Peter and Gwen Culver are in their mid 70’s, living independently, although Gwen suffers from congestive heart failure. The Culvers’ doctor, Erin Marsh, has explained to the Culvers that Gwen’s heart problems can be treated for a period of time, but not cured. She is concerned about Gwen’s advancing congestive heart failure, and also about the physical toll that caring for Gwen is having on Peter’s health. After a particularly bad “spell,” Dr. Marsh informs the Culvers that Gwen’s health has deteriorated to the point that the medications used to treat the disease are no longer proving effective, and that there is nothing more she can do. She believes that it is an appropriate time for the Culvers to consider hospice services for Gwen.
Dr. Marsh explains that hospice care is provided for individuals when the terminal illness will most likely end the patient’s life within six months. Dr. Marsh states that the severity of Gwen’s congestive heart failure has reached that point, and that she will refer them to a hospice program. The Culvers are stunned, and not entirely comfortable with enrolling Gwen in hospice services, as this would mean acceptance that her death is close.
The Culvers’ daughter, Susan, decides to research hospice programs in the Northern Virginia area. She finds that hospice organizations provide many services to end-of-life patients and their families as they go through this difficult time. Rather than being a place, hospice organizations provide services to terminally ill patients in their homes, in hospitals, in nursing homes, assisted living facilities and even in prisons. The focus of hospice care is providing dignity and self-determination for the patient, while managing pain and other symptoms that accompany the end of life. Hospice neither prolongs life nor hastens death, so hospice services are not focused on curing a condition or illness, but simply allowing the patient to live out the remainder of his or her life in comfort and with dignity, surrounded by family and friends who are encouraged to be part of the care-taking process.
Susan finds that patient services provided by hospice organizations include the management of the pain and symptoms of illness, providing medical personnel, medications, medical supplies and medical equipment needed for the care of the terminal illness. In addition to medical support, hospice organizations provide the services of chaplains and social workers to help the patient and the patient’s family adjust to the reality of death and to help them cope with the physical and emotional issues surrounding the dying process. Hospice services also include in-patient care for the patient during periods of acute illness and/ or for caretaker respite, and spiritual, bereavement and other counseling services for the patient and family members.
Hospice services are paid for through the Medicare Hospice Benefit, Medicaid Hospice Benefit, and most private insurers. For hospice patients over the age of 65 who are covered by Medicare Part A, the out-of-pocket costs of hospice care are largely eliminated. If the hospice patient suffers any illnesses or medical issues not associated with the terminal diagnosis, Medicare or private insurers will still continue to insure.
Susan discovers that there are a number of hospice organizations in the area. After interviewing the different hospice organizations, the Culvers discover that even though the organizations provide essentially the same services, each organization has a slightly different character. The Culvers ultimately choose Sundown Hospice, whom they like because of their commitment to providing consistent caregivers, adapting to the schedule and needs of the family and ensuring very personal service.
During the intake session, the Sundown Hospice personnel explain the hospice program to the Culvers, and discuss Gwen’s wishes for her end of life care. Gwen has signed an Advance Health Care Directive, in which she has chosen Peter to make medical decisions for her if she cannot make them herself. Gwen is reassured that she will be made comfortable without any medical treatments or life support procedures to prolong her dying process. Gwen is examined by the Sundown nurse, interviewed by the Sundown social worker and visited by the Sundown chaplain so that a care plan can be established for Gwen’s benefit, doing all that is possible to meet the individual needs of Gwen and her family.
Sundown arranges to have caregivers to help the family learn to care as much as they can for Gwen, with the addition of nursing assistants who will come in several times per week to bathe Gwen and perform other necessary tasks. The Sundown nurse will come twice per week at first, and more frequently as the disease progresses. Sundown has a 24 hour on-call nurse who will be available for any emergencies or questions the Culvers have during non-business hours. If a medical doctor is needed, Sundown’s medical director is available as well.
As the Culvers settle into a routine with Sundown personnel, they feel fortunate to have found such a caring and compassionate organization. Their needs are met and their questions answered by people they have come to view as extended family. Their nurse just “drops in” to check on Gwen when she is in the area, and provides additional emotional support and care for the family.
Their routine is shattered, however, when Gwen’s condition takes a sudden downturn. Peter can no longer care for Gwen at home, and the family begins looking for a nursing home for Gwen. Peter’s first choice is Darby Green, a skilled nursing facility just minutes away from the Culvers’ home. He is pleased with the bright, clean facility and the location will allow him to visit whenever he can.
When Peter and Susan talk to the director of Darby Green about how Sundown can participate in Gwen’s care while she is a resident there, they are told that Sundown cannot attend Gwen in Darby Green because Darby Green does not have a contract with Sundown. The director states that Darby Green has a contract with EndCare Hospice, and he offers to help the Culvers transfer Gwen’s care to EndCare. Peter and Susan decide to think more about what they want to do.
Susan decides to research the Culvers’ options, and consults an attorney about the rules governing hospice care. Susan discovers that the information the Culvers received from the director of Darby Green was incomplete. A patient has the right to choose his or her hospice provider, and the patient has the right to have the chosen hospice provider deliver hospice services in his or her home. When a patient is a resident in a nursing home, an assisted living or other facility, the facility is considered to be his or her home for purposes of determining where hospice care is to be provided.
In the case of Gwen residing at Darby Green and wanting to continue service with Sundown, the fact that Darby Green does not have an existing contract with Sundown is the truth, but only as far as it goes. The rest of the answer to the question is that, under federal law, Darby Green cannot refuse to put a contract with Sundown in place to allow Gwen to receive hospice care from the provider of her choice. The offer made by the director to transfer Gwen’s care to EndCare is misleading; it implies (without actually stating) that only EndCare is allowed to provide hospice services to Darby Green’s residents.
As 1,060,000 people sought hospice services in 2004 (an increase of 110,000 over the previous year), these issues and decisions are some that families face every day. While the Culver’s story is fictional, end-of-life decisions are momentous and jarring and often clouded by grief and anxiety. Since these decisions impact the quality of life experienced by families before and after the death of a loved one, we should be as well informed consumers of health care and end-of-life care as we would be if we were buying any other good or service. Federal and state law mandate that:
Ø When a patient is certified as terminally ill and accepts hospice benefits, the benefits remain in force for certain periods of time. These are referred to as “election periods.” When a patient remains terminally ill, he or she may be unaware that a re-certification occurs at the end of an election period.(CFR TITLE 42 Sec. 418.21);
Ø Federal law allows the patient to choose his or her hospice provider, and, if not satisfied, the patient may elect to change to another hospice provider once during each election period (CFR TITLE 42 Sec. 418.30);
Ø Election of hospice benefits requires a waiver of some other Medicare benefits;
Ø The patient or the patient’s agent/ representative may revoke the election of hospice benefits. Revocation of the election of hospice benefits allows a resumption of the Medicare benefits waived when the hospice benefits were elected, and the revocation lasts for the current election period. If the patient meets certification criteria, he or she may re-elect hospice benefits at after the end of the election period when hospice benefits were revoked;
Ø Hospice service providers may be organized as not-for-profit corporations or as for-profit corporations. Choose your hospice organization on the basis of the quality of service and personnel, as the distinction between for-profit and not-for-profit may be meaningless on the patient level. Remember when comparing the two that a not-for-profit organization cannot realize profit on the corporate level nor return profit to shareholders, but can pay competitive (or larger) salaries to their officers, directors and employees. Not-for-profit organizations typically solicit donations for operating funds, and an argument may be made that, in hospice organizations, the manpower should be spent in operations rather than in solicitation of funds;
Ø For-profit organizations may return their profits to their shareholders. However, because they have shareholders who have invested in the corporation, they may have more funding to spend on operations and have to spend less time and manpower soliciting funds.
Just as consumers may check the reputation of a business with the Better Business Bureau, potential hospice patients may check with the state health department to see if the hospice program(s) they are considering have complaints pending. Under the state freedom of information act, a potential hospice patient may request the state survey summary report records about a hospice agency and its past record, including the hospice agency's plans of correction. It is helpful to request copies of all complaints about a hospice and state inspection survey summary reports relating to such complaints as well. Always specify a time period for which you are requesting records.
Some Hospice Providers in the Northern Virginia Area (in random order):
Right At Home 703/ 538-4584
Community Hospices 866/ 234-7742
Odyssey Health Care 703/ 821-9200
Capital Hospice 703/ 538-2065
Goodwin House Hospice 703/ 578-7217
HomeCall Hospice 703/ 762-1600
Heartland Hospice 703/ 273-8693
Evercare Hospice 703/ 762-1600
VITAS Innovative Hospice Care 703/ 788-6680