Hospice is a scary word for many caregivers and their loved ones. However, there is nothing to fear from hospice unless you understand what it means. Hospice care is all about comfort and support. Yes, it is end-of-life care, but it’s also compassionate and necessary for many patients and their families. 

In this article, we’ll address several important facts about hospice myths, misconceptions, and truths, including: 

• What hospice is
• How hospice differs from palliative care
• Who hospice benefits
• Where hospice care takes place
• What hospice care includes
• When it’s time to think about hospice and how to talk about it

Trualta offers many more resources on topics related to care and caregiving. Check to see if you have free access. 

What Is Hospice? 

Hospice is a type of end-of-life care. There are no definite rules, but it’s generally for patients with serious illnesses who have a life expectancy of less than six months. 

Patients and their families turn to hospice services when a cure isn’t possible or when they are ready to stop aggressive, curative treatments. Whenever possible, it’s provided in the home or in a nursing home if that is where the hospice patient lives. 

The goal of hospice service is to boost quality of life with comfort and support. Hospice care includes symptom management, emotional support, spiritual support, information and resources, and end-of-life planning. 

What Hospice Providers Want You To Know

Hospice care has a negative stigma. Many people feel uncomfortable talking about it. This discomfort is based on misconceptions about what hospice is. 

When you and your loved ones know more about hospice, you can talk about it more freely and make informed decisions. These are some of the important facts that hospice care teams wish more people knew.

Hospice & Palliative Care Are Two Different Things

Many people think the terms palliative care and hospice can be used interchangeably, but they are, in fact, different. Palliative care improves quality of life for patients with serious illnesses. Patients receive palliative care at any stage of a disease or illness. 

Palliative care is an important part of hospice care, but it exists outside of hospice. Patients receiving palliative care may recover from their conditions. They often receive this type of care while also going through aggressive or curative treatments. Patients in hospice have typically stopped receiving curative treatment. 

Hospice Isn’t About Giving Up

Choosing hospice for a loved one does not necessarily mean death is imminent. It’s not a place to speed up the process of dying. A doctor suggesting hospice does not mean they’re giving up on providing care and medical treatment. 

It’s end-of-life care, but this doesn’t mean giving up hope. It means shifting focus from curative treatments to comfort and support. But the control is always in the hands of the patient. They can change the care plan and treatment strategy. 

In one sense, hospice does mean giving up. It means giving up the pursuit of aggressive, painful treatments. This gives patients and their families permission to slow down and change the focus to quality-of-life care. 

Hospice Doesn’t Take Away The Need For Caregivers

Hospice is not round-the-clock care. When your loved one enters hospice care, they will still need their reliable caregivers and home health care aides. This includes people receiving care at home or in a nursing home or other residential facility. 

Care recipients still need their family caregivers for personal care, companionship, and assistance with daily tasks. Hospice is a separate type of healthcare service. 

Many Types Of Patients Benefit From Hospice Care

A common myth about hospice is that it’s for elderly patients and cancer patients. Anyone with a serious, terminal illness at any age can potentially benefit from this kind of care. Some examples of diagnoses people in hospice have include: 

• Cancer
• Alzheimer’s disease
• Parkinson’s disease
• Heart disease
• Cirrhosis
• Amyotrophic lateral sclerosis (ALS)

Hospice eligibility is not a strict set of rules, but it’s ultimately determined by a hospice physician and a patient’s regular physician. A patient can also decide, along with their loved ones, if hospice is the next best step. Insurers, including Medicare, have some specific guidelines for who qualifies. 

Hospice Benefits Families & Caregivers Too

Hospice care is primarily for the patient, but their loved ones and primary caregivers can also benefit. For the patient, hospice includes symptom management, emotional and spiritual support, and end-of-life planning. 

Family members are encouraged to be involved in many aspects of hospice. Caregivers can benefit from advance care planning, financial guidance, and end-of-life planning. They can also get involved in therapy and spiritual guidance. 

All of these supports help family members cope with grief and loss. They also make it easier for loved ones to help the patient reach the end of their life peacefully. 

Hospice Is A Type Of Care, Not A Place

Your loved one may choose a dedicated hospice facility, but this isn’t the only option. Hospice is a type of care provided by a hospice team. They can work in a nursing home, hospital, residential facility, or in a patient’s home. 

There are many factors to consider when choosing where hospice care will take place. Many people prefer to stay home. This allows them to feel more comfortable and to visit with family and friends. Other considerations include cost and the individual’s specific care needs. 

Hospice Is Much More Than Just Pain Management

Pain management is a big part of hospice care. Many people falsely assume that this is all it offers. Another related misconception is that all patients in hospice automatically get morphine or other serious pain medications. 

Managing symptoms with appropriate medical care is essential for bringing comfort to patients during end-of-life care. But, it’s just one part of the service. Some of the other aspects of hospice care are: 

• Emotional support and mental health care, like therapy
• Physical or occupational therapy
• Mobility devices and other types of medical equipment to improve quality of life
• Guidance for advance care planning and making financial and legal decisions
• Family therapy and meetings to keep everyone informed
• Care coordination
• Respite care for the caregivers
• Bereavement care for loved ones and caregivers

Many different professionals are involved in hospice care teams: hospice aides and nurses, physicians, social workers, therapists, and financial and legal experts. Many teams and facilities also have hospice volunteers who provide companionship or personal care. 

Hospice Care Is Tailored To Each Patient

Hospice care teams plan patient care based on each individual’s needs and preferences. Hospice providers work closely with patients, their families, and caregivers to determine appropriate services. 

Care plans are also not permanent. Hospice professionals continually evaluate patients, taking into account their changing symptoms and preferences and changing the plan as needed. 

Hospice Is Covered By Most Insurers

Everyone should be able to access and afford good end-of-life care. A hospice physician and another doctor, usually the patient’s primary physician, determine if a patient qualifies. Qualifying older adults should have a Medicare hospice benefit under regular Medicare or Medicare Advantage. 

Most private insurance plans also cover hospice care. Medicaid coverage varies by state programs, but most include hospice as a covered service. Veterans enrolled in the VA healthcare system are covered for hospice. 

When Is It Time For Hospice Services? 

Patients are usually eligible for hospice care when a doctor believes they have six months or less to live. Many people wait until they only have a few weeks or even days. There is no reason to wait when your loved one could begin benefitting from hospice sooner. The right care can make a patient’s final months more enjoyable and meaningful. 

With a better understanding of what hospice is and provides, it’s easier to make the decision. Your loved one or care recipient should make this choice with their medical team and with family. 

Hopefully, your loved one’s medical team will bring up the idea of hospice. If they don’t, it’s important to ask. These are some signs your loved one with a terminal illness may be ready for hospice:

• Their illness is getting worse, or treatment options have been exhausted
• They have been hospitalized frequently
• They have recurring infections
• Their ability to function continues to decline
• Their symptoms are becoming worse and causing them more distress
• You and other caregivers are finding it more difficult to care for them

Remember that hospice is end-of-life care. It’s only an option if your loved one is not expected to recover and a physician believes their time is limited. 

How To Talk To Your Care Recipient About Hospice

Hospice is difficult to talk about. It means talking about end-of-life decisions, which people often don’t want to consider. Misconceptions about what hospice means also makes these discussions more difficult. 

Talk to your loved one along with other people they care about and trust. Make an appointment to speak to their doctor about hospice and other options. When talking to someone about hospice, it’s important to be patient and respectful of their questions and worries. Encourage them to come up with questions they want to ask their doctor.   

You may want to talk to your loved one about hospice first or wait until you meet with their doctor. The decision depends on your unique situation and relationship. 

Hospice can be a difficult choice, but it has many benefits for eligible patients and their families. There is no reason to wait if their doctor thinks it is a good time to start hospice. Learn more, help your loved one get more information, and come together to make a choice in their best interests.  

Trualta offers many more resources on topics related to care and caregiving. Check to see if you have free access. 

References

1. https://hospicefoundation.org/what-is-hospice/
2. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care
3. https://hospicefoundation.org/how-to-pay-for-hospice/
4. https://www.nia.nih.gov/health/hospice-and-palliative-care/frequently-asked-questions-about-hospice-care