In the fall, the Institute of Medicine (IOM) released Dying in America, a major consensus report on improving the quality and availability of services for people nearing the end of their lives (bit.ly/IOM-Dyinghttp://bit.ly/IOM-Dying). The report listed a dozen proposed core components of quality end-of-life care, including:
- Frequent assessment of the patient's physical, emotional, social, and spiritual well-being.
- Management of emotional distress.
- Counseling of patient and family.
- Attention to the patient's social and cultural context and social needs.
- Attention to the patient's spiritual and religious needs.
These items, and many of the other elements of quality care proposed by the IOM, have one thing in common: they require communication with the patient—an ability that is seriously hampered by the hearing impairments that affect at least one of every three people age 65 and over.
Good hearing healthcare is essential for people facing the end of life, and yet it often goes overlooked by care providers and families focused on the many other medical, financial, social, legal, and additional concerns that come up when someone is dying.
“Advance planning, management of emotional distress, counseling the patient and caregivers, attention to psychological and social needs, personalized revision of care plans—all of this involves hearing,” said Barbara E. Weinstein, PhD, professor of audiology and founding executive officer of Health Sciences Doctoral Programs at the City University of New York Graduate Center.
“Hearing and communication are so critical at the end of life because at this stage, what people are left with is the need to communicate with family, physicians, and other caregivers. Doctors are so concerned with patient-centered care, but they often have not been educated to appreciate the role that better hearing can play in that care.”
PROVIDING HEARING DEVICES
With about 85 percent of 300-plus bed hospitals possessing some type of palliative care program, audiologists should offer in-service education about hearing healthcare at the end of life to the palliative care physicians in their local hospitals, Dr. Weinstein said.
In many cases, the use of a personal sound amplifier such as a pocket talker can make it much simpler for the person with a hearing impairment and the physician to hear and be understood, dignifying the experience of care at the end of life, Dr. Weinstein said. These devices can be invaluable when family members are facing profound end-of-life care decisions, and the patient does not have or can no longer tolerate hearing aids.
“A personal sound amplifier can make it easier to communicate, as the volume of the signal is increased relative to the noise, reducing some of the cognitive stress on the patient,” Dr. Weinstein said.
“Even if a patient does not have his or her own device, it is audiologists’ professional responsibility to expand physicians’ knowledge base and provide them the opportunity to experience the added value attending use of a portable sound amplifier such as a pocket talker.
“Were this to occur, it is likely that palliative care units would use these devices on a more regular basis, thereby removing one of the many barriers to accessing quality care.
“Audiologists should also make pocket talkers available for rental or purchase during patient and family visits, as that would help facilitate participation in end-of-life care decisions.”
Diles Hearing Centers in Athens, OH, probably sees at least five people every week who are in hospice care or facing a life-threatening illness, said practice owner Bethany Gonczy, AuD. Frequently, these patients are parents brought in by their adult children.
“The parents will be saying, ‘I don't want to spend money on a hearing aid when I don't know how much longer I'll be around,’ and their kids are saying, ‘But this is when I want to talk to you the most!’ At that time in your life, perhaps more than any, it's important to have those connections with your family.”
Diles Hearing Centers does not sell hearing aids to patients who are in hospice care. Instead, about four years ago, the practice began providing free hearing aids to this patient population. Diles Hearing Centers started this policy under previous owner Diane McVey, MA, following the lead of California-based audiologist Bill Diles Jr., son of the Ohio practice's founder.
“I had a friend who was a nurse involved with our local hospice, and we originally donated a pocket talker to the hospice program,” Ms. McVey said.
“But for some people, I knew that wasn't quite adequate. You can use those to talk to someone directly, but it isn't something that allows people to get overall better hearing for things like music therapy and other experiences that can really enhance life during this time.”
Ms. McVey, who recently retired, found willing sources of donated hearing aids among the practice's existing patients, she said.
“When someone changed to new devices, or a family member with hearing aids passed away, people felt bad about having these really good hearing aids not being utilized.”
Connecting with a local visiting nurses’ association, the practice has been more than able to meet its demand for free hearing aids for people nearing the end of their lives.
The Diles approach isn't common, Dr. Gonczy said.
“I don't know of any other practice in the area that does this, and I don't think there are many in the country. But it wouldn't be hard for any other audiology practice to start up something like this.”
COMFORT AND FLEXIBILITY
The provision of hearing healthcare for hospice patients comes with certain considerations, both in terms of the type of equipment used and the testing done, Dr. Gonczy said.
First, there's the issue of home visits. Many practices do not advertise, nor do they offer, home visits in general, but when it comes to end-of-life patients, that policy may not be quite so strict.
“When there's a situation where it's difficult for the patient to get around, a flexible audiology office is important,” Dr. Gonczy said. “I always keep a portable audiometer with me, since you never know when you'll need to update a reading at a hospice bed.”
If a patient has dementia, conducting a hearing assessment becomes more complex.
“I do a lot more watching of facial expressions,” Dr. Gonczy said. “A lot of times, the person will look at me like, ‘What was that?’ but they won't push the button because they've forgotten they're supposed to.”
When it comes to choosing a hearing device for patients at the end of life, comfort is key.
“We want them to be able to communicate with their family and be comfortable,” Dr. Gonczy said. “They don't necessarily need all the bells and whistles and fancy features and Bluetooth accessories.
“They need something that's simple for them to use and for their family to help them with; toward the end of life, dexterity is almost always a problem, so you want a device that they can get hold of and use easily.”
For patients who have more resources and fit candidacy requirements, Dr. Gonczy has used the Lyric hearing aid, which is placed fully within the ear canal but is expensive.
“Because it stays in for about two months and you don't have to change batteries or worry about not hearing something like a smoke alarm when you're asleep, it can be particularly attractive to someone at the end of life,” she said.
The counseling element of hearing healthcare is also different when working with people in hospice care, Dr. Gonczy said.
“It's very important to have a caregiver—the spouse or adult child or whomever that may be—there during your conversation so that you can make sure the caregiver understands how to use the hearing aid as well.
“You still have the conversation directly with the patient, but every time you do a key step, make sure that the caregiver is observing and sees how you've done it. When you go through your client checklist about things like checking batteries, making sure not to wear the aids in the shower, and knowing right from left, make sure the caregiver is listening as well.”
Post-fitting visits may also need to be on a somewhat more frequent basis than they do for a typical patient.
“I normally do a two-week checkup and then recheck about every three months, but, at the end of life, when even a few days of discomfort or confusion is significant, I will do a little more frequent follow-up,” Dr. Gonczy said.
The effect of improved hearing on hospice patients’ quality of life can be striking. Dr. Weinstein said she recently spoke with a colleague whose elderly relative had been in hospice care.
“My colleague had to repeatedly explain to caregivers, medical staff, and family that her relative couldn't respond to their questions or directions if she wasn't using her hearing aids,” Dr. Weinstein said. “She showed remarkable improvement in her usually sharp cognitive functioning when the hearing aids were placed in her ears.
“Audiologists have an opportunity to help contribute to the delivery of optimal and effective care. Even if it's just writing up a blurb on hearing impairment, communication strategies, and patient-centered services and delivering it to your local hospital, somehow we have to get this message out to palliative care programs that at the heart of patient-centered care is the ability to hear and be understood.”