The Problems With End of Life Care

“Let’s not talk about that”, “That’s morbid”, “You don’t have to worry about that.  You’re healthy”.  Those are some of the many responses I have gotten when I have tried to talk to loved ones about what I would want if something terrible happened to me like a car crash or terminal illness.  For others who have tried to have the same conversations, those phrases probably seem familiar.  For those of us in public policy or those in the medical field, the phrases are different, but they get at the same idea.  Talking about the end of life is difficult, so we, as a society, don’t do it, or we lash out at those who try to.  The problem with this is the only thing certain in life is death.  We don’t know when or how it will happen, but we know it will happen.  This means we have to talk about it - as individuals and as a society.  So let’s talk about it.

What We Pay For

In the US, “Doctors are paid to do things to people, not for people” (Letting Go by Katy Butler).  Insurance companies will pay for chemotherapy, surgery, feeding tubes, respirators and other medical interventions during end of life care but often will not pay for a doctor to talk to a patient about if those actions are wise.  The Affordable Care Act originally included coverage for a doctor to have voluntary end of life care preferences and advance directives discussions with patients every 5 years.  Soon people were crying out that the ACA was instituting death panels that would force patients to stop treatment because it was too expensive - as many of you know, that piece of the law was eventually removed.  The hyperbole surrounding this addition was mostly the result of politics.  However, this tactic was partially successful (it was removed from the ACA but didn't result in the law not being passed) because it tapped into real fears.

Most health insurance companies cover some sort of hospice or palliative care, but often will require that patients stop seeking curative care to receive those benefits.  Many health policy experts believe this is why patients wait until the very end of their lives to use their hospice benefits or why they never have the chance to.  In 2004, Insurance Company Aetna decided to try an experiment - they offered concurrent care (hospice care without forgoing curative care) to a group of policyholders who had less than a year to live.  Even though the policy holders had more options for treatment, they ended up using fewer.  They went to the ER half as often as policyholders without concurrent care.  Hospital and ICU use dropped by more than two-thirds  and overall costs fell by almost a quarter.  (Letting Go)

Currently, Medicare and Medicaid offer hospice care, but not concurrent care to all policyholders.  The ACA required that Medicaid cover concurrent care for children and that Medicare use 15 states to test concurrent care.  While Medicaid has implemented it’s part, Medicare has yet to start. (Medicare Lags in Project to Expand Hospice)

How Palliative/Hospice Care Helps

As stated above, hospice care is less expensive than curative care.  However, most of us would agree that cost is not the most important factor when it comes to whether a person uses hospice/palliative or curative care toward the end of her life.  That’s why it is important to be aware of the other benefits of palliative care.  In 2010, the New England Journal of Medicine published a report that showed that calling in palliative care specialists earlier in a person’s illness substantially improved the patient’s quality of life.  That makes sense as the philosophy behind palliative care is to make a patient more comfortable.  What was unexpected was that on average, those patients in palliative care lives 2.7 months longer than still seeking curative care.  This is most likely because the cures that patients seek at the very end of their lives are more experimental and so often do more harm than good. (The Unexpected Benefits of Palliative Care)  Other studies have found different results, but they often find that there is either no difference in survival rates, or that palliative care extends life expectancy for particular diseases (usually in weeks or months).  Finally, the families of patients who receive palliative or hospice care before death are less likely to suffer from depression 6 months after the patient passes away.

Conclusion

There is no right or wrong answer on how to approach end of life care.  Whether a patient chose palliative or curative care is, and should be, up to that patient only.  However, by offering patients both options simultaneously, we can better help those with terminal illnesses (and their families).  Finally, no matter what, we shouldn't avoid the conversation about what we want for end of life care even though it is scary.