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. 
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Please use the information below to understand the issues as well as to advocate to visit your loved ones.

Hospital/healthcare settings:

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.

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:

• Tips regarding your device (phone, laptop, tablet):
  • Set up camera at eye-level
  • Test microphone and camera
  • Make sure the volume is on and that you know how to mute/un-mute yourself
  • Make sure your device is fully charged or plugged in
  • Close unnecessary programs
  • Adjust lighting - turn on overhead lights, block light from windows
• Tips regarding using a Telehealth app:
  • Download the app, if necessary, or use your browser if you have that option
  • Log in early in case you have a problem
  • Have the doctor/office phone number handy in case you have trouble logging in
• Still plan as if you are having an in-person visit:
  • Prepare  an “agenda” - What are your questions? What information do you need? What do you want to accomplish during the visit? 
  • Write down new issues, symptoms, medications
  • Have medication list handy - prescription and over-the-counter medications
  • Provide info on vital signs, if possible - height, weight, blood pressure, temperature, etc.
  • Pen and paper for taking notes
  • Someone can be with you, just as if you wanted to bring someone to an in-person appointment
  • Repeat instructions back to provider to make sure you understand correctly
  • Be sure to ask and be clear about next steps such as scheduling another appointment, lab work, new prescription, etc.

If you have other questions, please don’t hesitate to contact me.

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:

• Personal and health information - such as date of birth, allergies, emergency contacts, and more
• Health insurance information - policy number, insurance company phone number,; or copies of insurance cards
• Medication list - name of medication, what is it for, dosages, schedule, pharmacy name and number. 
• List of health care providers - name, contact info
• Login information for your patient portal(s) 
• Summary of medical history/health status - what are you currently being treated for, past illnesses/surgeries, family history
• Copies of recent and important test results
• Advance directives - health care proxy (power of attorney), living will/POLST, DNR order (more below)
• HIPAA release form - giving permission for health care providers to release personal health information about you to whoever you list on the form
• Notebook or note paper and pens to take notes, if you are able.

Here is a template for organizing all of this information.
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:

1. Please only refer to and share information about COVID-19 that comes from valid, trusted sources. The Centers for Disease Control and Prevention (CDC), World Health Organization (WHO), and the Johns Hopkins Coronavirus Resource Center are examples of trusted sources. Your friend’s cousin’s neighbor’s uncle’s social media post about a home remedy is not.
2. Hospitals and skilled nursing facilities are not allowing patients/residents to have any visitors, even family members. That makes it more difficult to advocate for your loved one and keep up with their situation. These restrictions are necessary but incredibly difficult for everyone involved. Use technology as much as possible to keep up with what is going on with your loved one, keep them from feeling too isolated, and stay in touch with their health care providers about their health situation. It’s new territory for all involved so be understanding… while still advocating for your loved one.
3. If you or a loved one has to enter a skilled nursing facility at this time, there are a lot of questions to ask that facility about their infection control procedures. The CDC has prepared guidance for long-term care facilities regarding COVID-19.
4. Most health care appointments (medical, dental, vision) that are considered non-urgent are being canceled or moved to a telemedicine format. Of course, you may disagree with something being considered elective or non-urgent. We have all heard stories about people with cancer and other serious, life-threatening decisions having appointments, treatments, and surgeries cancelled. Even during this COVID-19 crisis, people still have heart attacks, strokes, get diagnosed with cancer, and face other serious health situations. If you believe your situation is urgent, then you should speak with your doctor about why your appointment or procedure can’t wait. Understand, though, that many of these decisions are being made at a higher level and your doctor may not be able to override the system.
5. Telemedicine visits are an option for many people. Medicare has relaxed their rules about telemedicine coverage. If you have private health insurance, check with your insurance company about what options they provide. If there aren’t any options, or you don’t like the options, there are several companies that offer on-line medical review by phone or video; be sure to understand the fees before you sign up.
6. Medicare has made several other changes to it’s rules including covering the cost of COVID-19 testing under Part B and waiving the 3-night inpatient hospital stay requirement for subsequent Medicare skilled nursing coverage. Rules apply to Original Medicare and Medicare Advantage plans. You can keep up to date with how Medicare is responding to the COVID-19 pandemic here. 
7. Never an easy topic, but this crisis is a reminder of the importance of having difficult conversations with your loved ones about end-of-life care. Make sure you have designated a health care power of attorney and have your advance directives in order. The Conversation Project and Five Wishes are both excellent resources for this. All of our upcoming Death & Chocolate— Larger Than Life Conversations programs are postponed, but the program is great for helping you to start thinking and talking about these difficult issues; I’ll keep you posted when they are rescheduled.
8. This is also a good time to get your personal health information in order. This blog post shares more information about what to include in a health information binder as well as a template for creating one.
9. Reach out to elderly relatives and those who are living alone. Wash your hands often for at least 20 seconds. Stay home. Make time for self-care. Be kind.

As always, please contact me if I can help.

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?

1. Realize that your children are raising these topics out of love and concern for you. Even if it makes you angry or upset. They’re probably pretty nervous about the conversation. Maybe go a little easy on them. Then again, you could decide it’s payback for the difficult conversations you had to have with them when they were kids (just kidding!).
2. If you feel caught off-guard by the conversation, suggest postponing it so you can be prepared as well. But be sure to commit to a mutually agreed upon date, time, and place for it. 
3. Be direct about your worries, your wants, and your needs. What is most important to you? What are you willing to “give in” about and what do you feel you have to stand firm on? But also recognize that your children may have valid safety and financial concerns. Be open to creative solutions that hopefully address everyone’s interests.
4. If the parent-child dynamics are just too difficult, suggest having another family member, friend, or hired professional help with the conversation. Or it may be better to have the conversation with one of those people instead of your adult child(ren). Sometimes taking the emotion out of a situation can be the most productive option.

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.

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:

• It’s not one conversation, it’s many conversations. Suppose you think your parents should move to an independent or assisted living community. Do you think you’re going to call them up one day out of the blue, tell them you think they should move, and they’ll say “Okay. We’ll start packing.” Not likely. It’ll probably take many carefully thought out, in-person conversations, with time to reflect in-between. Even then, they may never agree to it. 

 

• Put yourself in their shoes. Think about how you will want to be approached about this and other difficult topics by your kids when you’re older. Consider the emotions and fears they are struggling with regarding loss of independence, facing their mortality, leaving the place where they raised their family and lived with a spouse who may no longer be here, and more. 

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• Make it their decision. You may be initiating the conversation, but it won’t have a good outcome unless they feel like it’s their choice (to move, to get a caregiver, etc). Work together on identifying the problems and potential solutions. Ask them what they want and what’s important to them. What matters most to them and what are they willing to give on?

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• They’re still your parents. Show them that respect.

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• Remember that you can’t force them to do what you want. If they want to stay at home despite your objections and best persuasion, you need to accept it. You can make your case, offer your assistance, even talk about how it affects you and set limits on the amount of help you can provide if they make a choice you don’t agree with, but ultimately it’s their decision.

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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:

1. Is this really necessary?
2. What are the risks?
3. Are there other options?
4. What happens if I don’t do anything?

These questions work in all sorts of situations:

• Prescribing a new medication
• Recommending surgery
• Whether to get an MRI or other medical test
• Deciding on a new treatment option

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! 

Examples:

• Several years ago, I had unexplained vertigo-like symptoms for months. No doctor could figure out the problem (or frankly, seemed that curious, but that is perhaps a topic for another newsletter!). Several doctors wanted to prescribe migraine medication for me. However, I did not have migraines and the side effects of the medication included dizziness and lightheadedness - which were exactly the symptoms I was complaining about! So after asking questions and evaluating the responses, I chose not to take the medication and instead kept searching for an answer. 
• An elderly client had stage 4 lung cancer. The doctor ordered an MRI. My client was extremely anxious at the thought of having to lie still for the MRI considering she coughed nonstop whenever she was lying down. It was also challenging for her to get to the hospital for the test. I called the Radiology department and spoke to a manager/technician about whether there were any options that would allow my client to be more comfortable during the test. I then called the oncology nurse navigator to discuss how important the test was and whether it would change any of the care my client was receiving. It was decided and agreed upon by all parties that there was no benefit to my client undergoing the MRI. 
• My son broke his finger a few months ago. It hurt badly enough that he actually asked me to take him to the doctor. The doctor looked at my son’s finger, said “yep, it’s broken” then proceeded to tape it up with a splint. He then said I should take my son for an x-ray. I’m on a high-deductible health insurance plan, and it was late on a Friday afternoon, so I told the doctor that and asked “what will you recommend we do differently based on the x-ray?” He said he wouldn’t do anything differently, thought for a moment, then said that if it’s still bothering my son in a week, THEN I should take him for an x-ray. (Note that I love and take care of my kids and if the doctor said my son definitely needed the x-ray, I would have taken him for one!) Meanwhile, the next day, my son untaped his fingers, took off the splint, and went out and played football with his friends. I would not have been happy if I had spent hundreds of dollars on an x-ray!

As I emphasize when I speak to community groups, it is okay to ask your doctor questions! It is extremely important to understand what is being prescribed or suggested, the risks and benefits of it, and whether it fits with your goals and preferences.

*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.