What’s Lost Without Hospice Care

Even before we could comprehend all the meaning her words held, my mother vehemently made one statement to me, my brother and my sister over and over: “Don’t ever put me in a nursing home.”

In the ’60s and ’70s, when I was growing up, “nursing home” called up terrible visions of neglect. My Brownie Scout troop once visited the Marion County Home, the place of last resort for the elderly poor in Indianapolis; the terror I felt from (literally) drooling, unkempt, wheelchair-bound white-haired men and women reaching for my hand ensured I’d never step foot in a place like that again.

My mother’s unending admonition kept this memory fresh. Putting her in a nursing home was unthinkable.

Of course, that’s exactly where she ended up in 2012, though in a much nicer one than the “old folks’ home.” Modern nursing homes are regulated. People with terminal illnesses have options.

The key is understanding what those options are. One that I desperately wish we’d known more about is hospice care.

The first step to using hospice is knowing about it long before you need it. From the Hospice Foundation of America:

[Hospice provides] medical care for people with an anticipated life expectancy of 6 months or less, when cure isn’t an option and focus shifts to symptom management and quality of life. Palliative care and volunteers are two major components of hospice programs; in fact, hospices that utilize Medicare are required to have volunteers on each patient’s care team.[1]

In 2020, there were 5,058 hospice agencies in the United States.[2] At one of those, Beacon of Hope Hospice in Davenport, Iowa, hospice volunteers work with patients wherever they are: in their homes, nursing homes or assisted living facilities. These volunteers help and comfort patients by running errands, reading aloud, listening as companions or performing similarly kind actions.

Again, from the Hospice Foundation:

A person does not have to be bedridden or in their final days of life to receive hospice care. It is most beneficial when the patient and family can receive care early to take advantage of the many benefits hospice care can offer.

When my long-widowed mother was diagnosed with stage 4 lung cancer at age 68, we had little to no understanding of how hospice might apply to our situation.

Why didn’t we just Google it? Remember, in 2012, Netscape was still a browser, EarthLink was offering dial-up service and Pinterest had just been made available to the public. Widespread use of broadband internet connections was just getting started.

Besides, we were more than a little dazed. Mom had smoked for 30-some years but had quit more than 10 years earlier. She’d already survived breast cancer in her late 40s. She’d lost the only man she ever loved when he was only 55. Hadn’t she been through enough?

The final time Mom went to the hospital in an ambulance (sudden, debilitating headaches), she was in too much pain to leave without 24/7 care. That’s when someone put a printed multi-page list of nursing homes and hospice programs into my hands (phone numbers only, no websites) and said, “Choose one by the end of the week.”

We didn’t think Mom could go anywhere but a nursing home. The amount of pain medication she required by then robbed her of the stability needed to bathe or use the bathroom by herself. If we took her home, we thought, it would be only a (short) matter of time before she’d be back in the hospital. Plus, for a reason I no longer remember, taking her home and then going to a nursing home somehow negatively affected her Medicare coverage.

We missed our window of opportunity because no one had told my mother she was dying. We’d been at the right point for hospice—and potentially for avoiding a nursing home altogether—a couple of months earlier.

My mom was a stubborn woman. Add the unreality of having a terminal disease and an entire medical team who couldn’t say, “There is no cure; enjoy what time you have left,” and we had a recipe for disaster.

We needed a palliative care specialist. Maybe they didn’t have them back then. It seemed like we were on our own.

I’d been the first to learn Mom had cancer. Well, technically she was, but she didn’t remember.

The doctor who scoped her had broken the news right after discovering the reason for her months of not feeling well. Probably because of the anesthesia, she recalled nothing of the conversation. Sitting up in her hospital bed later that day, Mom said to me, “When is the doctor going to come and tell us what he found?”

My heart hit the floor, along with my courage. All my childhood memories of volatile conversations with my short-tempered mother came rushing back. I couldn’t hide that I knew.

“The doctor told you after the scope. He talked to you and then came out and talked to me.”

“No, he did not talk to me.” (He did). “What did he say?” she demanded.

“You have lung cancer,” I said. “Stage 4.”

“That can’t be right,” she said, shocked. “I don’t have lung cancer. I can’t.”

I handed her the small drawing the doctor had made to show me where all the lesions were, but she still didn’t believe I’d understood him right. I had to ask the nurse to get the doctor to tell her again.

He did. Then he referred us to an oncologist for further information.

The oncologist was kind and considerate (and pregnant), but at no point over the months of treatment did she tell my mom her odds of surviving or how long she had to live. (The five-year survival rate for lung cancer today is under 20%; it was lower back then.) During the months she endured radiation and chemotherapy getting increasingly exhausted (and bald) without improving, no one told her she was highly likely to die at the end of it all, anyway.

We came close to a frank conversation once; I remember a day when the oncologist hinted that they’d done all they could do. They were pretty strong hints, in my view, and besides, I’d figured it had been obvious for a while—but then my mom asked a question that revealed she wasn’t getting the message.

 The doctor gave me a look like, “Well?” When I tried to say something to make it clearer, Mom interrupted me immediately. She wasn’t going to believe me. She was going to get over this cancer. Period.

So she never heard otherwise. The oncologist went on maternity leave soon after that. During the next office visit, which should’ve been the start of discussions about hospice and palliative care, a higher-ranking and much older doctor strode in, looked at her chart and said, “We haven’t tried such-and-such? Why not do that if there’s a chance?”

There wasn’t a chance, though, and every other medical professional in that room obviously knew it. Sadly, my mom grabbed hold of the doctor’s words like a drowning woman grabbing a life jacket.

I was so angry.

The moving PBS Frontline documentary “Being Mortal” features Dr. Kathy Selvaggi, a palliative care specialist of the kind we needed right then. In the film, she says, “First of all, I think it’s important that you ask [a patient] what their understanding is of their disease. I think that is first and foremost because, oftentimes, what we say as physicians is not what the patient hears.”

Amen. Even worse, what physicians don’t say can do a lot of harm.

Knowing what I know now, I wish I’d known a hospice volunteer. Hospice likely would’ve allowed my mother to die at home. Again, from the Hospice Foundation:

“Hospice is provided primarily where a person lives, whether that is a private residence, nursing home or community living arrangement, allowing the patient to be with important objects, memories and family. [It’s also] the only medical care that includes bereavement care, which is available during the illness and for more than a year after the death for the family/intimate network.”

Something else Dr. Selvaggi said the medical team should say to the patient: If there are things you want to do, let’s think about what they are and how we accomplish them.

We couldn’t do that. We couldn’t focus on having good days during what little time was left with my mother because her oncologists and family were unable to tell her the unvarnished truth and make sure she understood. We couldn’t because a doctor unfamiliar with her case had extended a ray of false hope. We couldn’t do anything but watch her descend further into a world of pain because she didn’t, couldn’t, wouldn’t fully understand where her disease had already taken her.

What did that cost us?

It meant she was a hospital inpatient when the amount of pain medicine she had to take left her unable to live alone and in a state that made me and my siblings feel we couldn’t care for her without messing up and letting the pain become excruciating.

Mom died in a nursing home.

Looking back now, my sister and brother feel guilty. I don’t. My unmarried brother had no job or money and didn’t believe in pain medicine (so no way would I agree to that). My single sister with a child still at home and asthma attacks requiring hospitalization from stress, among other things, would never recover from the loss of income from missing work. For my part, I think my mom and I would’ve ended up hating each other. We hadn’t gotten along since I was 13 (I moved out while still in high school), I had two kids, a full-time job, band-mom responsibilities and a firefighter husband with those you-don’t-miss-work 24-hour shifts.

I still harbor white-hot anger at that last doctor, though. I also wish we hadn’t had an oncologist who went on maternity leave. Most of all, I regret not being told at the right time what hospice could do for us.

The U.S. Bureau of Labor Statistics reports that hospice program enrollment increased more than 7 times from 1990 to 2013. As of 2019, the U.S. had 420,000 hospice volunteers, who provided 19 million hours of service each year and saved providers nearly $470 million annually.[3] Now, COVID and the aging population mean that hospice providers need volunteers now more than ever.

I have the utmost respect for every hospice volunteer. If you think you might be interested, I encourage you to contact providers in your area or the Hospice Foundation.

You could make a lifelong difference for families like mine.

Ever smoked? Get a lung scan. Learn more.

Photo by Angelina Litvin on Unsplash

[1] https://hospicefoundation.org/Volunteer

[2] https://www.statista.com/statistics/339895/number-of-hospice-providers-in-the-us/#:~:text=Number%20of%20U.S.%20hospice%20providers%202009%2D2020&text=In%202020%2C%20there%20were%205%2C058,as%20emotional%20and%20spiritual%20support

[3] https://hospicenews.com/2022/03/07/hospices-adapt-as-volunteers-return-to-a-changing-landscape/