Updated: May 26
Receiving cancer care is hard. Receiving it during a pandemic is even harder.
I’m deeply sorry that you’re experiencing additional stress during these unprecedented times.
I am confident that I can help though. My goal here is to lighten some of the load by helping you prepare for your cancer care in ways that you may not be considering.
This is the second in a series of posts, each addressing questions regarding cancer care in the time of Covid-19.
In the first post, we discussed the critical basics--precautions that every cancer patient should be taking very seriously. In this one, we outline eight practical preparation tips that many cancer patients should start working on.
#2: Given the possibility of acquiring Covid, what should I be prepared for? (This post).
Eight Practical Preparation Tips
I’m going to help you prepare some more, but don’t let this list overwhelm you. Just try to accomplish a little more of it every day so that you’re prepared for a potential emergency.
While it's true that these eight new items on your to-do list are more important because of your susceptibility to Covid, patients and their caregivers should be doing many of these things under normal circumstances anyways!
#1: Know Your Local Testing Locations
Know where testing is being done in your area. It’s wise to plan ahead. Covid symptoms include confusion and finding a testing site when you need it may be more difficult under mental duress.
#2: Ask Your Doctor About Medications
There are two current challenges with medication.
First, the supply chain for many of our country’s medicines begins in China and India. While China is currently getting back to work, India is far less functional, so you need to ensure that any drug that you are taking is not experiencing a shortage. As of May 4, 2020, there are currently 158 drug shortages listed in this FDA database.
It’s wise to look up yours and discuss it with your doctor if you have one on the list. Your doctor may be able to change your medication.
The second challenge with medication is that receiving it should not put you at additional risk just because you have to leave the house.
Do you typically go to the pharmacy every 30 days under normal circumstances?
That's not ideal right now if you do. It may be possible for you to have a 90-day supply of medication mailed to your home. If you must get it every 30 days and can only do so from your local pharmacy, you should have someone else go pick it up for you.
Are you currently on chemo and going into an infusion center for treatment?
Again, that's not ideal. It may be wise to ask your doctor if you can either go less frequently (and get a higher dose on every trip) or if you can be switched to a different type of chemo that is just a pill. Talk to your doctor about these issues and recognize that s/he may respond with a strong "no", depending on certain factors. (Be sure to check out the fourth post in this series for a little more on this).
#3: Ask Your Doctor About Radiation Treatments
We should be asking our radiation oncologists about similar changes to our radiation treatment schedule.
Let’s say you currently have an eight-week radiation protocol that has you going in every weekday. So, in total, you are scheduled to go in 40 times—8 weeks multiplied by 5 days/week. For simplicity, let’s say you receive one “unit” of radiation per visit. In other words, you'll get 40 total units during your radiation treatment. (In actuality the units are called “Grays”).
Can they reduce the number of visits to a mere 20 visits and give you two units per visit so that you still get 40 total units?
For some cancers, the answer may be a stern “no”, while for others there could be some flexibility in the protocol. Please discuss this with your radiation oncologist.
The key point here, is that if you could go into your radiation center 50% as often as you currently are, you would reduce your exposure to Covid by 50%.
If you’re wondering about surgery, similar conversations should be had. Again, I’ll discuss that topic in the fourth post that contains some good news.
#4: Prepare For A Potential Trip To The Hospital
Do you have a “grab and go kit” prepared in case you need to go to the hospital?
Note that cancer patients may need hospitalization for a variety of reasons—not just Covid.
Right now, it’s possible that no one will be able to go into the hospital with you. The hospitals simply don’t want the additional infection risk. Thus, it’s critical to think ahead to what you might need to take without your loved one around.
(Many thanks to Diane Savastano, a Patient Advocate at HealthAssist in Massachusetts, for supplying this important Grab and Go Kit list).
This kit could include:
1. A Printed Page with:
a. Patient’s photo
c. Address and Phone Number
d. Date of Birth
f. Emergency Contact Person Including His or Her Cell Number and Email
g. A Section That Explains Other Relevant Info That The Provider Should Know
2. Medication List (including the dose and frequency taken)
3. Medical Conditions, Past Surgeries, Past Hospitalizations
4. Current Physician List with Contact Info
5. Copy of Insurance Cards
6. A Charged Cell Phone and a Charger
7. HIPAA Release Forms
8. Living Will
9. Durable Power of Attorney for Healthcare
10. DNR, NH-DNR and DNI
11. Organ and Tissue Donation Directive
12. POLST / MOLST
Items 7 thru 12 above are particularly important right now for some cancer patients; if you don’t know what they are, there is a 3-minute primer on them here from our blog.
#5: Develop A Discharge Plan
If you are going into the hospital for surgery or any other reason, do you have a discharge plan?
Where are you going after you leave?
Who will get you there safely?
If you’re going to a skilled nursing facility, have you confirmed that your insurance covers that benefit?
Side Note: This last question is often complicated when a Medicare patient is technically never admitted to the hospital (even though they’re there overnight) and whose stay is designated as “observation status.” These stays are not always covered by insurance and can thus be tremendously pricey. You can see a video about that here.
The key here is that most people are so distracted by a trip to the hospital that they don't consider what's going to happen after they get out when they really need attention.
#6: Think About The Risk Of Having A Caregiver
Do you have a caregiver or multiple caregivers coming inside your home?
Is there any reason to be concerned that s/he isn’t able to follow safety precautions?
Do they live with other people who are going to work (and are therefore exposing themselves to the virus)?
If these questions are concerning, it may, in some circumstances, be smart to forego having a caregiver if responsible, low-risk family members can take over the work.
If that’s not possible, do you by chance have the room for your caregiver to move in to eliminate the potential for infection coming into your home?
Do you feel safe enough with your caregiver to allow him or her to do so? (All caregivers should have a particularly thorough background check anyways).
There may be circumstances in which having a caregiver is still the right way to go. If you’re a cancer patient who is going through a difficult treatment protocol without loved ones available to care for you, then it may be quite wise to have your caregiver in your home despite any additional risk.
#7: Think About The Risk Of Being In A Nursing Home
Many of us have seen the news regarding the large numbers of Covid deaths coming from nursing homes. These environments have been underfunded for decades and the consequences in the last few weeks in particular have been disastrous.
The Associated Press has reported that, as of May 4th, 2020, 20,000 Covid deaths have come from nursing homes; that accounts for nearly 30% of American fatalities. While that is a high percentage of the overall Covid death toll, I’d like to put this number in perspective.
The CDC says that 1.3 million Americans live in nursing homes. While I do not want to minimize the unfathomable pain for the families of those 20,000 people, the odds that any given nursing home resident has perished is around 1 in 65. I note this statistic to try to minimize any additional stress to cancer patients living in a nursing home.
Still, my hope is that the awareness of this challenge should push you to consider the pros and cons of living in this type of environment. Given the situation, would another friend or family member be willing to house you until the Covid threat has subsided? It’s an important question to consider.
#8: Develop A Communication Plan
Do you have a communication plan in place for your family members if an emergency occurs? Who will call who? Consider the following factors. Who knows the most about you? Who is the most likely to be available in an emergency? Who is the most likely to pick up their phone? These are a few of the factors that you will want to consider in deciding who is responsible for spreading important information when help is needed.
It’s wise to choose a few trusted family members to have on a core communication team who can help if there is an emergency. And don’t forget, those people should know about the Grab and Go Kit. They should also know where to find it to get it into the hospital if you aren’t capable of grabbing it in an emergency.
In closing, I acknowledge that there is a lot to consider here. This gives you a good idea of a few of the things Serenity does for concierge clientele. You can be just as prepared as they are. Just try to accomplish a little more each day so that you’re more prepared for your treatment—regardless of what comes.
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