Conversations After A Terminal Diagnosis: 4 Questions to Get Started

You’re going to have to have some discussions or conversations after a terminal diagnosis. No one wants to have them, but they’re necessary. I’ve mediated lots of tender talks where my clients and loved ones plan for a supported death experience. These discussions are sometimes difficult and often sad, but they don’t have to be uncomfortable.

How to Begin a Conversation About Death

When gathering with loved ones to discuss a serious illness or plans for an expected death, what’s the best way to get started?

Gather someplace quiet, if you can, and take a deep breath. Light a candle. Sometimes sitting at the kitchen table with a good meal can facilitate conversation. Some of my clients prefer sitting outside on the porch or in a quiet park.

We often begin with a prayer or poem.

Invite your inner circle of loved ones or anyone who might be a part of the care team. Keep a box of tissues nearby. Pour some tea. Or whiskey. I also recommend you include someone with experience such as an end-of-life doula or hospice nurse.

“This is shitty.”

A few years back, my beloved aunt faced her own end of life, and this is how she began our tender talk. She was right. It was shitty.

This is a common initial reaction to a terminal diagnosis. It sucks. And dwelling on said suckiness is okay, for as long as necessary, until that shock subsides.

Where do we go from there?

There is no one answer. Everyone is different and we must allow our loved ones the space to come to terms in their own way. But one thing is for certain: decisions and discussions are an important part of the process.

I’ve found that most of us avoid painful or uncomfortable conversations in general.

End-of-life is no different. These are sad affairs and can seem overwhelming to think about. Although we put so much planning into almost every aspect of our lives, many go into their last days winging it. They can’t imagine tackling the topic of their own mortality or the complex emotions that arise.

The person who is ill might be focused on loved ones rather than their circumstances and worried about what their family will do: emotionally, financially, or psychologically. The family is often overwhelmed with concern about their sick relative. They don’t want the end filled with suffering or pain.

Each person is trying hard not to upset the other.

This can go round and round.

That’s why talking through each issue is so important. (I’d argue that talking about death earlier in life, rather than waiting for old age or illness, is even better.)

Even though they are dreaded, these talks are often worse in our imagination than in reality.

My clients and their loved ones feel relief once they start talking. Tender talks about death may be slightly awkward, but as they go on, a sense of togetherness takes over. These are precious moments where loved ones come together to support and care for each other, despite apprehension ahead of time.

4 Gentle Questions To Get Started

These inquiries will help you open the lines of communication and turn uncomfortable conversations about death into opportunities for deeper love and understanding. Sometimes they even become celebrations of life. Give these questions some thought and use whatever feels right.

1. “What do you know or understand about the prognosis?”

Your loved one’s answer often tells us much about their understanding. How are they processing the news? Listen carefully. Take notes.

Their language and words indicate a level of comfort. It suggests how you should proceed.

Do they call it an “illness” or a “condition”?

Are they going to “fight” or “seek treatment”?

Do they refer to the end as “dying?” Or do they call it “passing away”?

Fight the urge to correct or sway them in any one direction. In the beginning, simply listen. Repeat what they’re saying to make sure you fully understand.

Let the silent moments breathe. Stay quiet. Nod in affirmation and show compassion with a soft touch.

Remember this is not about how you feel. Not right now.

2. “What are your fears?”

Encouraging your loved one to talk can help them feel better. Getting fears out in the open often takes away their power. At the same time, allowing someone to open up may reveal deeper anxieties. What a gift you’re giving your person to let them vent.

It might be good for you, too.  

To be afraid of dying is perfectly normal because no one knows for sure what awaits them. The unknown is sometimes frightening. We are wondering what will happen to our bodies, our souls, and our families after our death. This is normal.

As the end-of-life approaches, some folks fear missing out. For example, they might not want to miss a child’s milestone event or family gatherings. Others might fear physical pain or discomfort.

Provide support just by listening and validating that this is, in fact, a scary time. That kind of support has been shown to reduce anxiety.

Assure them that physical pain doesn’t have to be a reality at the end of life. Discuss options with the medical team. Nurses and doctors have the skills to help patients feel physically comfortable.

End-of-life professionals also know a great deal about what to expect at this stage. When we share that knowledge with dying people, their fears often subside.

Emotional or spiritual pain is a bit trickier. These symptoms can be managed with the right timing and approach.

You’ll get there.

Right now is for hand holding, listening, and letting your loved one know you understand them.

3. “What are your goals? What do you hope to do with your remaining time?”

Some people have wish lists, others call them “bucket lists.” Your loved one might not yet know the answer to this question, and that’s okay too. Some folks don’t have any goals. They are content to visit with friends and family at the end of their lives.

Again, everyone is different.  

Knowing what, if anything, they want to accomplish will determine what you can do to help them.

After all, this is how the end-of-life plan starts to come together.

4. “What trade-offs are you willing to make for added time?”

Dying individuals have a lot to think about. Every choice, it seems, comes with a set of consequences. Deciding between curative and comfort care, for instance.

Certainly, most people choose both for as long as they can.

When sick people make the difficult decision to decline treatment because they don’t want to spend their remaining days feeling worse, we must honor that choice. This isn’t always easy. Some might take the harder route because their loved one wants them to “fight.”

This is a heavy burden when they already carry so much.

The opposite is also true. If someone continues treatment, even when they feel miserable, a caregiver must support them through it.

That’s your role now.

To love and support. Ask gentle questions and accept the answers. These uncomfortable conversations about death certainly start as the toughest of talks. In the end, families understand one another better and can grow closer as a result.

Give it a try.

And every once in a while, it’s okay to say, “This is shitty.”

(If we can help by mediating a tender talk with you and your loved ones, contact Anitya Doula Services today.)