Hospice Care

Hospice care is intended for people with a life-limiting illness who have a life expectancy of less than six months and have decided to forgo ongoing curative treatmentTreatment that is meant to cure the disease itself as opposed to masking the symptoms; in the case of lung cancer, killing or removing all lung cancer cells.

The overall goal of hospice care is to provide comfort, both physical and spiritual, for the patient and the patient's loved ones and caregiver(s).1,2

Hospice services help patients and their loved ones and caregiver(s) identify what is most important to them in terms of living their remaining time to the fullest, as defined by the patient. Hospice care is characterized by compassion for the patient and the patient's loved ones and caregiver(s), and maximizing quality time. Hospice care also focuses on meeting the patient’s and the patient's family’s goals and wishes around the patient's death.1,2,3

It is a good idea for patients and their families to learn about all available treatment options, including hospice care, early in the treatment process. This will allow a smoother transition from curative treatment to hospice care if hospice should be needed in the future. The decision to go into hospice care can be reversed at any time, for any reason, without penalty.7

Hospice care may be provided in various locations, including the patient’s home, free-standing hospice centers, hospitals, nursing homes, and other long-term care facilities.1,3

Who pays for hospice care?

Hospice is covered by Medicare, Medicaid, the Veteran's Health Administration, and most insurance companies. Before choosing to enter hospice care, patients and their families need to have a full understanding of what their insurance benefit provides and what services would be available. There are some options for those not covered by insurance as well. A thoughtful discussion involving the patient, the family, and members of the patient’s healthcare team will be helpful in making the hospice care decision.3,4,5,6

Referral to hospice care

A patient must be referred to hospice. This can be done by any member of the patient's healthcare team, but it is usually done together with the primary care physician or the specialist managing the terminal illnessDisease that cannot be cured and will cause death. A doctor must make the official determination that the patient meets qualifications for the hospice benefit, usually using clinical guidelines. A hospice doctor must also certify the patient's terminal illness. No matter when or how the decision is made, it is never too late to consider or request hospice care.1,2

Who is on the hospice care team?

Typically, the hospice care team includes the patient's own doctor, the hospice doctor, nurses, social workers, home health attendants, clergy members, trained volunteers, and possibly physical, speech, and occupational therapists. The focus of the care is symptom management and ensuring that pain is well controlled. The delivery of hospice care is ultimately a combination of professional services provided by the hospice, together with the support of friends, family, and volunteer services.1,8

What services does hospice provide?

Hospice services may include, as appropriate and needed, these services:2,8

  • Visits by members of the hospice care team to wherever the patient is
  • Medications to manage pain or other symptoms
  • Necessary medical equipment (e.g., wheelchairs), supplies (e.g., catheters,) and drugs
  • Services such as physical, occupational, and speech therapy
  • Short-term inpatient care if:
    • symptoms or pain are too difficult to manage if patient is at home or
    • if the caregiver needs a respite (temporary break from caregiving)
  • Nutrition counseling
  • Guidance to loved ones on caring for the patient
  • Grief and loss counseling to the patient and to loved ones

A good resource for more information about hospice care is the National Hospice and Palliative Care Organization's website:  https://www.nhpco.org/.

Questions to ask your healthcare team about hospice care

The National Hospice and Palliative Care Organization suggests asking the following questions when considering a hospice provider.

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Is the Hospice Medicare-certified?

Most hospices are certified by Medicare and are, therefore, required to follow Medicare rules and regulations. This is important if patients wish to receive hospice care as part of their Medicare/Medicaid coverage.

Has the hospice been surveyed by a state or federal oversight agency in the last five years?

Ask when the last survey was and if any deficiencies were noted and, if so, whether they have been resolved.

Is the organization an NHPCO member and does it comply with all aspects of NHPCO’s Standards for Hospice Programs?

Also find out whether the organization has completed the Standards Self-Assessment and, if so, how recently.

Is the hospice accredited by a national organization?

Several organizations accredit hospices, surveying them to ensure they meet quality standards. Hospices are not required to be accredited, but accreditation can be a reflection of a commitment to quality.

Does the hospice conduct a family evaluation survey?

Many hospices ask family members to complete a brief evaluation of their services after the death of a loved one. It is helpful to see their most recent scores to find out how previous family members have rated their services.

Does the hospice own or operate a care facility to provide home-like care in a hospice residence, hospital or nursing home?

This may be important if the care needed is complex and/or family caregivers cannot care for the patient at home.

Are clinical staff (physicians, nurses, social workers) certified or credentialed in hospice and palliative care?

There are several credentials that hospice professionals can attain based on their knowledge of hospice/palliative care and their educational experience.

What services do volunteers offer, and if requested, how quickly will a volunteer be available?

Volunteers can provide a variety of services including friendly visits, light household chores, running errands, personal care, etc. If you want a hospice volunteer, be sure to ask how quickly the organization matches volunteers to meet the patient's needs.

Will staff come to the home if there is a crisis at any time of the day or night and on weekends? Who is available to make the home visit (nurses, doctors, social workers, chaplains)?

Hospice staff are available by phone 24 hours a day, seven days a week. However, some hospices offer limited in-home support on nights and weekends, while others are able to send staff out to a patient’s home no matter when a crisis arises. Frequently a nurse is the best person to make a visit if it is a medical crisis; however, sometimes the crisis is best handled by a physician, social worker, chaplain or another member of the team. Ask if all members of the team are available in a crisis situation during nights and weekends.

If the patient needs to go to a hospital or nursing home, with which ones does/doesn’t the hospice work?

If the patient has a preferred hospital or knows that he or she may need to go to a nursing home, it’s important to find out which ones the hospice has contracts with so they can continue to provide the patient's hospice services in this different setting.

What “extra” services does the hospice offer?

All hospices provide medical care, emotional and spiritual care, medicines, medical supplies and equipment, volunteers, and grief support after the death of a loved one. In addition to these services some hospices offer specialized programs for children, people with specific diseases, “pre-hospice” care for individuals not yet medically ready for hospice care, and other extra services that may benefit the patient's family.

How long has the hospice been operating in the community?

Again, length of time in the community may be important to the patient and his or her family.

How many patients are assigned at any one time to each hospice staff member who will be caring for the patient?

Some hospices assign a certain number of patients to each staff member and may be willing to share that information. That might influence the decision to receive care from a particular hospice.

What screening and type of training do hospice volunteers receive before they are placed with patients and families?

All volunteers must receive training or orientation on hospice care. Some hospices provide specialized training related to bereavement, pediatric care, nursing home care, etc.

How quickly can the intake/admissions staff come to begin the admissions process? Is someone available at nights or on weekends?

Some hospices are able to begin the admissions process and have the patient begin hospice services at night or on weekends. If a patient is referred to hospice late in the day or on the weekend, a hospice’s ability to start services quickly might be very important.

What is the organization’s governance structure?

Whether or not the organization is a non-profit, for-profit, government, faith-based or part of a larger health care organization may be important to the patient and his or her family.

Updated July 1, 2019

References

  1. Choices for Care When Treatment May Not Be an Option. National Cancer Institute website. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices. Updated September 19, 2018. Accessed June 29, 2019.
  2. What is Hopsice? Hospice Foundation of America website. https://hospicefoundation.org/Hospice-Care/Hospice-Services. Accessed June 29, 2019.
  3. How and Where is Hopsice Care Provided and How Is It Paid For? American Cancer Society website. https://hospicefoundation.org/Hospice-Care/Hospice-Services. Revised May 10, 2019. Accessed June 29, 2019.
  4. Is my test, item, or service covered? Hospice care. Medicare.gov website. https://www.medicare.gov/coverage/hospice-care. Accessed June 29, 2019.
  5. Geriatrics and Extended Care: Hospice Care. U.S. Department of Veterans Affairs website. https://www.va.gov/GERIATRICS/Guide/LongTermCare/Hospice_Care.asp. Accessed June 29, 2019.
  6. Paying for Care. Hospice Foundation of America website. https://www.va.gov/GERIATRICS/Guide/LongTermCare/Hospice_Care.asp. Accessed June 29, 2019.
  7. How to Access  Care. Hospice Foundation of America website. https://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with-Terminal-Illness/How-to-Access-Care. Accessed June 29, 2019.
  8. Hospice  Care. National Hospice and Palliative Care Organization. https://www.nhpco.org/hospice-care-overview/hospice-faqs/. Updated February 20, 2019. Accessed June 29, 2019.

 

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