An Overview of Hospice

When and How to Find the Best End-of-Life Care

Hospice is a specialized form of medical care that seeks to provide comfort and optimal quality of life for those facing a life-limiting illness or terminal diagnosis. A person in hospice receives individualized care that addresses not only their physical needs but their emotional, social, and spiritual needs as well.

While advances in life-extending medical treatments and technologies have made impressive strides, there are still times when a person either cannot or will not pursue efforts to manage their condition. In cases like these, people will often seek the means to make the time they have left as optimal as it can be. This might, for example, include navigating emotional challenges or managing pain. This is when hospice can be of great service.

If faced with such a decision, it is important to know exactly what hospice care is and the services it can provide to you and your family.

Hospice is not necessarily a place or an institution where you go. It is a philosophy of care that addresses the needs of patients and their loved ones when life-extending treatments are no longer beneficial or desired.

Services and Benefits

Hospice care is typically provided wherever the patient lives. It may their home or in a nursing home, assisted-living center, hospice inpatient facility, or even a hospital.

Regardless of the location, care will be delivered by both trained hospice volunteers and an interdisciplinary team of health professionals (including doctors, nurses, social workers, hospice aides, and others).

The hospice services offered in the United States are largely defined by the Tax Equity and Fiscal Responsibility Act of 1982. In accordance with the law, services rendered under the Medicare Hospice Benefit may include:

  • Physician participation: The patient's regular physician will usually oversee care in coordination with the hospice medical director.
  • Nursing services: A hospice patient is typically assigned a case-manager nurse who visits one to three days a week. An on-call nurse is also available to hospice patients for up to 24 hours per day when needed.
  • Laboratory tests: Blood tests, X-rays, and other necessary diagnostic studies are provided as part of hospice services, the frequency of which is consistent with standard medical practices.
  • Medical equipment: Hospice provides the equipment necessary for a safe, comfortable, and caring environment. These might include a hospital bed, wheelchair, adult diapers, bandages, or disposable latex gloves.
  • Medication: Hospice typically covers all medications related to the patient's diagnosis as well as those intended to control pain and other symptoms.
  • Therapy: If appropriate, hospice can provide a physical, occupational, or speech-language therapist to assist with patient care.
  • Social services: Hospice patients are assigned a certified social worker to assist them and their families with practical and emotional needs.
  • At-home assistance: A hospice home health aide can help patients with their personal care (such as bathing or dressing) or assist caregivers with chores and other responsibilities. Services are typically delivered two to three times per week depending on need.
  • Counseling services: Hospice patients and their families can receive dietary counseling, pastoral or spiritual support, and grief counseling when requested. Hospices must also offer bereavement counseling to family members and caregivers for a minimum of one year following their loved one's death.
  • Respite care: Respite care is a temporary, short-term assistance program designed to help caregivers avoid stress and burnout.

The hospice team will continually evaluate the patient's condition and revise their care plan as needed.

Hospice care also provides practical support to family members and loved ones during this difficult time. The team can assist with funeral planning or memorial services.

Common Misconceptions

Many people regard hospice as a service available to only those with end-stage cancer. According to the National Hospice and Palliative Care Organization (NHPCO), however, the majority of people admitted to hospice in 2017 had a non-cancer diagnosis, such as one for heart disease, lung disease, stroke, or coma.

Another widely held misconception is that those entering hospice have given up hope or "want to die." In fact, the role of a hospice professional is not to hasten death or "help someone die," but rather to help those with a terminal illness have the highest possible quality of life when there is either no reasonable chance for a cure or they choose not to seek further curative treatment.

The overall mission of a hospice provider is to affirm life. By viewing death as part of a natural process, patients are allowed to spend the remainder of their days as fully and as comfortably as possible.

Palliative vs. Hospice Care

The terms palliative care and hospice care are often used interchangeably, but they are not the same. While both focus on reducing pain and improving the overall quality of life, palliative care can be administered at any time and for as long as deemed necessary for someone dealing with a chronic or life-threatening condition.

For example, someone with stage 4 breast cancer might receive palliative care to treat the side effects of the very treatments (such as chemotherapy or radiation) used to extend life. The same might apply to someone with secondary progressive multiple sclerosis, advanced Alzheimer's disease, or stage 4 emphysema.

In contrast, hospice care is a more limited-duration form of care, as it is for those known to be approaching the end of life. It is possible that a patient may transition from palliative to hospice care at some point.

A doctor can help you understand if palliative or hospice care is more appropriate for you or your loved one, and the decision will hinge on the patient's condition and needs.

Qualifying for Care and Covering Costs

According to the NHPCO, the cost of hospice care for the majority of Americans is paid through their Medicare Hospice Benefit.

To be eligible for the benefit, you or your loved one must:

  1. Qualify for Medicare Part A
  2. Be diagnosed as terminally ill with a prognosis of six months or less by a licensed physician

Medicare defines four levels of hospice care:

  • Routine care
  • General inpatient care
  • Continuous care
  • Inpatient respite care

Prior to admission, the treating doctor and hospice provider will select the level appropriate to the individual's needs. As those needs change, the level of care can be adjusted.

A doctor can recertify a patient for the Medicare Hospice Benefit if their condition continues to decline but they had lived longer than six months.

Medicaid

In addition to Medicare, many private health insurance plans offer hospice benefits, as do state Medicaid programs. Because the benefits can vary from one insurer or policy to the next, it is important to understand what is and is not covered under your plan.

This is especially true with regard to Medicaid. While many assume that Medicaid works in the same way as Medicare (since they are regulated by the same federal agency, the Centers for Medicare and Medicaid Services), what is offered can vary by state.

The Medicaid Hospice Benefit is an optional state plan for low-income individuals or those with a disability. While all states offer some form of hospice benefit, some place a limit on what you can receive, while others require a copayment for services.

To qualify, you must file an election statement waiving further treatment of a terminal condition. The only exception is for people under 21 who can opt to receive both hospice and ongoing curative treatment. If you do decide to waive treatment, you can always change your mind at a later date and resume receiving Medicaid-covered benefits.

Medicaid coverage can also be used alongside your existing Medicare coverage if you qualify for both. Having one does not waive the other, although Medicare generally pays first.

To better understand what is offered in your state, call the Medicaid office in your region and speak with a representative.

Private Insurance or No Insurance

If you have private insurance or obtained your coverage through work or the Health Insurance Marketplace, check your plan to see how long your benefits last (some limit hospice care to 45 days) and if your desired providers are in-network or out-of-network.

If you have no insurance and do not qualify for Medicare or Medicaid, there are hospices that offer a sliding scale fee schedule based on your financial situation. There are also non-profit hospices that cover many of the costs through charitable donations or by obtaining subsidies for eligible individuals.

Regardless of your insurance status, do not hesitate to inform a hospice agency about your circumstances and ask what services are available to you.

Making an Informed Choice

A person is generally ready for hospice when they decide to pursue treatments meant to provide comfort rather than cure a life-limiting illness. With that said, there are pros and cons to entering a hospice program.

On the one hand, you are provided with a comprehensive, interdisciplinary team of professionals, the cost of which may be fully covered by insurance. On the other, not all hospice programs are created equal.

Because hospices are paid a flat per-day fee by insurers to provide all necessary care, the services (and quality of services) can vary significantly by facility.

It is important, therefore, to explore all of your options with as many hospice providers as possible. You should work closely with your physician or seek the guidance of patient advocate experienced in hospice care.

Do not hesitate to interview hospice staff thoroughly, asking as many questions as needed to make an informed choice. Among the questions you should ask:

  • Do you accept my insurance?
  • What hospice services do you provide? Are they covered?
  • How will the hospice team coordinate care with my doctor?
  • Do you deliver services after business hours?
  • Will I have the same hospice nurse throughout my care?
  • How many patients are assigned to each hospice nurse?
  • What other members of the team might I see? How often?
  • How long has the hospice team been serving patients?
  • How will you manage my pain and other symptoms?
  • Can I go to the hospital if my symptoms are uncontrollable?
  • Will you have a hospital bed available for me if needed?
  • How will you keep me and my family informed about my condition?
  • Will my family and I be involved in making care decisions?
  • How will you prepare me and my family for what to expect? 

To find hospice providers near you, speak with your doctor or contact your health insurance company for a list of in-network providers. You can also do an online search using the care provider locator managed by the NHPCO.

A Word From Verywell

A move to hospice is not always an easy transition, and it may take time before a decision is made. And that's OK. By opening a discussion with your doctor or a hospice agency, you can begin to consider what is best for you and your family in your own time. Still, the earlier that someone with a life-limiting condition accesses hospice care, the greater the benefits they are likely to receive—including peace of mind.

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