Author Archives: Dianne Savastano

Moving Forward In the Face of COVID-19

Over the past two months, I have joined with colleagues from across the country — Seattle, Los Angeles, New York, Chicago and Houston — to create webinars for fellow healthcare advocacy professionals on the impact of COVID-19.

One fascinating aspect of working in the healthcare industry during this unprecedented time is the just-in-time learning that is occurring as individuals with COVID-19 are being tested, diagnosed and treated in our healthcare system. Because this disease is new, no evidenced-based protocols specifically designed to treat the virus existed. Instead, symptom management has been the goal, with real time research contributing to new revelations and continuously improved and evolving care.

The Data (So Far)

Thanks to my colleague Io Dolka from Seattle, for the following information:

  • Approximately 55% of those who contract COVID-19 are between 18 and 64, but the majority (85-90%) of those who die from the virus are over the age of 75.
  • Those with underlying medical conditions, across all age groups, are more likely to pass from the virus.
  • Men die from COVID-19 more than women (60% vs. 40%) and the virus disproportionately impacts individuals of color.
  • An estimated 20% of individuals with COVID-19 are hospitalized; a subset (approximately 6%) of those require ICU care.
  • The virus spreads through close, prolonged contact with someone who may be symptomatic, pre-symptomatic (the 2-3 days before symptoms develop) and completely asymptomatic.
  • Breathing, speaking, loud talking, yelling, coughing, sneezing, and singing can spread the droplets of COVID-19.

What To Do Now

One thing is certain: We are living in an evolving environment, one that continues to necessitate behavioral change in all of us. Here are my recommendations for how to function, be prepared, and stay as safe as possible into the foreseeable future.

Regarding resuming normal activity

Know the facts, assess your personal risk, and mitigate that risk using your own decision making. Here are some questions to consider before you leave your home to mingle with others, return to work, etc.

  • What’s going on in my community regarding the incidence of cases and the capacity for healthcare, especially ICU beds?
  • How old am I?
  • Do I have chronic conditions such as heart disease, pulmonary issues, chronic kidney or liver disease, diabetes, or obesity?
  • Am I immunocompromised?
  • What is my gender and race?
  • How is my physical condition and overall health?
  • When I leave the house, where do I plan to go and with whom do I anticipate interacting?
  • What’s the space like that I will be in, how long will I be in it, and how far apart can I be from others?
  • If I chose to be with others, can we all agree to do a temperature and symptom check beforehand and commit to not participate if anyone has a temperature or has any symptoms, as minor as they may seem?

Regarding accessing healthcare

Communicate pro-actively with your primary care physician and follow the protocols their team has put in place to manage patients with COVID-19 symptoms. This may include testing recommendations and locations for physical assessments if needed, appreciating the turnaround time for receiving results. Use the Patient Portal to stay connected.

Overall, when seeking care for issues unrelated to COVID-19, asking about the protocols in place in each healthcare environment can ease anxiety, as you will know what to expect. For example, recently I had to drop my husband off at the door for a surgical follow-up appointment. Thanks to some pre-planning, I was able to attend the appointment via FaceTime.

Regarding your mental health

The presence of the virus and the required physical distancing can trigger new problems, such as anxiety or exacerbate existing problems such as depression. There have been increases in the incidence of mental health, substance abuse and related disorders.

If you are experiencing any of these issues, your primary care physician is a great place to start. Telehealth appointments with mental health professionals have made care more accessible and state-sponsored websites also list resources.

Consider developing a “ Gratitude Journal to note things you appreciate and are grateful for each day. I restarted one of these in April and reading through it always makes me smile! Things I’ve written about include being thankful for my health, my (wonderful) Healthassist team, and the peaceful protests that continue to raise awareness of the inequities in our world. But I’ve written as well about simple things, such as the color of a bird or a flower seen on a walk. Overall, a gratitude journal can provide a boost in mood and help to restructure negative thoughts.

Regarding advanced life planning

The pandemic has created greater opportunity and need for discussions regarding life planning documents. If you don’t have any of these in place, start with the easy ones.

You can download a HIPAA release form and a Health Care Proxy online (for free) and complete these yourself. Then consider seeking out the services of an attorney and your physician for those documents that are more involved. The important thing is to get started!!

Regarding insurance

In the event you experience any symptoms of COVID-19 that require testing and any form of outpatient or in-patient care, please keep very careful records of dates of service, care you received, and calls made to your insurance company (including what you were told and by whom). The variability of how insurers are dealing with these claims leads me to believe there will be confusion. Good recordkeeping will facilitate troubleshooting in the future.

Final Thoughts

As we approach the summer months and learn to live within the confines of this pandemic, I urge you to be conscientious about your choices so that you remain healthy and virus-free. Please continue to wash your hands frequently, try not to touch your face, physically distance and wear a mask to protect others and demonstrate leadership by modeling the way.

In the event you require healthcare, don’t hesitate to reach out to those who normally deliver it to you. Staying as healthy as you can is the greatest gift you can give yourself.

Making the Most of Virtual Physician Appointments

Over the past few months and in many ways, the world has changed significantly. No more so than when it comes to accessing the care and advice of the physicians upon whom we depend.

Today, nearly all non-essential appointments are occurring virtually, whether through some type of videoconferencing or via our old friend and standby, the telephone.

Early on, these did not often go well! While physicians and their respective teams were quite open to the transition, in most cases it was, to put it nicely, clunky.

That’s partly because prior to the pandemic, most physician practices’ internal systems had simply not kept pace with patients’ or physicians’ desires for virtual appointments or with the technology required to make these work smoothly. Unfortunately, and practically overnight, the desire turned into a need and physician offices were left scrambling.

The good news is that over even just the first couple of weeks, the experience improved considerably. The bad news is that, like so many things in healthcare, there is no standard protocol, so every experience is different. Some sessions were initiated via text, some through the Patient Portal, still others required the advance completion of long questionnaires.

I have no doubt that post-pandemic, this will remain our “new normal” for many types of nonurgent visits. With that in mind, I want to share some suggestions for making these as productive and satisfying as possible.

Preparation is Key

I have always been a big believer in the importance of preparing for any physician appointment. Preparation helps to ensure that all relevant information is shared and that important questions are asked and answered.

This strategy holds true for virtual appointments as well. In addition, virtual calls require that further steps be taken to streamline the experience. Here are our suggestions:

Assess your technological capability and equipment. Do you only have a phone or smartphone (i.e., no computer)? If you have a computer, does it have a webcam? Do you know how to download software applications that may be required to make videoconferencing work? Speak with your physician’s office to determine what type of technology will be needed.

Enroll in your physician’s Patient Portal.Communication is much more efficient with the use of this secure technology. This is also where additional education material may be shared after your appointments.

Get set up ahead of time. Waiting until the time of your appointment to log in can lead to delays and frustration. Ask for specifics about the appointment log-in process (web site address, software required, phone numbers if needed) and see if you can practice connecting in advance. Make sure to understand how you would include any loved ones who you may want present as well. Outline a back-up plan in case the technology does not work on the day of your appointment.

Confirm a few days in advance. Physician offices continue to evolve the processes and technology used in virtual meetings. Check in a few days before your appointment to make sure the instructions you were given still apply.

Prepare your written agenda. Share it in advance via email or the Patient Portal. If you have the ability to take any of your own vital signs (temperature, blood pressure, pulse, weight and O2 saturation level), include that data with your agenda. Then, have it in front of you for the meeting to help guide the discussion and to take notes.

Follow-up. Summarize and document the appointment and any next steps, especially if follow-up is needed to schedule diagnostic testing. The physician will be documenting but you should as well, to make sure that nothing falls through the cracks. Contact the office to confirm how your appointment will be billed so that you are aware of applicable co-pays and co-insurance amounts

Two Additional Pieces of Advice

A physician friend shared these two things:

#1. Obtain care if you feel you need it.

An unintended consequence of the pandemic is that individuals do not seek care for emergencies (e.g., strokes, heart attack) at the same rate as before, whether out of fear of COVID-19 exposure or a perception that resources are not available.

Please do not delay emergency care; the capacity is there to treat you safely. In addition, if your physician feels you need an in-person visit outside of the emergency room, arrangements will be made to do so safely as well.

#2. Update your health care proxy .

We covered this in last month’s newsletter. Apparently, a tremendous amount of time has been wasted during hospital admissions trying to clarify who someone’s health care proxy is.

Final Thoughts

Telemedicine is here to stay. My physician friend expects that half of future visits will remain this way post-pandemic. She believes that this is an effective and comprehensive means of providing care for many patients under many circumstances.

So, let’s do what we can now to get used to this new world. As always, it is up to us, as healthcare consumers, to play a proactive role in ensuring a productive and satisfying experience.

Recommended Reading: Preparing for Telemedicine Appointments

This local institution had already been using Open Notes to document and share physician notes with patients. Now, they have taken it a step further with a wonderful project to help patients prepare for telemedicine appointments. Read more here.

Surgeon and best-selling author Atul Gawande offers lessons for re-opening from places that never locked down to begin with: hospitals.

His four-point approach is a “combination therapy,” and includes elements with which we are all familiar: hygiene measures, screening, distancing and masks. Culture is the fifth (and arguably the most difficult) pillar of a new combination therapy to stop the coronavirus.

Those who overcome adversity understand that while there is a lot they cannot control, they can — and should — pay attention disproportionately to those things within their area of influence.

Learn more in this terrific interview with Angela Duckworth , author of “Grit.”

Hospitalization During COVID-19

Planning for hospitalization is something we do continuously, especially with our most vulnerable clients — those that are older, living without family members close by, or living with multiple, chronic conditions and/or alone.

But COVID-19 has exacerbated an already difficult situation: First, because those who are ill must now enter the hospital alone, without a family member or healthcare advocate by their side.

In addition, and due to potential overcrowding at some hospital Emergency Departments, we can no longer assume that emergency personnel will transport us to a facility that we know or that has easy access to our medical records.

As a result, different steps must be taken in order to facilitate communication and allay some of the anxiety and fear we hear from our clients.

The “Grab-n-Go Kit”

When entering a hospital, it’s important to share as much information as possible with medical professionals regarding both health status and how physically active one was before they became sick.

But, if you arrive alone without someone to assist in this communication and/or at a hospital that does not have immediate access to your medical records, the medical staff is at a disadvantage.

The Grab-n-Go Kit is intended to close this gap.

Simply put, it’s a packet of information — preassembled and ready to go at a moment’s notice — that contains the vital details emergency room staff will need. It need not be fancy or perfect. It is simply a start for EMT’s evaluating and treating in the home and for emergency personnel treating in an Emergency Room.

Contents of a Grab-n-Go Kit

Ideally, the contents are kept in a plastic sleeve, hung in a visible place, such as a refrigerator or a cabinet. They contain the following:

  • “Face Sheet” with:
    • Name, address, phone number, date of birth, allergies
    • Emergency contact with name, phone number, email and text information
    • “What you should know about Sam or Mary” (explained below)
  • Medication list, both prescribed and over the counter, including dosage and how often taken (more details here)
  • Medical Conditions, Past Surgeries, Past Hospitalizations (more details here)
  • Copy of front and back of insurance cards
  • Signed HIPAA release forms, authorizing someone to speak on behalf of the person
  • Healthcare proxy, executed and witnessed
  • Healthcare advance directive
  • MOLST / POLST forms, if available
  • Power of Attorney

If you do not have current access to Patient Portals for you and your loved ones, now is the time to set them up. In addition to their many communication benefits, these are a convenient way to access your list of Medications, Allergies, and Medical Conditions. Just print them and add them to your Grab-n-Go Kit.

In addition, you may want to prepare a small overnight bag, cell phone with charger, 24 hours’ worth of needed medications, hearing aid case, glasses, notebook and pen, and a few toiletries.

“What you should know about Sam or Mary”

This is simply a short note that includes specifics that are important for emergency and hospital personnel to know. For example:

  • Mary has Parkinson’s disease and needs her medicine every 2–2½ hours or she will not be able to move. Her Sinemet is in her bag. She walks long distances with a rolling walker.
  • Please follow hip precautions for Sam, for a frequently dislocated left hip. He is not to bend at the hip past 90 degrees, twist his leg in or out, or cross his legs. He uses a cane to walk.
  • Jane is extremely hard of hearing and must have her hearing aids in to hear you. Otherwise, please stand directly in front of her when you speak to allow her to read your lips. She does not have cognitive issues. She walks three miles, unassisted, every day.

Communication with Hospital Personnel

If a loved one is hospitalized, it is important to develop the best telephonic relationships you can with all appropriate caregivers. Ideally, this is done in person. But it’s possible to do it and do it well over the phone, provided you are organized, supportive and kind in your approach.

Call the emergency department about half an hour after your loved one leaves the home and say something like:

Hi, my name is Dianne and I am Mary Smith’s daughter. May I speak to the nurse caring for my mother?

Thank you so much for taking my call as I am sure you are incredibly, busy.

I am calling to check in on my mom’s status, but primarily to let you know I am her emergency contact and to share my contact information with you so you can keep me informed. I sent it with her in a Grab-n-Go Kit, but I want to be sure you have it. Is this a good time for an update or should I call back a little later?

To whom am I speaking? The best phone number for me is 978-555-5555. You can text or call me at that number.

You may need to do this numerous times and through multiple shift changes. I usually start with the nurse and ask who the responsible physician is. When appropriate, I ask if I might speak to her/him.

If your loved one is transferred to an In-Patient Unit, or an Intensive Care Unit, you have to “relationship build” all over again.

You may need to email or fax the documents that you sent in the Grab-n-Go Kit, so be sure to have easily accessible copies of your own.

Final Thoughts

Whew, I know. It’s a lot!

But there is much to be thankful for as well. In the face of this pandemic, so many hospital-based professional caregivers have stepped up beautifully to also fulfill the role of being a “loved one/family member.” Further, they recognize the strain being placed on the people left behind and understand the frustration of not being there in person to offer support and to get first-hand information.

I have heard incredible stories about creative ways hospital personnel are using technology to bridge the gap. As a former nurse myself, I know that they will do all they can to keep family and loved ones on the outside informed and ever-present.

Your efforts to work together, even from afar, will result in the best experience you can have in the face of this very difficult time.

Recommended: Modeling the Way

Modeling the Way

Over the course of his life, my dad has donated blood 171 times! We think it’s what keeps him “young” and healthy.

He reminded me it was something incredibly important that I could do right now, so I gave last week. (By appointment only!)

Here are local resources if you would like to do the same:

MA Red Cross Blood Donation
RI Blood Center

During this crisis, I’ve worked hard with my parents in Florida to achieve success at FaceTime calling as well as to help them access Netflix and On Demand programming.

Some of our clients, however, live alone and without a smart phone. This article addresses the issue with some great suggestions.

This article made me wonder: Can the clinical practices that are being followed to treat this disease, and the newly emerging public health policies, keep up with how things are evolving?