Hospice Care

An important aspect of end-of-life planning is care in the patient’s final stages of life, very likely a period of extreme emotional stress for the patient and their loved ones. Most hospitals and nursing homes, overburdened as they are, will not provide an adequate level of comfort and sensitivity. Thankfully, there is an alternative; hospice care is a specialized form of care and services tailored to the needs of the terminally ill, as well as the people who are closest to them.

How do you find hospice care providers? Do most medical plans cover hospice care? How do you know if you are eligible for hospice services? Read this section of Seven Ponds for the answers.

• Approximately 1.5 million Americans receive hospice care annually, and about 1.2 million of them are Medicare beneficiaries.
  
• Many people wait longer than necessary before seeking hospice care. The patient, family members, or closest friends should inquire about hospice services well before actual care is needed.
• Most hospice care is covered by the Medicare Hospice Benefit, the Medicaid Hospice Benefit, and by many private insurers.
• Medicare, Medicaid, and most private insurers cover hospice care when the patient has a life expectancy of six months or less. However, hospice care may be provided for longer than six months, depending on the course of the illness.
• Hospice care, a service generally employed to ease the suffering of the terminally ill, as well as their family, is a distinct subset of palliative care, an accredited medical service offered in many hospitals that can be employed in conjunction with curative treatments.

The goal of hospice care is to relieve painful symptoms and attend to comfort and emotional needs during the last months of an incurable disease. Care may be administered at an inpatient facility or at the patient's residence, including a nursing home. Hospice services include doctor and nursing care, home health-aid care, homemaker services such as washing and cleaning, equipment such as wheelchairs or walkers, medical supplies, drugs for symptom control and pain relief, short-term hospital care, social work services, dietary counseling, physical therapy, and grief support for the patient and family members. For more detailed information about covered hospice services, you can refer to this free, downloadable guide to Medicare Hospice Benefits.

Hospice care begins after a patient, family member, or primary physician requests services from a local hospice. Unfortunately, many people go longer than necessary before seeking care, either because the patient or their family is unaware of the option, or because the primary physician is unaware of the patient’s choices. Advance planning can considerably improve the transition to hospice care. It is often the case that the patient or the family initiates this conversation with the physician. We suggest you do so well before care is actually needed, so that you are prepared to take full advantage of hospice care once the time comes.

When the patient’s physician determines the time for hospice care has begun, hospice services typically begin within a day or two. In urgent situations, service may begin sooner. Long holiday weekends and major holidays may delay immediate access to hospice care, so advance planning is extremely important. Hospice care can be provided in a hospital, in the home, or in a nursing home.

Hospice care is covered under the Medicare and Medicaid Hospice Benefit when the patient has a life expectancy of six months or less, but hospice care may be provided for longer than six months depending on the course of the illness.

Approximately 1.5 million Americans of all ages receive hospice care annually. 1.2 million of these recipients have their hospice care covered by Medicare and Medicaid. About one-third of older Americans use hospice services, according to a recent study by the National Hospice & Palliative Care Organization. Hospice patients typically have diseases that impose high burdens of caregiving on family and friends, such as cancer, kidney disease, and Alzheimer’s disease. For this reason, hospice teams often attempt to assist the family as well as the patient.

Hospice care is available for all terminally ill patients in nursing homes, but unfortunately it is not always employed to its fullest extent of usefulness. It is extremely important that the patient and/or the patient’s family make a preference for hospice services known to the nursing home staff and to their physician, and follow-up to ensure that they are received. A study published in the July 2005 Journal of the American Medical Association noted that hospice services are underutilized at nursing homes, because physicians are often unaware of their patients’ end-of-life hospice care preferences. With a little follow through, you should be able to ensure the care that you or your loved one is entitled to.

Most hospice services are covered by the Medicare Hospice Benefit, the Medicaid Hospice Benefit, and by many private insurers. If you or someone in your family currently needs or anticipates needing hospice care, either at an inpatient facility or at home, you should contact Medicare, Medicaid, or your health insurance provider to determine eligibility and coverage.

No. Medicare, Medicaid, and private insurance providers typically cover hospice services, so neither the patient nor the patient’s family should receive any bills directly from their hospice care provider.

Hospice is a large and growing industry, and there are nearly as many different types of providers as there are types of patients. It is important that you choose a hospice provider that can best accommodate your specific requirements, based on your location, your medical needs, and your insurance coverage. There are a few ways to go about beginning this process:

• You can request that your physician or hospital discharge planner provide you with a referral to nearby hospice services.
• You can ask your friends or relatives who have experience with hospice if they can recommend a provider they had a good experience with.
• You can also contact one of several national organizations, such as the National Hospice & Palliative Care Organization, Compassion & Choices, and the National Association for Home Care & Hospice, to help you find support or locate a licensed provider in your area that will meet your specific needs.

Here are some things you should consider when choosing a hospice provider:

• The location of the staff: This might be the most important thing to consider, especially if you are receiving hospice care in your home. Ideally, the hospice staff, such as an on-call nurse, should be available to meet your needs within a short window of response time. How far away are their nurses and primary facilities located? How quickly can you expect care in the event of an emergency?
  
  
• What kinds of medical professionals do they employ? Ideally, the hospice should have a medical director, a case manager nurse, a home health aide, and a social worker or chaplain, employed full-time and available on an on-call basis. A ready staff of volunteers is another good indication of a high quality practice.
  
  
• Pharmaceutical options and availability: Which pharmacies do your hospice providers use, and how close are they to your home? You should be able to access your medication 24 hours a day and 7 days a week, so it is preferable that the pharmacy is easily accessible from your care site, in case you want to pick up some of the medication yourself.

For a list of hospice services in your area with user reviews, you can reference www.wheretofindcare.com and search under the category “Hospice”.

There are four basic levels of hospice care, which all hospice facilities are required to provide (with some limited exceptions). These stipulate what kind of care the hospice patient will receive and are based on that patient’s need. Therefore, a patient can move through the different levels as their illness progresses or reverses.

• Routine Home Care: Defined as when a patient is at home with symptoms controlled. They will have access to services such as registered nurses, social worker and chaplain visits, home health aide services, counselors, medication, and equipment.
  
  
• Inpatient Care: A hospice patient may require inpatient care in a hospice facility or local hospital when their symptoms are no longer manageable by the family or with routine home care.
  
  
• Respite Care: Many hospice patients require round the clock care by their caregivers, their family or friends, and this can be an exhausting and draining procedure. When the caregivers need a break, and if the patient’s symptoms are under relative control, the patient can be moved to an inpatient facility, in accordance with applicable Medicare or Medicaid regulations, and can stay for up to five days before being transferred home.
  
  
• Continuous Nursing Care: The patient will receive continuous nursing care, similar to inpatient care, if their symptoms are out of control and they choose to stay at home. This should be analogous to the care they would have received at an inpatient facility. However, there is an exception: if the hospice is located in a rural or non-metropolitan area and has less than seven employees, or they are understaffed to provide continuous nursing care, they are not required to provide continuous nursing care.

Hospice services are required by law to honor advance health care directives concerning patient preferences or to inform the patient and their family if they are unable or unwilling to do so. If there is a question about patient care, and there are no written directives and the patient is unable to make the choice, hospice providers will consider information obtained from the patient at the time of admission or during the course of treatment. Alternatively, they will ask the patient’s health care proxy to provide the patient’s previously expressed preferences.

If you have advance health care directives, such as a living will, durable power of attorney for health care documents, or do-not-resuscitate order, be sure to provide copies to your hospice worker at the time of admissions. Give these documents to your primary physician if you have not already done so. If you have no written directives for care, you should communicate your wishes both to your surrogate decision-maker and to your hospice worker at the time of admission. For more information, see our article on Advance Health Care Directives.

Center to Advance Palliative Care
New York, NY
(212) 201-2670
www.capc.org

National Hospice & Palliative Care Organization (NHPCO)
Alexandria, VA
1-800-658-8898
www.caringinfo.org

Canadian Hospice Palliative Care Association
Ottawa, ON
1-800-668-2785
www.chpca.net

Free downloadable guide to Medicare Hospice Benefits:
www.medicare.gov/publications/Pubs/pdf/02154.pdf