Mrs. Jones came to her hearing-test appointment with her daughter-in-law. She looked more than her 84 years, arriving in a wheelchair with an oxygen tank strapped to the back. She was quiet during most of the intake interview and cooperative during testing. But when the topic of hearing aids was broached, Mrs. Jones looked the audiologist directly in the eyes for the first time, saying in a weakened voice: “I don’t think all that will be necessary. I doubt I’ll be on this earth that much longer. I should’ve gone before Henry those 20 years ago.”
The audiologist was surprised at her words and not fully certain how to respond. After a moment, he said in a reassuring tone: “I’m sure you’ll feel better once we get you hearing again.” With a sign of resignation, Mrs. Jones looked down at her hands resting on her lap blanket, as the audiologist continued to outline a treatment plan for her hearing loss.
There are many cultural taboos in life, both real and perceived. Certain topics have been ingrained within us not to broach. Topping the list are sex, politics, and religion. In an audiology practice, the taboos are often (tongue in cheek) said to be politics, religion, and battery life. But possibly one of the greatest taboos in our culture is the discussion of death.
For many, our discomfort with the dead and dying creates an avoidance of talking about, or possibly even thinking about, death. As Hess (2020) so succinctly put it, “American society is a death-denying culture.” Or, as Woody Allen said, “I have nothing against death. I just don’t want to be there when it happens.”
Yet, death is part of the roller-coaster pattern that makes up the very existence of our being. Death is inevitable in all things, from animated life forms to the more inanimate celestial bodies of planets and stars. In some ways, it seems odd that something so natural should be so difficult to confront. But such is the oddity of self-contemplation and interpersonal interaction.
Within clinical practice, however, we must recognize that not all patients are reluctant to broach this topic. Moreover, many older patients associate issues of mortality and death with, as one patient put it: “Getting my ears fixed.” Accordingly, they are often eager to discuss death with their audiologists.
We need to be ready to heighten our vigilance to mortality issues that patients have and engage supportively. Contrary to the expression “What you don’t talk about can’t hurt you,” the “elephant in the room,” may become an impediment to patients’ adherence to our recommendations.
During her early research on death and dying, Elisabeth Kübler-Ross (1970) was initially blocked from interviewing dying patients because their attending physicians assumed that such conversations would be too emotionally disruptive. However, she reported that all but one of the many patients she interviewed were relieved and pleased to be able to have conversations about their impending deaths.
Kübler-Ross’s findings provide audiologists with a roadmap of sorts. When we are open to engaging in a dialogue with patients about their aging and inevitable death, or the dying or death of a loved one, we may similarly find the conversation is appreciated. Furthermore, we may find we also benefit from such conversations.
The Experience of Impending Death
The interviews by Kübler-Ross led to her groundbreaking book, On Death and Dying. She described how individuals talk about dying and outlined that those diagnosed with a terminal illness go through a series of emotional stages (see TABLE 1). Kübler-Ross (1970) emphasized that these stages were meant to be a loose framework, not an ordinal ladder for grieving. Her goal was simply to begin a conversation about a taboo topic.
A thought thatcircumstancesor diagnoses cannot be true
A questioning ofwhy this would be happening to me
Attempting topostpone death with variousbehaviors
A resignation to impending death
A final rest before continuing forward
As Berger (2011) noted, the grieving process is neither linear nor generic. Dealing with loss occurs over time, with considerable variability and creativity.
One facet of this creativity is the emotional benefit of impending death. For example, after a patient we will call Mrs. Smith informed her audiologist that she had been diagnosed with terminal cancer, she gratefully accepted his heartfelt sympathy. So far, a predictable sequence.
However, to the audiologist’s astonishment, she then said: “Having cancer has kind of liberated me! I’m appreciating and staying close to my family and close friends more. I don’t care what people think of me anymore. Every second of my remaining time has become precious. Frankly, in some ways, I’m happier than I used to be.” She gave a wide smile.
Mrs. Smith gained a wisdom that often takes people a lifetime to learn.
Psychologist Laura Carstensen and her colleagues (2011) wondered why: “If we shift as we age toward appreciating everyday pleasures and relationships rather than toward achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it?” These clinicians found that our change in needs and desires has to do with perspective, our personal sense of how finite our time in this world is.
Several months after Mrs. Smith passed away, her widowed husband sent the following e-mail:
Our last months together were the most intimate in our marriage. Almost every night, we went out for ice cream, often driving over an hour to a new place. I remember one night when we were driving home and she was eating a sundae and it went flying as I made a sharp turn. Hot fudge, marshmallow, and melted ice cream got over everything—my face, all over my pants, the windows, the car seats.
Then an odd thing happened. When I stopped the car, we both started laughing. And then, covered with that gooey mess, we began to kiss—hard and passionate kissing—in a way that we hadn’t since we first met over 52 years ago.
I miss her terribly—always will—and sometimes it’s unbearable, but I cherish these memories more than I can tell you. For that, I feel incredibly lucky.”
As exemplified by this couple’s last months, when life’s fragility is primed, individuals’ motivations for quality of life often take on greater priority. Stated differently, the battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be (Gawande, 2014). This is where audiologists can play a huge role.
How Should We Respond?
Audiologists are not trained in how to respond to patients discussing death. Even without the training of a mental-health professional, we can recognize that the audiologist’s response to Mrs. Jones in the opening vignette was not helpful. The response given essentially invalidated the patient’s expressed feelings. Unfortunately, this scenario is not uncommon.
The death taboo can have a strong hold on any of us. The reassurance that the audiologist provided served to protect his own feelings and insecurities and failed the patient. Such reassurance essentially implied that her anxieties do not—or should not—exist, even though her words indicated otherwise (Clark and English, 2019). We can easily see why patients report that hearing-health professionals appear at times insensitive and indifferent (Glass and Elliot, 1992).
The analogous psychological term for person-centered or patient-centered care is the relational stance of appreciative ally. We position ourselves in alliance with patients and facilitate them to view us as being curious about their experiences and then we provide validation (White, 2007).
Appropriate responses by audiologists, when our patients allude to the inevitable ending of life or comment at length on the topic, are couched within an inquiry and/or validation of their underlying emotions. Mrs. Jones would have been better served if her audiologist had responded: “I imagine you miss your husband very much” or “A lot has changed for you over the years, likely not always as you would have wanted.” Statements such as these acknowledge what Mrs. Jones said and, when followed by a brief attentive silence, give a patient permission to expound on underlying feelings.
When considering the example of Mrs. Smith, we are not implying that we should congratulate a terminally ill patient for the benefits of impending death, as outlined above. However, a clear acknowledgment of her emotional state of acceptance is appropriate. For example: “Mrs. Smith, it is not often I get to hear such a positive outlook toward the end of someone’s life. I hope that I’m able to adopt such a view when my time comes. Thank you for sharing.”
In all cases, a response of compassion—“I’m so sorry to hear that, how are you doing?” is appropriate. However, when we ask how patients are doing, it is important to be open for their response. They may be grieving, such as in the Kübler-Ross model, liberated like Mrs. Smith or anywhere in between. Note that the ensuing dialogue rarely takes long and does not require proposed solutions or reassurance from us. We simply need to be present to a fellow human being, who may be in a stage of life never anticipated and who only wants their feelings and experiences to be accepted.
When Patients Do Not Initially Accept Our Help
Patient-centered ethics put health-care decisions in the hands of patients. Specifically, when terminally ill patients do not desire to pursue our recommendations, we may feel a disconnect between our perceived responsibility to improve a patient’s’ communication dynamics and the patient’s desire to be left alone.
We must be prepared to accept patients’ wishes, even when we perceive them to be erroneous (Clark, 2007). However, we may gently facilitate a motivational engagement with the patient, using techniques of motivational interviewing (Clark, 2012; Clark and English, 2019; Harvey, 2010, 2003). This could start with an acknowledgment of the approaching end of life, while suggesting a purpose for the remaining time, based on information gleaned from intake forms that might suggest withdrawal from family or family frustrations with communication, etc.
In the words of Gawande (2014): “The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror.”
An attempt at motivating Mrs. Jones in the opening vignette might proceed with: “Mrs. Jones, the decision on what we do here is totally in your hands. We certainly don’t know how much time you have left with your family. It could be a matter of months or possibly several years. We never know.”
Pause for a response and then suggest: “It’s difficult to find a purpose in life sometimes, especially later in life. But, during your remaining time, if it would be possible for you to contribute to making home life more pleasant for you and your family, would this be a good thing for all of you?”
We might even ask: “On a scale of 0 to 10, how important do you believe it would be for your family if we could all work together to make life easier at home through better communication?” (Clark and English, 2019).
When asked what made him decide to take the plunge and get hearing aids, one terminally ill patient responded: “Well, I told you about my grandchildren. They’re both adorable kids and they always sit on my lap and tell me stories about a play they’re in or about their favorite desserts, TV characters, or whatever. But what they tell me doesn’t matter that much anymore because most of it sounds like gibberish.” He shook his head.
The audiologist asked: “And what would it be like for you, if in the time that you have left, their gibberish would become clearer and more understandable?”
He didn’t respond with words, but he didn’t have to. His mind left the room for a moment, but it was clear that his grandchildren were sitting on his lap and that he understood absolutely every word they said (Harvey, 2020).
When we acknowledge and emotionally support patients’ experiences of grieving, this facilitates patients’ expressions of their own grief and reflections on that grief in a participant-observer fashion (Walter, 1991).
This is not to suggest that audiologists take on the role of a death-and-dying grief counselor. Rather, it is to suggest that how we respond can cause a patient to feel shut down and unheard or acknowledged and accepted. When we do the latter, we are in a better position to help patients take the reins of their own hearing-health care and to determine what is the best-considered option moving forward.
Personal-adjustment counseling is fully within our professional domain and audiologists must be comfortable providing this form of counseling to patients, including those with terminal illness, as a normal part of clinical exchanges.