Life and Death

Hospice 101: What, why and when to seek help

By Bonnie Evans
Posted 11/25/22

Considering the option of hospice, or even just hearing the word “hospice,” often comes at a stressful and chaotic time, so having a baseline understanding of how hospice works falls …

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Life and Death

Hospice 101: What, why and when to seek help

Posted

Considering the option of hospice, or even just hearing the word “hospice,” often comes at a stressful and chaotic time, so having a baseline understanding of how hospice works falls under the heading of “good to know.”

The idea for our current day hospice began in London by Dame Cicely Saunders, a physician who identified the need for specialized care for the dying. She witnessed patients with poorly managed symptoms and care that focused on the disease rather than the person and this led her to open St. Christopher’s Hospice in London in 1967.

When she spoke at Yale in 1963 and shared her ideas, Florence Wald, the Dean of the School of Nursing, was so inspired that she resigned her position to help open the first hospice in Brantford, Conn. There are now close to 5,000 hospice agencies in the U.S.

The philosophy of hospice is to maximize the quality of life of seriously ill patients by supporting not only their medical needs, but their emotional and spiritual needs and to support their family caregivers. When Medicare decided to offer the Hospice Benefit in 1986, it established guidelines and what benefits would be covered.

Prior to being admitted to hospice, two physicians must certify that a patient has a life-limiting diagnosis that “if the disease runs its normal course, they would not be expected to live more than six months” and that the patient and family have decided that focusing on a cure is no longer the goal.

Making a prognosis of six months or less can be challenging, and people may be on hospice for more or less than six months. Patients can be cared for in their own homes, in nursing homes, assisted living facilities, residential facilities or hospitals.   

The hospice team includes a physician, registered nurses, social workers, hospice aides, spiritual care and grief counselors, volunteers, and speech, occupational and physical therapists as needed. The Medicare Hospice Benefit begins with two, 90-day periods (covering the six months) and then unlimited 60-day periods. At the end of each day 90 or 60-day period, patients must be re-certified by the hospice team to determine if they remain terminally ill.

Sometimes patients stabilize or improve and are discharged from hospice with the option to return as needed. At any time, a patient may decide to revoke the benefit and come off hospice. Patients can keep their primary care physician while on hospice.

Hospice care is covered by a variety of health insurance plans, including Medicare - Part A, Medicaid (coverage varies by state), and the Veteran’s Health Administration. If you are in a Medicare Advantage Plan, you can stay in that plan if you pay your premiums, and still have access to the Medicare Hospice Benefit. Your Medicare Advantage Plan will then continue to cover services that aren’t a part of your terminal illness. Many private insurance companies also provide hospice coverage, but there may be different qualifications and covered benefits

For patients and families whose goal is to stay in their home and avoid trips to the emergency room or hospital, having the hospice team available 24/7 is an important way to support that plan. For example, if it is 2 a.m. and there is a new or worsening symptom, there is a team on-call to assist.

The Medicare Hospice benefit covers physician and nursing services, durable medical equipment, medical supplies, aide and homemaker services, and medications related to the terminal illness. To support families, hospice also maintains contact following a death to offer 13 months of bereavement counseling. For a detailed list of Medicare Hospice Benefits, please refer to https://www.medicare.gov/coverage/hospice-care.

 

Types of care

Hospices certified by Medicare must offer four levels of care: routine home care, general in-patient care, continuous home care and respite care. Most of the care provided by hospices is routine home care. This is the basic level of care provided by the team in the home, assisted living or nursing home.

Patients who are eligible for general inpatient (GIP) care require intense treatment for pain and symptom management that cannot be managed in any other setting. It might be described as “the hospice intensive care unit.” This care is usually short-term to treat and stabilize the patient.

Some hospices have their own general in-patient facility, and some provide this level of care in a nursing home or hospital. When deciding between different hospices, knowing where this GIP level of care is provided could be helpful information.

Continuous home care allows for a nurse to be in the home for several hours to manage a medical crisis.

Finally, respite care is available to relieve an exhausted or ill family caregiver and allows for short-term care for patients in a nursing home, hospital, or hospice facility.

 

Some wait too long

There is concern that patients tend to come onto hospice late in the course of their disease and are not taking full advantage of this specialized care. Over half of Medicare patients on hospice received care for 18 days or less and a quarter of beneficiaries for only 5 days or less in 2019.  https://www.nhpco.org/hospice-facts-figures/.

There can be several reasons for late referrals to hospice, including a lack of understanding of what the hospice benefit provides or a sense that enrolling in hospice means giving up hope. Another common misunderstanding is that patients on hospice are automatically given morphine/opiates. These medications can be very effective but are only given when the patient and family agree and to treat a specific symptom such as pain or shortness of breath.

For some, there comes a time in the course of their illness that what matters most is to be comfortable, supported, and at home with family. Hospice can be there to offer compassionate and competent care and to ensure the best quality of life for whatever time remains.

To learn more go to: https://www.medicare.gov/care-compare/

https://www.medicare.gov/care-compare/en/assets/resources/hospice/HospiceChecklist-Final-Clean.pdf

 

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula. She can be reached at bonnie@bonnieevansdoula.com.

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A lifelong Portsmouth resident, Jim graduated from Portsmouth High School in 1982 and earned a journalism degree from the University of Rhode Island in 1986. He's worked two different stints at East Bay Newspapers, for a total of 18 years with the company so far. When not running all over town bringing you the news from Portsmouth, Jim listens to lots and lots and lots of music, watches obscure silent films from the '20s and usually has three books going at once. He also loves to cook crazy New Orleans dishes for his wife of 25 years, Michelle, and their two sons, Jake and Max.