Hospice care is centered on dignity, comfort, and respect during one of the most vulnerable periods of a person’s life. Because of that, patients receiving hospice services are afforded a broad set of rights designed to protect their autonomy, safety, and voice throughout the course of care.
For many hospice agencies, patient rights are one of those topics that seem straightforward. That is until survey prep begins, a complaint is filed, or a staff member asks a question that doesn’t have a clear answer. Medicare’s expectations go far beyond handing a patient a notice at admission. Missing nuance in any area of patients rights can lead to serious consequences for hospice agencies. This makes understanding patient rights requirements essential.
*This article was written in consultation with Mariam Treystman.
At The Home Health Consultant, we work with Medicare-certified hospice agencies nationwide on compliance infrastructure, survey readiness, and regulatory risk management.
We’re writing this article to clearly explain what patient rights in hospice include. After reading, agencies should be able to understand Medicare’s expectations, evaluate whether their current systems align, and decide what level of support best fits their compliance journey.
What Does it Mean for Hospice Patients to Have the Right to be Informed?
Hospice patients have the right to be informed of their rights and responsibilities before hospice care begins. This information must be communicated in a way the patient can understand. Medicare has clear guidelines for how the information must be communicated to ensure this.
These guidelines include but are not limited to explaining:
- what hospice care involves
- what services will be provided
- what the hospice is responsible for
- what role the patient or their representative plays in care decisions
The expectation is not simply that information is given, but that comprehension is reasonably ensured.
When a patient can read and understand written materials, a verbal summary may be appropriate.
When a patient cannot read, has cognitive limitations, or struggles with comprehension, the explanation must be more detailed and reviewed carefully so each element is understood before care begins.
How Do Language Access and Communication Rights Apply in Hospice Care?
Language access is a critical part of patient rights in hospice. Patients have the right to receive information in a language and manner they understand.
When language barriers exist, interpretation must support accurate, unbiased communication. Professional interpreters are preferred, but patients may choose to rely on family members or trusted individuals if they are comfortable doing so. That choice belongs to the patient, not the hospice.
When a particular language is prevalent among the patients an agency serves, patient-facing documents should be available in that language. This ensures patients can independently review and understand their rights, rather than relying solely on interpretation during visits.
Who Exercises Patient Rights When a Hospice Patient Cannot Advocate for Themselves?
Not all hospice patients are able to speak or make decisions for themselves. In situations where a patient is incapacitated, patient rights extend to a legally recognized representative.
A representative may be someone the patient previously designated or someone appointed through legal or court processes. When a representative is involved, hospice care must respect that authority, specifically as it relates to healthcare decisions.
It is also important to recognize that not all legal appointments are the same. Some individuals may be appointed for financial matters only, while others have authority over healthcare decisions.
If a patient regains decision-making capacity, patient rights shift back to the patient directly. In this case, the information previously shared with a representative must then be explained to the patient themselves.
What Rights Do Hospice Patients Have Regarding Advance Directives?
Hospice patients have the right to receive information about advance directives and to make decisions about future medical care while they are still able to do so.
Advance directives allow individuals to outline their healthcare wishes or appoint someone to make decisions on their behalf if they become unable to advocate for themselves. Patients may…
- have advance directives in place,
- choose to create them,
- or decide not to complete one at all.
Importantly, hospice patients cannot be treated differently based on whether an advance directive exists. Choosing not to complete one does not limit access to care or affect how services are delivered.
Patients also have the right to understand applicable state laws related to advance directives, including the right to refuse medical or surgical treatment. In certain settings (such as religious or non-medical facilities) specific preferences, rituals, or beliefs related to end-of-life care may need to be identified, honored, and documented.
What Protections Do Hospice Patients Have Regarding Dignity, Respect, and Property?
Hospice patients have the right to be treated with dignity and respect at all times. This includes respect for their person, their beliefs, and their personal property.
Patients may voice concerns or grievances related to:
- their care,
- services that were not provided,
- or behavior by anyone furnishing services on behalf of the hospice.
They are protected from discrimination or retaliation for exercising these rights. These protections apply broadly. They apply to employees, volunteers, vendors, and anyone acting on behalf of the hospice.
How Can Hospice Patients File Complaints Without Fear of Retaliation?
Hospice patients have the right to know how and where to file complaints. These complaints can be related but not limited to their care, treatment, or potential rights violations.
Patients may raise concerns internally or with external authorities, and they are protected regardless of how or where a complaint is filed. When a patient cannot file a complaint themselves, their representative may do so on their behalf.
The right to complain is a foundational part of hospice and Medicare in general. It exists to ensure patients can speak up without fear that their care will be impacted.
What Rights Protect Hospice Patients from Abuse, Neglect, or Exploitation?
Hospice patients are entitled to protection from all forms of mistreatment. These forms of mistreatment include but are not limited to:
- Physical
- Verbal
- Mental
- Financial
- Sexual abuse
- Neglect
- Misappropriation of personal property
Medicare gives special attention to injuries of unknown source. This mean situations where injuries:
- cannot be explained by the patient,
- were not observed by others,
- and appear suspicious based on location, severity, or pattern.
When concerns arise, patients have the right to expect that allegations are taken seriously, investigated appropriately, and addressed through proper channels.
What Rights Do Hospice Patients Have Related to Pain and Symptom Management?
A core right of hospice patients is access to effective pain management and symptom control related to their terminal illness.
Hospice care exists to promote comfort. Patients have the right to timely responses to pain, distress, or symptom escalation. They have this regardless of the time of day. Comfort measures are not optional or delayed based on schedules; they are central to the hospice benefit.
How Do Hospice Patients Need to Be Involved in Planning Their Care?
Hospice patients have the right to participate in the development of their plan of care.
This includes but is not limited to:
- understanding what care will be provided
- why certain services are recommended
- how those services align with their goals
Care planning is not meant to occur in isolation, or only at the beginning of care. Patients and, when appropriate, their representatives have a voice in how care is delivered and adjusted over time.
Can Hospice Patients Refuse Care or Treatment?
Hospice patients have the right to refuse any portion of care or treatment.
Refusal does not require justification. Patients may decline services for any reason, and that choice must be respected.
However, patients also have the right to receive information about the potential benefits of treatment and the possible consequences of refusing it. This empowers the patient or their representative to make informed decisions consistent with their preferences and values.
Do Hospice Patients Have the Right to Choose Their Physician?
Yes, hospice patients have the right to choose their attending physician.
This may include:
- selecting the hospice medical director,
- continuing with a personal physician,
- or choosing another qualified provider.
Patients may also seek care for conditions unrelated to their terminal illness outside of the hospice benefit when appropriate.
How is Patient Privacy and Confidentiality Protected in Hospice Care?
Hospice patients have the right to confidentiality of their medical records and personal health information.
Health information may only be shared in accordance with authorization provided by the patient or their representative. Safeguards must exist to protect both paper and electronic records, preventing unauthorized access or accidental disclosure.
Why Is Understanding Patient Rights Essential in Medicare-Certified Hospice Care?
Patient rights in hospice are not theoretical. They directly shape patient experience, family trust, and regulatory risk.
Understanding the full scope of these rights helps hospice agencies evaluate whether their:
- admission processes,
- staff education,
- documentation practices,
- and response systems
…accurately align with Medicare’s expectations. And these boxes must not just be checked on paper, but in real-world situations that surveyors and families pay close attention to.
Need help preventing deficiencies tied to hospice patient rights?
Patient rights intersect with multiple compliance areas, from admission workflows to volunteer coordination. To understand another commonly misunderstood requirement, check out our article on Medicare Hospice Volunteer Requirements below.:
Your next step: Don’t wait until it’s too late. Schedule a consultation with us to ensure your agency stays compliant and operational.
At The Home Health Consultant, we’ve spent over 20 years helping agencies navigate regulatory hurdles. Let us help you stay proactive, compliant, and protected.
*Disclaimer: The content provided in this article is not intended to be, nor should it be construed as, legal, financial, or professional advice. No consultant-client relationship is established by engaging with this content. You should seek the advice of a qualified attorney, financial advisor, or other professional regarding any legal or business matters. The consultant assumes no liability for any actions taken based on the information provided.
Topics:
