Hospice for Dummies

A Crash Course on Everything I Never Wanted to Know

Hospice. My complete ignorance of the word and the service is well chronicled, in H is for Hospice, and again in The Beginning of the End. I figure it’s probably a crash course for most people. Now, of course, I know of all kinds of ways to learn about hospice care. There’s even a Hospice 101 booklet you can get on Amazon, with QR codes at the end of each chapter to go more in depth and answer FAQs. But what’s the fun of that when you can get it all from a firehose?

Here’s a closer look at what I learned on Day 1, and a few nuances that I would only be able to fully appreciate later.

First, every hospice is a little different, and in largely populated areas—like the Bay Area-- you have a choice of hospice providers. Under Medicare regulations, a hospice provider has to provide, at minimum, four levels of care:

• Routine home care, for symptoms and pain that can be adequately controlled.

• Continuous home care, (short-term crisis-like care to bring pain and symptoms under control).

• General inpatient care (same as above but in a medical or care facility)

• Respite care, to relieve the caregiver.

A FEW THINGS TO CONSIDER

Beyond that, there is plenty of room for artistic license. If you have a choice of hospices there are some factors worth considering. One is the frequency and type of volunteer care provided. Volunteers can offer up anything from direct care to pet therapy, haircuts, housekeeping, errand help, music therapy etc, etc, which can add up to a lot of bonus comfort. A few other factors include staff training, communication methods with family and other doctors, and processes for medication and pain management.

Another biggie is religious affiliation, as some hospices are secular and some are affiliated with a religion. Secular hospices still offer spiritual guidance and counsel, but not tied to any specific religion. This may seem like no big deal but it really matters if a religious philosophy does not match up with a person’s sensibilities or end-of-life wishes. The hospice workers and the volunteers will likely share that religious philosophy so it may feel uncomfortable or overwhelming if it’s not your jam. On the other hand, a hospice aligned with a person’s religious convictions and cultural norms can bring a lot of peace and comfort to both patient and family. People tend to lean into their religion and beliefs, or even rediscover them as they near death, and hospices can integrate that into care.

For us it made sense to go with the non secular Hospice recommended by the facility where Nina lived. In retrospect, we could have asked more questions and gotten references, and perhaps discovered one that fit our needs better; but, add it to the steadily growing theoretical list of F*-ups and Do-overs (see Help (not) Wanted and On Purpose). Also, just then we really needed someone to take the wheel, and hospice did just that.

BASIC TRAINING

The folder given to me by the hospice social worker was filled with info sheets and little specific brochures. These included detailed info about our specific hospice as well as a general overview of hospice services, starting with the nature and goals of hospice care. It listed the types of services available (such as nursing visits, assistance from home health aides, social work support, spiritual counseling, and grief support), as well as an explanation of how the interdisciplinary team works together.

The info packet also addressed common concerns or fears about hospice, including the notion that hospice equates with giving up or hastening death. That pretty much summed up my existing perspective. Clearly, I was an ideal recipient for this literature which was meant to pour knowledge into that large void about all things death-related.

There were brochures like: "Gone From My Sight: The Dying Experience" (also known as "The Hospice Blue Book") which demystifies the dying process by educating families about the stages of dying and the physical and emotional changes to expect; "The Eleventh Hour: A Caring Guideline to the Hours to Minutes Before Death" which offers practical information and support for caregivers, including guidance on what to do in the final hours and just after death. There were also recommendations for books with perspectives on death and dying: "Knocking on Heaven's Door,” "Being Mortal," "Final Gifts," and "How We Die.”

Basically, all those forms we filled out when Nina entered the Grove? (see Hello Memory Care for a recap) This is where they got real. It wasn’t the most uplifting stuff, but to me it was revelatory. The flip-side of having never talked about death, was the illumination that every scrap of information provided.

GOOD INTEL ON THE NITTY GRITTY

Among the most helpful advice that jumped out at me was this: “Food and fluids should never be pushed, as this can increase risk for choking, pneumonia, and abdominal discomfort as the gastrointestinal system slows down along with the rest of the body’s systems.” For that reason, the literature strongly discourages cajoling or force-feeding. The hospice guidance around food is to offer it once, then respect the person’s choice. The policy and its purpose seemed so sensible, so simple. In reality, not so much.

Other helpful advice was about recognizing non-verbal signs of pain. These were things like grimacing, furrowing the brow, clenching the jaw, pursing lips, grasping, clutching, flinching, fidgeting, rocking— all things I’d seen in mom’s behavior, but had not equated with pain.

I was still sifting through the reading material when the chaplain showed up, ready to do her thing. Nina was dozing, so I figured she’s just come back and meet with Nina another time, but she stuck around to talk to me. It was the first time I had even considered that I might benefit from support as well. We are not religious people but I’d come all that way and had nothing else to do so I took the opportunity. Talking freely with someone who was compassionate, open, comfortable with the death experience—and with whom I had zero connection or baggage—was surprisingly refreshing.

LETTING IT ALL HANG OUT

As sad as it felt to have arrived at the hospice stage of this journey, it was also a relief. I felt lucky to have this time alone with mom now, without bemoaning her condition or troubleshooting the latest medical issue. Nina didn’t come out to activities anymore, so the activities director, Belle, came in to check on her. Somehow, I forgot to mention until now that shortly into Nina’s stay at the Grove, the super earnest activities director had been replaced by the super sunshiney and creative Belle. She also happened to be my sister’s former neighbor, who I’d last seen when she was still a child. Now all grown up, Belle was perhaps the greatest gift at the Grove. Her sweet smile and familiar presence instantly put Nina at ease and made her light up.

When Belle walked into Nina’s room that day at the end of my Hospice 101, she saw my look and she knew I knew. Through all the meetings with all the new faces I hadn’t yet cried, but seeing Belle pushed me over the edge. There was nothing to say, so we cried together quietly, and it felt good. Beatie, who was on her work trip for a couple more days, kept in touch by email between her appointments. “Now I get what it feels like to be all the way across the country when the shit hits the fan,” she said, adding, “I think we are in the home stretch.” Soon, it seemed, Nina’s suffering would be over.