Hospice of Martha's Vineyard faces tough choices
Two Vineyard nonprofit service agencies are at odds this winter. Each has served the Martha's Vineyard community for a quarter of a century. Each has strong followings of loyal supporters grateful for the vital help provided in times of great stress.
The Vineyard Nursing Association (VNA) announced this winter that it has made a choice to offer a Medicare-certified hospice benefit to its clients, beginning in 2010. Hospice of Martha's Vineyard (HMV), which has always proudly rejected Medicare certification in order to offer end-of-life care independent of Medicare's rules, must decide whether to join VNA as a Medicare-certified agency or continue independently, as it has for the past 28 years. At the moment, it appears that HMV will not join VNA, and that VNA's course is set.
Defining the terms
"Hospice care" and "end-of-life care" are not exactly synonymous terms, but both mean help for a person who is dying, and by extension the dying person's loved ones.
"End-of-life care" is a broader term. Some patients or their families do not accept the diagnosis that the disease is terminal. Doctors can be wrong. Miracles do happen. However, patients who refuse to enter a hospice program still need the same kinds of help for the ends of their lives.
The help often includes nursing care, home health services, control of pain in a variety of ways, counseling and spiritual comfort, and practical support for the patient and the family.
The term "hospice" is more narrowly applied as care to a person who has received and provisionally accepted a diagnosis that the disease cannot be cured and that the end of life, while not exactly predictable, is near. Although a person who is in hospice care may continue to fight the disease, try to live as long as possible, and even hope for a miracle cure, "hospice" implies that the focus of care should be on helping the patient and the family through the final stages of a terminal illness. The goal is to make the patient's final weeks and days as happy and productive as possible.
A "hospice benefit" is a kind of coverage included in Medicare. If a patient has a doctor's diagnosis that he or she has less than six months to live, a Medicare-certified hospice program will provide all medications, palliative radiation, equipment (such as a hospital bed), occupational and physical therapies, home health aides (for example, for bathing), and social counseling. If the patient lives longer than six months, the hospice benefit may be renewed, but, as HMV points out, it may not begin before the six-months-to-live point.
Hospice of Martha's Vineyard
HMV is certified as a hospice by the Massachusetts Department of Public Health (DPH). For 28 years, almost since the start of the hospice movement in the United States, HMV has provided care and support for dying patients and their families. Financed entirely through local fundraising, HMV provides professional nursing care and the services of a professional social worker. Non-professional volunteers are a large part of HMV and assist the patient and his family by running errands, doing housework, spending time with the patient or the family, or in any other way they are requested. According to HMV executive director Terre Young, during the early stages of support, an HMV nurse will visit once or twice a week, offering care and information about the progression of the disease. The HMV medical director and the social worker will make at least one visit, and trained volunteers will contribute about two hours a week. If requested, the HMV chaplain will call or arrange for other clergy. When the patient is actively dying, the nurse (and volunteers as requested) will be there much more frequently. HMV is on call 24 hours a day. HMV also offers bereavement counseling. Through it all, Ms. Young stressed, the family, not HMV, is in charge.
While all of HMV's services are free, other medical needs must be paid for by the patient's insurance. These include drugs, therapists, home health aides, and medical equipment. Of 61 HMV patients in 2008, 21 received home health aides' care from VNA, and the rest received care from other providers or their families. There is a small fund, called the Christopher Fund, which can help HMV clients who don't have insurance.
Why HMV rejects Medicare
According to Ms. Young, the board of directors of HMV conducts periodic reexaminations of its policies, including the decision not to seek Medicare certification. Because HMV does not have a six-months-to-live rule, it can begin working with clients and families early in the course of a life-threatening illness. Perhaps, Ms. Young, said, a person will come to HMV a year or more before he or she needs hospice care, to learn about the progression of the disease and to get counseling about the options.
"Hospice will help the patient fight, too," Ms. Young adds. That person may go away for months, even for a year, before reaching the final stages of the illness. During that time, the patient's family can receive counseling. In fact, family members sometimes come to HMV for counseling, even when the patient does not.
Additionally, the HMV board has concluded that the same level of care would cost HMV more than the Medicare per diem payment would pay, because of the additional services that would be required.
The Martha's Vineyard Times asked Ms. Young whether she thinks the proposed VNA program will hurt HMV fundraising.
"Possibly, because of the confusion of two programs," she said. "But I'm more concerned that patients will be confused."
Robert Tonti, VNA chief executive officer, told The Martha's Vineyard Times last week that the reason that VNA plans to open a hospice program is that it will be a financial benefit to Vineyarders who face a terminal illness. He objected to the idea that the VNA is somehow trying to hurt HMV. "It's not what we're doing 'to hospice,' but what we're doing 'for the community,'" he said.
VNA director of clinical services Sandie Corr-Dolby pointed out that VNA has been providing end-of-life services (as opposed to hospice services) to Vineyard patients for 25 years - but without some of the volunteer support and bereavement counseling offered by HMV. In 2008, of 81 VNA patients who were terminally ill, 21 elected to receive hospice support from HMV, and 60 decided to continue the care they were receiving from VNA. For those who would accept the "terminal" diagnosis, the Medicare hospice benefit would have provided complete care for the rest of their lives, without any additional insurance claims.
It is Ms. Corr-Dolby's hope that the VNA will soon be able to provide a seamless transition from regular medical care (nursing, therapists, social workers, etc.) to free hospice care (all the earlier care plus end-of-life care and support).
Mr. Tonti expects that VNA will be certified as a hospice program by the Massachusetts DPH in mid-May. Certification by Medicare will take longer - he hopes by the end of the year. "We already have the staff in place," he says. Beginning next year, VNA clients could receive the Medicare hospice benefit.
Ms. Corr-Dolby rejects the suggestion that the VNA is adding hospice care in order to make money.
Mr. Tonti said that the VNA hospice would lose money in its first year. Like all nonprofits, VNA must raise money to stay in business. However, he told The Martha's Vineyard Times that, depending on how long patients stay in the program and what services they need, there is a possibility that in the long run the VNA hospice might show a small profit.
David Rehms, CEO of Hospice of Cape Cod, calls the Medicare hospice benefit "one of the great successes of the Medicare program." However, in a telephone interview last week he warned that a small Medicare-certified program, such as the Vineyard's, runs the risk of encountering a patient with very expensive needs, because the hospice care assumes the cost of all treatments. Each agency sets its own rules, and a small program may have to defer admission to hospice care until after all expensive attempts at a cure (radiation, chemo-therapy, MRIs, etc.) have ended.
There remains the question of whether the VNA will continue to offer non-hospice services to clients of HMV when VNA has its own hospice program? Mr. Tonti told The Martha's Vineyard Times that VNA has not answered that question yet "It may not be in our best interests [to provide services to HMV patients], but we'll do what's best for the patient," he said.
Could HMV join VNA?
Mr. Tonti says he hopes that he can bring the two organizations together, under the VNA banner. "They could still be Hospice of Martha's Vineyard," he says, "but under the direction VNA." If HMV joined VNA and agreed to follow Medicare guidelines, its clients would automatically qualify for the Medicare hospice benefit; HMV would not need independent Medicare certification.
However, it is unclear how such an arrangement might work. HMV would have to reverse what has been a longstanding attribute of its program, losing its independence not only to Medicare rules but to a certain amount of control by the VNA.
Ms. Young says that such a merger is unlikely. Still, she expresses respect for VNA. "They're good people," she said. "They care about their patients. They do a good job. I don't want to speak against the VNA."
Both Ms. Young and Mr. Tonti told The Martha's Vineyard Times that in the past weeks each organization has received an outpouring of support from the public - though perhaps not from the same individuals.
