- Hand Hygiene
- Not all doctors want hand-washing reminders
- Signs of non-compliance: Patient’s have a right to say “I would be ore comfortable if you washed your hands followed by alcohol and gloves before touching me.” and this should be repeated if they touch their cell phone / non-sterile object after or between steps – you have a right to ask them to leave your room and report to the nursing staff
- Home – safety & security
- Hospital – make sure that you are hydrated and taking care of hygiene yourself
- Physically – see if you can join the health club – go outside and see the physical world
- Emotionally (feelings at the time) – have a trusted medical advisor who is outside of the incident
- Spiritually – take advantage of the spiritual support that is available
- Psychol
ogically (thoughts and feelings after) – Signs of PTSD – recognize the needs After also
- Hospital type: Private v. Teaching/public
- Hospital Age – the older the facility is the more “resident germs” that are present
- ???people are diligent about the right surgeon but have no idea about the anesthesiologist – ASK
- Where do I search? (list of resources)
- worse day is Friday – will do diagnostics on Friday but no one there to talk to you over the weekend.. they are on maintenance mode – choose your elective surgery on a Monday so you have five days in case something goes wrong – During nights, weekends, and holidays: no senior staff / doctors rotate coverage so might not get selected partner / in teaching hospitals coverage may be provided by residents during this time
- Also consider executing: Durable medical power of attorney / living will / power of attorney / outside the hospital Do-Not-Resuscitate Orders (this is for the ambulance or team who arrives at the home)
- make sure to carry those papers with you (multiple copies) at all times
- “DNR” visible to naked eye on doctor’s file, if appropriate
- Verify copies of executed documents in file FOLLOWING service to hospital legal department – laws are different state to state, etc. Have a legal sign “Proof of SErvice document”
- every hospital has a patient’s rights statement – it was written by the hospital’s lawyers
- Being in a good frame of mind??? helps keep one in the picture of health.
- Even if sedated or unresponsive – people in a coma can hear what we say – upsetting conversation with doctors or family members in the presence of your patient may upset them
- If you ask too many questions “you can be branded as a pain in the neck”
- Starting with “Can you help me understand?” seemed to help
- five rights of medication (part): patient / drug / amount / route / time
- Prevention tactics: poster over the bed including names / room & bed number / allergies (red band) / chronic conditions / impairments and also Line change outs
- What to ASK / Act like a Reporter and get a 2nd opinion