The true cost of end-of-life care

You’ll never pay your biggest medical bill.

Why? Not because you’re a deadbeat, but rather because you’ll be dead.

End-of-life care (EOLC) can be incredibly expensive. Let’s look at some of the reasons, and then have a discussion of choices we all need to consider for ourselves and our loved ones before it’s too late.

The true cost of end-of-life care

End-of-Life care is hugely expensive (see below), but it doesn’t have to be tremendously costly. What drives the cost of EOLC to the extreme? Choices made by the patient, family and sometimes doctors, can produce huge costs.

What are the costs and what are the choices? Often they have to do with how aggressive treatment is as a patient approaches death. Some patients and families want “everything done” even when the patient is near the end of a terminal illness. Sometimes, even the most advanced and aggressive treatment will, at best, only add a few weeks or months to the patient’s life.

Other times, the patient is gradually failing – multiple organ systems are disease-ridden and gradually becoming non-functional: heart, kidneys, liver, lungs, brain – and there just aren’t any treatments that can be done successfully in the face of this decline.

Or the patient may experience a sudden, catastrophic event from which recovery is almost impossible.

How these patients choose to be treated can substantially affect the final cost, how the patient spends his final days and how much your family itself has to suffer during your final days.

DNR via Shutterstock

DNR via Shutterstock

The monetary costs of end-of-life care

First, some estimated costs:

• About one-quarter of all Medicare payments are for EOLC paid out during the last year of life. That’s estimated to be about $50 billion per year. The majority of that $50 billion is paid out for the final two months of these patients’ lives.

• It’s not unheard of for EOLC to cause the patient to use up much or all of his savings for copays and non-covered expenses during his final months.

• Average cost for a stay of one year in a US nursing home – about $75,000. That doesn’t necessarily include things like physical or occupational therapy, transport of the patient to a local hospital emergency room if required, special medications, etc. Taking care of a patient in his home, depending on level of care needed, may be equally as expensive or even more so (though it depends – I know of some families who say it was cheaper to hire a full-time nurse at home than to house a relative in a nursing home).

• The “average” cost of EOLC per patient is about $30,000.

• Some drugs, used as “last ditch” treatments to possibly buy the patient a few more weeks of life, may cost from $50,000 to $100,000 per patient.

• Trips from home (or nursing home) to ER and then admission to the hospital and possibly to ICU can be incredibly expensive. I recently found out that, in my area, the minimum charge for transport to an ER via helicopter is $10,000. While few EOLC patients will need helicopter transportation, ambulance charges are also expensive.)

But this isn’t just about the monetary cost of end-of-life care. It’s also about the patient’s (and the family’s) quality of life during this stressful period.

The human cost of end-of-life care

Here’s one case that illustrates the decisions that must be made, and the costs that can occur, both financial and emotional.

A woman in  her mid-70s had an abdominal malignancy that was treated with surgery, radiation and one round of chemotherapy. The type of tumor was very malignant, and chances were high that it had already spread elsewhere. We explained to the patient and her family that the chances that the tumor would recur were high and that, should it recur, her chances of survival would be very low.

The tumor recurred and another round of chemo was begun. There was minimal improvement and tumor was found to have spread to three other major organ systems. We explained at this point that her chances for survival were almost nil. But she wanted more chemotherapy. We were hesitant, as she had become more debilitated and needed someone to stay with her around the clock in her home. We mentioned that hospice might be something to consider. She rejected that, as she believed that would be “giving up.”

So we admitted her to the hospital for another round of chemo. On the third day of chemo, her condition was clearly much worse. We tried to convince her and her family that they might consider withholding additional chemotherapy. She refused. Chemotherapy was continued. A few days later, the nurses found her unresponsive. CPR was started and she went to ICU. She was placed on a ventilator and was comatose. She still had some brain stem activity but she was essentially in a vegetative state. We asked the family to make her a “no code” – meaning, at the request of the family we would not attempt to resuscitate the patient in case of cardiac or respiratory failure – but they refused, saying that the patient refused to give up and they wouldn’t give up, either.

Over the next 10 days, the patient had cardiac arrest at least three more times. The last time the resuscitation was unsuccessful and she died.

I can’t tell you what the cost to this patient, her family and Medicare was in dollars. I can say that chemotherapy drugs are very expensive. As was her hospital and ICU stay. The imaging studies that we did, the ventilatory support, the drugs given in ICU to maintain her, and the drugs given during her many codes. But, as a guess, I’d estimate that her final three weeks cost at least $100,000. Plus what she and her family had spent on home care for her in the two months before she came into the hospital. I can tell you that the family was emotionally distraught for the weeks that this woman was in ICU and experiencing repeated codes, unresponsive on the ventilator.

What other options did she have?  Here are a few.

1. Hospice care, either at her home or at an inpatient hospice, would have been one option.

2. Not electing additional chemotherapy.

3. Choosing to not have her life prolonged by extraordinary means – no CPR (or Do Not Resuscitate [DNR]), no medications to help maintain her blood pressure, no ventilatory support. She could have chosen the “care and comfort” option. She would have been given adequate pain medication and other medications to maximize her level of comfort. If she suddenly got worse, she wouldn’t be rushed to ICU and treated extensively. She would have been given enough medications to keep her pain-free and relaxed. She would not have had to go through CPR and her family wouldn’t have witnessed her, virtually lifeless in ICU, for an extended period of time. The choices she made didn’t prolong her life, they prolonged her death. When I’ve thought of this lady and her choices, I’ve wondered if she knew how this scenario would have played out for her, if she would have made a different choice.

A word about CPR: I was explaining to our editor, John Aravosis, recently that most people think CPR is what you see on television.  It’s not.  At least not entirely.  What you don’t see is the damage CPR itself can do to the patient.  A recent study showed that one in three patients undergoing CPR suffer from broken ribs as a result – that’s the average, in the case of women it was nearly 1 in 2.  And the elderly are even more prone to bone breakage.  Those broken ribs can, in some cases, puncture a lung or puncture the heart.  But at the very least, you could end up with a terminally ill patient in ICU who, in addition to all their other problems, now has broken ribs, in addition to potentially suffering brain damage from hypoxia (lack of oxygen) depending on the length of time they’re not breathing.  A broken rib, and even a punctured lung, is a small price to pay for an otherwise healthy person to be given another lease on life.  But when the patient is terminal, and in a vegetative state, is this really the best course of action?

And in addition to the pain and suffering of the patient, the family got to witness this, repeatedly.

Unfortunately, the above case, and thousands more similar to it, happen every day.

How can you prevent having something like this happen to you?

Make your end-of-life care decisions in advance.

Get input from friends, family, spouses, others who have already made EOLC decisions, your pastor and other people in your life. You might be surprised at the input that you’ll get from these people.

Decide what you want to have done, and be extremely clear about it. I’ve seen people who have medical directives that say things like this: I want to be resuscitated if there is a reasonable chance that I can return to a productive life. Or this: If there is absolutely no hope that I can be successfully be resuscitated, don’t resuscitate me. What is a “reasonable chance”? What is a “productive life”? How does someone know in advance whether or not a resuscitation will be successful?

Before you enter the realm of making EOLC decisions I’d suggest taking a look at the following. They can give you some good advice and some tips on what to do and how to do it.

Help Guide
NIH Advance Directives
Advance directives
End-of-life decisions

You can also talk with your local hospital. Often the Patient Advocate’s office (or a similar agency at your hospital) has handouts and information that is useful. Or you can also consult an attorney who has expertise in this area.

What can you do to make sure that your wishes are known?

Whether you want nothing at all done for resuscitation, or you want just to be kept comfortable, or you want everything possible done, make sure that everyone in your family knows exactly what your wishes are.

Write them out, clearly and succinctly and carry them in your wallet, purse, fanny pack or wherever. (Some physicians, nurses and others have gone as far as having a “DNR (Do Not Resuscitate) tattoo” placed conspicuously on their chests. While this is not legally binding, it does alert both your family and caregivers that you may be very serious about not getting CPR. Even though they would probably resuscitate in the absence of a signed document, it may make them try to verify with the next-of-kin what the victim’s wishes are. There are more warnings about this procedure here.)

Make sure that your doctors, all of them, have copies and discuss your wishes with each doctor in person. That way, they will have a copy of your document and also will note your directives in their chart along with your other information.

Also, make sure that your next of kin and/or designated power of attorney know what your wishes are regarding resuscitation and have signed copies of your directives.

In addition to the paper trail, there are thumb drives available that not only store all of your medical information (diseases, medications, allergies, etc.), but also store your wishes regarding organ donation, EOLC and more. They are pre-formatted so you can fill in the blanks with your demographics, medical information, EOLC and other information. These can be very handy when carried on your keyring, worn on a bracelet or worn on a lanyard around the neck. Some will clip to your wallet and one is shaped like a credit card for easy carrying. A Google search for “medical record thumb drive,” “Medical alert USB drive,” or similar will give you a number of sites to choose from. Depending on the supplier, these can cost from about $20-$50, and can have several gigs of storage, medical records software, anti-virus software and may have other features. These can be good sources of information if you are unable to communicate your EOLC, and your medical history in an emergency. Or if you simply have trouble remembering your medical history, medications, allergies, vaccinations and other medical data.

None of these ideas is absolutely foolproof, but the more redundancy you have, the better your chances of having your wishes followed.  And at the very least, your family, in your stead, will have some sense of your wishes to guide them if you’re unable to make the decision for yourself.

An important point: Make EOLC decisions now does not prevent you from changing your mind in the future. Don’t postpone making these decisions too long. I’ve seen patients do this and then, in a sudden emergency, no one is prepared to make a decision. Keep a record of everyone you’ve given copies of your EOLC information. If you make a change in what you want done, make sure that everyone gets a new copy of your directives.

Don’t postpone making these decisions too long. I’ve seen patients do this and then, in a sudden emergency, no one knows what the patient’s wishes are, and no one is comfortable making a decision that might end the patient’s life (or at least not prolong it unreasonably).

Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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