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  • Jeanne Lee

Post 50: What about the Hidden Costs? - 10 Potential Expenses of Living with Declining Health

Updated: Nov 9, 2022

(Many thanks to Erin Nielsen, LCSW, of The Holding Group and Magdalena Belgie, LMSW, for their expert input with this post!)

"The nutrition shakes, the incontinence pads...they add up! Can we get help for them?"

Many of us are aware that most bankruptcies filed in the United States are due to medical expenses and that 1 in 2 Americans carry some amount of medical debt. Big expenses come to mind, that is deductibles, copays, and coinsurance for hospitalizations, emergency room visits, specialist visits, tests, and expensive medications. What comes to mind, also, is reduced income when a person with declining health is no longer able to work as many hours as they used to or are forced to take leave or early retirement.

A friend once asked me, "But what about the hidden costs? What are the hidden costs I also need to prepare for?" I was stumped. Hidden costs were something that rarely occurred to me when I was working as a hospitalist (an internist who takes care of patients when they are admitted to the hospital, who then turns care back to the primary care physician when patients are discharged from the hospital) or as a palliative care consultant working in the hospital (read Post 1: What Exactly Does a Palliative Care Specialist Do?).

This post is primarily about day to day financial expenses patients and their caregivers have asked me about during my time as an outpatient palliative care physician (meaning I see patients when they are not in the hospital, whether it be in clinic or in their homes), expenses that come with living with declining health, whether it be due to forgetting how to use the microwave due to dementia, losing the ability to continue a tile business due to leg and arm weakness after a stroke, or having difficulty leaving the house due to significant fatigue from cancer treatments. Note, example prices below are obtained from quick Google searches:

1. High calorie nutritional shakes, vitamins, and supplements - If a person is recommended to drink one Boost or Ensure each day, that could cost about $10 each week. Depending on an individual's medical issues, recommendations for supplements may include vitamin D, calcium, iron, vitamin B complex/ B12, and/or folic acid, often paid for out of pocket.

2. Incontinence supplies - Supplies may include adult diapers or pull ups, wipes, barrier ointment creams, and incontinence pads. Depending on how often the diaper is changed and the brand of the diaper, diapers alone could cost $10 each week.

3. Home modifications to reduce falls risk - Modifications may include for example, handrails for someone to hold onto as they climb steps, wheelchair ramp leading up to the front door, shower grab bars, bathtub conversion to walk-in shower if someone were having difficulty stepping into a tub, or enlarging of doorways to allow wheelchairs through.

4. Equipment to aid in daily self care - Daily self care items include any equipment that would allow a person to stand up from a chair and walk on their own, as well as dress, shower, use the bathroom, and feed themselves without requiring the assistance of another person. These items may include for example, gait assistive devices such as walking cane, walker, wheelchair, or scooter; power lift chair to help with standing from a sitting position (often requested by patients and often not covered by insurance, ranging $350-$1500); raised toilet seat; transfer bench to help someone step into a tub; shower chair; detachable shower head; reacher/grabber to grab items overhead or on the floor to minimize reaching up or bending over; or adaptive utensils with modified grips.

5. Equipment or supplies related to medicines and medical care - These items may include the pill splitter, pillbox, glucometer (blood sugar reading machine), blood pressure reading machine, pulse oximeter (oxygen monitor), humidifier, or scale (to measure daily weights as often recommended to patients with difficult to control heart failure or liver failure). Home medical care expenses may also include for example, monthly service charges in addition to initial equipment or activation fees for supplemental oxygen delivery with oxygen concentrator/ tank maintenance or a medical alert system such as Life Alert.

6. Private pay helpers or caregivers - Whether this be a caregiver you hire through a home aide agency (ranging $18 to $32 per hour, depending on geographic location and the care activities you are requesting) or the neighbor next door you pay $40 to watch your mom as you run errands for the afternoon, many people are not eligible for Medicaid covered caregivers and they may have to pay for helpers out of pocket [read Post 40: Five Key Differences Between Home Health Care and Home (Provider/Caregiver) Care].

7. Transportation costs - Transportation costs may include modifications to a personal van to allow for wheelchair transport or it may be fares to take the public bus, taxi, or Uber/Lyft. Occasionally, the only way a person can get to a much needed medical appointment is via nonemergency ambulance transport, for example a man who is bedbound after a severe stroke and requires ambulance transport three times weekly to the dialysis center.

8. Wound care supplies - Many wound care supplies and equipment as ordered by a healthcare provider are covered by Medicare and other insurance. Usually, over the counter or disposable items such as topical antibiotic creams, bandages or tape, and moisturizing creams are paid for out of pocket.

9. Specialized medical care and specialized care supplies - Experimental procedures or therapies, such as an experimental cancer treatment, may need to be paid for out of pocket. Medical care provided in another city, for example evaluation for an organ transplant in a city ten hours away, may require out of pocket living expenses for a time. Specialized care supplies such as those for a tracheostomy (a hole that surgeons make through the windpipe to ease breathing for people with certain types of breathing difficulties), a long term feeding tube through the stomach, or an ostomy (a hole that surgeons make in the abdomen to allow for stool or urine to pass through into a bag for people with dangerously malfunctioning digestive or urinary systems) may include items that are covered by insurance and items that need to be paid for out of pocket.

10. Copays for "non-urgent" specialist needs - When a person has a serious illness, we expect expenses directly related to that illness. However, there are many other types of medical concerns that may need to be addressed to improve quality of life, such as hearing evaluations and hearing aids, dental appointments and bridge work, eye appointments and glasses, and podiatry appointments for toenail clipping especially for those with diabetes and/or toenail abnormality due to common nail fungus. These appointments, tests, and prescriptions may require co-pays or other out of pocket expenses.

After considering these potential expenses, the next question may be, "Can I get assistance to pay for any of these items?" The answer to this question is largely dependent on the particular items you need financial assistance for, the resources available in your community, and the type of insurance(s) you have.

Your single greatest resource may be a good medical/healthcare/clinical social worker to help direct you to community resources and guide you on the pertinent questions to ask when talking to insurance companies, billing departments, and other financial institutions. They may instruct you to designate a durable (financial) power of attorney, which is NOT the same as a medical power of attorney [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)]. A durable (financial) power of attorney is the person whom you trust to pay your bills, make bank deposits, manage your investments, manage your property, and perform other finance-related activities during times when you physically, mentally, or emotionally are not up to it. They may instruct you to visit an estate planner to make a plan to protect your assets in case something were to happen to you; this may include, for example, completing a will and setting up trusts.

A clinical social worker may be referred to you by your primary care physician or found for example, in the hospital, rehab facility, nursing home, assisted living facility, senior center, dialysis center, or cancer center.

Potential sources of financial coverage or assistance may include for example

- Medicare, Medicaid, or private insurance (this may involve calling your insurance company to determine exactly what supplies, equipment, transportation, and services are covered)

- long term care, disability, or certain types of life insurance (again, this would likely involve calling your insurance company to ask about the specifics of your policy)

- personal savings

- contributions from close family members and friends (help may appear in the form of time, such as supervising a loved one so less hours need to be paid towards a privately paid caregiver; expertise and effort, such as fixing the air conditioner so money does not have to be diverted towards hiring someone else to do repairs; goods, such as paying for weekly groceries or medications; or cash itself) (read Post 22: Dear Caregiver, Are You Wondering How to Ask For Help?)

- benefits [such as VA (Veteran Affairs), pension/retirement benefit plans, current employer (this may involve reaching out to Human Resources)]

- local elderly assistance programs, such as your local Area Agency on Aging (AAA)

- local food pantries or meal delivery services such as Meals on Wheels

- local chapters of charities or nonprofit organizations with specific purposes of assisting those with particular needs or living with a particular illness, such as Alzheimer's Association for dementia patients and their caregivers

- disease specific organizations, such as cancer organizations that may help with paying for a wig

- low income utility discount programs (this would likely involve directly reaching out to your utility company) or low income housing assistance (this would likely involve reaching out to your local housing authority)

- crowdfunding sites such as GoFundMe to raise money to help pay for medical items and medical bills (consider also negotiating for a discounted rate with your hospital or healthcare provider's billing department)

Unfortunately, much of the above may require extensive researching online, driving around town to drop by offices, making multiple phone calls, obtaining letters of need from healthcare providers or repeatedly asking them to complete specific forms, gathering and organizing detailed personal information, and filling out numerous forms. A person already overwhelmed with a new diagnosis, declining strength/energy/attention, or full schedule of doctors' appointments/labs/tests may not have the physical/emotional/mental bandwidth to start application processes.

If this is the case, what may be just as helpful as being aware of potential "hidden" costs of living with serious illness may be designating a person or two to assist you when you are advocating for financial assistance. I hope this post would act as a helpful start.


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