For many, the term “hospice” conjures up fears of giving up on a loved one who has a life-limiting illness such as terminal cancer, congestive heart failure, kidney or lung disease, or dementia. The truth is, however, that hospice supports patients and families with a host of services that provide for pain management, holistic care, and a peaceful passing.
Overcoming myths about hospice can help alleviate stress and anxiety when a doctor makes a hospice referral. To put your mind at ease, explore these 10 myths and facts about hospice so your loved one can receive the compassionate end-of-life care they deserve.
10 Hospice Myths and Facts
1. Hospice is giving up.
The reality is, even after valiant medical efforts, treatments sometimes don’t work or age causes us to reach the natural end of life. Doctors can help identify the terminal nature of disease or age (with life expectancy of 6 months or less), then refer to hospice out of compassion to help you get the resources you need. Beyond pain management, nurse visits, and coordination of equipment and supplies, you’ll discover a knowledgeable team that helps you and your loved one feel support to the very end. Achieving a “good death” with comfort and dignity is possible.
2. Hospice care means just sitting by my loved one’s bedside waiting for them to die.
One of the benefits of hospice is setting goals together (patient, family, and hospice team) to enhance their quality of life, no matter the quantity of days. Honoring the patient’s wishes is a top priority, such as making the difficult possible, like attending a special event or taking a vacation. Goals include pain management, recording special memories, and assisting the patient to be as independent for as long as possible.
3. Hospice is too expensive.
The financial burden of medical bills is eased with the Medicare hospice benefit, which covers almost 100% of the medications, equipment, supplies, intermittent hospice team visits, and other services. Medicaid, VA benefits, and most private health insurances also provide hospice coverage. Palliative (or comfort) care replaces curative treatments under the hospice benefit. The Medicare hospice benefit, created 40 years ago, has provided millions of patients coverage for end-of-life care.
4. It’s too early to go on hospice, and I’m afraid I’ll run out of benefits after 6 months.
The most common statement from families is, “I wish we would’ve gone on hospice sooner.” Admitting treatments are no longer working, then transitioning mentally and emotionally to end-of-life care can be difficult. But the host of services that opens up with hospice coverage provides relief and comfort to families. The average hospice stay is 92.6 days (about 3 months) and the median length is 18 days, while benefits cover 6 months of care. After 6 months, hospice coverage can continue if a hospice medical director or hospice doctor recertifies (at a face-to-face meeting) that the patient is still terminally ill and not receiving curative treatments.
5. We won’t get adequate medical care at home versus the hospital.
Many families fear they’ll lose access to hospital care if they choose in-home hospice. The truth is, hospice takes place wherever the patient calls home — a private residence, nursing home, residential facility, or inpatient hospice center (coverage may only be short-term for a medical crisis or respite care). The familiar, comforting environment of home enhances quality of life and facilitates easier interactions with loved ones and visitors. Hospice nurses and physicians help patients avoid unnecessary hospitalizations, trips to the ER, invasive procedures, or unneeded lab work. Nurses trained in hospice care are familiar with common symptoms of decline and comfort needs. A 24/7 on-call nurse helps triage urgent patient/family calls.
6. I’m not a medical professional and can’t provide the care my loved one needs.
Beyond visiting and caring for your patient, hospice staff also provides in-depth education for in-home caregivers. Beyond personal hygiene, you will be equipped to help manage your loved one’s pain, medications, nutrition, and simple medical equipment/supplies as needed. Team members also educate you on what to expect regarding disease progression and creating a safe environment (see Heart to Heart Hospice’s Patient and Family Handbook).
Different levels of hospice care include:
- Routine Hospice Care — The most common, providing in-home visits on a regular basis and caregiver support.
- Continuous Home Care — During pain or symptom crisis, with short-term nursing care and aide support, to manage pain and acute symptoms at home without a hospital visit.
- Inpatient Respite Care — Temporary relief for the caregiver with the patient in an inpatient facility, such as a long-term care or hospice facility with 24-hour nursing personnel.
- General Inpatient Care — When pain and acute symptoms can’t be managed elsewhere, care takes place at a Medicare-certified hospital, inpatient, or nursing facility with direct patient care.
7. It’s too emotional and we feel lost.
The end of life is full of grief, and hospice professionals help families navigate their loss with compassion. Nurses, aides, and volunteers provide their experienced presence and understanding. Chaplains, spiritual care coordinators, and social workers help families work through funeral planning, important conversations, and simply providing a kind presence. They also help caregivers avoid burnout and practice vital self-care. Having an entire hospice care team who’s walked the road with other families lends confidence to patients and families.
8. Hospice speeds up the dying process.
Studies show the opposite is actually true, along with improved quality of life. One study showed a mean survival rate of 29 days longer for patients on hospice versus those not on hospice. Patients with congestive heart failure showed a survival rate of 81 days longer. The goal is not to speed up dying, but to provide comfort care and dignity.
9. The hospice team will provide general, non-personal care and won’t respect the family’s or patient’s wishes.
When choosing a hospice company, the in-depth admission process guides families and patients in outlining goals of hospice and end-of-life wishes. Caregivers often attest that hospice team members become trusted family-like advisors and listeners. Letting the family take the lead on defining “quality of life” is essential.
10. I won’t know how to handle the dying process or grief when they’re gone.
Social workers help you manage stress, relationship resolution, and coordinate community services, financial and insurance matters, and more. Spiritual care coordinators can support caregivers and patients during the difficult end-of-life period and also help coordinate with personal clergy and funeral planning. Hospice services often include grief counseling and bereavement care up to 13 months after the patient’s death.
Don’t wait too long to call on vital hospice services for a compassionate, dignified final months of life for your loved one. Heart to Heart Hospice provides services throughout Michigan, Texas, and Indiana.
NHPCO Facts and Figures, 2021 Edition
The Journal of Pain and Symptom Management