Rightcare Starts with ME
Right Care Alliance
On September 8, 2016, my colleague Poppy Arford and I co-presented at the Maine Patient Safety Academy. Poppy first introduced the Lown Institute, the origins and their incredible leadership. Then we encouraged our group to join our Healthcare Revolution with the Lown Right Care Alliance, and suggested ways to engage with us and our work. Our theme for this particular exercise/presentation was “What Worries You Most”. So, I shared my most pressing worries about Patient Safety, and then shared a story about my mother who is in assisted living. I worry about her health, safety and finances. I know her money will not last and that eventually she will have to move again. Change is extremely difficult for people with dementia. Wouldn’t it be grand if insurances helped to pay for what really matters for people. Dementia support and services are not covered by Medicare, but they would pay for an unending list of extremely expensive diagnostic tests, treatments and medications that would not make much difference for her at the age of 90.
After our introduction and presentation, we asked our group of about 30 women, mostly nurses and other healthcare professionals, about what worries them most. This is when our session got really interesting. First they wrote down their own worries in just a few sentences. Then we gave them the floor, and they told us their worries. WOW! I still have a little lump in my throat.
Maybe nobody ever asked these hard working dedicated professionals this question, especially at a healthcare patient safety conference. Their words validated my own worries and feelings, and they/we all validated each other. It was a moving and emotional experience for all of us. When a group of dedicated healthcare professionals say they are worried about something, everybody should be paying attention.
Our RCA organizer Stepanie Aines has compiled the list of worries from our session, and I am including them in this blog. I am not shocked about most of these issues because I have worked in Patient Safety advocacy for 8 years now and I have heard most of them. I was so moved because these people were so enthusiastic and candid about their worries, and everybody in the room understood each other. We are all in this together, and that is the only way we can reform healthcare, together. We will find trends and priorities and then go to work for change!
Poppy and I will be doing more listening exercises in listening booths over the next several weeks. Right Care Action week is October 17 thru 21. If anyone who reads this is interested in doing one of these activities themselves, in their place of work or some other setting please contact me or the RCA. Links and contact information are at the end of this blog. We are also working to form a Right Care Maine chapter and would love to have Mainers who want meaningful healthcare change to join us.
What worries you most about Healthcare?
These are the responses from our group of dedicated professionals.
Government – run healthcare
-Healthcare is a business-focus on profit making
-Pain management at end of life
-That a visit to the doctor will cost more than I can afford
-Not having an advocate when I can’t speak for myself
-Not having my wishes known
-1) Affordable healthcare during catastrophic illnesses. 2) There won’t be enough long term care beds available in the years to come with aging of Baby Boomers. 3) Proper placement of (human beings, real people) individuals relating to level of care, moving unnecessarily
-People I love being zombies – they are on wrong medications with awful scary side effects. Will that happen to me?
-1) Patients on too many medications. 2) Where meds are coming from now. ie clothes and other items must show a country of origin, meds do not, including prescriptions. 3) Healthcare is the only purchase that we make where we do not know the cost until after the fact. 4) The waste in Mainecare when a patient can come to ED at anytime where others with regular insurance have to wait because it is too expensive. 5) Hospital infections v. falls. My mother passed due to Central Line Infection, Father from fall at a Nursing Home.
-1) Not having all the information to make an informed decision about my care or the care of a loved one. 2) Not being able to take care for a parent who has failing health and children who have their own needs (i.e. college tuition).
-1) Pain management in healthcare. 2) Staffing – staffing ratios increased pay for CNAs 3) lack of medicare support for assisted living
- Loss of identity and decision making as well as ability to pay for healthcare as I age
-Unaffordable care – esp in negotiating for access to excellent care that is available to those who afford it (meds, tests, office visits, etc)
-Cost of Obama Care for retirees/folks on SSI – $700/month w/ huge co-pays and not all docs in network = substandard continual of care to folks that worked all their lives and paid into the tax system.
-Working too hard to put food on the table and to afford proper things for my kids that I’m too tired to be there emotionally and mentally for them and my husband. I fear working for those expensive, yet necessary things will take away from making a life.
-1) Affordable care. 2) My children won’t have resources and quality healthcare available to them. 3) High deductibles and HSAs are becoming the norm and more people cannot afford quality care. 4) Reimbursement from insurance companies is down – as a result quality practices cannot sustain practices.
-The lack of beds and help for treating patients with mental illness.
-Being stretched too thin. Having more and more tasks and responsibilities added that I cannot do my job safely. I am afraid that all the tasks will distract me from what matters most – patient care and safety.
-Medical errors in healthcare safety.
-Available affordable healthcare for all.