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Facing Your 2 Biggest Questions About Death

It’s been said that only two things are certain in this world. This week, Savvy Psychologist Dr. Ellen Hendriksen talks about one of them, and it’s not taxes.

By
Ellen Hendriksen, PhD,
August 18, 2017
Episode #166

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People unfazed by the idea of death are about as common as people who like taxes. Pretty much everyone has some kind of death-related fear or anxiety. It may be specific—we may fear illness, pain, or dying with regrets about how we’ve lived our life. We may have seen a loved one suffer and worry the same will happen to us. Or, death may simply be something unpleasant (and hopefully far off) that we just don’t like to think about.

But as they say, “no one gets out of here alive.” So by request from listener Marc from North Carolina, this week we’ll cover common questions about the physical aspects of death. Does it hurt? What happens in the final moments? And since this is a psychology podcast, what exactly happens in the brain when you lay down that boogie and play that funky music til you die?

Now, I’m a psychologist, not a physician, but I do know my way around a database, so I’ve dug around in the palliative care and end-of-life research for the information in this episode. So this week, here are the answers to two questions about what happens when we make like Bon Jovi and go out in a blaze of glory.

Question #1: Is death painful?

When it comes to fear of death, pain is a big concern. In a study in the prestigious Journal of the American Medical Association, patients, family, doctors, nurses, and other care workers like hospice volunteers ranked freedom from pain as the most important factor at end of life.

At the same time, a different JAMA study found that fully half of families of patients who died in a hospital judged that their loved one was in moderate to severe pain at end of life.

So the answer to “is dying painful?” comes in two parts: one is, it depends. Some people just wind down and die painlessly. But pain is often associated with particular diseases like cancer. But the other answer to “is dying painful” is: it doesn’t have to be.

Now, many patients avoid pain medications because they don’t want to become addicted, they worry they’ll build up a tolerance and render the meds ineffective, or they don’t want to bother to their doctor or come across as a complainer.

By the same token, sometimes doctors don’t adequately assess pain or manage it as well as they could. But whether pain comes from patient reluctance or doctor misunderstanding, the real barrier here is communication.

For patient misgivings, good communication can help reassure them (or their families) that at the end of life, addiction isn’t a concern; indeed, situations like this are what pain meds are for. For folks worried about tolerance, talking with the care team can reveal that there are lots of alternatives. Regarding not wanting to be a burden or a whiner, again, communication can help reassure patients that speaking up is encouraged and seen as a sign of strength.

Let’s look at it another way: A famous study out of Massachusetts General Hospital in Boston found that patients with advanced lung cancer who saw a palliative care team—doctors who specialize in maximizing comfort and quality of life—throughout their illness had a higher quality of life than those not assigned to early palliative care. This meant they had less pain, were more satisfied in their relationships, coped better, felt more fulfilled and content, and had less anxiety and depression. But most striking, they also lived almost three months longer, every day of which was precious.

One of the reasons for this could be that palliative care teams specialize in making people comfortable—regarding pain, nausea, fear, depression. They neither slow nor hasten the ride you’re on, but they make it a lot smoother. They’re comfortable talking about tough stuff, whether physical, emotional, or spiritual. They bring up difficult topics in a supportive way, normalize talking about end of life, and encourage family members to communicate not only with the care team, but also with each other.

And at end of life, good (or poor) communication turns out to have a big impact. In the same study where bereaved family members thought their loved one had died in pain, only 47% of physicians knew when their patients preferred to avoid CPR and 46% of do-not-resuscitate orders were written within two days of death. One reason that some deaths are painful is that we have the technology to lengthen the duration of life without improving its quality. Ventilators and feeding tubes have their place, but they can also draw out the process and become impediments to dying.

This can all be avoided. But you don’t need a palliative care doc to get the ball rolling. Be willing to think, plan, and talk about end of life—with yourself, your family, and your doctors.

So counterintuitively, if you’re afraid of death, think about it, talk about it, and make plans now. Download your state’s advance directive documents, which are legal documents that allow you to specify your wishes ahead of time regarding who will make decisions for you if you’re unable and what medical treatments you do and don’t want.

To sum it up, plan ahead and be willing to talk about tough stuff. In addition to living better, you may just live longer.

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