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Understanding the Medicare hospice benefit

by Terre Mirsch

While attending a national hospice conference a few years back, I recall listening to Mary Labyak, one of the earliest pioneers of hospice care in our country. I’d heard Mary speak previously and, although I never had the honor of knowing her, she was a mentor for me throughout my career. Mary stated, “When you’ve seen one hospice, you’ve seen one hospice.” I was puzzled for a moment but quickly understood—and she was certainly correct in her declaration. Hospices across the country were continuing to find new and innovative ways to deliver services, developing programs that meet the unique needs of their communities. One is as different as the next. Some hospices are small, focused on providing care within a small geographic area, while others are large with a nationwide reach. Some service urban environments while others meet the challenges of servicing rural communities. Some are not-for-profit providers, some are for-profit, and others are government sponsored. It can be a challenge to navigate through the array of programs that may be available to you, and for this I refer you to my prior blog “Choosing a hospice: Finding the right program for you and your loved one.”

But caregivers can also take comfort in knowing that there are some things that are certain and consistent across all hospice programs. The Medicare Hospice Benefit was made permanent by Congress in 1986, defining hospice standards and required services in order for a program to obtain federal certification. Additional licensure requirements exist in most states. Accreditation organizations also have standards that define standards for service and quality. All recognize that as illness progresses, a variety of support services are necessary in order to adequately support patients and families who are facing life limiting illness. All recognize the need for bereavement support following loss. These services provide advantages that other types of care may not in the face of serious illness.

Where can care be provided?

Hospice services are typically provided in the home, or home-like setting with “home” being wherever the person lives—whether a house or apartment, a long term care facility, personal care or assisted living facility, boarding home, or a homeless shelter. Some hospices have residential hospice units or houses that provide 24 hour care, for which there may be room and board charges. If acute medical problems requiring frequent skilled care and intervention, inpatient care can be provided in a hospice inpatient unit for a short period of time.

Does my loved one need to be homebound?

No. Unlike the home care benefit, there is no requirement that those receiving hospice care be homebound, nor is here a requirement for skilled care. Hospice is about living each day to its fullest, and we encourage people to engage in activities outside of the home when possible.

What services will be provided?

Hospice care is designed to support caregivers through the provision of holistic, intermittent services and assistance. At the heart of hospice care is the interdisciplinary team that provides, or arranges for, needed care and services. Which care and services are provided is determined by a plan of care that is developed by the patient, family, physician, and hospice team.

Hospice team members include:

  • Your loved one’s physician
  • Hospice Medical Director or physician
  • Nurses
  • Social workers
  • Counselors, including pastoral, dietary, and bereavement counselors
  • Hospice aide or homemaker services
  • Physical, Speech, and Occupational Therapists
  • Volunteers

Other services that are provided by Medicare certified hospices include:

  • 24 hour/7 day a week on-call availability
  • Medical Equipment and supplies related to the management of the life limiting illness
  • Medications and biologicals related to the life limiting illness, as necessary for symptom control
  • Bereavement services for family members

Some hospices offer additional services, not required by state or federal regulations. Additional supports may include complementary or integrative therapies such as bodywork therapies (massage, reflexology, energy therapies, or acupressure to name a few) or healing art therapies (such as music, art, pet, or horticultural therapies). Those providing these services are integral members of the hospice interdisciplinary team. Holy Redeemer Hospice is especially well-known for these complementary therapies.

What options are available if I need a break from caregiving? What if my loved one’s symptoms cannot be managed in the home setting?

Hospice care is provided at one of four levels of care based on criteria established under the Medicare Hospice Benefit. Other insurance providers may have provisions for similar care options. While most hospice care is provided at the ‘routine’ level of care, caregivers often take comfort in knowing that there are other options available if their loved ones condition requires a higher level of care or if they need a break from caregiving.

Routine Home Care includes intermittent visits by members of the hospice team in your home.

Inpatient Respite Care is provided in a hospice-contracted facility to provide relief for caregivers for a maximum of five consecutive days on an occasional basis.

General Inpatient Care is short-term care in a free standing or hospice-contracted facility for management of pain and symptoms that cannot be controlled in the home setting. Eligibility for inpatient care is determined daily, based on the continued presence of unmanaged symptoms and frequent changes to your loved one’s treatment plan.

Continuous Home Care can be provided during periods of medical crisis in your home.  Continuous Home Care can be provided for 8-to-24 hours a day, but must require the skills of a licensed nurse for more than fifty percent of the time. Continuous Home Care cannot be utilized to provide routine custodial care.

Throughout our life span our care needs change, with care at end of life care being no exception. Understanding the benefits that are available to you and your loved one is essential for ensuring the necessary support and guidance throughout the caregiving journey. For more information regarding the Medicare Hospice Benefit, you can also refer to the official Centers for Medicare and Medicaid Services booklet Medicare Hospice Benefits.

5 Comments Post a comment
  1. why can’t i find hospice care for my brother? i am the sister and caregiver and when i called hospice here they told me Parkinson’s doesn’t have a termination date. i find it very difficult to go to get groceries, get a hair cut, just about anything because he doesn’t feel well enough to be out long. he is weak and tires very easily. i don’t want to place him just because i can not find help

    August 21, 2012
    • Hello Terry,

      I am so sorry that you are having a difficult time finding hospice care for your brother, and that you have not been able to find resources that can help you in your caregiving journey. It sounds as if the hospice providers are questioning whether your brother meets eligibility criteria for hospice care. As we discussed last week, there is no crystal ball that can definitively give us this answer and the transition from chronic to terminal illness can be difficult. There is a time when Parkinson’s disease, like many other neurologic illnesses, does become life limiting. Life limiting factors are often as a result of complications from the illness, rather than the illness itself. Recently, there was criteria published that can assist professionals in predicting life expectancy and determining hospice eligibility for Parkinson’s Disease. I will gather this information for you over the next day or two and will reply to you again. Even if your brother is not able to receive hospice care at this time, this may be good information to have for future planning.

      Please take some time to care for yourself,

      August 21, 2012
      • I was told by someone that there are different hospices but I don’t find this in my area. I think it is awful that Parkinson’s is looked down on with no help. It is so unlike cancer which definitely has more of a time line. thank you for your efforts and will look forward to your next reply!

        August 21, 2012
    • Hello Terry,

      As we discussed, it is often challenging to know exactly when someone with a chronic illness meets eligibility requirements for hospice care. What we do know if that for many, chronic illness continues to progress over time and either the illness itself or complications from the illness become life threatening. Some general symptoms or problems that often indicate that illness is progressing and that hospice may be indicated include: progressive weight loss (usually 10 % or more of body weight), frequent hospitalizations (2-3) for the same problem in the last 6 months; or an increase in symptoms or complications including pain, shortness of breath, aspiration pneumonia, or skin breakdown. For neurologic illnesses such as Parkinson’s Disease, advanced illness typically consists of progressive disabilities that might include: difficulty swallowing and taking in enough nutrition, unintelligible or affected speech, significant drooling, marked tremors, inability to ambulate, falls, pain, incontinence of bladder and bowel, and dependence on activities of daily living such as dressing, bathing, or feeding. These are the types of symptoms a medical team would evaluate when determining hospice eligibility but each situation is unique and other factors may also be taken into account.

      I am wondering what guidance your brother’s physician can provide to you regarding what to expect. Also, most hospice programs are happy to evaluate and provide additional information about hospice or other resources that might be available in your community. I hope that this was helpful. I am happy to speak with you directly, where you may be able to share more information about your brother’s needs as well as your location. Please feel free to call me or contact me directly.


      August 22, 2012
      • thank you Terre.
        My brother has almost every one of the items listed for Parkinson’s, some choking but not much. Today, we had to start using small pads as he has come to the point now that he has trouble with urinating. I will get a hold of Hospice again and see what they can do with these symptoms I can give them. I will definitely call, especially if they can not help or refer me to someone. thank you so much!!!

        August 22, 2012

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