There are few occasions in life more heartbreaking than learning that a loved one has a terminal illness. It is the beginning of a difficult period where you must make incredibly difficult decisions about that person’s care. It is important to remember that treatment for end of life care is often very expensive.
The Cost of End of Life Care
According to the Kaiser Family Foundation, approximately 80 percent of people who died in 2014 were on Medicare. Obviously, the result is that Medicare is by far the largest healthcare insurer during a person’s last year of life. According to a 2004 study, around 30 percent of all Medicare expenditure relates to a beneficiary’s last year of life; 10 percent of all Medicare spending relates to the last month of life.
According to a study by the Mount Sinai School of Medicine, out-of-pocket expenses for Medicare beneficiaries during the last five years of life averaged around $39,000 per individual, $51,000 per couple and $66,000 for individuals with Alzheimer’s and other chronic conditions. For 40 percent of American households, the financial burden exceeded their assets.
Is it Worth the Cost?
The desire to make your loved one’s last years as comfortable as possible is completely understandable. In some cases, you will feel it is worth trying an experimental drug, which may have a profound effect or at least reduce the person’s suffering.
In most cases, however, the excessive cost is not worth it. In a 2009 study by B. Zhang et al. that was published in the Archives of Internal Medicine entitled ‘Health Care Costs in the Last Week of Life: Associations with End of Life Conversations’, researchers attempted to determine if more money equaled a ‘better quality’ of death in patients with terminal cancer. The study concluded that higher costs were associated with a worse quality of death. Patients that discussed end of life care with their doctors had far lower costs in their final week of life.
If this seems counter-intuitive, the reasoning is simple. Family members often agree to aggressive and expensive treatments that are frequently harmful and painful. Remember, many procedures and drugs used in end of life care are experimental and unproven. However, a family’s desperation to help their loved one means they don’t consider things from the terminally ill person’s perspective. Few people are willing to have a frank and open discussion about death and, as a result, the person who is dying doesn’t always get the care they want.
According to 1997 study published in the Institute of Medicine and cited in the Kaiser Family Foundation website, 90 percent of adults would prefer to receive end of life care at home. However, only 33 percent of Medicare beneficiaries (aged 65+) die at home. To combat this issue, Medicare began covering advance care planning. This involves physicians and other health professionals discussing end of life care and patient preferences with the afflicted individual and his or her family.
Medicare Advance Care Planning
Medicare introduced its end of life care initiative in 2016. Now, Part B covers advance care planning, which includes discussing your preferences with your physician and a non-physician practitioner (NPP). The goal is to determine the type of care that is right for you in the event of incapacitating or life-limiting conditions. For example, you can talk to these medical professionals about planning for a time when you’re no longer capable of making your own decisions regarding your healthcare.
Please note that it is NOT the same as an advance directive, which is a legal document outlining your preferences in the event you become incapacitated. Advance care planning is available to anyone on Medicare and involves a series of discussions rather than a one-time session.
Regarding payment, advance care planning is not completely covered by Medicare, as it is not one of the free preventive services covered by Part B. You will pay 20 percent of the cost after your Part B deductible, which makes it the same as other Medicare-covered services.
Patients Are Not Yet Availing Themselves of the Opportunity
While the advance care planning initiative is an excellent step forward by Medicare, there is a surprising lack of interest among beneficiaries. While 95 percent of doctors agree that advance care planning is a good idea, 29 percent have yet to receive training on how to talk to patients and families about end of life care.
As of April 2016, only 14 percent of doctors said they received a bill for an end of life discussion. While this figure has risen in the interim, it is still too low. Medicare pays $86 for the discussion when it occurs in a doctor’s office and $80 if it occurs in a hospital. It amounts to a 30-minute discussion, but physicians believe patients are slow to take advantage.
Medicare needs to address a few issues with advance care planning. At present, it is still relatively unrestrictive for billing providers, as there are no limits on how to use the code in relation to frequency, provider type, and diagnosis among other things. Also, the discussion can take place with a family member and not the patient.
While we understand your desire to keep your loved one around for as long as possible, denial is the worst way to approach what is a sad yet inevitable situation. There is a strong possibility that your loved one wants to spend their last days at home surrounded by family rather than in the unfamiliar surroundings of a hospital.
A 2010 Dartmouth study published revealed that over 40 percent of end of life patients saw at least 10 doctors in the last six months of their lives. Rather than forcing or allowing someone to spend a fortune on unnecessary treatment, take steps to find out what the afflicted individual wants. With advance care planning, there is no confusion and no need to spend the last few weeks of life making trips to and from the hospital.
To prevent yourself from falling into the trap of endless hospital visits for expensive tests and treatments that could cause a great deal of pain and anguish, make your choices legally binding. Create an advanced directive such as a living will so your preferences are in black and white.