Considerations in FTD

There are some common obstacles that people may encounter in the process of choosing and accessing hospice care for someone with frontotemporal degeneration.  This section will outline some of the issues and provide information that may help in decision making.

When to Consider Hospice

Hospice is an underutilized healthcare program. There are many reasons for this but chief among them is that hospice is too often considered only when death is imminent. If it is discussed at all it is usually offered as a last resort or when a doctor or nursing home staff feels that further medical treatment is in vain. You do not need to wait for someone else (ie: the doctor) to suggest hospice as an option. If a loved one has a terminal illness, hospice is an option to look into at any time, not just in those very last days or weeks of a person’s life. Choosing hospice is too often thought of as an admission of defeat; a sign that the caregiver is abandoning hope and giving in to death. Instead, the mission of the hospice movement is to affirm life, preserve dignity, and provide comfort during the final period of life. The benefits are greater when the patient and family can work with the hospice team over time. Most hospice agencies will provide a free initial consultation to review payment options and assess whether a patient and their family is ready for hospice. This can be an excellent opportunity to make long term care plans, and help a family become aware of all the options available. Some agencies offer transitional or partial hospice plans, often called “bridge” programs, for patients who do not fully qualify for hospice care, or when families are not ready to stop medical treatments aimed at a cure. An initial consultation also provides the opportunity to assess whether the agency is capable of caring for your loved one, and the unique challenges presented by a FTD patient.

Six-month Life Expectancy Requirement

Most hospice programs in the US are designed to meet Medicare rules. One eligibility requirement of Medicare is that the person’s physician and the hospice medical director must certify that the patient has six months to live given the usual course of the disease. However, the program recognizes that doctors cannot make this claim with absolute certainty, and hospice services can stop and start as needed, depending on the patient’s condition. The natural course and end stages of neurodegenerative diseases such as FTD are especially difficult to predict and may not be well understood by physicians and hospice programs. It is helpful to express an interest in hospice as a health care option early with the physician and prospective hospice providers to educate, build collaborative relationships and advocate for services as needed. Attentive documentation of small changes in functioning can be made before and during hospice services to support continued eligibility.

Deciding to Stop Curative Treatment

In the U.S. in order to receive hospice care through public health benefits the recipient must agree to use their primary insurance plan exclusively for palliative care through a certified hospice agency and forego coverage of curative care by that insurance plan. Public health plans in the US will not pay for both forms of care for the same illness at the same time. This is a deeply personal choice and is the fundamental decision caregivers and patients must make before choosing hospice care.

Hospice and Dementia

Because hospice began primarily serving cancer patients its traditions and standards do not always apply to dementia patients. FTD differs from cancer and other terminal illnesses because it affects the mind first then the body, but waiting until the mind has degenerated to the extent that it can no longer control the body before accessing hospice is not necessary, and diminishes the potential benefits of using hospice care.

To qualify for hospice Medicare initially required FTD patients to be rated on a scale developed to track the progression of Alzheimer’s patients. This scale, known as FAST, required patients to be, bed-ridden, unable to talk, and without any basic motor skills such as the ability to sit up or turn their head. Such a strict requirement likely added to the general belief that hospice could provide little help for FTD patients and may be among the reasons why doctors and nursing home staff rarely suggest hospice care for FTD patients. There is now less strict adherence to FAST ratings and doctors are able to consider other factors such as the clinical history of the patient, the overall rate of decline, and other health concerns which could be exacerbated by dementia and contribute to the prognostic picture.

Even with a broader view of eligibility, several common barriers persist to considering hospice for people with degenerative neurological disorders such as FTD. They include:

  • Recognition and acceptance of FTD as a terminal illness by the patient and family, or the physician.
  • Challenges with predicting the long- term course of the disease and with a making a prognosis.
  • Difficulty in making decisions around such things as treatment of acute infection, placement of feeding tubes, and hospitalization.

These barriers can be addressed through discussion with involved family and friends and consultation with physicians and hospice providers.