How can healthcare workers help us plan for a good death?

Where would you choose to spend your last days? For me, I imagine myself lying comfortably in my own bed at home. I’d be able to reach out to hold my partner’s hands, smile at him and enjoy each other’s presence. I’d be surrounded by my loved ones and be immersed in laughter and absolute peace as I take my final breaths. But realistically speaking, I know that my choices are likely limited to a hospital ward, nursing home or hospice care.

Chances are, a good majority of us would spend our final days in a healthcare facility. As we near the end of our lives, we are likely to entrust the entirety of our care (what we eat, where we rest and the hobbies we engage in etc) to the healthcare system. But I fear relinquishing control over my last days to my doctors and nurses. I’m scared of taking awfully-tasting medications to prolong my life against my will. I’m scared of having my family ushered away in what might be my last moments.  This is because I know how easy it is for patients to not be seen as humans, but instead as paperwork to be filed. I fear that in my final days, doctors and nurses may dismiss my final wishes: on how I wish to die.

After attending a dialogue session on end-of-life care last year, I realised how little I knew about how to end my final days on my own terms. If I, who had been ready to enter the workforce as a healthcare worker three years ago, knew so little about end-of-life care, where does that leave my patients? Hence, I left the event wondering: how can healthcare workers help patients and their families plan for a good death?

At the event, a palliative care researcher had pointed me towards Being Mortal by Atul Gawande, emphasizing that it is the book to read on the topic. This article will draw on lessons from the dialogue session and Being Mortal to explore:

1. What is a good death?
2. Why is it difficult to have a good death?
3. What insights do healthcare workers have about death that an average person does not?
4. How can healthcare workers help patients plan for a good death?

What is a good death?

Being Mortal is an illuminating exploration of the modern-day experience of dying, end-of-life care and hospice care. Accompanied by a series of his personal reflections as a surgeon and son whose own father had been diagnosed with cancer, Gawande offers deep insights into what makes a good death.

In Being Mortal, Gawande reveals what truly matters to us at the end of life:

“Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay.”

Most importantly,

“They want to end their stories on their own terms.”

In the book, Gawande tells the story of Jack Block, a 74 year-old man who had a tumour growing in the spinal cord of his neck. His doctors told him that going for surgery had a 20 percent chance of making him a quadriplegic. Without it, the chance was 100 percent. Jack decided to go for the surgery. However, after the procedure, he started bleeding in his spinal cord. To save his life, the doctors needed to do another operation. This time, he would most likely remain a quadriplegic forever.

Susan wanted to make a decision based on her father’s idea of a good death. Should she proceed with the operation, knowing that her father may live severely debilitated? Or should she let him go in order to protect him from suffering from a reduced quality of life? If you were Jack’s doctor, how would you help Susan make her decision?

Susan Block needed no guidance. She simply asked one question: if they went ahead, would her father be able to eat chocolate ice cream and watch football on TV? The doctors answered yes. Susan said yes to the operation immediately.

The previous night, Susan had sat down with her father to have one of the most difficult conversations of her life. She said, “I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.” And to her surprise, Jack responded with, “If I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive.” More crucially, he added, “I’m willing to go through a lot of pain if I have a shot at that.”

Why is it difficult to have a good death?

It is difficult because healthcare staff are not equipped to start talking about death, much less prepare patients for them. It is important to note that it wasn’t Jack’s medical team who guided Susan through such a difficult decision. The conversation stopped at deciding whether Jack wanted to go for the initial surgery or not. Not about what to do when the surgery fails- when the family has to choose between life and death of a loved one.

How then did Susan know how to even talk to her father about his death? It turns out that she is a palliative care doctor who has had thousands of such difficult conversations before. Even then, her conversation with Jack had felt “awful” and “really uncomfortable”. But it was necessary. Otherwise, she would never have known what an acceptable quality of life meant to her father. Some would choose death over a lifetime of severe disability. Others would only opt for rehab only if financial circumstances allowed for it. As for her father, he was enthusiastic about rehab, so long as he’d be able to do the two things he loved.

We can’t all be Susan Blocks. But when we fail to prepare patients and their families for what might be the most difficult decisions in their lives, Gawande says we inflict both harm and suffering:

“…Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life;

So what about patients and their families who don’t know how to even start having such conversations?

What insights do healthcare workers have about death that average persons do not?

The responsibility to enable patients to shape the last chapters of their lives falls on doctors, nurses, medical social workers, therapists- everyone in the team. In Gawande’s resounding call to arms, he affirms:

“Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.”

Healthcare workers are no strangers to death and dying. Upon encountering their first deaths, some cry, some shut down. I felt empty and torn with guilt. Gawande had experienced recurring nightmares about his patients because he had felt like a failure. Paul Kalanithi, neurosurgeon and author of When Breathe Becomes Air, had expressed remorse at missing a chance help his patient end his life with dignity:

“I made mistakes. Rushing a patient to the OR to save enough brain that his heart beats but he can never speak, he eats through a tube and he is condemned to an existence he would never want…”

You might have seen different ideas about what a good death looks like. You might have even made advanced care plans for yourself and your loved ones. And even though you might feel a heavy lump in your throat whenever the topic of death comes up, or there is no denying two things. One, you have experience navigating death that others don’t. Two, your patients are counting on you. The moment a patient lands under your care, they press something sacred into your hands: their trust in you to ensure their well-being- right till the very end.

So here’s how to start having these tough but life-changing conversations.

How can healthcare workers help patients plan for a good death?

There is no one way to go about this process. There are, however, three rules you can follow. These rules can be used when you’re talking with your patients, or when you’re guiding families to have these conversations. According to Susan Block, these rules are:

1. Sit down and make time.
2. Your purpose is NOT to decide whether the patient wants treatment X or Y. Your purpose is to find out what matters the most to them given their current situation.
3. Listening is key. If you’re talking more than half the time, you’re talking too much.

Block also has a list of four simple, elegant questions that you can ask your patients.

1. What concerns do you have about what lies ahead?
2. What kind of trade-offs are you willing to make?
3. How would you want to spend your time if your health worsens?
4. Who do you want to make decisions for you if you can’t?

By asking these four questions, you are offering a profound gift to your patient. You are guiding them, step-by-step, towards a personal understanding of what their hopes are for the journey ahead. With this knowledge, you can then work with the patient, their families and the rest of the team in taking the next steps.

Some other tips also include:

• Instead of saying, “I’m sorry things turned out this way” (which can make you sound distanced and detached), say, “I wish things were different.”
• Instead of saying, “What do you want when you’re dying?”, say, “If time becomes short, what is most important to you?”

Start now.

“Cure sometimes, relieve often, comfort always.”- Edward Livingstone Trudeau

In healthcare, our job goes beyond fighting death and disease. Our job is also to provide comfort and relief. And one of the greatest gifts of comfort we can offer others is the gift to shape the final chapters of their lives. In this article, I shared three rules and four simple questions you can use to slowly ease into talking about the difficult topic of death. If you find it intimidating to have them with a patient, start by asking yourself or a loved one.

Thank you so much for reading.

I would like to thank Anastasiia Sapozhnikova, Gloriana Sojo, Jared Gordon, Rohen Sood, Alysia Harris, Natalie Toren, Riah Forbes, Matt Lerner and Hazirah Mohamad for looking at earlier versions of this piece. I appreciate your time and comments tremendously.