According to the nurse, he was angry.
According to the chaplain, he was angry.
According to the social worker, he was angry.
These three hospice colleagues separately visited the same patient and husband over the course of several days. While each met with the patient for different reasons—from the nurse determining the most appropriate medications for the patient’s needs to the social worker assisting with Medicare forms—they all experienced the wrath of a husband.
His wife had entered hospice care a few days before. Her cancer and Alzheimer’s had combined to wear her, and her husband, down. They dreaded the next midnight run to the emergency room or another lengthy stay in the hospital. Her oncologist had announced chemo or radiation therapies would no longer work. The neurologist, once upbeat about drug trials for her dementia, had exhausted all options as her disease slowly worsened. Many of the doctors and nurses they’d seen in recent weeks had mentioned hospice.
And so, his wife became a hospice patient.
And his anger, apparently, boiled over. As in, angere, from the ancient Latin word: to throttle, to torment. And torment the hospice staff he did.
He thought a nurse should stay at his home 24/7 and complained when learning it wouldn’t happen. He assumed all medication costs (including his wife’s dietary supplements and vitamins) were covered by Medicare benefits and shouted about government lies. He expected home health aides to bathe his wife every day and, if she needed turning in bed, the aide would do that whenever he deemed it necessary. He refused to provide key information for documents the social worker was required to complete because they were “invasive.” Within moments of the chaplain introducing herself, he criticized a former pastor from a different town and then demanded to know why God was punishing his wife and him. He wanted a home visit from the hospice physician on the next day, between ten in the morning and noon.
I have exaggerated his demands. With my fictional “details,” I am confident that even with total access to our hospice’s medical records, this patient and her caregiver husband could not be identified. Regardless of the (in)accuracy of my fake information, with every breath, with every response, with every explanation he interrupted, he spewed vitriol. His angry reactions frequently became angrier. Torment ruled.
It would be nice to claim that caregivers always listened attentively when a social worker explained DNR forms or asked about funeral arrangements. That patients would take their prescribed medications exactly when and how the nurse had instructed. That every family member was on the same page about why a father or grandmother was no longer seeking a “cure” for a disease, but preferred to be comfortable and to (hopefully) experience a “good death.”
But I think most who work in hospice understand why patients and caregivers can be so angry.
Sometimes, for reasons known or never known, because of upbringing or in spite of upbringing, certain people constantly seem angry. Nothing satisfies them.
Sometimes, for reasons easily understood (ineffective cancer treatments, surgeries that triggered more problems than they solved, siblings endlessly debating what’s-best-for-mom . . .), a new hospice patient will have an angry attitude and be living in an unsettled environment before the first staff from hospice arrives to explain the services and answer questions.
Anger is normal. Angry responses declare we’re alive and kicking; anger can mean refusal to give in or give up; anger warns that maybe we were treated unfairly and won’t let those past injustices happen again.
Anguish is normal, too. That word is also linked to Latin’s angere, but instead the torment is directed at self rather than another.
Often enough, I have witnessed a patient or caregiver’s anger eventually being replaced with new understanding, with an acceptance of realistic goals. No nurse, chaplain, home health aide, or social worker in hospice is perfect. Most of the staff serving a patient carries an abundance of their own frustrations . . . and their own anger or anguish. They are human too! But most staff I’ve known genuinely seeks to help; they want to give a patient and caregiver the best possible information and support.
But there are a few folks where anger is the first, only, and last response. The hurtful comments they unleash are as normal as breathing for them. Whether the caregiver is awful or angelic, the hospice nurse will enter a family’s home and do everything in his power to ensure the patient is as comfortable as possible. The chaplain will do everything she can to help, even if all she hears are a patient’s accusations about God’s cruelty. The home health aide will make sure the patient is bathed and teeth are brushed even if every single action is analyzed and criticized.
Every staff member wants a patient to (hopefully) have a “good death.” And every staff member knows that sometimes they are helping someone who has had nothing but a “bad life.”
All we can do is try.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
Image of actor Lee J. Cobb from Sidney Lumet’s 12 Angry Men (1957).by