Hospice Patients’ Rights Enhanced by New Medicare Rule
Hospice care is specialized, compassionate care for those diagnosed with a limited life expectancy. Good hospice care should enhance quality of life for the patient and should support caregivers. The Medicare Conditions of Participation afford hospice patients certain enumerated rights including the right to choose one’s own attending physician. A new rule promulgated in the Federal Register on August 22, 2014 and taking effect on October 1, 2014 bolsters this right by adding helpful language to the hospice election statement.
Medicare covers hospice care for those who have been diagnosed as terminally ill. Terminally ill means that the individual has a limited life expectancy of six months or less if the illness runs its normal course. Hospice care is a comprehensive set of services identified and coordinated by an interdisciplinary group to provide for the physical, psychosocial, spiritual, and emotional needs of the terminally ill patient and the community of caregivers. Medicare covered hospice care is supposed to provide support to the patient and family and to keep the patient as comfortable as possible while maintaining her dignity and quality of life.
For this care, Medicare pays hospice providers a per diem. Good hospice providers are generous. They render appropriate staffing to ensure families are supported and they provide the necessary services, medications and durable medical equipment to ensure patients are comfortable and are thus able to live and die at home with dignity. But there are bad hospice providers, as well. The bad providers take the full Medicare payment, but do not provide the necessary staff, services medications, or equipment. Consequently, their patients may die in pain or gasping for breath and their family members may be left alone and unsupported during the patient’s darkest hours.
Hospice Patient Rights
The Medicare Conditions of Participations grant hospice patients specific enumerated rights. Each patient has a right to:
(1) Receive effective pain management and symptom control from the hospice for conditions related to the terminal illness;
(2) Be involved in developing his or her hospice plan of care;
(3) Refuse care or treatment;
(4) Choose his or her attending physician;
(5) Have a confidential clinical record;
(6) Be free from mistreatment, neglect, or verbal, mental, sexual, and physical abuse, including injuries of unknown source, and misappropriation of patient property;
(7) Receive information about the services covered under the hospice benefit;
(8) Receive information about the scope of services that the hospice will provide and specific limitations on those services.
Obviously enforcement of each of these rights is a necessary element for ensuring dignity and quality of life. To this end, hospice providers must provide their patients with verbal and written notice of their rights in a language and manner that the patient or her caregiver can understand. Ensuring compliance with these rules is the duty of State Survey Agencies. Unfortunately, in a recent report, the Office of Inspector General found that the State Agencies were not sufficiently monitoring hospice providers.
Fortunately, as part of the “Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act), the U.S. Senate and House just passed legislation that will mandate hospice surveys every three years. More frequent surveys will help ensure that hospice patients get enough care and the right of care. However all hospice patients should take an additional step to protect their rights: they should choose an attending physician.
Hospice patients should choose a trusted physician who is not associated with the hospice provider. Hospice patients should do this for two reasons. First it is better to have an attending physician whose concern rests entirely with the patient than one who is also concerned with the provider’s bottom line. Second, the Conditions of Participation require that the hospice provider collaborate with the attending physician. This means that if the hospice is not providing enough care or the right kind of care, the patient or her family can contact the attending physician who will have legal authority to intervene on the patient’s behalf.
New Hospice Rule
As of October 1, 2014, the hospice election statement must contain the following information:
(1) Identification of the particular hospice and of the attending physician that will provide care to the individual. The individual or representative must acknowledge that the identified physician was his or her choice.
(2) The individual’s or representative’s acknowledgement that he or she has been given a full understanding of the palliative rather than curative nature of hospice care, as it relates to the individual’s terminal illness.
(3) Acknowledgement that certain Medicare services…are waived by the election.
(4) The effective date of the election…
(5) The signature of the individual or representative.
Historically, many hospice patients did not realize that they had a right to choose their own attending physician. This mandated language on the election form in combination with the requirement that hospice providers inform their patients verbally and in writing that they have a right to choose their own attending physician should mean that more hospice patients exercise this very important right.
Hospice Quality of Care Complaints
In the event that a Medicare beneficiary is not getting enough care, or is in pain, or the hospice program is refusing to provide necessary equipment or services, the patient or her caregivers should first call the attending physician and ask that he or she intervene. If this is not successful, the patient or caregivers should contact the Beneficiary and Family-Centered Care Quality Improvement Organization Program (BFCC-QIOs) covering their region of the country. In Connecticut, the company is LIVANTA. It can be reached by telephone at 866-815-5440. If the BFCC QIO is not helpful, the patient or family should call the State Survey Agency. In Connecticut, the Survey Agency can be reached by calling the Connecticut Department of Public Health at 860-509-7400. If the hospice provider is accredited by the Joint Commission, the patient or caregiver can also report the problem at: http://www.jointcommission.org/report_a_complaint.aspx.
If none of these remedies is successfully, the hospice patient has a right to change hospice providers or to revoke the benefit entirely and seek care in another medical setting, for instance, a hospital.
The Medicare Conditions of Participation list specific rights afforded to hospice patients. These include the right to choose one’s attending physician. Choosing a trusted physician helps ensure that decisions made by the hospice provider regarding the patient’s care will be guided by the best interest of the patient rather than the financial interest of the hospice. Hospice programs have a duty to inform patients in writing and verbally about this right. As of October 1, 2014, the hospice election statement will indicate that the identified attending physician has been chosen by the patient or the authorized representative.
T. Berthelot, 10/2/14
 79 Fed. Reg. 50,452 (August 22, 2014)
 42 C.F.R. § 418.22(b)(1)
 73 Fed. Reg. 32,088 (June 5, 2008)
 42 C.F.R. § 418.52(c)
 42 C.F.R. § 418.52(a)
 Frequency of Medicare Recertification Surveys for Hospices is Unimproved, https:oig.hhs.gov/oei/reports/oei-06-13-00130asp
 42 C.F.R. § 418.56(b)
 42 C.F.R. § 418.24(b)
 42 C.F.R § 418.30
 42 C.F.R. § 418.28