Opinion: Why I Went on Hospice Even Though I'm Not Dying

I'd been living on luck for years before I signed up for hospice.

I'm 80 years old with multiple health problems, including lung cancer and COPD. I live alone, my only relative a daughter 1500 miles away. I have friends, but they are also older and I am loathe to bother them in an emergency. I don't have a life alarm button. If I fall, I'm on my own.

Last October I wound up in the hospital with severe pneumonia — after a terrifying episode of what the doctors called "respiratory failure," which means I couldn't breathe. I had the presence of mind to call my "young" friend Angela (she's in her sixties) who lives nearby and was kind enough to come over and call 911. 

She accompanied me to the local hospital where I spent a hellish week, possibly the most harrowing experience of my life. It freaked me out and forced me to reconsider my options. I knew I had to do something to avoid another 911 call in the middle of the night — but what? I couldn't afford a live-in aide, I couldn't depend on Angela and I sure didn't want to wind up in a nursing home.

As I usually do, I put off a decision. But a few months ago, I had an episode of terrible chest pain. I mean excruciating. It came out of nowhere and felt like a vise was being tightened above my breast area. I was determined not to call 911. I took a chance. I assumed it wasn't a heart attack, popped a few oxycodone that I'd stashed away after a recent back surgery and went to sleep. I was sore in the morning but alive. I guess I had pulled a muscle.

But that was my wake-up call. I knew there had to be another way. I had been on "targeted therapy" for cancer on and off for years, but the price was steep: constant fatigue, diarrhea, skin infections, loss of appetite and vocal cord nodules. I had already decided to forgo any more drugs for cancer since they were worse than the disease — which made me a candidate for hospice.

I had reached a point in my life where quality of life trumped quantity. I wanted to be able to enjoy whatever time I had left.

If you have a terminal disease and are not pursuing curative treatment, you can go on hospice with a doctor's referral. My cancer center's palliative care team was only too happy to refer me.   

Despite the negative bias towards being on hospice, I decided to go for it. I've never been one to pass up free services. There is an assumption that you have to have less than six months to live to be accepted to hospice, but that's just a ballpark. The official criteria: "your doctor and the hospice medical director certify that you are terminally ill and probably have less than six months to live."

"Probably" is the operative word. No one can predict how long anyone will live. Some people stay on hospice for years. They can go off hospice if they decide to pursue curative treatment.

The word "hospice" conjures up a vision of imminent death. And for most people, this is the case. They are so anxious to avoid facing their own mortality that they don't apply for hospice until the grim reaper is at the door. Then hospice has to hustle to help them and often doesn't have the time to coordinate adequate services. That's the worst mistake people make when it comes to hospice, waiting too long to apply.

My hospice nurse, Nickole, whom I consider my personal angel, explains: "When a patient comes on early enough, the interdisciplinary team has a chance to know the patient and their goals for care, we have a better chance of making them comfortable and reconciling any issues that need to be taken care of."

She continues, "You're able to get care in your own home knowing that should there be changes at any time, you have a team available to you where we can keep you comfortable so you don't have to go back and forth to the hospital. When a patient waits until the last minute when they're actively dying, we don't have enough time to get them comfortable."

That's what happened to my friend Lonnie, who died from cancer, but went through agony because she was in denial about her imminent death and refused to call hospice until the last possible moment. 

I'm not in denial about my situation — I've always been a realist. I discovered hospice offered the very services I needed most. A nurse on call 24/7. Help in a crisis. All my meds delivered to my door. If I have an emergency in the middle of the night, a medical professional will show up. No ambulances, no emergency rooms, no admission to a medical system that is uncaring and incompetent.

Whew! Bring it on. Hospice will even have a nurse stay with me in my home for few days if needed. They also have an in-patient facility where you can stay temporarily if you're having a health crisis or are close to death and don't have a caregiver at home. Most of all, hospice gave me peace of mind.

As you probably know by now if you're old enough to worry about your options for the future, the long-term care options for older adults on Medicare in this country are dreadful, I think. It's a nursing home or nothing.

Unless you have long-term care insurance, which most of us don't (too expensive) you have to hire your own home health aides — a very costly proposition. I do have someone 4 hours a week but she's not a medical professional — she mostly cleans and shops for me. You can get an aide from Medicaid, but coverage and eligibility varies.

There may be local help you're entitled to, but good luck finding it. I tried to track down the right agency myself but got nowhere. My hospice social worker knew who to call. She actually stayed on hold for a half hour — at my house — until someone answered and made an appointment for me. I'm now on track to get some extra help.

So yes, I love hospice. Especially Nickole who visits every week and brings some sunshine — and often home-cooked lasagna — into my life. I've been told not all hospice nurses are so adorable. I just got lucky.

So far, I'm doing OK. I'm on oxygen sometimes, but I still go out to dinner, to my book club and shop for my own food sometimes. Unlike many hospice patients I don't have dementia. Nickole tells me I'm one of a very small percentage of her patients who are compos mentis (have control of one's mind).

Maybe, like Malachy McCourt, I'll be kicked out of hospice for not dying fast enough. Or maybe they'll see me through till the end. Either way I'm OK with it.