What is Hospice? Myths and Facts About Hospice Care

If there’s one thing Dr. Emily Zametkin has learned throughout her career working in hospice is that it’s never easy to talk about.

“Not only is end-of-life a difficult subject,” she says, “there’s also a general lack of understanding of the purpose and benefits of hospice care. Unfortunately, the various myths and misunderstandings about hospice can prevent patients and families from seeking the compassionate care they need during life’s most challenging moments. “Which,” she adds, “is what makes talking about hospice is so very important.”

What is Hospice?

“The overarching aim of hospice is to offer compassionate care that provides comfort, dignity, and holistic support during end-of-life stages. The needs of every patient vary based on their illness and physical challenges, emotional state, personal beliefs and preferences about the end-of-life, relationship with family and other loved ones, and more. The care team is diverse with individuals with a wide range of skills and training to address almost every possible need,” explains Sherri Langevin, Operations Manager of Hospice Operations at Baystate Health.

While the composition of care teams varies between hospice agencies, all hospice teams include:

• Dedicated nurse case managers
• Physicians and advanced practice providers
• Social workers
• Hospice aides
• Bereavement coordinators
• Spiritual care counselors
• Volunteers

Dr. Zametkin notes that because the services offered by agencies can vary, it’s important to do some research before selecting the right one for you or your loved one.

“Many people don’t realize that patients have the right to choose their hospice and have the final say in the selection. You want to spend time meeting with different agencies to make sure they have the services that are important to you and that there’s a good fit between the team members, yourself, and those who will be supporting you.”

She and Langevin urge individuals and family members to reach out to hospice sooner than later.

“Don’t wait until you need hospice to reach out,” says Langevin. “The more time you can give yourself to consider your options, the more thoughtful you can be, and the better you’ll feel about your choice. Plus, establishing a relationship early allows the care team to get an understanding of your needs and goals so that when services are actually needed, they’re able to respond more quickly and appropriately than they would if you were at square one.”

Myths About Hospice

Dr. Zametkin and Langevin hear myths about hospice in their day-to-day work, and want to explain the truth patients and families should know.

Myth #1: Hospice Is Only for Cancer Patients

Truth: Hospice is for any patient of any age with a life-limiting illness. While this includes cancer patients, it often includes those with:

• Heart disease or heart failure
• Respiratory disease
• Neurological disease
• Kidney disease
• Stroke
• Chronic obstructive pulmonary disease (COPD)
• Dementia

Myth #2: Hospice Is Only for the Last Few Days of Life

Truth: Hospice care begins as soon as a patient’s doctor gives a prognosis of six months or less to live. However, if a patient lives longer than six months, hospice care doesn’t end. According to Medicare data, the average length of care is 93.5 days. Dr. Zametkin emphasizes that’s an average, “We’ve had some patients in hospice for just hours and some for years. Regardless, we’re there for every moment of it.”

Myth #3: Hospice Hastens Death

Truth: Hospice does not hasten death. In fact, studies consistently show that hospice patients live an average of 29 days longer than non-hospice patients. Langevin attributes some of the extended life to the good management of symptoms that hospice provides along with the 24/7 access to support.

Myth #4: Hospice Is Only Focused on the Patient

Truth: Because terminal illness doesn’t just affect the patient, hospice provides support and services to the patient’s family and caregivers. “Terminal illness upends the lives of those close to a patient,” says Langevin. “By the time they reach hospice, very often caregivers have spent months—or even years—stretched thin trying to care for their loved one and juggling their own life responsibilities. Hospice is here to support them however needed. That may be connecting them with a counselor, providing respite services so they can leave their loved one to get a haircut or have lunch with a friend, or helping manage paperwork or planning."

“Another critical service is grief support. Once a patient passes, we stay connected with family and loved ones for 13 months, helping them navigate grief, marking milestones with them, and giving them the resources and tools to move forward.”

Myth #5: Hospice is a Place

Truth: You can receive hospice services wherever you choose. This includes:

• Your home or a family member or friend’s residence
• Skilled nursing facility
• Assisted living facility
• Memory care facility
• Group home
• Hospital
• Hospice homes

Myth #6: Hospice is Expensive

Truth: The cost of hospice, including related medication, supplies, and equipment is covered in full by Medicare, Medicaid or insurance.

Myth #7: You Can No Longer See Your Doctor or Go to the Hospital

Truth: Your primary care doctor or specialist remains your doctor while you’re on hospice. You can also go to the hospital to help control symptoms if that is part of your hospice care plan.

Myth #8: Hospice is About Giving Up

Truth: “Hospice is not about giving up on life,” says Dr. Zametkin, “It’s about creating the best quality of life for the time that’s left. The focus is not on death but well-being and honoring a patient’s wishes so they can be as present as possible for as long as possible.”

Myth #9: Hospice Patients Must Sign a DNR

Truth: Hospice patients are not required to sign a Do Not Resuscitate (DNR) order. But, as Langevin notes, “If patient comes in with one, it will be honored.”

Myth #10: Hospice Patients are Heavily Sedated

Truth: Patients only receive medications as prescribed by their doctor(s). Any medications prescribed for pain and anxiety management are always started at the lowest possible dose and adjusted as needed.

How to Choose a Hospice

As Dr. Zametkin noted, not all hospices operate identically or offer the same services. While the notion of "shopping" for a hospice may sound overwhelming, she says there are resources to help and some good starting questions to ask.

“The first thing to look for is their rating. Medicare provides a rating tool to help you find and compare different hospices. You can get insight into everything from their experience caring for patients with specific types of illnesses to how they rank in communication with family, providing spiritual support, managing pain, and on and on.”

Langevin adds that another important consideration is the strength of their volunteer program. “Many of the non-medical support services offered through hospice are only possible because of volunteers. You want to be sure to ask about how strong their volunteer program is, how they’re trained, and is that training Medicare-approved. I’d even dive into what services volunteers offer. If companionship is important, ask about it. If your faith is important, ask about what ministry services they have. Again, you want to start evaluating agencies early so that you’re not pressured and you can find the one that best fits with what you want.”

Another valuable program to inquire about is We Honor Veterans (WHV). a joint initiative of the Department of Veterans Affairs and the National Hospice and Palliative Care Organization, WHV teaches volunteers how to handle veteran-specific physical and emotional issues that may arise near the end of life. WHV actively recruits volunteers who can connect more deeply with patients through shared experiences.

In cases where the patient is a child, you want to be sure to work with an agency experienced in supporting the unique needs of terminally ill children and their families.

Dr. Zametkin also encourages people to ask others who’ve used hospice about their experience. “There’s nothing like getting insight from someone whose ‘been there, done that.’ Whether what they have to say is good or bad, it’s helpful to you.”

Getting Started with Hospice

Unlike virtually all other medical services, you do not need a referral to begin hospice.

Langevin says, “No matter how far out or close on the horizon hospice is for you or your loved one, it’s never too early to start learning. You can set up an informational visit with Baystate Hospice by calling 413-798-6411 any time of the day or night. We can meet you when and where it’s convenient to answer questions, talk through options and timelines, and explore next steps. The experience may be new to you, but we’ve walked this path with others many, many times and are here to help you whenever you’re ready.”