Unnecessary End-of-life Care

Having spent all that time, effort, and money to assure your heirs receive as much of your estate as the law will allow, there is another matter to consider, limiting the cost of your care. Although not a top priority toward the end of your life, it may be more important than you think for you and your family.

Unfortunately, it is not uncommon for families to go bankrupt or deeply into debt paying for medical care for their dying relative, much of which may be unnecessary. While Medicare and most other medical insurance cover end of life care, there are still many out of pocket costs, such as deductibles and copays. A 2012 study found that 40% of families could not pay all the medical bills for end of life care. Funeral and burial costs only add to the burden.

The cost of end-of-life care will depend on many factors, such as your life expectancy, the use of hospice, location of death, and amount of medical care delivered. Certainly avoiding unnecessary care and stopping medications that are no longer needed will help, but there are other ways to consider.

  • The using the “Choosing the Location of Chronic and End-of-Life Care” section may prevent you from opting for a more expensive location you don’t need by helping you pick the level of care that is right for you. Let your family know that the more care and support they provide, the less you will spend.
  • The Role of Insurance section will show you ways of making sure you get the maximum financial benefit from your life insurance and using other insurance types to protect your family from going into debt trying to pay your medical bills.
  • As you will see in the Financial Assistance Programs section, there are organizations that may help you with some of the costs.

While wanting to save money on your healthcare while you are terminally ill may seem cold, it turns out that, in many cases during end of life care, less is more. So it is best to think of this as a quality of care issue.

  • Frequently this care is totally unnecessary, with no long-term benefit and potential harm. It may even be an attempt to get more medical insurance payments when the provider bills for the unneeded treatments, which is a subtle form of fraud.
  • It is most important to avoid medical fraud and expensive treatments of little or no value to your end of life care, especially miracle cures or other unproven treatments.
  • There may also be chronic medications and other treatments that will no longer make any difference to your health, so why bother with them.
  • Potential harms from unnecessary testing, medications, and treatments may include:
    • discomfort and side-effects for no significant benefit
    • drug interactions with palliative medications
    • delay of and interference with palliative care
    • risk of injury
    • false hope and associated emotional trauma
    • needless prolongation of life

Unnecessary Testing and Treatment

Providing you are not interested in a clinical trial, there may come a point when further expensive care to treat your terminal illness becomes ineffective. In a lot of cases continuing treatment will even do you more harm than good, such as when side-effects and complications from treatment outweigh any slight benefit. Although it is almost never a distinct point, it has become clear that more disease treatment is no longer wanted. While this mainly includes additional treatment of your terminal illness, both proven and unproven, it may also include treatments you have been getting for decades that no longer make any sense.

Once this point is reached, 33% to 38% of terminal patients will receive some form of unnecessary care. Unnecessary care comes in many forms, including treatments and testing, but it is any care that does not contribute to your current treatment goals. It can be difficult to define what care is unnecessary for you if your treatment goals are uncertain, especially if there are other barriers to making the decision.

  • Probably the common barrier is denial, which is one of the earliest of the five stages of grief. Inability to accept the diagnosis/prognosis may result in you and/or your family:
    • continuing to request disease treatment, even though it is no longer working or causing too much discomfort
    • requesting numerous referrals and testing to prove additional treatment is needed
    • seeking unproven alternative treatments
    • seeking consultations until you find someone to agree with you, even though they are not reputable
  • Similar to denial, not understanding the diagnosis/prognosis may have similar results.
  • If you do not tell your family how serious your condition is, they will request unnecessary care if you are not able to speak for yourself.
  • You do not have advanced directives, or they may be unclear or unavailable. This may result in families requesting and physicians providing unnecessary care if you are not able to speak for yourself, not knowing it is unwanted.

Once you and your family have understood and accepted the situation, you will probably decide that life-prolonging treatment and additional unrealistic attempts to cure your terminal illness are no longer wanted. Once you have made the difficult decision that palliative care is now the best thing for you, your medical care should consist solely of palliative treatments to make you comfortable. This may include treating pain as well as symptoms and major complications of any of your current illnesses. However, even at this point it may be difficult to recognize unnecessary care.

  • It is hard to predict what effect stopping chronic medications will have.
  • It is sometimes difficult to know if treatment or testing does more harm than good, especially if the risk:benefit ratio isn’t considered.
  • The difference between comfort care and treatment of your disease is subtle.

Having said that, there are some situations when care is clearly unnecessary, such as:

  • any treatment that you prohibited in your advance directives
  • further treatment to cure your disease one you have decided on palliative care alone
  • any treatment, procedure, or testing that clearly does more harm than good
  • untested or unproven treatments

Here are some things to consider that might help you decide what may be necessary or not when you have a terminal illness.

Consider the short- and long-term consequences of any of the following.

  • Decide if additional treatment of your terminal illness, like medication, surgery, or radiation treatment will make you more comfortable or result in distressing side effects with little benefit.
  • Any monitoring, blood test, scan, or other testing procedure that will result in additional comfort care may be helpful, while testing that will result in further attempts at curing your diseasent is not.
  • Consider whether or not being in the hospital is truly a benefit.
    • Unnecessary testing and treatment are more likely to happen in the hospital, either as a result of medical professionals who are trained to save lives or requests from your family who do not want to let go. This is especially true in an ICU setting.
    • Hospital personnel are rarely trained in end of life care.
    • There is little peace or privacy in a hospital, which makes it a stressful place to be and may even be undignified for some.
    • The section Choosing the Location of Chronic and End-of-Life Care goes into more detail about comparing the different options.
  • Attempts at resuscitation with breathing tubes, chest compression, and medications are almost never successful under these conditions and extremely upsetting to families and staff.
    • Even if successful, rib fractures, lung injury, and heart damage are very common.
    • It is not uncommon (about 38% of patients) for CPR and resuscitation to be done, despite DNR or POLST orders to prevent this.
    • They are more likely in an intensive care ward, but less likely for elderly patients and those with cancer of dementia.
  • Although speech therapy may be of benefit, excessive physical therapy treatments are more likely to cause pain and exhaustion than to be of any benefit.
  • Your decisions may be different if you are within 1-2 weeks from the end of your life, although this is notoriously hard to predict.
    • Will blood transfusions and antibiotics help or merely prolong the inevitable.
    • Is there any personal benefit from life-extending treatment, such as IV hydration, or a breathing or feeding tube.

Unnecessary chronic care if you have a terminal illness will depend on the reason for the treatment and the state of your illness.

  • Most of this care is medications to prevent conditions you will not live long enough to get.

There may come a point, such as the active phase of dying, at which the discomfort of further dialysis is going to outweigh the benefit of doing it.

Medications You No Longer Need

Your palliative care specialist will take a close look at your current medications to see if they are no longer needed, could potentially interfere with palliative care, or are now harmful, such as when you have organ failure. They could be preventing a disease or treating one that you have had for a long time. Some of the things they look for with your current medications include:

  • are you likely to have any symptoms or disease treated by the medication during your remaining life
    • Many preventive medications are for conditions that may not happen for years or decades.
    • If you will not live long enough to develop these conditions, why bother taking any medication that won’t make any difference.
  • if there are benefits during your remaining life, how important are they to your care and quality of life
    • In some cases, stopping a medication may result in the return of one of your non-terminal diseases and cause bothersome or even dangerous symptoms within a few weeks to months.
    • Some medications, that if stopped would result in death, should be continued until the end is very near.
  • if the benefits are important, are they worth the risks

In addition, if there is a chance you will have any symptoms or disease and might need an additional medication, they will consider if the benefits are more likely to take effect before or after your death.

Under no circumstances should medications be stopped or not started if they would hasten death, since this is considered euthenasia, which is currently illegal in the entire country.

Medications that are only used to prevent future disease or complications

These might be stopped or tapered if possible occurrences of these are well beyond your life expectancy. Your doctor must be certain that this will have absolutely no impact on your life expectancy or quality of life.

  • Beta blockers – to prevent mild irregular heart rate, migraine, or a distant heart attack or treat mild to moderate high blood pressure
  • Bisphosphonate medication – to prevent bone loss
  • Blood pressure medications for mild to moderate hypertension – may include:
    • ACE inhibitors, diuretics, beta blockers
    • people only taking them to reduce the risk of cardiovascular disease, stroke, and kidney disease
  • Medication to prevent anemia or treat mild anemia.
  • Oral antidiabetic drugs – adults with Type 2 diabetes who are only controlling mildly elevated blood sugar to prevent cardiovascular, eye, or kidney disease at some point in the future (Standards of Medical Care in Diabetes-2020, Recommendation 12.17).
  • Statins or other medications for high cholesterol.
  • Vitamin and mineral supplements, such as vitamin B12 or folic acid.

Never stop a medication unless you have spoken with your healthcare provider and agree that it is the best move for you.

Medications that have the potential of a return of that disease or severe symptoms within your life expectancy if stopped

This is a much more difficult decision. In fact, most hospice specialists would opt to continue them. If they don’t, they will only do so very close to death when they are certain that this will have absolutely no impact on your life expectancy or quality of life. If there is even the slightest possibility it would impact this, continue the medication.

  • Cognitive Enhancing Medications, such as Donepezil (Aricept) for the treatment of mild to moderately severe symptoms of Alzheimer’s dementia.
  • Inhaled asthma control medications, such as steroids or long-acting bronchodilators, or mast cell stabilizers.
  • Medication to prevent blood clots (antithrombotics or anticoagulants), unless at serious risk for blood clots in the legs, brain, or lungs.
  • Monoclonal antibodies, like Humera or Remicade, for control of autoimmune disease, such as arthritis or Crohn disease.
  • Nonsteroidal anti-inflammatory medications for chronic inflammation and arthritis.
  • Medications for mental illness – people taking medication for severe depression or other medication treating a significant psychiatric condition.

In many cases, some of your medications may be considered palliative, that is to make you comfortable and improve your quality of life, and will be continued.

  • Blood pressure medications – for those with very high blood pressure and those who would have symptoms if untreated.
  • ACE Inhibitor, beta-blockers, and diuretics – for symptoms of congestive heart failure such as trouble breathing and swelling
  • ACE Inhibitor and beta-blockers – for symptoms of atherosclerotic heart disease such as chest pain, shortness of breath, and irregular heartbeat
  • Calcium channel blockers – for symptoms of coronary artery disease such as angina and arm pain

Medications that should be taken right up to the end

Many medications will only be stopped during the active phase of dying, which is usually the last few days of life. These medications include:

  • insulin – all people with Type 1 diabetes and those taking it for Type 2 diabetes
  • oral antidiabetic drugs – people with Type 2 diabetes taking at risk for symptomatic hyperglycemia or diabetic ketoacidosis
  • thyroid, adrenal, and other endocrine gland replacement medications
  • many cardiovascular drugs that control heart failure or dangerous heart rate irregularities (arrhythmias)

Unnecessary Spending

Unfortunately, if you have a serious disease and terminal illness, especially cancer, you may be easy prey for scammers trying to sell products guaranteed to treat their illness. Unlike most scams, these are more likely to be found on the web, especially in discussion groups, online forums and in blog posts. You are more likely to be the victim of medical scams if you have memory loss or dementia and serious diseases such as cancer, diabetes, heart disease, arthritis and Alzheimer’s.

Two of the ways you could throw away your money is to spend it on miracle cures or be defrauded by online pharmacies and healthcare product sellers that either send you fake products or never deliver them at all. You may also be lured into thinking you are saving money on disreputable online pharmacies who are sending you lower quality medications or even medications contaminated with harmful substances.

Finally, getting any form of medical care online can be risky. Scammers can get your personal, financial, and medical information and use this identity theft to make purchases in your name.

Miracles Cure

Don’t be tempted to waste your money on miracle cures. At this point, there aren’t any, so it is best to be wary of any:

  • therapy/drug coming with a money back guarantee despite making unrealistic and hard to prove promises or claims about amazing results, such as:
    • Miraculously kills cancer cells and tumors
    • Shrinks malignant tumors
    • Selectively kills cancer cells
    • More effective than chemotherapy
    • Attacks cancer cells, leaving healthy cells intact
    • Cures cancer
    • Working quickly
  • product being sold as a broad cure for all cancers or a wide range of unrelated medical conditions or terminal illnesses
  • drug that claims to be a “new breakthrough” and/or a “time tested remedy,” especially if this is the first time you have heard of this drug
  • drug that has not been approved by the US Food and Drug Administration and/or no healthcare professional, reputable agency, or government has never heard of
  • products that have only personal testimonials without sound science or evidence to prove it works
  • product that downplays, makes light of, or bashes the significance of modern medicine and/or science
  • miracle cures and treatments that have supposedly been covered up by the pharmaceutical industry and the government
  • sales pitch that involves jargon that sounds vaguely scientific, but is just meaningless made up words that are not used in science or medicine

Medical Fraud

Getting any form of medical care online can be risky. For example, when buying medications or other medical products there is always the possibility you are dealing with shady sellers. This could result in less potent, fake, or tainted products.

Any time you use a computer to buy something there is a risk of many consequences, but there may be additional ones when buying medical products online.

  • You are exposing your computer to malware and being hacked for private information.
  • Sellers can use your information for fraud and identity theft, including medical identity theft.
  • Fraudulent medical suppliers could sell your medical information to other scammers or otherwise exploit any that you give them.

Fake or tainted treatments

Buying medication online is very common these days, since it can be more private and convenient, and less expensive, but it is very much buyer beware. You may end up with less effective generic drugs or tainted medications with dangerous fillers, such as drywall and rat poison. Many of these so-called suppliers are actually scams where you may be buying medications that turn out to be fake and possibly harmful and, or that never arrive.

Here are clues to identify possible medication buying scams.

  • The price is too good to be true. Even pharmacies selling low cost medications need to make a profit to keep operating.
  • The product is offered only through illegitimate websites or out of the country.
  • Information about the medication is only found in a public forum, commercial website, or the sellers website.
  • The people sharing information about the product want to contact you privately (email, phone, private messaging on forums, or social media)
  • If you question the validity of the product you are attacked (these types of scammers are often combative, well spoken, and strong debaters).
  • You are told not to tell your healthcare provider about taking it.
  • A valid prescription is not needed, merely filling out a questionnaire.

If you have purchased and received medication from a source you are not sure of, there are steps to take to assure you are getting the correct untainted medication and dose.

  • The most important thing is to use your past or current medications as a reference.
    • You should compare the size, shape, color, and markings to what you have had in the past.
    • If possible, take note of any differences in the taste and side effects, which indicate a counterfeit or tainted medication.
    • Check with your pharmacist or refer to a reliable online drug information source, such as Drugs.com, that has pictures of each medication.
  • Check for changes in the packaging, altered or unsealed containers, altered label, or other evidence of tampering.

You can avoid these problems before you buy prescription medications by carefully investigating the source. Check that the supplier is a safe, reputable source by:

  • making sure the web address ends in .pharmacy
  • checking their license.
  • checking other reputable resources such as:
    • the Better Business Bureau to see whether other people have lodged complaints about the product or the product’s marketer
    • your healthcare provider or the appropriate health professional group, such as the American Heart Association, American Diabetes Association, or the National Arthritis Foundation about the condition the product treats
    • the FDA office closest to you or the FDA Website
  • making sure they comply with drug laws, professional practice laws, and privacy laws
  • asking for details about and proof of how they ensure your patient confidentiality
  • making sure they provide easily accessible contact information (toll-free telephone number and monitored electronic messages) for your inquiries, have pharmacists available to talk to, and have timely responses

Check Medication Health Fraud from the U.S. Food & Drug Administration for the latest on fraudulent or tainted medications.

Medical identity theft

Scammers who obtain your Social Security, Medicare or health insurance numbers can use that information to pay for their own medical care. Unlike other purchases with stolen information, you are liable for the payments, including any billed copays.

Only use this information at legitimate healthcare facilities and never give it out for any free health checks, such as those that may be offered at shopping malls, fitness clubs, and retirement homes.

Medical alert scams

Managing a chronic or terminal disease may involve remote monitoring systems and many seniors depend on emergency alert devices. Unfortunately, there are many scams that pretend to inform or offer enrollment in these personal medical alert services, either free or paid for by a family member. The trap comes when these scammers request wired payments or bank accounts, credit card, or Medicare numbers to pay for an upgrade that is needed prior to shipment of the device that never comes.

Never give this type of information to anyone who calls you, no matter who they may claim to be.

Check for specific concerns at the Health Fraud Scams website from the U.S. Food and Drug Administration.

Financial Assistance Programs

Avoid spending money unnecessarily by looking for programs that will assist with medical expenses. There are many resources, both general and specific, available and websites to find others.

Population-specific resources

These are links to financial resources that are only available for a particular group or population of people.

Other financial resources

These are sites that offer or describe financial and other resources to any user, but are always worth checking.

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