Hospice care plays a vital role in providing comfort, dignity, and support to individuals nearing the end of life. But not every hospice experience meets the expectations of patients or their families. When hospice care falls short—whether due to poor communication, inadequate pain management, or perceived neglect—it’s important to know what steps to take. This guide outlines how to address concerns with hospice providers, when and how to switch providers, and what rights hospice patients are entitled to under federal regulations.
Hospice care in the United States is a multi-billion-dollar industry, with Medicare expenditures nearing $18 billion annually. Despite the scale and significance of the sector, regulatory oversight and enforcement are often less stringent compared to hospitals and other healthcare facilities. This regulatory gap can sometimes result in substandard care or unmet expectations for families seeking support during an already challenging time.
Patients enrolled in hospice care, particularly those covered by Medicare, are protected by federal rights under the Medicare Conditions of Participation. These rights are designed to safeguard patient dignity, safety, and involvement in their care. They include the right to be treated with respect, to receive individualized end-of-life care, to express concerns without fear of retaliation, to participate in the care plan, and to refuse or discontinue treatment. Patients may also choose their attending physician, have their medical records kept confidential, and be protected from abuse, neglect, and mistreatment.
If you have concerns about hospice care, begin by communicating directly with the hospice team. The primary point of contact is typically the Hospice RN Case Manager. If the issue continues, request a meeting with the agency’s Medical Director or administrator. Be specific about your concerns, whether they involve pain management, visit frequency, or communication breakdowns. In some cases, a direct conversation can resolve misunderstandings or prompt improvements.
If informal conversations don’t resolve the issue, it’s important to document your concerns. Keep records of dates and times, names of involved staff, a description of the issue, and notes from any interactions with hospice personnel. This documentation is useful if you escalate your complaint or pursue a provider switch.
Formal complaints should be sent in writing, ideally by certified mail, to the hospice agency. If that doesn’t lead to resolution, you can contact your state’s Department of Health or Public Health Licensing Office. If the hospice is accredited by The Joint Commission, complaints can also be filed through their online portal. These reports ensure your concern is formally logged and reviewed by regulatory authorities.
Medicare offers additional avenues of support. If the hospice is Medicare-certified, you can call 1-800-MEDICARE to file a complaint. You may also contact your regional Beneficiary and Family Centered Care – Quality Improvement Organization (BFCC-QIO), which is authorized to address care quality complaints and service denials.
If you remain dissatisfied with care, you have the right to switch hospice providers. Medicare allows one switch per benefit period, which consists of two 90-day periods followed by unlimited 60-day periods. To make the switch, the patient or their representative must sign a document indicating the name of the current provider, the new provider, and the effective date of transfer. Both providers must coordinate the change to ensure continuous care.
To avoid disruptions during a provider switch, begin the transfer process as soon as you decide. Notify both the current and future hospice agencies, and complete any necessary forms. Ensure your attending physician is aware of the change and involved in the transition. The new provider should receive your medical records and initiate care without delay.
Choosing a new hospice provider involves careful consideration. Ask your doctor, hospital discharge planner, or trusted professionals for recommendations. Research the provider’s credentials, scope of services, and patient reviews. Verify that the agency is Medicare-certified and works with your insurance. An initial meeting can also provide insight into the provider’s responsiveness and communication style.
Continuity of care is crucial during the transition. The new hospice agency should begin services immediately upon transfer, with no interruption in medication, equipment, or support. If an immediate switch isn’t possible, you may need to request a voluntary discharge and re-elect hospice services through the new agency.
Medicare covers hospice care when a physician certifies that the patient has a life expectancy of six months or less and chooses palliative care over curative treatment. Importantly, hospice is not limited to cancer patients. A Do Not Resuscitate (DNR) order is not required, nor is the patient required to be homebound. Patients retain the right to revoke hospice care at any time and return to curative treatment.
Patients and families can advocate for improved care while remaining in hospice. Review and update the care plan regularly. Attend team meetings and ask questions when necessary. If concerns persist, reach out to national or state hospice associations or consult a patient advocate or elder law attorney.
Not all hospice care meets expectations—but families are not without options. Understanding your rights, documenting concerns, and speaking up are the first steps to improving care or seeking alternatives. Switching hospice providers is a protected right under Medicare, and the process, while formal, is manageable with preparation. The goal of hospice should always be to uphold comfort, dignity, and peace. If your provider is falling short, don’t hesitate to act. Your advocacy can make all the difference.
