In an article titled “The Final Frontier: Heightening Our Vigilance to the Taboo of Discussing Death During Patient Encounters,” published in the March/April 2021 issue of Audiology Today, we urged audiologists to be ready to address mortality issues that patients may have and to engage supportively (Clark and Harvey, 2021). Here, in this article, we kick our recommendation up a notch.
We consider that it might even be appropriate and helpful to not only respond supportively when patients broach the topic of death, but sometimes even for audiologists to initiate discussions about death. This may include taboo questions, such as asking terminally ill patients when they predict they may die, why they may not want to die, and what they wish they could do differently during their remaining time.
Many audiologists may immediately deem these kinds of discussions as extremely inappropriate and well beyond ethical practice parameters. Indeed, we are not mental health therapists. Our scope of practice is to help patients cope with, and adjust to, hearing loss—certainly not to terminal illness. Moreover, it is our ethical responsibility to remain vigilant for such issues that may arise in clinical encounters that are beyond professional boundaries and to establish appropriate referral procedures.
But bear with us! We must also recognize that there are gray areas in our discussions with patients that may present a challenge to professional boundaries, rather than a breach of those boundaries (Clark and English, 2019). Admittedly, if done thoughtlessly, it is clearly inappropriate to ask these questions about dying, but, as we will illustrate, if done judiciously, those very questions may indeed prove to be quite supportive to patients and helpful for their audiological care.
Of course, appropriate timing and a respectful approach are everything. It is important to ask a patient for permission to discuss that taboo topic. We may use humor by assuring patients that there is no implied time commitment to when they may die. We might even reference the book, Tuesdays with Morrie (Albom, 1997). For example:
Fred, a terminally ill man with significant hearing loss, found the Tuesdays with Morrie memoir both validating and, to his surprise, even uplifting.
In answer to the question, “When might you die,” Fred predicted he would live two more years and quickly added: “But I will live them fully.”
When asked how he plans to do this, he recounted that, immediately after being diagnosed with cancer, he stopped procrastinating about getting hearing aids.
“I used to get depressed when I couldn’t hear well,” he recalled, “but now I appreciate more what I do hear and will hear for at least two years!”
For the young, the concept of wasting time may not seem so ominous, as illustrated by the Bob Dylan song “Don’t Think Twice, It’s All Right.” Throughout the song, Dylan muses about wasting time.
“I have all the time in the world,” some may think when younger.
Our time becomes more precious as we approach the limits of our mortality—when facing death—and, therefore, we realize it’s not okay to waste it.
Perhaps it is during this end-stage of life that the benefits of hearing aids are amplified (pun intended).
As Fred reported: “Now I want to hear my wife singing from across the house, even though she’s always out of tune, because who knows? It may be the last time!”
In addition to resulting in better communication, improved hearing may reduce the risk of dementia.
“It seems likely that better hearing and an improved SNR [signal-to-noise ratio] allows one to engage in mentally stimulating and challenging activities, which will generally have a positive impact on our brain, cognitive reserve, QOL [quality of life] and overall health” (Beck and Harvey, 2021).
Eliciting a Patient’s Absent but Implicit Values
Why should we risk making terminally ill patients even more distressed by introducing the seemingly uncomfortable topic of death? Frequently, it is the health-care professional, not the patient, who is uncomfortable. Most terminally ill patients welcome the opportunity to discuss their end-of-life experience (Kuhl, 2002).
The purpose of this line of inquiry is to elicit a patient’s absent but implicit values that may impact successful audiological treatment. These are a patient’s values that are unspoken, perhaps even unacknowledged, but that nonetheless shape their life; values that, until then, had been relatively dormant; values that had been absent from their life story but implicit in their influence. This is an important mouthful and warrants clarification. For example:
Barney was pressured by his family to attend dental school and join their dental practice. It consumed his life, but he was miserable. He joked that the advantage of his longstanding hearing loss was that it helped him ignore the “incessant babbling about teeth.” He had never heard of “ischemic heart disease” until he was diagnosed with it at the age of 70 and was given six months to live.
“I’m not ready to die,” he lamented.
“I know. And I’m so sorry. I can only imagine how you must feel,” his clinician said. “This may seem like a stupid, insensitive question, but may I ask you to elaborate why you’re not ready to die?”
“I have things I want to do,” came his instant response, as if he were waiting for someone to ask that question.
“Like what?” his clinician asked.
“I’ve always wanted to be a playwright,” he responded. “To write fun plays, maybe even comedies, for families to act out on special holidays. All family members would have their own script.”
“Wow. Would you help me to understand exactly why that’s important to you?”
Given a demonstrably interested listener and the opportunity to expand, Barney shared his experiences of observing people talking and laughing together, but never feeling like a full participant. He recalled feeling lost at the family dinner table, given that his hearing loss prevented him from understanding his family speaking over each other with food in their mouths, a familiar scenario.
Barney’s fervor to provide families with theatrical scripts reflected his absent but implicit value of strengthening interpersonal relationships, in his words, “to help people more than just with their teeth.”
He got tremendous gratification from witnessing families laugh as they acted out their dramatic roles. It was not that he was unaware of this value, but his dental career had predominated during what felt to be an eternity. Note that his heretofore dormant value became more explicit as that eternity became finite, when it therefore became important not to waste time.
His decision to purchase hearing aids became an obvious next step: a critical tool to engage with a world of people that would soon be taken away from him. He would often do a walk-through of a play with families, now being able to effortlessly understand all of their lines.
Guidelines for Audiologists
It is important to help patients explore the impact of hearing loss on their remaining time with their family, friends, and colleagues.
In reaction to this concept, a colleague shook his head and asked, “Why would a patient go through all the trouble and spend money on hearing aids to use for a limited time?”
A response would be an analogy to eating a good meal or drinking a favorite beverage. Often, the last bites or gulps taste better and are cherished more. Similarly, terminally ill patients can be helped to find the motivation and strength to make the sometime difficult decision to obtain hearing aids precisely because they are cherishing the last “gulps” of life.
One relevant factor, often not readily recognizable, is a patient’s absent but implicit narratives having to do with values. In Barney’s case, this had to do with family relationships.
How Can We Excavate These Narratives?
One may begin a discussion as follows: “As you know, I’m an audiologist, not a mental-health therapist, but would you feel comfortable with a personal question? In the brief time we have, would you give me a snapshot of how you feel about dying, including what effect it would have, if any, if I could help you hear better?”
Note that the audiologist conveys interest in the patient’s emotional experience while using the words “brief time we have” and “a snapshot” to keep the restricted amount of time in the foreground. With bounded open-ended questions, you can elicit a limited narrative of the patient’s emotional world without “opening up a can of worms” (Harvey, 2012).
Depending on how the conversation progresses, the audiologist may ask:
- How might being able to hear better help you cope with your terminal illness?
- Behaviorally, what exactly are you doing to hold on to what’s precious to you? How might that change if you could hear better?
- Would you be able to communicate more easily with various people in your life? Would you be able to understand the medical/hospice staff better? How would that affect what you’re feeling?
- What might it mean to a family member when learning that you have taken steps to hear better specifically at this time?
Consider the following patient encounters:
Patient: Nice to meet you, too. Do you happen to have a cure for my cancer?
Clinician: I wish I had a magic pill, but all I have are ways to help you hear better. How are you doing?
Patient: Not bad for a dying old lady.
Clinician: I don’t know what it’s like to be terminally ill. (Pause)
Patient: I take it day by day, but I’m not ready to leave quite yet.
Clinician: May I ask an odd question? Many “dying old ladies,” as you put it, would be on their way out, but that’s not you. Wow. May I ask why not?
Patient: I remember an old comic, where one character says that we will all die one day and another says that, on all our other days, we won’t.
Clinician: You want to remain fully alive until you’re not.
Clinician: How would “fully alive” include hearing better? I mean, what in your life do you value that you’d appreciate more if you could hear better? That, I could help you with.
Patient: I love eavesdropping on people, finding out what’s going on.
Mrs. Smith’s value had to do with feeling involved in group discussions, even ones in which she was not directly involved. Excavating that value paved the way for her to accept audiological care.
Patient: I don’t know exactly how much time I have left before my journey, but I don’t need to hear better. I’ve heard as much in my life as I need to, and I don’t want to hear any more. Thank you for your offer. I want hearing aids for my husband, though.
Clinician: I understand. Take care on your journey. It was a pleasure meeting you. And I’m happy to meet with your husband anytime he’s free.” (Gets up to shake her hand and leave.)
Patient: Hey, where are you going? I thought you wanted to help me?
Clinician: I can help you hear better, but you said it’s your husband who wants that help.
Patient: You doctors don’t listen, she said with an unconvincing scowl. I said, I want hearing aids for my husband. (pause) You look confused. For years, he’s been after me to get hearing aids as he’s tired of having to repeat himself all the time. He often gets angry and frustrated and, one time when he left the room, I caught him crying. He said he cut himself, but I know better. I want you to fit me with hearing aids as a gift to him, so in my remaining time with him and the rest of my family, they won’t have to keep repeating themselves. I want hearing aids for my husband. Are you listening now?”
Clinician: Yes I am. And it would be my pleasure.”
Mrs. Jones’s value had to do with being fitted with hearing aids, not for herself, but as a gift to her husband and family. Her actions endorse the importance of her family’s time with her.
In our earlier Audiology Today article (Clark and Harvey, 2021), we noted the important role audiologists have when responding to patients when they allude to the end of life. In this article, we focused on audiologists initiating end-of-life discussions.
The ensuing discussions are couched within the audiologist’s purview of helping patients bring forth those absent and implicit values that are affected by hearing loss and that may be adversely impacting recommended audiological treatment. How we respond can either cause patients to sense they are not heard or to feel they are acknowledged and accepted. The latter is critical in helping patients take a firm hold on their own hearing care and in facilitating forward momentum, even at the end-stage of their lives.
The discussion of impending death is one of those challenges for which we should prepare. When we keep the goal in mind of helping patients more successfully cope with, and adjust to, their hearing loss, while remaining attentive to issues that may merit referral, we are practicing audiology care to its fullest.