5 Things a Hospice Nurse Wants You to Know About Hospice Care
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Most people would rather avoid thinking about hospice, and there’s a lot of confusion about what it even is. Hospice is a program for people who’ve ceased treatment to cure or control their terminal illness, as defined by the National Cancer Institute (NCI), and it offers physical, emotional, social, and spiritual support for those patients, as well as their family members. You may want to consider hospice care if you’ve been diagnosed with cancer; dementia; or an advanced lung, heart, kidney, or liver disease, among other conditions.
One common misconception about hospice is that it’s very grim, and that it’s where you go to die. While hospice is a program for people nearing the end of their life, hospice nurse Julie McFadden, RN, says that there’s a lot more to it.
McFadden’s prior experience as a nurse in a hospital intensive care unit (ICU) made her think that there had to be a different way to approach care as a person neared the end of their life. After making the switch to hospice nursing, McFadden learned about what happens — and what helps — at the end of life.
Here’s what she wants people to know about hospice care, death, and dying.
Hospice Can Be In-Home or at a Facility
McFadden provides hospice care for people in their homes through an agency, but there are also inpatient hospice facilities, which, she says, are typically set up to be homier and more comfortable than a hospital.
A key difference between at-home and inpatient hospice is that at a facility, there is round-the-clock care, whereas at home, family members would be the primary caregivers for day-to-day tasks, such as preparing food or performing household chores, supplemented by scheduled visits by hospice team members — and emergency visits at all hours, if needed — to take care of specific tasks, like pain management and wound care. Someone might choose an inpatient hospice facility if they live alone, or if their spouse isn’t able to be their full-time caregiver because of work responsibilities or because they themselves are elderly and infirm, for example.
People of All Ages Can Be in Hospice Care
To qualify for hospice care, you need to meet the following conditions, according to Medicare.gov.
- You have a terminal illness with a prognosis of fewer than six months to live, as determined by your doctor.
- You accept hospice care over care to cure or control your terminal illness.
- You sign a statement that you’re choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
Beyond that, people of any age can be in hospice. While the majority of hospice patients are older adults — a report from the National Hospice and Palliative Care Organization (NHPCO) found that in 2018, about 61 percent of Medicare hospice patients were 75 years of age or older — younger people can be in hospice, too. The NHPCO report also found that about 16 percent of hospice patients were younger than 65.
“Adult hospice is [age] 18 and over, and we see all ages,” McFadden says. She works in adult hospice, but says there’s also pediatric hospice for those younger than 18 years old.
Consider Hospice Care Sooner Rather Than Later
Hospice is often brought up too late, McFadden says. Instead of facing the reality that end-of-life is approaching and planning for hospice, more lines of treatment are often attempted to prolong a patient’s life, she says, even when they’re not working and it’s diminishing a person’s quality of life in the process.
As a result, hospice is offered as a last resort, when the person doesn’t have much time left to live and make use of the benefits of hospice care, such as pain and symptom management, and getting more time to spend with loved ones rather than being shuttled in and out of medical appointments, McFadden says.
When life-prolonging treatments are no longer working for you or your loved one, talking to your doctor about and deciding to go into hospice sooner could make a significant, positive difference in the quality of the final months of life, she says. If your doctor hasn’t brought it up to you, you can always ask for more information on this option.
While a person needs to have fewer than six months to live to qualify for hospice, many people may be hesitant to start care and get the full benefit from it. One study shows that only 10 percent of patients are in hospice care for six months or more.
Make Use of Your Entire Hospice Care Team
McFadden encourages people in hospice care to make use of their entire team. In addition to hospice nurses like herself, who administer wound care and handle symptom and pain management, a hospice team generally also includes the following people:
- Medical director and physician(s) Develop a hospice care plan and oversee pain and symptom management.
- Certified nursing assistant (CNA) or home health aide Helps the patient with personal hygiene like bathing and dressing, as well as tasks like changing bedding.
- Social worker Addresses psycho-social needs and can provide assistance and resources for nonmedical concerns, such as legal and financial issues, and end-of-life planning.
- Chaplain Provides spiritual and emotional support.
- Volunteers Don’t typically physically care for the patient, but can help with other tasks like running errands.
Depending on the program, hospice can also offer other types of services, such as music therapy, massage therapy, pet therapy, and more, McFadden says.
Many people decline to use some of the nonmedical hospice services, like those provided by a chaplain or volunteers, says McFadden. But caregivers are often overburdened, and she recommends making use of all the services hospice offers.
“This is a time when [the hospice team members] are just here to support you,” she says. “Take all the support and help you can.”
It’s Crucial to Communicate Your End-of-Life Wishes and Ask Questions
Hospice gives people an opportunity to intentionally plan the end of their life, McFadden says. She encourages people to think about how they want to live the last few months of their life and what their wishes are, and convey these desires to their hospice team and loved ones.
Don’t be afraid to ask your hospice team all your questions, no matter how scary, McFadden advises — even questions like, “How long do I have to live?” and “What is dying going to be like?”
While hospice workers can’t know the answers for sure, McFadden says they can often answer to some extent based on their past professional experiences. Even if they don’t have the answers, just talking about these daunting topics with a trained hospice care provider can be comforting and dispel some of the fear of the unknown that surrounds the end of life.
“We need to change the way we look at death and dying, because people will have a better end of their life,” McFadden says. “I’ve seen it again and again.”
How to Find a Hospice Care Team
To find a hospice care agency or facility in your area, start by asking your doctor for recommendations. The NHPCO has a searchable list of providers on their website, and you could also search this Medicare database, or Google hospice care near you, and read the reviews, McFadden suggests.
Once you’ve narrowed it down, you’ll want to make sure that the option you ultimately choose meets certain licensing requirements and supports your needs. Some questions to consider when deciding on your hospice care team, recommended by Medicare.gov, are:
- Is this hospice care provider certified and licensed?
- Does this hospice care provider train their caregivers to perform at-home care?
- How will my doctor work with this hospice care provider?
- How many people does each member of the hospice staff care for?
- How regularly will the hospice staff meet with me and my family to discuss care?
- How does the hospice staff handle emergencies after hours?
- What measures are in place to make sure I’m getting quality care?
- Are hospice volunteers trained, and what types of services do they provide?
McFadden, who started posting videos about hospice on TikTok two years ago, after realizing there was a need for this information to be shared more widely, has also created this YouTube video of some key questions to ask, as well as other tips to help you choose the hospice program that’s right for you.
Follow McFadden on TikTok, Instagram, Facebook, and YouTube @hospicenursejulie.
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