4-What Do I Do Now?

Trust your doctors. If you don’t trust them, you will not fare well.
Make sure they discuss everything with you and you understand what is happening. If they don’t talk to you or answer your questions, find another doctor. –SR

Choosing a Physician

Medical needs can start with one physician and lead to another. Each step along the way, it is important to have a medical team you feel you can work with. We are putting our lives in the medical team’s hands, so finding the right fit is imperative. As our minds spin with details and emotions, it is particularly challenging to seek out a doctor. The right fit is a combination of knowledge, experience, and personality that suits us. Steps that can be used to find a physician include:

Talk to your regular physician/gynecologist/cardiologist, or your child’s pediatrician, and ask for recommendations
If referred to a specific clinic, ask a nurse if one provider is better at meeting the qualities in a physician that are most important to you
Call local hospitals and ask for referrals
Investigate medical universities and their physicians with specific specialties
Contact organizations (e.g., American Heart Association, American Cancer Society, National Institute of Health, Brain Trauma Foundation) to see if they have recommendations

ch 4 doctors Finding medical professionals you want to work with is one topic in which Google can be your friend by providing pointers to jump-start your search. As of this writing, U.S. News and World Report has an article called “How to Choose the Best Specialist Doctor.”[1]

I was at work and got a phone call from my gynecologist who said my test came back and that I needed a hysterectomy. He was very matter of fact, cold, and had no emotion in his delivery. I ended up firing him. I knew I needed someone else. I researched and asked around and got the name of Dr. Edward Weiser, who was amazing. We were around the same age and hit it off personality wise. He always was attentive and his bedside manner was good. –DH

The doctor who performed the biopsy called and with a blunt statement announced, ‘It’s cancer.’ It hit me like a lead balloon and I was extremely upset. It took me over a week to even discuss it with family. –KM

Ask around and seek the right doctors. –JZ

Have a doctor you absolutely trust. –NA

Get a second opinion. –GW

Some people wondered why we were content with the diagnosis and treatment plan given by our medical team and why we didn’t go for a second or third opinion. We felt we had the best. We didn’t want our choice to be questioned. –NL

Listen to your doctor and if you don’t like the doctor, find another one. –KM

Go to doctors you trust and feel you can get along with. –MM

Expenses

As the rollercoaster climbs up the hill, so do expenses. Expenses, missed work, and insurance coverage add stress to an already challenging time. At this stage, questions about cost will swirl through your mind. Writing down your questions will give you a starting point as to what information you need. How much is this going to cost? Is my insurance going to cover this? How much will I have to pay out of pocket? What if I can’t work?

A Stress in America report in 2018 revealed that health-related issues are stressful for Americans regardless of a family’s household income. The study found that 64-69% of Americans feel stress about the cost of health insurance and 56-57% experience stress regarding medical bills.[2]

The cost of all the surgeries and treatments is hard. –LE

I Need to Know More Than Treatment

Moving through a medical crisis requires new skills and information. Finances, law, insurance, and benefits become our new language.

Financial Impact

People don’t talk about the financial impact mental health disorders can have on a family. It costs a lot of money. Getting help, particularly mental health services, is costly. Insurance doesn’t cover much and the end of treatment is not in sight.–KW

The financial impact of an illness, accident, or chronic condition creates hardship for many families and leads to greater stress and worry.

ch 4 bill good The National Cancer Institute’s information in 2022 calculated the average cost of medical care and drugs tops $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million. About 1 in 4 have declared bankruptcy or lost their home to eviction or foreclosure. Other research shows that patients from minority communities are more likely to experience financial hardships caused by cancer than white patients, reinforcing racial disparities that shadow the U.S. health care system. [3]

The Alzheimer’s Association lists the following costs in 2022.

Median costs for long-term care services 2022
Long-term care services include home- and community-based services, assisted living and nursing home care.
Home care: A paid non-medical home health aide is $28.64 per hour and $1,145 per week (assuming 40 hours of care per week).
Adult day services: $83 per day.
Assisted living facilities: $4,774 per month or $57,289 per year.
Private room in a nursing home: $315 per day or $115,007 per year.
Semi-private room in a nursing home: $276 per day or $100,679 per year. [4]

Mental health and substance abuse coverage is significantly below that of physical health coverage despite mental health and substance use disorders are among the top ten leading causes of death in the U.S. and the leading cause of Years Lost to Disability (YLD). The deficient insurance coverage for mental health and substance abuse care places a burden on families. An hour-long traditional therapy session can range from $65 to $250 for those without insurance, according to therapist directory GoodTherapy.org.

A more severe diagnosis, of course, carries heavier lifetime cost burdens. A patient with major depression can spend an average of $10,836 a year on health costs. [5]

We might all hope we have prepared for such expenses, but the fact is, few are. Additionally, there is little to no way to predict what situations might befall our families.

Navigating Insurance

ch 4 insurance form Often we don’t know much about our insurance policy until we need to use it. The terminology and questions to ask can feel overwhelming. Others can help with this task. Having a trusted loved one gain an understanding of insurance coverage, how to file the claims, and record impending expenses can be a significant help. Company Human Resource departments typically have someone who understands the health insurance the company provides and can be a contact person to help you understand your coverage. Most doctor offices and hospitals have staff that investigate a patient’s insurance coverage.

The first steps include directly contacting your insurance claims department. In speaking to them, it helps to know your diagnosis and the terms pre-existing conditions and preauthorization.

Pre-existing conditions are a health problem (like asthma, diabetes, or cancer) you had before the date that your health coverage began. According to HealthCare.gov all marketplace plans must cover treatment for pre-existing medical conditions. No insurance plan can reject you, charge you more, or refuse to pay for essential health benefits for any condition you had before your coverage started. Once you’re enrolled, the plan can’t deny you coverage or raise your rates based only on your health. Medicaid and the Children’s Health Insurance Program (CHIP) also can’t refuse to cover you or charge you more because of your pre-existing condition. Insurance companies can’t refuse to cover treatment for your pre-existing condition or charge you more.[6]

Per HealthCare.gov, your health insurance or plan may require preauthorization for services before you receive them, except in an emergency. However, preauthorization isn’t a promise your health insurance or plan will cover the cost.

Double-check what your insurance is or isn’t covering and double-check your preauthorization. Don’t let anyone convince you to “sign now” to be treated and get authorization later; you can be responsible for thousands of dollars. I work in medicine, and the insurance situation during my illness was a nightmare. I often wonder what happens to those who are not familiar with navigating insurance. –BK

It really helped to have my husband check out our insurance coverage details so I didn’t have to. –CS

Financial Ideas to Explore

Reach out to an accountant to learn what expenses are deductible and the best way to pay for some expenses given your financial situation and insurance coverage. Some companies offer Health Savings Account (HSA) for their employees to contribute to. Talk to colleagues and/or Human Resource personnel to learn about your options.

Some communities and faith-based organizations offer financial support to pay for specific needs, help bridge gaps between paychecks, and other needs due to a medical situation. In my community, there is a nonprofit organization called the Loan Closet that has medical equipment (e.g., wheelchairs, walkers) for citizens to borrow for no fee. Residents can borrow the equipment for their own use or for visiting family members.

Talk to your doctor about problems with finances. Many offices have a staff person who can advise you about payments, relief, and community resources.

If your loved one is hospitalized, hospitals have social workers who can guide you concerning finances.

Reaching out to pharmaceutical companies can be beneficial. Some have programs to help pay for treatments.

Some medical situations interrupt or permanently end one’s work life. When patients aren’t able to work, they may qualify for disability through a personal policy and/or Social Security. Meeting with an attorney who specializes in disability law can guide you through filing for disability through the Social Security Administration.[6] There are specific standards and information needed for Social Security to make a decision, and if you don’t include all of the needed information, you can be denied — and it is more difficult to appeal than apply. Most attorneys who do this type of work do not require a retainer but are paid from your successful claim. When the Social Security Administration approves your claim, they pay the attorney’s fee out of your first check or two. If coverage is denied, the attorney isn’t due payment (make sure that is in the contract you have with the attorney).

Handling the search for financial support, navigating insurance claims, and filing for disability can be overwhelming on top of an already devastating situation. Many people want to help and having a friend or family member you trust take on these roles for you is a huge help and a good way they can provide support.

Important Laws

Recent legislative changes may provide you with some relief and support. As of January 2023, thirteen states and Washington, DC passed laws to help caregivers through paid and unpaid leave options. Thirty-seven states, two territories, and Washington, DC enacted the CARE Act (Caregiver Advice, Record, Enable) which provides support for family caregivers as loved ones enter the hospital or return home. Relevant articles include:

https://www.aarp.org/content/dam/aarp/ppi/2018/08/breaking-new-ground-supporting-employed-family-caregivers-with-workplace-leave-policies.pdf
https://www.agingcare.com/articles/employee-benefits-for-working-caregivers-149872.htm
https://www.dol.gov/general/topic/benefits-leave/fmla
https://www.usagainstalzheimers.org/sites/default/files/2018-09/A_New_Frontier_In_Paid_Leave.pdf
https://www.newamerica.org/better-life-lab/reports/lifting-barriers-paid-family-and-medical-leave-men-united-states/introduction/
https://www.shrm.org/resourcesandtools/hr-topics/benefits/pages/starbucks-caregiver-benefits.aspx
https://qz.com/work/1662928/the-case-for-giving-paid-leave-to-all-employees-for-any-reason/

It was helpful to have someone with power of attorney to help pay bills and fight for coverage with insurance companies. My sister, Chris, did this for our brother. He was often overwhelmed and needed help with that.–KL

We found it incredibly helpful to educate ourselves about schizophrenia and to connect with other people who had loved ones dealing with mental health challenges. Our education included taking NAMI’s (National Alliance of Mental Illness) Family-to-Family course. After completing this course, a group of us from the class continue to meet once a month to provide an ear and offer what support we can for each other. We’ve been meeting once a month for about six years now.–MCM

ch 4 knowledge Most of us have little knowledge about certain diseases or traumas until we are thrust into the situation. Names of less commonly known diseases, treatment options, and medications quickly become as familiar as our own names. We receive an education we never thought we would need.

While many who have dealt with medical crises recommend arming themselves with information, not everyone wants to know or learn about all aspects. Having knowledge about the crisis can lead some to experience increased anxiety, worry, and confusion. Therefore, it is important to know what is important and will help you. As with so much of this journey, the choices are personal and depend on what you need and want.

Workbook Chapter 4 What Do I Do Now

Here’s one way to evaluate if you need or want a specific piece of information about your situation.

Step 1.

Will this information help me	Yes	No	Maybe
Prepare myself
Understand diagnosis and treatment
Learn about the course of treatment (what will happen?)
Understand the side effects of medication, treatment or illness
Be a better advocate

Step 2.

After you think about the above areas, move to the next layer. Identify what you want to know, who to ask for the info, and who will ask. The latter column is helpful if a group of people is working together as caregivers. Together, you can determine who will gather what information and report back.

What I want to know	Who can I ask	Who will ask

Step 3.

A final area is to acknowledge what you don’t want to know. Maybe you don’t need to know it and don’t want to spend time on it. Maybe you don’t want to know it now. Maybe you just don’t want to learn about it at all.

What I don’t want to know

[1] https://health.usnews.com/health-care/patient-advice/articles/2018-01-11/how-to-choose-the-best-specialist-doctor

[2] https://www.apa.org/news/press/releases/stress

[3] https://www.npr.org/sections/health-shots/2022/07/09/1110370391/cost-cancer-treatment-medical-debt#:~:text

[4] https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-for-care-costs#:~:text

[5] https://www.cnbc.com/2021/05/10/cost-and-accessibility-of-mental-health-care-in-america.html

[6] https://www.healthcare.gov/coverage/pre-existing-conditions

Featured image courtesy of Ehimetalor Akhere Unuabona on Unsplash.