Imagine being near the end of your life and not being able to connect with your loved ones or hear your doctor’s recommendations for your care. You would probably feel lonely, frightened and perhaps depressed. But the unfortunate reality is that thousands of hospice patients experiencing hearing loss are in this exact situation every day.
Complex challenges of hospice care
The care of those in hospice presents a multitude of challenges for patients as well as their caregivers and family members. Amid pressing concerns such as medical care, pain management and legal and financial concerns, families often become overwhelmed and hearing loss is often at the bottom of the list of priorities. Hearing loss in hospice patients can often be mistaken for dementia or confusion, so the inattention can leave a patient feeling helpless, marginalized and lonely.
It’s a substantial problem – according to the Centers for Disease Control and Prevention 80 percent of Americans ages 85 and older have hearing loss to some degree. In addition, many cancer patients can lose hearing due to effects of chemotherapy or certain ototoxic pain medications. All in all, more than 24,000 out of every 100,000 patients in hospice have hearing loss.
Among many others, two important issues for end-of life care are pain management and social, cultural and religious needs and wants. These alone make communication the most essential element when it comes to hospice care. For example, a patient needs to have a complete understanding of the medical care being provided, including pain management and medications; not only for safety reasons but in order for him to feel a sense of control over his final stages of life. How are they feeling? What do they want? These questions, asked and understood, can go a long way toward improving the quality of care.
Being able to clearly hear and communicate wishes with caregivers and loved ones reduces the sense of loneliness and isolation that can often accompany a patient’s final days. It also gives a patient a sense of autonomy, which is important for emotional well-being. “Hospice care is based on [the patient’s] need and comfort,” said Deb Athans, a hospice social worker at Hospice of Cincinnati. “When you can’t communicate effectively, that is what is sacrificed.”
Keeping hospice patients connected
There are important steps to ensure that a hospice patient can continue to be a part of the conversation and to improve the quality of care. The first step, however, is establishing if there is a hearing loss in the first place. And for that, the family first needs to communicate with the staff in order to make the patient’s needs known. Once the presence of hearing loss is established, here are a few tips to help caregivers and family members help their loved ones:
- Be sure hearing aids are cleaned and in working order.
- Hearing aids should be used as much as possible.
- A hearing third party support person should be present to help with understanding and remembering any medical information presented.
- Caregivers should ask if the patient has heard and understood what was said, and to repeat it back.
- Get the patient’s attention prior to speaking.
- If possible, position yourself at eye level with the patient when speaking.
- Speak clearly, but do not shout.
- Keep a dry erase board or a pen and pad at the patient’s bedside to augment communications.
- Have the patient wear their glasses so they can see you speak.
- Reduce or eliminate distracting background noises before speaking.
- Remember that individuals in the end stages of life, especially those with hearing loss, can find certain sounds, such as a blaring television, irritating. Make sure to communicate with them regarding their wishes with respect to noise level.
Some hospice workers, in the absence of widespread use of hearing aids among patients in their care, have taken to carrying with them a personal amplifier and stereo headset to allow them to communicate more effectively with patients. And increasingly, hearing healthcare workers are becoming an integral part of hospice and palliative care teams.
Have those important last conversations
Hospice patients with hearing loss need not be lonely and isolated. From participating in decisions regarding their final days to allowing them to hear the voices of their family, attention to hearing care can enable those with hearing loss to be active participants in their own lives for as long as possible. More importantly, no longer will hearing loss cause things to be left unsaid or unspoken between family members and their loved ones. “It is so important to have those last conversations with family,” Athans said. And hopefully new movements toward understanding and working with hearing loss in hospice patients will lead to greater compassion in end-of-life care.