At this skilled nursing facility, the staff was skilled but not compassionate

SNF is the acronym we use in health care for “skilled nursing facility.” Fittingly, it is pronounced “sniff,” a fact that became fitting as I watched my father die in one this past week.

My parents, 86 and 89, bought into a beautiful retirement community 10 years ago. Included was a lovely apartment, full-service dining facility, gym and health center, the last of which included an SNF.

In the past three months, my dad spent several short stays there. Throughout and in between them, I talked to my mother and sister, who lived nearby. With each conversation, I felt the pit in my stomach growing — my dad was dying.

You see, I am a hospice and palliative care nurse practitioner. It is my business to know when someone is at the end of their life. After falling and fracturing his hip, it was clear my dad was nearing that end.

My dad hated the SNF. Not for the obvious reasons. After all, the physical environment was beautiful: hotel-like rooms with widescreen TVs and a dining room with waitstaff. It was the emotional environment that was lacking.

As heartbreaking as it was to know my dad was dying, it was even more heartbreaking to walk in and see him wild-eyed and scared, lying on a pillow mattress on the floor. “They are killing me,” were the first words out of his mouth as he thrashed on the makeshift bed.

I like to think I am gifted at calming my patients. Lower your voice. Speak softly and gently. Each of these tactics came to mind as I watched my sweet father cry out in pain when moved and spew words I did not know he knew. I was only able to calm him for a short period of time before I was part of a “conspiracy” with my mother and sisters. After a few hours, I was exhausted.

Taking care of the elderly today is tricky business. Most of the medications traditionally used in hospice and palliative care to help with suffering are also the biggest culprits of delirium and confusion in the aged. With increased delirium comes the increased risk of falls.

My dad was the poster child for someone who should not receive any “mind-altering” meds. Multiple anesthesias in the past three months with some signs of short-term memory loss had put him in the high-risk category for delirium. So he didn’t receive those meds. Unfortunately, the agitation occurred anyway.

After the hip fracture, the orthopedic surgeon assured my mother that my father would not have any pain and ordered Tylenol. When he was transferred to the SNF, the agitation and delirium escalated. As I stood outside his room, I could hear him crying as the staff cleaned him. My mother assured me that he wasn’t in pain — just afraid. She was clearly trying to convince herself of the same thing.

A key part of palliative care is establishing goals. What is most important to the person you are caring for? How can you, their health care provider, help them achieve those goals? We call these “goals of care,” and I assumed these had been established with my dad at the SNF. Unfortunately, they had not.

It was at a family meeting that I saw the beautiful facade my parents had bought into crumble. My mother would have to provide private caregivers, as the SNF surely could not handle a patient like my dad (the first night there, my 86-year-old mother had slept on the floor after his caregiver walked out). Medication changes were reluctantly discussed — but my mother would have to sign for any psychotropic or narcotic meds. Clearly, the SNF did not want to be liable.

When I asked about my dad’s code status (e.g., does he want to be resuscitated?), the SNF produced a form with my mother’s signature that stated “full code.” In other words, if he stopped breathing, they would perform CPR. In front of everyone, in a small voice, my mother said, “I thought he would get better, so I signed.” I demanded to know who had reviewed it; no one seemed to know. My head was spinning with well-known stats: people admitted to the ER with no pulse or respirations are very unlikely to walk out alive, and an 89-year-old is significantly less likely. We changed his code to “do not resuscitate.”

As the meeting was wrapping up, my mother again said she could not financially sustain 24-hour caregivers and asked how could the SNF help. After all, part of the reason she and my dad had moved to this particular community was for the SNF. Surely they could do something.

The SNF said that my dad had “behavior” issues and may need to go to the geriatric psych facility. They were discarding him. My sweet, sweet father who had once volunteered to pass juice at this facility was being kicked out.

“I’m caught,” my mother said to me after the meeting. “I bought into to this.” Her sense of helplessness was palpable.

I wish I could say I swooped in and saved the day, but I didn’t. Actually, my dad did. His last day in the SNF he refused to eat or drink and clamped his mouth shut when given pills. Soon he fell into a deep sleep with intermittent absences of breathing. He and his body told me he was dying. We called hospice.

It took only 24 hours for us to move my dad to a hospice, a house with a pool and play equipment and a kitchen that smelled of chocolate chip cookies. It wasn’t nearly as fancy or as expensive, but it was comfortable, and the care was kind and compassionate. At first, my dad was angry, but he calmed as the nurse suggested pain meds for his recent surgery, which he took.

My dad spent that first day in the hospice with his grandchildren, having moments of clarity alongside moments of confusion and tears, before eventually falling asleep. Occasionally, he would wake up, and be reassured by his nurse he would not get addicted to pain meds he was now taking regularly. He softly smiled at my mother and us “little monkeys” at his side. When he died four days later, he wasn’t suffering physically or emotionally, and I’d like to think he was happy with his beloved Pittsburgh Steelers blanket draped over him.

In hospice, we frequently talk about a “good” death. Ultimately my father had one — free of pain and the torture of paranoia. But I feel we failed him on his journey to that death, we who care for the elderly. We withheld medicines and denied my family honest discussions about his wishes for the end of his life. Most distressing, I feel we robbed him of his dignity. As I grieve, I am comforted by sharing my father’s story. My hope is that one family member, one health care professional will tuck this story away only to remember it the next time they hear a patient or father say “they are killing me.”

Susan Ely is a nurse practitioner.

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