Being a Patient Advocate During Covid-19

Patient advocacy is critical to helping people get the care they need. This is particularly important if people are older, have a chronic condition and/or are in an emergent situation. In the Covid-19 era, this has become a bit of a challenge. However, the following tips can help in seeing patients get the care they need.

Emergent Situations: Encourage them to go to the hospital if they are experiencing an emergency, such as shortness of breath, chest pain etc. Assure them that the best place is the emergency room. Some people are afraid if they go to a hospital they could become infected with Covid-19. Hospitals have separate tracks for such patients.

Telehealth: Using last week’s post Virtualappointments and medical visits during the Covid Pandemic

• Help them prepare by making sure they have the connectivity and conditions for a successful visit.

• Go over what they want from the telehealth visit, clarify questions etc.

• Take notes while they have their visit. This can be such a different way for them to see their provider it’s easy for them to miss things. Be in the room with them, or if you are not in the same house,  see about joining remotely. You will need to arrange to be part of the telehealth visit before it occurs if you are going to join remotely. Don’t expect to be able to do that at the last minute.

• If the provider needs them to do things like weigh themselves, taking a temperature etc. assist as appropriate.  

• Review the visit with the person afterwards.

• Help the person compile a personal health notebook, which includes necessary information like medications, allergies, power of attorney for health care, living will, medical providers. Download forms at Create Your Own Health Notebook.

Hospitalization: Visitors, with a few exceptions, are not allowed to visit hospitalized patients. While this is anxiety provoking for patients and their families, it is the best way to reduce risk of infection.

• Most hospitals have set up Covid-19 information at their website. Read through it to understand policies and procedures and to know what they have put in place to support communication and connectivity.

• If the person doesn’t have a smart phone or tablet, get one that has video conferencing such as Face Time, Skype, Facebook Messenger, Google Hangouts, Google Duo or Zoom that allows face to face communication. It helps a lot to see how the person looks. If it’s an emergency admission, you’ll have to leave the devise with the hospital staff, along with other items they’ll need such as glasses, extra socks, toiletries, notebook and pen etc. Do not drop off money or other valuables. Note, some hospitals are providing iPads and tablets for patients to use during their stay so check to see if that’s an option. 

• Use phone calls, texts, and video chats to stay connected with the person. This can be their lifeline and will most likely be your primary means of communicating. Tell them to call as often as they like, but make sure they call after the doctor makes rounds, if medications are changed, new tests ordered etc. Calling them will give them a boost.

• As you discuss with them their medical situation, keep a hospital diary-write down what they tell you. Make sure you list the names of the medical teams that are caring for them.

• Writing letters and sending cards are good ways to cheer up a patient.

• Ask the nurse to write contact information of a family member on the whiteboard in the patient’s room and at the nurses’ station. Asked that this person be called if there is a change in the patient’s condition, after doctor’s visits etc. This is particularly important if the person is in critical condition and can’t communicate.

• Identify who is the lead provider, “the quarterback,” who is caring for the person. These are usually “hospitalists,”  or critical care specialists. The patient’s primary provider most likely will not be involved in their hospitalization.  Speak to the primary hospital provider daily.

• One person for the family needs to be the designee who talks to the medical team daily and shares that information with everyone else. It helps if this individual has some medical knowledge.  It’s frustrating and disruptive for staff when a family can’t organize themselves and end up having various people calling throughout the day. Note that some hospitals are setting up apps to help families stay connected with the patient.

Resource

Patient Advocate Foundation: Covid Care Resource Center

Virtual appointments and medical visits during the Covid Pandemic

In an effort to keep people safe and social distancing, there has become a rapid increase in telemedicine or virtual medicine as people are on “Stay at Home” (SAH) orders due to Covid-19. Chances are good that this will continue to remain in place, long after we’re able to be out and about.

One of the things that has come up again and again through the course of the pandemic, you can’t get a test without a doctor’s order. If you don’t have a primary care provider, get one. As it is, while many states are still on SAH, a number of health centers and other providers are willing to do a first “telemedicine” visit, having you come in after SAH has been lifted.

Some people are avoiding going to emergency rooms or hospitals for fear of contracting Covid-19. Please know that ERs and hospitals treat Covid-19 patients separately so you should not have contact with them. For a true emergency, the best place is the ER.

If you are experiencing any of these symptoms, Sudden chest pain; Weakness in one side of the face or body; Difficulty breathing or catching your breath; Thunder-clap headache; or Sudden confusion, call 911 immediately as the quicker you get professional help the better.

If it’s urgent: Such as a new pain, reaction to a medication, high fever, or injury, call your primary care provider for advise as how to proceed. Note that if you are having Covid-19 symptoms: fever, dry cough, tiredness and you want to be tested, you’ll need your provider to order it. You can’t just show up at a testing facility. If you are having trouble breathing, another symptom, call 911 immediately.

 For urgent not emergent situations, call your provider. You will most likely be ‘triaged,” where a nurse or other staff will determine how urgent your situation is. You can help this process by summarizing your concern in a few brief sentences, e.g. I’ve been taking the medication for four days and I started noticing a rash last night. If triage says you need to go to the ER, please act promptly. In spite of Covid-19, the ER is the best place for a real emergency.

Medication Refills/Notes from the Doctor: This generally will not require a telemedicine appointment and can be handled by a call to the office. If you doctor has an online patient portal, you can renew prescriptions in that manner. Note that many pharmacists are providing 90 day supplies to reduce the need for going out.

GETTING SET UP FOR TELEMEDICINE  

• Before you set up a telemedicine appointment, make sure you have sufficient Internet connectivity to make this happen. You’ll need about 15 Mbps.

• For the best video quality and reliability, use a wired connection if available. Wi-Fi and 4G/LTE are also acceptable. Avoid using a Wi-Fi hot spot if at all possible, as these are often not secure.

• For best audio, use earphones.

• Video takes up a lot of data, so if you have a data limit on your cellular plan, make sure to connect with Wi-Fi.

• Make sure mobile devices (cell phone, tablet, lap top) are charged to at least 50% before the appointment

• Make sure your webcam works and is of sufficient quality for your provider to see you. Most devises now come with this feature.

• Find a dedicated space to have your visit and set the camera at eye level so it’s easy for your provider to see you. Make sure you are in a well-lit room free of distractions.

• Close all unnecessary programs. If you have too many things running on your device it can reduce the quality of your video chat.

• Have your doctor’s number handy: If a technical issue comes up you can quickly place a call if need be.

• Prepare to answer at the appointed time. Avoid phone tag. Make sure you've disabled any spam blockers or functions that reject calls from private numbers.

PREPARE FOR YOUR APPOINTMENT

• Write down questions

• Identify any changes you’ve had since your last appointment-listing your most urgent symptoms first.

•  Be clear what you want out of the visit.

If your provider is amenable, e-mail them a copy so you are both literally, “working off the same page.” Include photographs of areas that are of concern, such as a rash, mole, incision that may appear infected etc. If you have a rash, draw a circle around it with a sharpie. If it spreads, continue to photograph providing estimated times between pics.

ASSEMBLE ITEMS YOUR PROVIDER MAY NEED FOR YOUR VISIT: This may include thermometer, bathroom scale, home blood pressure monitor, glucometer etc.

There are now a variety of digital technologies that can help you access and manage your health care, and will be useful during a virtual visit. Talk to your provider about Smartphones, Fitness trackers, special Apps and other resources that can help you manage your health.

Sanity Breaks in the Time of Covid-19

It's a pretty stressful time, so thought I'd share the "sanity breaks" I posted for my community this past week.

• Build a bliss station. This comes from Joseph Campbell, author of  “The Power of the Myth.” You must have a room, or a certain hour or so a day, where you don’t know what was in the newspapers that morning, you don’t know who your friends are, you don’t know what you owe anybody, you don’t know what anybody owes to you. This is a place where you can simply experience and bring forth what you are and what you might be. This is the place of creative incubation. At first you may find that nothing happens there. But if you have a sacred place and use it, something eventually will happen. My bliss station is a daily walk. For others it’s the first cup of coffee, sitting in your special chair by a window. Watch a Pink Cast on this.

• Here’s a tip from the Italians, plan your stay at home day using the Staying Strong, Active,Neighbourly and Energetic Checklist  The idea is that you look through the list each morning and score each item that appeals to you from 0-10. If you have a partner, he or she does the same. Then plan your day, focusing on your top-scoring items.

•  This comes from Linda Thomson, a nurse hypnotist. During this unimaginable time of global crisis, this video was created with my local public access TV station to provide people the opportunity to take time to relax, to bolster their immune system and enhance their ability to cope and better protect themselves from the COVID 19 virus. This video is a hypnotic, meditative journey of about 30 minutes; my gift to you. Enjoy, stay healthy and well. We are all in this together and we will get through this and look forward to the better days ahead. http://okemovalley.tv/hypnotherapy-covid-19

Life in the time of Covid-19: We are wired for Resiliency

We're approaching our 4th week in "confinement" in my little town of Cavendish, VT, and yes, it's been challenging at times, but it's also been pretty amazing what people are and can do. It's been a good reminder that at the heart of it, humans are resilient and we can pretty much handle whatever adversity you throw at us.

So in thinking about that, I wondered if George. A. Bonanno had any pearls of wisdom on coping with Covid-19. If you aren't familiar with Bonanno, he's one of the leading researchers on loss and wrote the book, "The Other Side of Sadness: What the New Science of Bereavement Tells Us about Life after Loss."

Below are some thoughts from Bonanno:

1. We can cope with this. My research (and the research of others) has shown repeatedly that the majority of humans cope well and are resilient to just about any adversity.
2. There is no single best way to cope for everyone. Often, we see popular articles about the 3 or 5 or 7 keys to resilience. Research has shown many different factors predict resilience, but the effects of all of these factors are small because they don’t always work or they don’t work for everyone.
3. Research also shows that we need to be flexible and adapt. This means paying attention to what is happening to us and being nimble so we can adjust to what the situation is calling for. Each person should try different ways of coping and adapting to see what works best for them.

As our nation and the world deal with COVID-19, the key psychological objective for most people is to keep stress at a minimum. Everyone is adapting to the new reality, which includes the fear of viral spread and contagion, self-quarantine, and supply shortages. More seriously, some are coping with illness and fear of death. To overcome the stresses of these situations and remain resilient throughout, it is important to use the tools we already have at our disposal, including:

• Staying optimistic
• Relying on the support of others
• Bonding with those close to us
• Keeping informed but not overindulging in media consumption
• Distracting oneself
• Finding ways to laugh and have fun through things like watching movies and reading
• Most especially, finding ways to minimize isolation with joint family activities, and keeping in touch with friends and colleagues by phone, video, email.

People should understand that there is no magic bullet. Research has shown that no single factor determines resilience for a population. It is therefore up to each person to try different ways to cope to see what works best for them.

Do your part. Stay home or six feet apart wearing a cloth mask or scarf. 

Life With Chronic Conditions in the Time of Covid-19

I’m so sorry not to have posted since the Covid-19 pandemic swept through my little rural town in Vermont. Who would have thought we would have been hit early and hard? We’ve already lost two community members to it.

Actually, we’re located close to a ski area and we’ve been flooded by tourists and 2^nd homeowners so it’s not surprising that community acquired Covid-19 would make its presence known only too quickly. We’ve basically been socially distancing since March 14, though the official Stay at Home order didn’t come until a week ago.

I’m part of my town’s Covid 19 response team and am spending many hours working to take care of my corner of the world. I truly believe that if we all work hard to do just that we will get through this just fine.

So tonight I’ll leave you with some tips that I tell many of those I’m working with.

1.    If you feel like you are losing it, that’s okay. You’re having a very normal reaction to a very abnormal situation. It takes about a week to 10 days to adjust to the “new normal.” Remember we are wired for resiliency.

2.    Turn off the news. It will make you absolutely nuts. Know enough to be aware, but not enough to shut down. Keep in mind that if it bleeds it leads and there are a lot of talking heads that want your attention.

3.    We all have meaning and purpose, even in situations like this. Connect with friends, neighbors and people you haven’t heard from in years. It will make you and them feel better.

4.    As much as people think you can prepare for a pandemic, there is only so much that you can do. Spending hours on-line bashing the president and others doesn’t help. In fact, it can make you feel angry and helpless. Focus on the things you can actually control (like voting in November).

5.    Listen to Uncle Tony (Dr. Fauci). His health information is spot on and he delivers it in ways that I know makes me feel better.

6.    Take a break every day. There are lots and lots of them (really over 365 now) at the Take a Break Pinterest Board.

7.    Continue to practice social distancing, or as we say in Cavendish Be smart and do your part. Stay home or Six feet apart. If there is one thing you can do, this is numero uno.

8.    Get outside, again six feet apart, and enjoy the sunshine and the arrival of spring. It’s a time of rebirth, enjoy it.

9.    Use any services that have been set up to help you, such as shoppers, food delivery etc.

10. Be as mindful as possible to help you control the fear that can sometimes overwhelm us. You can only live the moment you are in.

In my role as director of our local history society, I find myself drawn to WWII, maybe the last time our country, as well as the world, has been tested like this. I wrote this on my Facebook page.  

We are the children, grandchildren and great grandchildren of the "Greatest Generation." They survived WWI, the flu of 1918 (40 million deaths), polio epidemics, the Great Depression, untold natural disasters, and then WWII arrived. They took care of business, just as we need to do now. Posting things about how we're a nation/world in grief is not helpful. Don't pathologize what are normal reactions to abnormal situations. We are wired for resiliency and we will get through this. A different nation we will be, but it will be an improved one. Remember our ancestors are counting on us and I sure don't want to arrive at the pearly gates only to have my parents say , "What the hell, you couldn't stay home for a month and watch Netflix or something?"

Breathe deeply. Sleep well as we are in this together and we will come through this.