— What Families Need to Know

Caring for a family member during the last months of life is a loving and formidable task. Families need reliable, knowledgeable caregivers to ensure their loved one’s comfort and dignity are maintained. Forming a partnership with the right hospice provider is critical.

BY Terry Ann Donner, RN, BSN, JD, CCM, CSA

• Studies have shown that many for-profit hospice providers have few trained staff, offer fewer services, and seek patients who need less care.
• Non-profit hospice providers have charitable missions; they are also more likely to have inpatient units, provide more complex care, and often seek additional accreditation and staff training.
• Medicare’s Hospice Compare website provides family recommendations and survey scores for three quality indicators for hospice providers.

The lay of the land

Hospice is the end-of-life care that addresses the physical, psychosocial, and spiritual needs of terminally ill patients and their families.To qualify, patients must be certified by a hospice medical director and/or attending physician as having a life expectancy of six months or less.

The Medicare Hospice Benefit initially served mainly cancer patients.The patient population has changed significantly, with dementia patients representing almost 21% of the hospice enrollees in 2019.

Over the last three decades, the hospice delivery system has changed from being dominated by non-profits, to a system where almost two-thirds of providers are for-profit.

Medicare pays hospice providers a per diem or daily rate.This may encourage providers to limit services or to seek patients with less needs who stay enrolled longer.

For-profit vs non-profit hospice providers

For-profit providers generate a monetary gain for investors. Private equity firms often provide 10%–30% of the funds to purchase the hospice. The remaining funds are borrowed, creating pressure to generate profits to pay back the investors and loans. Non-profit hospice providers use profits for additional patient services, staff training, charity care, and employees since they have a charitable mission.

The U.S. Government Accountability Office documented that, from 2014 to 2017, patients in for-profit hospices were less likely to receive a hospice visit in the last three days of life. While a 2019 report for the National Partnership for Healthcare and Hospice Innovation showed non-profits provided more nursing, social work, and therapy visits.

Furthermore, for-profit hospice providers were found to have longer lengths of stay, but also discharged more patients before death since the care costs usually increase in the last weeks. They also had profit margins seven times higher than non-profits and were found to spend less than half the amount spent by non-profits on family bereavement services.

Choosing a hospice provider

A provider’s business structure does not tell the whole story. Good and bad providers exist in both categories. However, determining whether a provider is for-profit or non-profit can help families focus on the type of care questions they should ask. Families want reassurance that loved ones will receive individualized services from trained staff. Asking family, friends, and healthcare providers for hospice recommendations is a good place to start.

Families should ask friends, family, and healthcare professionals what hospice providers they have engaged. It is also important to check the Medicare Hospice Compare Website for information on the provider’s business structure, care recommendations, and quality ratings. Families can use this information to develop other questions regarding the care they and their loved ones will receive.

FAQ

We have talked with three executives at Hospice of the Western Reserve, a non-profit hospice operating in Ohio since 1978. Below, you will findprofessional opinions about what you should know when choosing a hospice provider. The answers were provided by Robert P. Phillips-Plona (Director of Inpatient Services and Facilities), Judy Bartel,MSN, ACHPN, CHPCA, FPCN(Chief Clinical Officer), Mary Kay Tyler,MSN, CNP, CHPCA(Chief Quality Officer).

Does the hospice provider have accreditation beyond Medicare certification?

Medicare’s Conditions of Participation are basic standards of care. Hospice providers are surveyed every three years and there are no penalties for substandard care.

Do bedside staff, physicians, or advanced practice nurses have specialized training in end-of-life care?

Bedside staff can be certified in end-of-life care through two national organizations (Hospice and Palliative Credentialling Center or National Center for Death Education). Physicians and advanced practice nurses can complete a Hospice and Palliative Medicine fellowship program to further hone skills.

How are family or patient complaints handled?

Families and patients should have access to an administrator 24/7 if an issue is not resolved by the care team.

Does the provider have an inpatient unit for critical needs that cannot be handled by the caregiver at home?

Mainly non-profit hospices have inpatient units. Most for-profits do not have such units because there is no Medicare reimbursement for room and board. For-profits contract with hospitals or nursing homes to provide a room and daily care to save costs.

How do hospice providers in my area compare?

Medicare’s Hospice Compare website helps determine which providers have received favorable ratings (one to five stars) from families who have used their services. Although a bit dated, the site also provides scores for three Quality of Care indicators, rating these scores above or below the national average.

How will my loved one’s plan of care be developed and reviewed?

After a comprehensive assessment, care needs should be reviewed at least every two weeks by an interdisciplinary team consisting of the patient’s physician, nurse, social worker, and pastoral care expert. Bedside staff should be trained to identify needs outside the scope of their care, so issues are not missed.

If family or the patient calls in the middle of the night with a question or care need, how does the on-call system work?

Medicare Conditions of Participation require a 24/7 call response system. After the primary care team goes home, the call center must have trained staff to answer care questions or arrange for a visit by an after-hours nurse.

How can hospice help a family member transition from a caregiver role?

Once informed the family member wants to relinquish caregiving duties, the interdisciplinary team should develop a care schedule that clearly delineates what will be provided, and when care will be updated. This helps the family determine where they need to supplement hospice care with private caregivers or friends.

What emergency care can be provided for your loved one?

If a loved one has an emergency, loss of electricity to run an oxygen concentrator or ventilator, or has no heat, it is important to know if the hospice provider can help arrange timely transportation to a safe inpatient unit or other facility.

What types of bereavement support is available to the family after a loved one passes?

Medicare requires 12 months of bereavement support. It may make a difference to the family if the support is offered through phone calls, in person or via support groups.

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