Invisible Suffering: Five Things You Need to Know About End-of-Life Decisions

A solo podcast from me + a guest post from Dr. Eleanor Tanno

This may sound strange, but I relish conversations about death. Why? Talking about dying is actually a conversation about living. Today, I’m thrilled to deliver two things to you:

• This week’s podcast is just you and me — a short ditty about shining a light on invisible suffering.

• A guest post by my friend Eleanor Tanno, MD, who specializes in end-of-life care. I hope it provides you comfort.

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Eleanor Tanno is both a primary care physician and a professional speaker and educator on the topic of end-of-life care. Her approach is compassionate, evidence-based, and patient-centered, which is tragically unusual these days.

In the current medical landscape, conversations about death are often had with intensive care doctors and hospitalists in the midst of a crisis. But Dr. Tanno and I believe we all need to start that discussion far earlier.

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Photo Credit: Wernher Krutein/Corbis. Copyright: Corbis.

Five Things Your Doctors Wish You Knew About End-of-Life Decisions

by Eleanor Tanno MD

When I talk with my patients about end-of-life care, I often share my own ideal death. I tell them that I have three wishes: to have lived a long, healthy, and full life; to die before my spouse (selfish, I know!); and to die peacefully in my sleep.

While we don’t have complete control over our destiny, we can be intentional about end-of-life care. By thinking ahead, we can, in fact, alter how we spend the last days, weeks, months, and even years of our lives.

The problem? Doctors don’t always have time to discuss end-of-life decisions. Patients don’t relish conversations about death. Families often wait until the bitter end to face the subject. What’s more, our healthcare system is geared more toward preventing death at all costs than it is toward enhancing life.

Sigh.

So, as a physician who specializes in these tough conversations — and as someone who has witnessed the suffering as a result of not having them — I’d like to help you optimize your care and your quality of life.

What You Need to Know

1. Your Medical Power Of Attorney is Your MVP

Your Medical Power of Attorney (POA) is someone you select to make medical decisions for you in the event you are too critically ill to make your own decisions. (Note that as long as you are coherent and able, your physicians will always ask you first about your preferences.)

Your POA serves as your voice. Their instructions guide physicians on the kind of care you receive at the end of life. They can make decisions that prolong the dying process, allow for more invasive procedures, or conversely allow for a less medicalized death.

For most people, your POA is a spouse or an adult child. It can also be a friend, a more distant relative, or even a group of people to make decisions, equally and together.

You legally name your POA in a written Advance Directive. In some states, the POA is designated in a stand-alone document. If you have not named a medical POA, the role defaults to your spouse in most states. If you do not have a spouse, the role is equally divided among any adult children. If it’s not apparent who your POA should be, a court may need to decide or appoint a guardian who will make medical decisions for you. You can read about what to consider to avoid common pitfalls in choosing a POA here.

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2. Your Medical Wishes are About Values, Not Specific Medical Treatments

One of the hardest parts about discussing end-of-life wishes with loved ones is the vast unknown. Not even your doctors can predict the exact context in which your wishes might be applied. Many of my patients say to me, or to their loved ones, “In the event of a terminal illness, I do not want heroic measures.” But, when the rubber meets the road, this statement isn’t always helpful.

Families end up asking themselves: What did our loved one mean when they said “heroic”? How do we define “terminal”? Is it a catastrophic stroke, end-stage cancer, advanced dementia, or an aggressive infection? Each of these scenarios calls for decisions about wildly different possible medical treatments with vastly different potential outcomes.

It is especially challenging to decide your medical wishes if you’ve never seen, for example, a ventilator, a feeding tube, or the possible outcomes after a complicated surgery. In other words: How can you decide what’s for dinner if you don’t even know what’s on the menu? The answer is: You can’t.

So instead of planning what medical treatments you want and don’t want, I suggest that you work on defining your values. One way to start is to take an end-of-life “Litmus Test.”

The Litmus Test is where you think about which basic activities or functions still represent a quality of life for you. In other words, you say to yourself, “My life would be worth living as long as I could still ____.” You fill in the blank with whatever basic cognitive, emotional, behavioral, or physical faculties would continue to provide meaning for your life.

For example, you might say, My life would be worth living as long as I could still …

• Walk the dog

• Read the newspaper

• Meet my friends for a round of golf or a cup of coffee

• Listen to Beethoven

• Live independently

• Recognize my children and grandchildren

With these values in mind, your POA can then subject your likely medical outcomes to your personal Litmus test.

Let me give you an example. Imagine a scenario where your doctors offer you a feeding tube for your advanced dementia because you’ve stopped eating in the last weeks of your life. Artificial feeding might prolong your life — for days or weeks, we don’t know. But what if your goal was always to be able to read the newspaper, and you’re no longer able to do that due to your dementia. A feeding tube would not fix your ability to read the newspaper. Therefore, your POA can justifiably decide to forgo such an intervention because it would be inconsistent with your goals. In other words, the feeding tube fails your Litmus Test.

Alternatively, if you have a stroke and the doctors think an invasive surgery will likely reverse the brain injury and allow you to read your newspaper, your POA may opt for that. Having a good Litmus Test allows your POA to feel comfortable and confident in the medical decisions they make for you.

Using values is far more useful than checking yes or no to specific medical interventions in a vacuum. Not only does it help families make hard decisions, it also preserves the dignity of the patient.

3. Let Your POA Hear It From You

I commonly hear my patients say, "My family knows what I want." But I can tell you from my experience of taking care of critically ill people, all too often your POA has no idea about your medical wishes. They also can be wracked with guilt over not making the kinds of decisions you would want.

Not only is it important to talk to your POA about your medical wishes, you should also discuss those wishes with anyone you expect to be included in your end-of-life care. For example, if you have multiple children, but you have named only one of them as a POA, you should discuss your wishes with all of them so that there is no conflict among them. You do not want them to hold resentments later because one child believed the care you would have wanted was different from the care you were given.

4. Put It In Writing

An Advance Directive is a legal document that records your medical wishes in the event you are not able to make your own medical decisions. In many states, your POA is named in this document.

Making an Advance Directive can seem overwhelming at first. However, once you learn some of the common terminologies and become familiar with your required state forms (AARP has a list by state), it is pretty straightforward. The most difficult parts are the thought you put into your medical wishes (your Litmus Test) and the conversations you have with your POA and loved ones.

If you need help, your primary care physician or estate attorney can direct you to the appropriate forms. Here is my basic step-by-step guide to creating your Advance Directive.

5. Know That You Can Always Update Your Advance Directive & POA

To update your wishes, you just need the new copy to be signed and notarized per your state's regulations and to make sure that your POA(s) get an updated copy. If two copies appear later, your healthcare team will honor the most recent version.

If you accomplish this short list, your end-of-life wishes are much more likely to be honored. And in the process, you will also help frame your goals for life — something that is healthy at any age.

As Dr. McBride says, talking about dying invites us to consider the invisible parts of the human condition: the pain and pleasure of being alive. It’s never too early to define our values and to live them out with intention, each day.

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This week’s podcast is a short (14-min) solo podcast episode about the harder-to-measure yet no-less-important elements of health. From grief to anxiety, it turns out that not every element of health is measurable in a blood test.

Today it’s just you and me.

As always, I welcome your reactions and feedback.

Does Invisible Suffering "Count" in the Doctor's Office?

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