| United Hospice of Rockland Help When Time Matters Most |
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| Saturday, 31 October 2009 15:12 | ||
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In the process, they have made this final chapter of life easier, if no less sad, for thousands upon thousands of county residents over the last 20 years. “There are two types of people in the world,” says Stern, the organization’s long-time Executive Director, “those who have already had a hospice experience and those who are going to have one but don’t know it yet. There is no way for any of us to escape this world without dying.”
“We take care of people at the end of life and help them spend that time the way they see fit,” says Stern, “hopefully with the minimal amount of symptoms that are causing them any distress, while also addressing other needs they may have.” Less than half of hospice patients have cancer. Others may have end-stage emphysema, cardiac disease, Alzheimer’s, ALS and other chronic illnesses which have reached their terminal phase. Hospice services often begin prior to a patient being discharged from the hospital. “We have a team that works with hospital staff to determine the symptoms that need to be addressed, the type of care the person is going to need, who will provide that care, where the gaps are and how much help the person is willing to accept,” says Stern. Hospice takes over responsibility for all care relating to the terminal illness, including medication and treatments to alleviate symptoms and improve the patient’s quality of life. Patients are still entitled to receive all normal medical care with one exception, treatment or medication intended to cure the terminal illness itself. “For most of our patients, there really aren’t any curative treatments so they are not giving up very much,” says Stern. Hospice brings any medical equipment that may be needed – hospital bed, commode, wheelchair, etc. – right into the patient’s home. A key component of hospice care is the paraprofessional home health aide who provides direct, hands-on care for patients. “It is very seldom that anyone calls hospice to find a social worker,” says Stern who began with the agency in just that role when it opened in 1988. “They call for the aide who is going to roll up her sleeves and help with the bathing, dressing, toileting and meal preparation and make the situation manageable for the caregiver.” Another critical element is 24/7 on-call staff. “Families can always call for questions about medications or other issues,” says Stern. “Or, if they call to tell us that mom is short of breath, a nurse will go out, call a physician if necessary and provide appropriate care. It would be great if problems only occurred Monday-Friday, 9:00 to 5:00, but that isn’t going to happen.” In the Beginning United Hospice of Rockland was established in 1988. “There were people in the health care community who felt there needed to be another way to take care of the dying,” says Stern. Three local organizations – Good Samaritan Hospital, Nyack Hospital and the County itself – were already trying to offer some services through their existing programs. Each wanted to do more. But, it wasn’t that easy. “In New York State, you can’t just hang up a shingle,” says Stern. “You need a Department of Health License and there is a Certificate of Need process.” The local health systems planning agency for the Hudson Valley questioned whether three separate hospices would be viable in such a small county. “Ergo, we are United Hospice of Rockland,” explains Stern. “Each of the three founding agencies contributed two employees to the board and selected one community member. No one thought it was good advice at the time, but in hindsight, I think it was the right path.” The organization’s founding came at a time when the entire hospice movement in the U.S. was still relatively young. “Everything was just beginning,” says Stern. “Congress had first created a Medicare hospice benefit in 1983.” It was that reimbursement stream which shaped the way hospices would be structured in this country. “They designed the benefit based on how much money there was, not because they thought it was the best way to set up hospice,” says Stern. Unlike Europe, where hospices began as facilities where patients moved to receive care, hospice services in the U.S. evolved primarily as an in-home service. “Our program has always focused on allowing people to stay at home,” says Stern. Home, in this case, can mean a variety of things. It can be the patient’s own house or apartment, or those of a family member. It can also be a nursing home where a patient may have been living for several years. “Now, about 20% of our care is provided in nursing homes,” Stern continues. “We have contracts with all but one of the nursing homes in the County to provide hospice care.” A Hospice Residence At the same time, however, it is clear that in-home care is not possible for everyone. “They may not have the family support,” says Stern. “The spouse could be elderly and frail or family doesn’t live close by. Families may not be able to stop working to provide care.” In response, United Hospice of Rockland has been working for many years to develop its own hospice residence for patients who are unable to remain at home. It is now a dream that appears near to becoming a reality. (See sidebar above.) Going Mainstream “In the early days, hospices were considered something of a fringe group,” says Stern. “Now, we are generally considered to be mainstream by most healthcare professionals.” Nevertheless, she believes that too few members of the general public – and not even all physicians -- understand what hospices do and how they can dramatically improve the quality of life for dying patients – and their families. “I once heard a physician tell a patient that the last alternative was simply ‘to do nothing and call hospice’,” says Stern, who quickly offered an alternative explanation of hospice services. “Calling in hospice doesn’t mean doing ‘nothing’. It means calling in a team of professionals who will aggressively treat your symptoms to make sure you are comfortable, provide support for you and your family and empower you to make critical decisions that are right for you.” In fact, hospices directly address the primary concerns shared by the majority of dying patients as measured in a variety of studies. “Most people say that they don’t want to be a burden to their families; they don’t want to suffer; they don’t want their care to be a financial drain and they want their symptoms to be managed. That is everything that hospice does,” says Stern. Hospices typically have among the highest patient satisfaction rates of any healthcare services. “One hundred percent of families that answer our own survey say they would recommend hospice to others and 90% say they wish they had known about hospice sooner,” says Stern. It is easy to understand why they would have wanted to come earlier. The median length of stay for patients at United Hospice of Rockland is just 16 days. “One third of our patients are with us for only two weeks,” says Stern. “They are not coming to us at the end of life. They are coming at the brink of death.” Why so late? Often physicians make a referral by simply suggesting the family call hospice. “It is the hardest call a family member has to make,” says Stern. “Sometimes people feel that just by calling hospice, they are going to hasten a family member’s death.” Actually, the opposite is true. “Recent research has shown that for certain diagnostic categories, hospice patients tend to have a longer life expectancy,” says Stern. The result is not surprising, she explains, once you realize that treatment aimed at reducing pain and increasing quality of life can allow patients to eat, sleep and enjoy the company of family and friends. The tendency of patients and families to wait until the last minute before availing themselves of hospice services is very unfortunate, says Stern. “We always feel we should have been involved earlier. We could have made them more comfortable. When we get people for 14 days, every day is a crisis.” How long should patients be on hospice care? “Obviously, we would like to be involved for close to six months, but at that point people may still be active or even working and not feel they need to have hospice coming in,” says Stern. “I would much rather hear from someone early, stay in contact and then figure out together when we should come in.” Financial Challenges The short length of service also adds to the significant financial challenges of running a hospice program. United Hospice of Rockland receives most of its revenue in the form of per diem reimbursement for what is known as “routine home care”, which includes visits from staff, medical supplies and equipment, plus 24-hour on-call support. “At $175 per day, it is the biggest bargain in health care,” says Stern. “When Congress set the original rate, they believed you were going to have patients for an average of about 50 days,” Stern explains. The assumption was that programs would have a high cost period at the beginning when they were setting up services and a high cost period at the end. In between, there would be a relatively quiet, lower-cost period during which programs could bank savings to cover extremes at both ends – plus the required bereavement services for family members after the patient’s death. “When you have patients for 16 days, there is not a lot of downtime,” says Stern. If they are in the program less than ten days, hospices may not cover the initial costs of just medications, equipment and supplies. As a result, United Hospice of Rockland must find a variety of ways – including volunteers and fundraising -- to cover the remaining non-reimbursed costs of basic hospice services. Bereavement Hospices are required to offer bereavement services for family members of patients for a 13-month period after death. “You could offer a bereavement program that is perfectly acceptable to the regulators by making a few phone calls and sending out brochures on how to cope with the holidays,” says Stern. “The social worker in me would never let us do that.” Instead, UHR offers those services as well as individual counseling and a variety of ongoing bereavement groups that meet weekly for individuals in varying situations. “We have a bereavement group for parents who have lost children and our Healing Hearts program is for children who have suffered a loss,” says Stern. After 9/11, UHR acted quickly to offer services for family members of the more than 70 victims who were Rockland County residents. The agency was so active that its headquarters office in New City became home to the Rockland Assistance Center where multiple local agencies came together to offer 9/11-related services for the next two years. Palliative Care UHR also offers Palliative Care services for individuals who are either not eligible or not yet ready to participate in the full hospice program. “Some individuals have a chronic, progressive disease but do not have a life expectancy of just six months,” says Stern. “In other cases, people may not be ready to sign the election form for hospice care. Putting their signature on something is beyond what they can cope with.” In these cases, UHR provides services to relieve pain and address symptoms. It looks similar to hospice care without the reimbursement. “We can offer them nursing, social work and spiritual care. We just can’t offer the full range of hospice care,” says Stern. For UHR, which is licensed only as a hospice, there is no reimbursement stream to support palliative care. “None whatsoever other than a small grant,” says Stern. Volunteers “Volunteers are a huge part of our operation,” says Stern. Many of the hospice’s 275 volunteers are involved in direct patient and family care. “They do anything or everything a friend or family member would do -- sit with a patient so a family member can get out, provide transportation and child care,” says Stern. “They go through a very comprehensive training program and receive ongoing education and support as well as supervision for each patient.” Other volunteers work in the bereavement program or help out with fundraising, office work or gardening. Youth for Hospice is a special initiative in which high school students help the organization at fundraising efforts, special events, etc. “Whatever skill or interest you have, we can find a way for you to help,” says Stern. “Many healthcare services use volunteers,” says Stern. “But, hospices actually are required to demonstrate a cost savings equal to five percent of the agency’s total direct care staff cost. No other health care entity has to do that. My theory is that when they set the reimbursement, they knew we were underfunded and decided to have us make it up with volunteers.” Fundraising UHR raises about 10% of its budget each year through private contributions. “We live in a community that has been very generous over the years,” says Stern. “Their support has enabled us to do much more than we would have been able to do otherwise.” Over the years, UHR has touched the lives of many Rockland County residents. “Families are the greatest supporters of Hospice,” says Stern. Their gifts come in a variety of forms, including the proceeds from an annual gala and golf tournament. While UHR does not solicit patients, the agency does get memorial gifts. “We have the opportunity to spend time with people at the end of their life and they are grateful,” says Stern. Looking Ahead The future seems filled with challenges for UHR. A Medicare rate cut, originally scheduled to take effect last year but delayed as part of the stimulus package, is now expected to slice $200,000 from UHR’s funding in the current federal fiscal year. Healthcare reform holds its own risks. “A proposal in the Senate Finance Committee bill would include a 12 percent cut,” says Stern. “We can’t make that up.” Meanwhile, the population likely to need hospice services continues to grow as baby boomers age and more and more residents confront chronic and terminal illnesses. “I always tell our staff that our census should be 200 instead of 120,” says Stern. However, the struggle to provide high quality hospice care is worth the effort. “People always ask me whether the work we do is depressing,” says Stern. “I would say it is sad, but not depressing. We get to help families give the last gift they possibly can give someone – taking care of them at the end of life. Hardly a day goes by that we don’t get some sort of beautiful thank you note from a family and each staff member knows that their work has made a difference in the lives of those people.”
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Death and dying! End of life! These are not things which most of us want to think about, either for ourselves or our loved ones. Yet they are issues that Amy Stern and the hundreds of staff and volunteers at United Hospice of Rockland prepare for and deal with all the time. 
Hospice services are available for individuals who have been diagnosed with a terminal illness and have a life expectancy of six months or less. United Hospice of Rockland provides primarily home-based care for an average of 120 patients at any point in time through teams of nurses, home health aides, social workers, music and massage therapists, spiritual counselors and volunteers. 
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