The Big Hospice Care Decision

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A dear family friend died a couple weeks ago.

She’d been struggling with a terminal illness for months. Her daughter updated me on her status from time to time, so I knew her condition was getting worse.

And then, one afternoon, her daughter texted me.

Can we talk? The hospital is asking if we want to start hospice care for Mom and I can’t wrap my head around how to make that decision.

I completely understood.

I’m a huge advocate for good hospice care. Treatment is more individualized and coordinated compared to other medical situations. Hospice addresses patients’ emotional and spiritual suffering along with their physical pain. Families get guidance, bereavement support and volunteer companions that give them respite from caregiving.

Yet, the question about hospice care for a loved one is a gut punch.

Even for me.

I’ve been trained to have sensitive and pragmatic discussions about end of life and dying. Yet I feel knots in my stomach, imagining myself making that decision someday, which is highly likely to happen.

That’s because we know what hospice care means. It’s offered to patients with a fatal illness who are expected to die “soon.” Most of us aren’t sure what “soon” means, but it’s a bone-chilling bit of information. (Literally, a patient with a prognosis of six months or less is eligible for hospice.)

It can feel like everyone’s giving up on your loved one. That you’re inviting in Death when your strongest instinct is to bar the door.

And you may worry that hospice means turning over total control of your loved one’s health decisions to medical professionals. Signing away their most fundamental right: the pursuit of life.

Knowledge decreases fear ~ Julie McFadden, creator of Hospice Nurse Julie videos

Yet, I know some facts about hospice care that you might not know. I’m sharing them here to shift your perspective and ease your mind when a health care practitioner suggests you consider hospice for a loved one.

Hospice Care Can Be Life-Extending

There’s a myth that hospice care hastens death.

And I can understand why people believe it.

A patient no longer receives care aimed at curing their terminal health conditions. It’s how hospice achieves its goals of maximizing patient comfort and quality of life and minimizing pain. Frail bodies no longer have to endure aggressive treatments aimed at prolonging their lives.

When life-prolonging treatment stops, family members expect death to be imminent.

Yet research shows the opposite may happen. Patients may live longer under the gentler hospice care.

That’s right. Hospice care can actually extend a patient’s life.

For example, this article by Connor et al compared survival rates of hospice and nonhospice patients across a number of different illnesses. Depending on the health condition, hospice patients, on average, lived days and even months longer compared to nonhospice patients.

The authors offer several reasons for this finding:

  • Hospice patients are spared aggressive overtreatment.
  • Hospice patients receive better and more regular monitoring by hospice staff.
  • Hospice care provides “extra eyes” on patients receiving care at home or in assisted living or nursing care facilities.
  • Senior patients may have coverage for drugs that are not normally covered by Medicare.
  • Hospice providers treat the psychological and emotional needs of patients, contributing to their ability to tolerate their disease.

I would add that the counseling and support available to family members decreases caregiver anxiety and, in turn, the patient’s stress.

No Rights Are Relinquished

Family members also may fear that a patient loses control of their own health decisions when hospice takes over. And that going on hospice is a point of no return.

This is a misconception. Patients don't give up any rights.

They don’t have to sign a “Do Not Resuscitate” order if they don't want to.

They don’t have to give up their own doctors. In fact, hospice encourages them to keep their primary doctor on the care team.

Right now, there is a stipulation that Medicare patients forego curative care if they go on hospice. But advocates are working toward getting rid of this limitation, according to this 2021 article from AARP.

But a patient can always change their mind and leave hospice, for any reason.

In fact, sometimes hospice makes the call.

If a patient goes into remission or their prognosis changes, hospice may discharge the patient. Granted, this is not typical. But I personally know five people who went on and off hospice.

(To clarify, patients aren't forced off hospice if they live beyond the projected six-month period. Discharge is based on their health status, not on how long they’ve been on service.)

Let’s Talk

Now I want to give you an unfortunate fact about hospice care: Most people don’t receive it nearly soon enough.

According to the National Hospice and Palliative Care Organization, the majority of hospice patients get less than a month of hospice care before passing. Twenty-five percent receive less than a week of care.

They are not the hospice patients who live longer and more comfortably as a result of hospice care. They aren’t the patients who could even be discharged.

They are people who die before they experience the full benefits of hospice care.

So, I hope I’ve helped soften your perspective about hospice care. And if a doctor recommends hospice for a loved one, you’ll give it careful consideration.

It’s also fine for you to bring the question up with your loved one’s doctor. It lets them know you’re open to the idea.

I hope this post saves you some anguish if you find yourself having to make the big hospice care decision.

As Hospice Nurse Julie said, knowledge decreases fear. So, I encourage you to get more information. Here are some of my favorite resources about hospice care:

I know this is a difficult topic for all of us.

If you’ve read this far, thank you.

You're in my heart.

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