Requesting hospice services can be difficult for families, the terminally ill, and their health care providers. Medical requirements, countless unknowns, and the emotional implications often cause patients and caregivers to wait too long to utilize the full benefits of hospice care.
According to a 2021 report by the National Hospice and Palliative Care Organization (NHPCO):
- The amount of Medicare beneficiaries receiving hospice care (1.61 million) has increased 3.9% since 2018.
- Of Medicare hospice beneficiaries, half of the patients were enrolled in hospice for 18 days or less.
- 51.6% of all Medicare decedents in 2019 received one day or more of hospice care and were enrolled in hospice at the time of death, which means nearly half (48.4%) who died did so without hospice support.
- The median length of stay (18 days) has stayed the same for the last four years.
“When our clinicians identify an unmet need, whether physical or emotional, and refer a patient to hospice, what we hear over and over again is, ‘I wish I’d known about this sooner,’” said Heather Lumsdon, Chief Clinical Officer for Heart the Heart Hospice, in Technology Magazine. Considering Medicare hospice benefits are available for the last six months of life, many families struggle to provide adequate in-home care, and are missing out on vital comfort measures and patient/caregiver support in all areas (medical, educational, social, emotional, spiritual).
Without hospice, it’s shown that patients have prolonged suffering, more frequent trips to the hospital or emergency room, plus increased burden on the caregiver who is managing many moving parts without hospice-trained support. Those who utilize hospice sooner, however, experience more comfort and less stress.
Why Hospice is Often Delayed
Many reasons exist for delaying hospice support, including:
- Difficulty knowing the course of disease﹘While Medicare hospice coverage was originally offered to patients with end-stage cancer, it’s been expanded for non-cancer-related illnesses such as dementia, late-stage heart, lung and kidney disease, organ failure, and more. Doctors and caregivers may have a difficult time pinpointing the final months with ailments like heart disease and dementia.
- Reluctance to stop curative treatments﹘Many patients and family members often want to keep pursuing curative treatments, even though there is no evidence of improvement . The timing takes honest conversations about a patient’s goals, and end of life choices between doctors, patients, and their families. Families may feel like they’re giving up, but by choosing hospice, they are calling in support and services to help reduce the suffering of their loved one.
- Fearful of calling on hospice too soon or running out of benefits﹘Many erroneously believe patients can’t return to treatment if their condition improves. But if a patient gets better, they can opt out of hospice. Others may be nervous they will run out of Medicare hospice benefits after six months. However, it is possible to extend hospice care under a doctor’s recommendation.
When is the Right Time to Begin Hospice? Benefits of Starting Sooner
The benefits of hospice care are many, and once families call in a centralized support system, a team helps shoulder the management and burdens of caregiving. Some of the proven benefits include the following:
- More comfort for the patient for a longer period of time﹘Debilitating symptoms like depression, pain, shortness of breath, and nausea are reduced with hospice care. Addressing these needs for six months (versus the median of 18 days) helps ease patient suffering.
- Comprehensive care for caregivers and patients﹘Hospice services provide a holistic care team that includes a nurses, social workers, spiritual support, aides, and volunteers to help with companionship, patient care, and emotional support for both patient and family. End-of-life support, grief and bereavement support, and compassionate education for caregivers are all vital parts of hospice services.
- Hospice experts who have walked with others﹘There is something to be said for experience. Doctors, nurses, social workers, and counselors who are hospice-trained provide an added level of expertise, compassion, and dignity to the hospice journey. The continuity of care (as opposed to constant emergency room visits) also alleviates stress. Hospice care is provided wherever the patient calls home, including private residences, assisted living facilities, nursing homes, and short-term hospice or respite facilities.
Calling in hospice support earlier in the journey allows you to ensure quality of life, for both the patient and caregivers, in the final months. “It’s challenging to have honest discussions with patients and families about death and the dying process,” said Dr. Thomas Michael Gill, Humana Foundation professor of geriatric medicine at Yale University and co-author of a hospice study in the Journal of American Geriatrics Society. “But leaving the conversation until the very end makes it more difficult.”
When deciding if hospice is right for your loved one, ask these questions (Is it Time for Hospice?) and talk with their medical team. Discover if Heart to Heart Hospice is available in your area, serving regions of Michigan, Indiana, and Texas. Read through our Patient and Family Handbook for the vast resources provided to our hospice families.
NHPCO Facts and Figures Report, 2021 edition
When to Start Hospice Care, Consumer Reports (2017)