I was recently on a podcast, hosted by Claudia Cometa of Peace Advocacy Group, with 3 other fabulous patient advocates. Listen to learn more about what patient advocates do. I talk specifically about how to talk to your aging parents about health and safety concerns and what has surprised me most about my work as a patient advocate.
Since the beginning of the pandemic, I’ve received many calls and heard many stories about how difficult the visitor restrictions continue to be for hospitalized patients, residents of senior living communities, and family members. As the pandemic continues, more and more organizations and individuals have been voicing concern about the isolation of seniors in assisted living and skilled nursing facilities, as well as the lack of advocacy for hospitalized patients. While exceptions for end-of-life or compassionate care visits have been available throughout (for patients without COVID), they often require families to make painful, difficult choices about who can say goodbye in person. Rules for all of the above scenarios have changed, loosened and also vary based on geographic area and facility. Be sure to check the most recent policy of the health care facility or community in question.
Please use the information below to understand the issues as well as to advocate to visit your loved ones.
The Beryl Institute recently released Patient and Family Recommendations for Addressing Visitation Policies during COVID-19. This policy statement emphasizes the importance of allowing a “care partner” to be in the hospital or any healthcare setting with patients. Anyone who has been in the hospital or had a loved one in the hospital knows how critical it is to have someone there with you: it’s usually difficult to understand and remember what the doctors are saying and ask meaningful questions when you are in a health crisis. Care partners also provide important information to health care providers that patients, due to physical illness, cognitive issues or just being overwhelmed, tired, or scared, may not remember to share on their own. While these recommendations include that “All patients must have the option to have a care partner present in the healthcare setting,” they also set out guidelines and responsibilities for care partners to keep healthcare personnel safe. The photo below shows some of the recommendations:
Please see my previous post about having an “In Case Of Emergency Kit” prepared - this will make it easier for your care partner!
Long term care settings:
The Centers for Medicare & Medicaid Services (CMS), has issued guidelines to states regarding visitation of residents of long term care facilities. They note:
While CMS guidance has focused on protecting nursing home residents from COVID-19, we recognize that
physical separation from family and other loved ones has taken a physical and emotional toll on residents.
Residents may feel socially isolated, leading to increased risk for depression, anxiety, and other expressions
of distress. Residents living with cognitive impairment or other disabilities may find visitor restrictions and other
ongoing changes related to COVID-19 confusing or upsetting. CMS understands that nursing home residents
derive value from the physical, emotional, and spiritual support they receive through visitation from family and friends.
The guidelines address indoor and outdoor visits as well as compassionate care visits and visitor testing. See the photo below for some of the guidelines for indoor visits. Check the guidelines from your state and the long term care facility you wish to visit for more specifics.
Bottom Line: There should be ways to allow family members to advocate for and visit their loved ones, combat social isolation, and also prevent the spread of Covid-19. Hopefully, the recent progress in developing guidelines for visitors will help people get the care and companionship they need.
I want to thank Jeffrey Wallk, The Value Enablement Group LLC, and Elizabeth Finlayson, The Non-Profit Coach, for featuring me on their Ask the Experts webcast. I shared information about my business as well as examples of how I’ve worked with clients, how I can help in different situations, and more.
I often hear from clients that they feel dismissed by their doctors — that their doctor doesn’t care about them. Watch this quick video to learn how I helped a client turn this situation around.
How many of you have had a Telehealth appointment - either audio or video - since the COVID-19 pandemic started? I recently gave a presentation via Zoom to a group of about 25 older adults. I used the polling feature to ask if they’ve tried Telehealth and if they liked it. 80% reported that they had used it and thought it was great (the other 20% had not used it yet). Honestly, I was surprised at how many had used it AND liked it. This month’s blog provides some tips to make your Telehealth appointment successful.
Telehealth may transform how healthcare is delivered in the future. It cannot replace every type of clinical visit, but in many cases, it can be just as good as being there in-person — just without the hassle of having to get to a doctor’s office. If the HIPAA rules and insurance reimbursement changes stay in effect even after the COVID-19 Public Health Emergency ends, we’ll all need to get familiar and comfortable with these type of provider appointments.
It’s important to know that Telehealth was always subject to strict HIPAA privacy and confidentiality rules. Any platform used for Telehealth had to be HIPAA-compliant. These HIPAA rules have been relaxed since the Public Health Emergency was put in place; this means that providers and patients are using any form of communication that works, including FaceTime, Google Hangouts, whatever.
Medicare has made some important changes to Telehealth. Currently, any provider who is eligible to bill for Medicare may provide and be reimbursed for services delivered as Telehealth. That includes doctors, nurses, mental health professionals, physical therapists, and more. They can bill patients for usual cost-sharing (co-pays, co-insurance) but they have the option to waive or reduce those fees. Also, the requirement that a patient had to see the provider in the past 3 years in order to have a Telehealth appointment is waived.
Here are some tips to make Telehealth easier and more effective:
Today, April 16, is National Healthcare Decisions Day. It’s a day dedicated to helping people think about advance care planning - which is really about quality of life. If you’ve been reading my newsletters and keeping up with me on social media, you know that I often highlight the importance of getting your advance directives (health care proxy, living will, POLST) in order. The current situation with COVID-19 — heightened risk as well as a prohibition on having any visitors in hospitals, skilled nursing facilities, and senior communities — drives home this point even more. Spending time to get your important health information organized and sharing it with the appropriate people is critical to helping your health care proxy and family members advocate for you in an emergency. Keep reading below for more info.
Stay well and stay home!
I’ve written before about creating a Personal Health Information Binder. Some people are calling it a “Grab and Go Kit” or “Emergency Health Kit.” Regardless of the name, the idea is the same: Organize your important health care-related information in a binder or folder. Keep a copy by your front door or somewhere where an EMT would see it and grab it to take with you to the hospital in case of an emergency; therefore, the front of it should say in big letters: TAKE IN CASE OF MEDICAL EMERGENCY. Also, make sure your health care proxy has a copy of all this information. If your health care proxy doesn’t live near you, make sure a trusted neighbor or friend knows that you have this folder and where it is in case someone needs to bring it to the hospital.
What should be in this folder/kit:
I also recommend keeping your cell phone fully charged and having an extra charger in your folder or binder. If you want to have a small bag prepared too, you could include extra hearing aids/batteries and glasses, if needed, as well as some toiletries.
If you have not set up a patient portal, now is a great time to do that. In “normal times,” it’s an easy way to contact your doctors and keep track of your test results and upcoming appointments. Share the login information with your health care proxy and trusted family members in case they need more information to help advocate for your care. While you may think that the health care professionals taking care of you will have access to that information, it’s entirely possible that you might not be taken to your usual hospital.
(2) Advance care planning is about control. In this time of so much uncertainty and fear, anything that gives us a sense of control can be comforting. It’s the perfect time to think about your wishes and who you want to be in charge of carrying them out for you, if necessary. Five Wishes is a national document accepted by almost all states. It includes a form to list your Health Care Power of Attorney but also includes an easy-to-use way for you to let people know what kind of care you would want. Other great resources include The Conversation Project and MyDirectives.com
Feel free to contact me if you have questions about or need help with any of this -- gayle@InTuneHealthAdvocates.com or 847-920-8238.
Surreal. Unprecedented. These are words we are hearing over and over to describe the current situation we are in. The vast majority of you reading this monthly newsletter live in a state that has already implemented a lockdown order. While I don’t think there’s much new I can add to what you have already read about how to prevent COVID-19 and what the symptoms are, I am sharing some important information below about how the health care system is being impacted and how that affects us personally.
Also, the need for advocacy in health care matters has not stopped during this time. InTune Health Advocates, LLC is still open for business… remotely. I am still calling health insurance companies and providers about surprise bills, denials, and billing errors; I am still helping families work through difficult decisions about discharge planning from hospitals and skilled nursing facilities; I am still helping clients research information about treatment options; and more.
Important reminders and information:
After my last blog post about how to talk to your aging parents, my friend’s dad (a faithful reader of my blog!) wrote to me and said “the flip side of this is for parents to learn how to handle the often inevitable conversation with their children. Y’know: How to have the conversation that you don’t want to have but know that you eventually have to have.”
It turns out that there is a whole lot of advice out there for adult children who need to have difficult conversations about aging, caregiving, and safety with their parents but very little advice for the reverse. How can aging parents be more open to having their adult child(ren) approach them about these topics? A Google search found one related article, What Aging Parents Want from Their Kids, which offers anecdotal observations and advice — with a theme being that aging parents often feel as if they’re constantly being assessed by their children. (An amusing, and close-to-home takeaway from this article is that apparently aging parents don’t like it when their children and grandchildren go through their refrigerator pointing out everything that is past the expiration date!)
The above article referenced a 2004 SUNY-Albany study where older parents were asked in focus group interviews about their relationships with their adult children. Here are the main findings:
“When discussing their adult children, participants reveal strong desires for both autonomy and connection, leading to
ambivalence about receiving assistance from them. They define themselves as independent but hope that children’s
help will be available if needed. They are annoyed by children’s over protectiveness but appreciate the concern it
expresses. They use a variety of strategies to deal with their ambivalent feelings, such as minimizing the help they
receive, ignoring or resisting children’s attempts to control, withholding information from children to maintain clear
boundaries, seeking others as confidants, and rationalizing children’s unavailability. They actively strive for a balance in
their relationships with children.”
What does that mean in plain language? Family relationships and feelings are messy!
So, if you’re an “aging parent” and your adult children are trying to talk to you about difficult issues, what can you do to help the conversation go well?
Bottom Line: It’s all about communication. And - same bottom line as last month’s article - BOTH adult children and aging parents should take the time to plan for and start having these difficult conversations before there is a crisis. You’ll be glad you did.
I was eavesdropping on a conversation the other day. Two women were discussing how one of them was trying to convince her dad to move from the home he’s been in for decades to an independent living community. I eavesdropped because I was already working on this blog post, after recently sharing an article, Parenting Your Aging Parents When They Don’t Want Help, on this topic on LinkedIn, and was interested in how she navigated the conversation.
The article generated a lot of conversation, both on- and off-line. While I’m not a fan of the use of the word “parenting” in the title (I doubt aging parents want to feel like they’re being parented by their kids!), I think the article is filled with important, spot-on advice for having difficult conversations. I encourage you to read the entire article if you’re facing a situation where you need to talk about a challenging topic. Difficult conversations with your parents include wanting them to move out of their home, hire a caregiver, discuss their end-of-life wishes, share their financial situation, and more. (Note: this post assumes that your parent has the capacity to make their own decisions.)
The woman I referred to above (and who gave me permission to use her story in this blog) shared that one of her dad’s arguments for wanting to stay in the house was because he had so many wonderful memories there. He thought he would lose the memories, the feelings that go with the memories, if he moved. She responded by telling him that she completely understands that feeling. However, she pointed out that she hadn’t lived in that house since college but still holds on to all the memories from her childhood there. That was a great response. She acknowledged the validity of his concern, shared that she truly understands the issue, and let him know that the memories stay with us wherever we go. Her dad was then willing to continue the conversation.
Some thoughts on having difficult conversations with aging parents:
What happens if they don’t agree to get a caregiver or move or get a medical alert system or whatever you are hoping they will do… and then they, for example, fall and break a bone. This may cause you a lot of stress and missed work days and more - but remember, it’s not your fault. You don’t need to feel guilty (although I realize that’s easier said than done). The silver lining is that they may become much more open to listening to you!
Bottom Line: Take the time to plan for and start having these difficult conversations before there is a crisis. You’ll be glad you did.
A friend recently sent me a great TED Talk titled: 4 Questions You Should Always Ask Your Doctor (by Dr. Christer Mjaset*). She knew I’d be interested because I speak to community groups about how to talk to your doctor.
The 4 questions Dr. Mjaset recommends we ask our doctors are:
These questions work in all sorts of situations:
Your concerns may be medical/clinical (e.g., are there side effects?) or they may be financial (e.g., will my insurance cover it or will I have to pay out of pocket?). While you may not think you can question your doctor’s advice, trust me, you can!
*Christer Mjåset, M.D. is a neurosurgeon, author, columnist and lecturer who currently works as a Harkness fellow in Health Care Policy and Practice at Harvard T.H. Chan School of Public Health in Boston studying value-based health care models.
Write something about yourself. No need to be fancy, just an overview.