Myths About Hospice & Palliative Care: Separating Fact From Fiction

On a recent episode of Conversations on Care, Open Arms Solutions founder Julie Kollada discussed myths and facts about hospice and palliative care with Ellen Hoekstra, who is the Community Educator for AccentCare Hospice & Palliative Care. Before diving into the myths, let’s define what hospice care actually is.

Hospice is comfort care and support for people in the last phases of incurable diseases that helps them live as comfortably as possible. Dying is part of the normal living process, and hospice care focuses on the patient’s quality of life during the time they have remaining. Patients and family members deserve to know exactly what’s happening so they can spend their remaining days how they see fit. Hospice care is delivered by a whole team of providers to address the emotional, physical, and spiritual needs of the patient and whoever they describe as their family.

Unfortunately, there are many myths surrounding hospice care, which has created a stigma around accessing it. It may sound scary, but really it’s a team of loving, compassionate people who are there to help and support the patient and their family throughout the journey. Not everyone wants hospice, but it’s important to know what it is so you can decide if you and your family want it.

Myth #1: Hospice is a resignation to hopelessness and helplessness.

Fact: Hospice is not giving up hope. It’s a realistic way to deal with fatal or terminal illness by offering dignity and comfort to the patient and their family. The goal is to have the patient where they want to be, surrounded by who they want to be with them, and to manage pain and symptoms. It’s being realistic and choosing comfort.

Myth #2: Hospice is a place to stay.

Fact: Hospice isn’t a physical place—it’s a philosophy of providing care to terminally ill patients. Hospice providers care for patients in a variety of locations. They’ll go to where the patients are, which is most often in their homes or the homes of family members or friends. However, hospice providers can also see patients at nursing homes, assisted living homes, or inpatient units (for patients who need higher levels of care for symptom management). Ellen and the team at AccentCare have even cared for someone who was homeless and chose to remain homeless during their time in hospice care.

Myth #3: Hospice is only for the last 24-48 hours of life.

Fact: Hospice is typically for the last six months of life expectancy, as studies show that this is the most beneficial duration of hospice care. Many families wait until the last few days and say they wished they would have known sooner. It’s heartbreaking to go to the bedside and someone is actively dying before they can clearly express their wishes. Information is empowering to make important choices when it comes to end-of-life care.

It’s also possible to come off hospice if a diagnosis changes. Some people do get better as a result of hospice, as it means they are not having to go back and forth to the hospital which can be exhausting and can expose them to infections. Studies show patients with certain diagnoses like heart failure live an average of 27-28 days longer with hospice services in place.

Myth #4: Hospice is a substitute for the family or the family’s care.

Fact: Hospice is very family-oriented, and it helps the family care for their loved one at home. It provides education on the disease process, comfort medications, training for family members on how and when to administer those medications, and more. The patient’s plan of care is not from the hospice provider, it’s from the family. With hospice care, there’s someone to call 24 hours per day if there’s a change in condition or questions arise, or if the patient or family members can’t sleep or just want to talk. Hospice offers grief counseling and bereavement support for family members as well, both before and after the patient passes away.

Myth #5: Hospice is only for cancer patients.

Fact: Many people (even some nurses) think that hospice care is only for cancer patients, but it’s actually for patients with any end-stage diagnosis. The top diagnoses seen by hospice providers nationally are Alzheimer’s disease/dementia and Parkinson’s disease, followed by cancer. Hospice care can be given for patients with heart failure, COPD, or any other terminal disease. To be eligible for hospice care, two physicians must sign off on the patient’s life expectancy, which may change since it’s ultimately a guess. People aren’t ever kicked off hospice, but can graduate if their condition improves.

Myth #6: I will have to give up my primary physician if I elect hospice services.

Fact: Most of the time, the attending (primary) physician wants to refer to the hospice physician because most patients are at home, but it’s not required to give up your primary physician. Hospice physicians are board-certified in palliative medicine (pain and symptom management) and they are readily available to the team which often means they can provide more comprehensive care than primary physicians. In nursing homes, attending physicians may continue to provide care, but there will be a hospice physician on call as well.

Myth #7: Hospice is too expensive.

Fact: Hospice is actually 100% fully funded for Medicare and Medicaid patients.

At AccentCare, this includes:

• Care from the whole hospice team – This includes physicians, team directors, visiting nurses/nurse case managers, home health aides, chaplains, licensed clinical social workers, and board-certified music therapists.
• Medical equipment – This includes items like hospital beds, wheelchairs, shower chairs, oxygen equipment, and so forth.
• Medications related to the diagnosis – Medications are not discontinued by hospice providers, but it’s up to each patient what they want to take.
• Medications related to comfort – We don’t want the patient to be uncomfortable so medications to prevent constipation, shortness of breath, nausea, etc. are also covered.

Commercial (private) insurance is different. Check your policy carefully, as your coverage depends on what your employer has chosen to buy. There are over 200 hospice providers in the Chicagoland area, which are all Medicare hospice service providers and all offer charity hospice care for people who are uninsured, underinsured, or undocumented. No provider wants anyone to forgo hospice care because of the inability to pay.

Myth #8: Hospice stops providing food and water to patients.

Fact: Hospice providers do not tell patients to stop eating or drinking or deny food or drink. But, as part of the natural dying process, many patients simply stop wanting food or drink anymore or get too weak to swallow. Often patients have cravings, which can certainly be indulged.

Myth #9: Choosing hospice care means giving up control.

Fact: Patients and families remain in complete control. They can decide whether they want hospice and which hospice provider to use. Once a patient comes on to hospice care, it is not permanent. They can go off hospice care at any time by revoking, or can transfer to another hospice provider if they want. The patient dictates their own plan of care.

Myth #10: Hospice care ends with the passing of the patient.

Fact: AccentCare supports its patients’ families for 13 months after the patient has passed away. The team is available to help with arrangements, provide grief support, make periodic bereavement support phone calls, recommend and facilitate support groups, and more. All the ‘firsts’ are very hard within the first 12 months, so there’s always someone available to talk.

How to Find a Hospice Provider in Your Area

There are well over 200 hospice providers in the Chicagoland area. Talk to your doctor’s office for recommendations—nurses are often happy to share their recommendations. You can also ask your neighbors, family, friends, or senior care organizations like Open Arms Solutions. All hospice providers follow the same guidelines, but there are certain differences between providers. For example, not all include music therapy. As with anything else, it’s important to shop around to find the best fit.

For more information about hospice care, feel free to contact Open Arms Solutions or AccentCare—we are here to help.