“At 100, My Mom Had Dementia and Needed Hospice Care. Getting It Was Nearly Impossible.”
by Jeanne Erdmann
The Washington Post, May 5, 2018
NOTE: This story pitch came from a 2017 Journalists in Aging fellowship. Washington Post health and science editor Laura Helmuth provided me with a letter of recommendation for the fellowship, and I sent her this pitch as part of my fellowship story package.
My mother’s death shows the strengths and challenges of hospice for people with dementia
When my mother prayed, when she remembered what prayer was, she asked every Saint who would listen to please let her die in her sleep. With the help of hospice, in late 2016, my mother indeed died in her sleep, in her own bed, one week past her 101st birthday. One of my sisters and I were curled around her, asleep ourselves.
My mother’s death may have been peaceful but her dementia made enrolling mom in hospice and keeping her there a challenge. In fact, she died during her second stint in hospice. Earlier in the year she died, mom had been enrolled in hospice for six months, but then she was then dis-enrolled because she was not declining quickly enough. Less than two months later, when my mom was obviously dying, we were able to reenroll her in hospice care and she died two weeks later. From what I’ve learned, our experience isn’t unique.
The essence of the story is this: Dementia is changing the face of hospice. In 1995 about 1% of people enrolled in hospice had dementia as a primary diagnosis. Medicare enrollments for 2016 show that dementia outpaced lung cancer, the leading cancer death for men and women. People with dementia use up more care days than cancer and cardiac problems. Researchers with access to more recent data tell me that dementia is the number one diagnosis for hospice enrollment. As we learned though, hospice can be a revolving door for those with chronic diseases like dementia, for both medical and policy reasons. Our experience shows the strengths and weaknesses of such care, and echoes the scant research on dementia caregivers – leaving hospice can be traumatic.
Right from the start, we hit a snag. I sought out hospice care about a year after my sister and I switched caregiver roles. A hospice intake nurse told us that my mom’s dementia alone was not enough to qualify her, something I’ve since learned could be incorrect. A gerontologist had already diagnosed mom with late-stage dementia and encouraged us to place her in a care home. Mom needed help with everything, dressing, toileting. She wasn’t bedridden, but the bone-crunching osteoarthritis in her left knee and hip kept her chair-bound. She could feed herself once a plate of food was set in front of her. She spoke but not a lot, unless she was in full-blown agitation. Many days, she panicked if my sister left the room.
We were also already dragging mom to the ER a lot because some days we just didn’t know what else to do. When, for instance, she was suddenly lethargic, we called her primary care doctor, waited all day for a response, and by then it was my sister in a full-blown panic. We ended up in the ER anyway. As it happens though, when the hospice intake nurse was going through my mom’s medical records after her initial assessment, she found a blood test that qualified mom for hospice for congestive heart failure. For the next six months, weekly visits from nurses and aides helped us stay ahead of skin and bowel issues that had brought us to ERs in the past. The visits gave my sister emotional support and respite.
Once 6 months were up though, it was time to re-certify mom for hospice and the nurse told us she wasn’t declining quickly enough. Her diagnosis hadn’t changed, her dementia had certainly progressed. What was worse, she was getting so frail. I could see the difference in her from week to week. Instead, the hospice nurse recommended palliative care, where the frequency of visits is far less.
Here’s where dementia patients and their caregivers are ensnared. For starters, in 2013, Medicare made policy changes stating that frailty (or failure to thrive) alone could not qualify someone for hospice. This policy change came about after frailty became the leading diagnosis in hospice. Physicians and hospice nurses alike recommended the change because frailty is most often a symptom of something else. And, Medicare is concerned about fraud and about hospice being be used for long-term custodial care. But the change caused confusion and chaos for providers, and confusion and stress for families, says VJ Periyakoil, MD, a palliative care expert at Stanford University School of Medicine. People with dementia decline over years and years and frailty is part of that decline.
To make matters worse, people with dementia don’t have the same trajectory towards death as say, someone with late-stage, cancer. There are no scans, no blood tests, and no scientific ways to predict with six-month accuracy when a person with dementia will die. Leaving hospice left my sister heartbroken and exhausted beyond despair. Hospice after all is designed to care for patients and their families. Nothing in the medical system replicates hospice services. There are no alternatives. Just as there remains very little research on the effect these “live discharges” have on patients and their families.
My mother declined so rapidly in the weeks after she left hospice that I feared we would no longer be able to care for her. And then, from one day to the next, while I had her at my house, my mom woke one morning and shook her head at food and her sweet tea. She wouldn’t move from the chair beside her bed. I called the hospice agency and she was re-enrolled. She died two weeks later.
Hospice isn’t perfect. The dying need a lot of care. We had to hire private caregivers even with hospice help. But our hospice nurse told what to expect, explained the physical changes to watch for in a person who is actively dying, a process that overtakes the body in the last 24 to 48 hours. The services we received from hospice pulled us through her death, and continue to sustain us. We were, and still are, at peace, because my mother died so beautifully. Not everyone is so lucky.
This is a key time to write about the difficulties of accessing and remaining in hospice for people with dementia, (something from what I can tell the Washington Post has not covered), and I’d like to tell this story as a reported essay. Hospice stories and stories on death and dying are popular right now. From what I’ve learned so far, our experience with dementia and hospice is fairly typical and is mirrored in other chronic diseases, such as COPD and heart disease, and also illustrates the complexities of the issue, and the need for caregiver help.
I reported this story as a Journalist in Aging Fellow, and the tag line would need to include mention of the program. If this story doesn’t work for you, I have others waiting.
I look forward to hearing from you, and thank you again for your support on this fellowship.