The following are the experiences and viewpoints of Masako Mayahara, a nurse practitioner whose thoughts were reported by US News:
“No one believes me.”
As a qualified hospice and palliative nurse, I have heard patients express this sentiment numerous times. I have been fighting to end pain at the end of life for the last 20 years, and witnessed many providers struggling to control the pain suffered by dementia patients.
As we recently marked National Alzheimer’s Disease Awareness Month, it is critical to note that in the eyes of many, patients lose credibility the moment they receive a diagnosis of dementia. When dementia patients in nursing homes scream in pain, their caretakers frequently assume they are “confused” or “agitated” and sedate them with antipsychotics.
Providers have known undertreatment of pain has been a problem in nursing homes for a long time. So why do people frequently adopt this strategy instead of pain medication?
One of the major barriers to treating pain effectively is rooted in providers’ fear of killing their patients. This includes both family and friend carers. The majority of pain medication errors made by nonprofessional hospice caregivers, according to a 2014 study I performed, involved delivering less than the prescribed dose, making it difficult for patients to get maximum pain management.
Despite the regular use of powerful opioids like morphine and fentanyl to manage pain, drug diversion is uncommon in hospice. According to a report published in 2020, there were 7.3 confirmed instances per 1,000 patients within the prior 90 days.
Obviously, accidentally killing a patient is the worst dread of a caregiver. A Tennessee nurse who injected the wrong drug into a 75-year-old patient was convicted guilty of negligent murder earlier this year. Incidents like this may enhance nurses’ apprehensions over the use of potent drugs to alleviate pain, particularly in patients with dementia who are unable to communicate their discomfort.
However, if pain is left untreated when it is mild, it can return as ferocious as a wildfire and be far more difficult to manage. For official and informal caregivers to promote adherence to prescription pain medications – and to prevent anxieties and potential errors – ongoing education is crucial.
There are roughly 5.8 million persons with Alzheimer’s disease and related dementias in the United States, and this number is projected to rise to approximately 14 million by 2060.
The Alzheimer’s Association estimates that more than 11 million Americans – often family members or friends – provide unpaid care for people with Alzheimer’s or other dementias. In 2021, Alzheimer’s and other dementia caregivers gave an anticipated 16 billion hours of unpaid care worth roughly $272 billion.
At age 78, my mother was diagnosed with dementia and had been complaining to her doctor about knee pain. My father was skeptical because she frequently forgets what she says.
She awoke one night in excruciating pain and yelled at my father, “If you don’t take me to the hospital, I’ll call an ambulance!” She was taken to the emergency department by my father. A doctor discovered a severe knee infection and operated on her. She was hospitalized for two weeks, followed by two months of skilled nursing facility rehabilitation.
As a patient’s dementia worsens and they approach death, many families enroll their loved ones in hospice care. Although this kind of care can provide excellent pain and symptom control, family caregivers are frequently still responsible for delivering the majority of direct care, and the vast majority have never received professional training in pain management.
Pain is a frequent comorbidity of dementia, and it is connected with sadness and hostility. However, it is also challenging to treat pain in patients with dementia because it is subjective and requires verbal or nonverbal signs to determine if a patient is suffering. And since many dementia patients at the end of life are unable to self-report pain due to advanced disease, their suffering is frequently unrecognized and neglected.
This can have harmful effects not only on patients, but also on carers. A failed pain management experience towards the end of a loved one’s life can have severe physical and emotional impacts on family caregivers, who may question whether they could have done more to aid their loved one and continue to replay the event long after the patient’s death.
Providers and family caregivers alike must understand how to measure pain accurately in order to effectively treat it. There are various assessment methods and pain scales, but family caregivers may not be trained to use them.
Digital technology, such as an app I’ve built and am currently testing, can provide creative ways for hospice patients and caregivers to convey a patient’s discomfort to hospice nurses and for nurses to remotely monitor patient pain.
Over the past two decades, I have advocated for the safe use of opioids in hospice care. Despite signs of progress, it appears that the pendulum has swung back on pain management, particularly in light of the opioid crisis, and voiceless patients such as those with dementia are frequently ignored. We can hear and assist them if we are equipped with the proper instruments and training.
