You’re driving home from work thinking about seeing your family and what’s for dinner tonight.
An inattentive driver looking at her smartphone drifts into your lane and hits you head on.
The fire department and paramedics were able to resuscitate you at the scene of the accident, and they rush you to the ICU. You’re alive, but barely.
While you’re not technically dead, you can’t eat or breathe on your own. You can’t move. You can’t talk to your family or doctors. Days turn into weeks, and there’s still no improvement in your status.
Intense arguments start to flare up between your family members. Your wife says you wanted her to “pull the plug” if you ever ended up like this, while your parents say you told them years ago that you wanted to hold on as long as you could in case a miracle happened or some discovery was made that could fix what ailed you.
Meanwhile, the hospital is charging you $10,000 a day to stay in the ICU and to perform the various tests that different specialists think you need. Thankfully, you have good health insurance that will cover a lot of the cost. But when it’s all said and done, the premium for your family will skyrocket.
All while acutely emotional arguments regarding your fate continue to flare.
Why You Need a Living Will and Health Care Proxy
God forbid you end up in this situation.
But you could.
You don’t even have to be in a traumatic accident to end up on life support. Strokes, heart attacks, aggressive cancer, or even an adverse reaction to a medication all have the chance to put you on life support and leave you unable to communicate your desires for end-of-life care.
The most common way you might end up on life support is simply old age. About 25% of Medicare costs are spent during the last two months of a patient’s life, and most of that is incurred from life support treatment.
When you’re competent and able to communicate, you have the right as a patient to decide whether or not to accept the course of treatment your doctor offers, even if rejecting that treatment means you’ll die. This is called informed consent, and every state in the U.S. recognizes it.
So if you’ve got terminal cancer and are conscious, competent, and able to communicate, you would be able to tell your doctor, “Yeah, go ahead with that experimental drug,” or “You know, that super expensive experimental drug might add two months to my life, but it won’t improve its quality. I’ve lived a good life. I want nature to run its course, and I’ll spend my last days in my home surrounded by those I love. “
But, if you’re unconscious and unable to communicate, doctors would have to rely on a medical surrogate to make that decision for you. Many states have default surrogate consent laws that determine who gets to be your proxy. You’ve got no say in the matter because you’re unable to talk. If you’re married, your spouse is the default proxy. If you’re not married, it typically defaults to your parents, who may not agree as to what course to take.
What’s more, there’s a chance that the person the law determines to be your surrogate doesn’t know what you would have wanted to do in this situation, and makes a decision that goes completely against your personal wishes. But again, tough luck. The hospital doesn’t know what you want (you’re unconscious, remember?) and will (in most cases) follow the dictates of your default surrogate.
There are two ways to avoid this situation and make your health care wishes known for situations in which you’re incompetent and unable to communicate – to let yourself speak when you’re no longer physically able to. The first is a document called a “living will” which lays out your wishes for end of life decisions. The second is a document that authorizes a “health care proxy” to carry out your wishes for you. Both documents represent what are called “advance directives.”
A living will is a document that you fill out while you’re still competent, conscious, and able to communicate consent that states your wishes about end-of-life care if you are terminally ill, permanently unconscious, or in the end-stage of a terminal illness. In your living will you can state whether or not you want your life extended by life-prolonging treatments in situations when you wouldn’t be able to give informed consent.
You can get as specific as you want with your living will. For example, you can state that you want to forgo medicines that might prolong your life, while still receiving artificially administered nutrition and hydration. Or that you want to forgo all of those measures.
You could even say that you want to be given life-sustaining treatment and artificially administered nutrition and hydration for a particular timeframe, but then have it withheld after this “waiting period” has passed. It’s up to you.
Living wills give doctors immunity from lawsuits if they follow the documents’ recorded requests. A doctor can refuse to comply with your living will if they think your stipulations are medically inappropriate or they have an objection of conscience, but most state laws require a doctor who won’t comply with your living will to transfer you to a physician who will.
Health Care Proxy
A “health care proxy” is a person whom you appoint to make medical treatment decisions for you should you become unable to make them yourself. Creating a document that invests this person with this power (also known as the “durable power of attorney for health care”) prevents any debate as to who has the right to make medical decisions on your behalf when/if you become incapacitated.
Most health care proxy forms allow you to designate alternates for your health care proxy if your first pick is unable or unwilling to carry out this role. In my case, my wife is my primary health care proxy. If she can’t act as my proxy, then it goes to my parents. If my parents can’t serve as proxies, then the power falls to my in-laws.
You’ll want to have regular conversations with your health care proxy about what your wishes are. To really make sure that your health care proxy does what you’d like, you’ll want to give them a copy of your living will so they can see your requests spelled out.
What About DNRs?
A DNR, or a Do Not Resuscitate order, is a documented request that instructs health care providers not to perform CPR on you if you stop breathing or if your heart stops beating. If you want a DNR, you’ll need to ask your doctor to fill out a DNR order. You’ll also need to wear a bracelet saying you have a DNR so that paramedics don’t administer CPR on you.
How to Create a Living Will and Health Care Proxy Documents
Creating a living will and a health care proxy document is easy. So easy, in fact, that there’s no excuse for not having one.
You can contact an attorney who specializes in estate law to help you put together the necessary paperwork. While you’re at it, have them do the rest of your estate planning too.
Many states also have forms available for free for the public that create your living will and health care proxy. For example, here’s an advance directive form available at Oklahoma’s Department of Human Services. This is what my and Kate’s advance directive looks like. Just Google the state you live in plus “advance directive form,” and you’ll find the correct document.
To make it official, you’ll need to fill it out and sign it in front of two witnesses. The witnesses must be 18 years or older, not related to you by blood or marriage, and don’t stand to inherit anything from you if you die. The witnesses must sign the advance directive.
While you don’t need your advance directive notarized in most states, it doesn’t hurt to do so. The notary is there to verify that your advance directive was properly witnessed.
Once you fill out and sign your advance directive, you’ll want to print off copies for your personal and family’s records, as well as send one to your doctor and lawyer.
An advance directive may be revoked by you, either entirely or as to any part, at any time and in any manner, regardless of your physical condition (though you must still be mentally competent). The revocation becomes effective when you (or a person who witnessed the revocation) notify your attending physician or other immediate health care provider of it.
You can also change your advance directive at any time while you’re still competent and able to communicate. Just fill out a new form, sign it in front of two legal witnesses, and have the witnesses sign it. In most states, your most recent advance directive is the one that will take effect.
Advance Directives: The Beginning of a Lifelong Conversation
An advance directive isn’t just a one and done thing. It’s just the beginning of a long conversation that you should be having with your loved ones and doctors. Talking to those who will possibly be involved in your end-of-life decisions is the most important thing you can do. Allison Hennigan, a neurologist in Texas I talked to about this subject, told me she and her husband sit down regularly to see where both of them are on the issue of end-of-life decisions. Your ideas about these weighty choices will likely change during different times in your life. So it’s good to revisit the conversation with loved ones and doctors now and again.
Deciding How to Die: Factors to Consider
End-of-life decisions are fraught with moral, ethical, and religious considerations. It’s also a highly personal choice. How do you decide how you want to live and die before you’re in a position to have to make that choice?
Again, we’re not talking about Dr. Kevorkian-style, active, assisted suicide here. The situation that advance directives cover is when an individual is only maintaining life because he or she is receiving life-sustaining treatment — like medications or being connected to a ventilator — and artificially administered nutrition and hydration. But for this outside assistance, the person would naturally die.
When I was working on my advance directive, I reached out to several doctors as well as a hospice nurse to get their take. Almost all of them said if they found themselves with a terminal disease, irreversible condition, or an end-stage condition, they would want to withhold all aggressive medical treatment, including artificial nutrition and hydration. The only exception was one doctor who said she stipulated that her family wait one month before pulling the plug, just in case she made a surprise recovery and emerged from her unconscious state.
When I asked these medical professional why they all said they’d refuse all aggressive medical interventions to keep them alive, the responses were pretty much the same across the board, and came down to three factors: economics, your comfort during the last few months of your life, and the emotional well-being of your family.
First, they talked about the economics of keeping someone on life support. They all marveled at how modern medicine can keep people alive for months or years who’d otherwise be dead. But it’s expensive to do so. Really expensive. And the studies indicate that there’s not much ROI on that investment in terms of improving the patient’s quality of life. Sure, people can eke out a few more months of life while hooked up to a bunch of tubes and wires, but when you’re in a vegetative state, that’s unlikely to mean much to you. While you may not care about how much your life support is costing the healthcare system as a whole, you may be concerned about what it will do to your family’s insurance premium.
The more important factor in their desire to forgo life-sustaining interventions, however, was just being able to die naturally, comfortably, and surrounded by those they love. Justin Shurts, a doctor who specializes in critical care and works in the ICU, has seen firsthand what it’s like to be on life support. And it’s not a pretty picture.
Take feeding tubes and artificial hydration. In his opinion, these measures should only be used in a few scenarios, like if someone had a stroke and was able to communicate and function in some meaningful ways, but the stroke affected their ability to swallow to such a degree that it would be potentially dangerous (e.g., aspiration into the lungs). With these folks, the feeding tube and artificial hydration are a temporary remedy until the ability to swallow comes back.
But for someone who is unresponsive and needs feeding and hydration tubes indefinitely, things can get unpleasant. The stomach can stop absorbing nutrition, leading to possible obstruction and regurgitation. There’s also a risk of infections caused by feeding tubes.
In her book, The Final Act of Living, hospice nurse Barbara Karnes talks about some of the risks of artificial hydration in unconscious individuals. For example, the body can be so overloaded with fluid that it starts to leak (gross), and electrolyte imbalances can occur that can make the patient feel uncomfortable.
But isn’t it uncomfortable for a dying person to go without food and water? We certainly imagine so, based on our lived experience. But these sensations are experienced differently as you approach death. According to Barbara, part of the natural dying process is a decline in hunger and the desire for water. You know someone is getting close to dying when they no longer want food or water when you offer it to them. As Barbara puts it, dehydration is “the normal way that we die.” During the dying process, dehydration causes a spike in calcium levels, which acts as a natural sedative. We close our eyes, go to sleep, and don’t wake up. When we’re connected to feeding and hydration tubes, we override that natural process.
A final factor that the doctors brought up about making their living will decisions was the emotional stress that being on life support for extended periods of time can inflict on a family. Justin says that these anguished bedside vigils – an open-ended grief that can’t begin to heal – are one of the hardest things to see with his line of work, and that he wouldn’t want his family to go through that.
The opinions of the medical professionals I consulted are hardly anomalous; more than 80% of doctors surveyed do not wish to have aggressive life-prolonging treatment at the end of their lives either.
But no matter what doctors think is best for themselves (which they ironically don’t often apply to their patients) end-of-life treatment is a personal choice that each man needs to make for himself. Talk to your family members and your doctor about it. I also recommend reading The Final Act of Living by Barbara Karnes. It helped me out a lot when making my own living will decisions.
Whether you want life-prolonging treatments or not, make sure you make your wishes known with an advance directive so you can continue to have a voice — even when you can’t speak.