December 12, 2005
Dealing with death: Last wishes | Maine has one of the lowest rates of hospice usage in the country, but a growing industry hopes to change that trend
By Taylor Smith
Death isn't a popular conversation topic. It doesn't really work at a cocktail party, and mentioning it around the water cooler is likely to peg you as that morbid co-worker. And what about talking about death and dying with your family? Tumbleweeds and awkward silence. Fact is, there just aren't that many venues in which it's okay to talk about death. "It's about societal and cultural attitudes about death and dying," says Kandyce Powell, executive director of the Maine Hospice Council, a Manchester-based nonprofit advocacy group. "People still find these conversations uncomfortable, and many people choose not to have them at all in their own families or in a health care setting."
But Andrea LeBlanc ˆ together with many others in Maine's hospice industry ˆ wants to make sure that those conversations don't get shelved just because they're difficult or depressing. As hospice program director at Androscoggin Home Care & Hospice in Auburn, LeBlanc's mission is to help make the process of death and dying easier and less painful for patients with life-threatening prognoses. And while LeBlanc can't force people to have these conversations, she says that arming the general public with plenty of information about end-of-life options, including hospice care, will go a long way toward facilitating the discussion of what to do when death comes knocking. "Nationally, hospice is going through almost a growth in terms of cultural understanding and acceptance," she says. "And part of that is reaching out to the community and explaining what hospice is all about."
What organizations like AHCH have been trying to publicize in recent years is that hospice services offer patients approaching death an alternative to traditional medical care, whether delivered at home, in a hospital setting, at a long-term care facility or in a dedicated hospice facility. And those organizations say that hospice services often are a much more attractive option than what's typically offered at hospitals or long-term care facilities. They argue that hospice services can help patients near death by offering a range of services ˆ both to the patient and the patient's family ˆ that include direct care from health care providers and volunteers as well as visits from clergy and bereavement counseling for family members. Medical staff like registered nurses and physicians also help administer palliative care, which doesn't attempt to cure the patient's symptoms, but aims to treat the symptoms and their side effects. The goal is to improve the patient's quality of life.
"I think the more hospice services we can provide, the more people will realize that hospice isn't just about death, but about supporting the patient so they can have quality of life and not have to deal with pain," says LeBlanc.
One way LeBlanc and other hospice workers in Maine hope to spread the word about hospice care options is by upping the profile of such services. For example, AHCH in late October opened its new, $3.7 million Hospice House facility. The 14-room house features private patient rooms as well as separate areas for family members to stay the night. LeBlanc says Hospice House was designed to be more like a patient's home than a hospital room. (The length of patient stays varies from just a few hours to many months, but the treatments are similar regardless of how long they're under hospice care.)
Laurie Windsor, AHCH's marketing director, says the organization began planning in earnest for Hospice House in 2002 after completing an internal needs assessment. For starters, the study found that more people were using the organization's hospice program, and recent figures support the claim that the program is attracting an increasing number of patients: According to Windsor, AHCH in 2003 served 500 patients; through October of this year, the hospice program already had served 820. (Those figures mirror national trends: The Hospice Foundation of America reports that 885,000 patients died while under hospice care in 2002; that number jumped to 950,000 the next year and continues to grow, says Kate Viggiano, the foundation's program specialist.) What's more, the internal assessment pointed to a gap in AHCH's hospice program: "It became apparent that there was this group of patients that could benefit from something like the Hospice House," says LeBlanc. "For patients that could no longer stay at home, a number of them were ending up at the hospital. The hospital is not a place to die."
Sparking demand
In recent months, there have been a handful of significant developments in Maine's hospice industry. On the heels of AHCH's Hospice House ribbon-cutting in October, Portland-based Hospice of Southern Maine announced plans to build the second free-standing hospice facility in the state, an 18-room hospice center in Scarborough that CEO Jody Deegan expects will cost roughly $4 million. The plan has been finalized, says Deegan, and HSM expects to break ground on a 4.7-acre parcel of land off of Route One in the spring.
Many people who work in the hospice industry say such developments are helping to reinforce the fact that the hospice care market is expanding. Industry experts peg the growth of hospice on a few factors, including the aging baby boomer population. And in Maine, that aging population has contributed to a significant demographic shift: In March, Maine earned the dubious distinction of being named the oldest state in the United States by the U.S. Census Bureau, with a median age of 40.6 years. According to census data, 14.4% of Maine's population in 2000 was aged 65 and over. By 2004, that figure had increased to more than 16%; it is expected to hit 21.4% by 2025. Experts agree that the graying population also represents a growing potential market for hospice services. (For a look at baby boomers' impact on the funeral home industry, see "Ashes to ashes," cover.)
But hospice experts say that while they're likely to see an uptick in demand for hospice services as a direct result of that aging population, the real growth in hospice is going to come as the general population becomes more educated about end-of-life care and options like hospice. "There are a lot of misconceptions about what hospice is," says Viggiano of the Hospice Foundation of America.
Most hospice workers say the watershed moment in the industry was the 1995 publication of a Robert Wood Johnson Foundation study in the Journal of the American Medical Association. The study, which looked at hospital care for seriously ill patients, opened by noting that Americans with progressive illnesses increasingly are living longer and more productively thanks to advances in public health and clinical medicine. But some patients, the study says, experienced a period of prolonged dying marked by "substantial emotional and financial expense" as a result of that medical progress. "In the study, it was shocking [to discover] how many people died in pain," says Janet Neigh, vice president for hospice programs at the National Association for Home Care and Hospice in Washington, D.C.
Since the release of that study, the number of Medicare-certified hospice facilities in the United States has grown steadily, from 1,857 in 1995 to more than 2,670 last year. Meanwhile, the Centers for Medicare & Medicaid Services report that the number of patients using hospice services jumped more than 135% during the nine years through 2003, and that Medicare outlays for hospice patients topped $5.6 billion in 2003.
Still, not everyone is convinced that the general public's understanding of hospice has reached a critical mass. Barbara Shaw, chair of the board of directors of Portland-based Hospice of Maine, points to dramatically low usage rates in Maine as evidence that hospice services still are misunderstood. The Robert Wood Johnson Foundation reported that Maine and Alaska in 2000 had the lowest percentage of hospice utilization among residents 65 and older. Only 9.1% of Maine's residents aged 65 and older took advantage of hospice services ˆ well below the national average of 21.5%. "There's a problem in this state getting people to see hospice as a visible [option] and access it as a part of their health care," says Shaw.
Jody Deegan of Hospice of Southern Maine agrees, and adds that even though the benefits hospice services offer to dying patients are significant, the costs are not. That's because hospice care in Maine is fully covered by Medicare and Medicaid, as well as private health insurance companies like Anthem in South Portland, the state's largest private insurer.
What's more, Deegan says Maine residents are paying plenty of money into Medicare and Medicaid through taxes, but few Mainers are taking advantage of covered services like hospice care. According to Centers for Medicare & Medicaid Services figures, Maine hospice patients in 2003 used only $14 million in Medicare funding, ranking the state 36th in the country in such spending.
The fact that Maine residents weren't taking advantage of available hospice services was the impetus behind HSM's plan to build a freestanding hospice facility, says Deegan. The building, she says, is one way to inform people that hospice care is available ˆ a sort of brick-and-mortar reminder that such services exist. "It's horrific that Maine has the second lowest utilization of hospice," says Deegan. "You and I are paying into Medicare as residents in the state of Maine, and residents have the opportunity to be informed and make a choice. With a freestanding hospice, it becomes a visible thing."
A need for outreach
Meanwhile, other hospice organizations in Maine are devising unique ways to spread the word about the availability and benefits of hospice care. AHCH has been running a program for more than three years aimed at providing hospice services in long-term care facilities and encouraging local physician involvement. Hospice of Maine's Shaw says getting the medical community on board with hospice is a top priority: "It's a major hurdle," she says. "I don't think that many providers think about that. I think there sometimes is a reluctance to discuss hospice because it seems like [physicians] have given up on your care."
In an effort to better understand the public's perception of hospice care, the Maine Hospice Council recently commissioned a market research survey by The Potholm Group, a Harpswell-based research firm. MHC Executive Director Kandyce Powell says the survey, which was released in May, will serve as the basis for a new education and public relations push by the group, including public service announcements and brochures.
The survey relayed some good news, including findings that some 84% of those who have used hospice services ˆ both patients and family members ˆ described their experiences as positive. At the same time, the survey gauged how much confusion still surrounds hospice services, ranging from where to go for such services to how hospice services are paid for. For example, even though half of the survey's respondents said they'd consider seeking hospice care for a family member diagnosed with a terminal illness, 43% said they wouldn't know how to get in touch with an organization that offers such services. Ten percent of respondents said they thought hospice services were all-volunteer programs, while 16% said hospice was a medical-nursing program. A full 42% of respondents said they weren't familiar with the nature of hospice programs.
Meanwhile, Hospice of Maine outlined plans this fall to streamline its operations by ending its long-time hospice volunteer program. The organization's program provided volunteer hospice workers to groups like Hospice of Southern Maine and VNA Home Health Care, a South Portland affiliate of Portland's Mercy Hospital. Under the new plan, those volunteers will be transferred to those full-scale hospice organizations. And while Hospice of Maine's announcement to axe its volunteer program could be seen as a signal of weakness in the hospice market, Barbara Shaw denies that any internal problems at Hospice of Maine contributed to the decision, adding that the organization is on solid financial footing.
Instead, she describes the move as a well-intentioned effort to reduce consumer confusion about hospice services. "One of the things that's characteristic of hospice services in Maine is that it's very fragmented. Pieces of it can be found in various agencies," she says. "By transitioning our volunteers to the existing hospice services of VNA Home Health Care and Hospice of Southern Maine, it will provide a more coherent package for people."
Though the general consensus among hospice experts is that there's still plenty of work to do in Maine, most point to current hospice trends ˆ including the emergence of freestanding hospice facilities ˆ as proof that hospice care is gaining a foothold in a state that has been perennially underserved. Meanwhile, hospice workers like Jody Deegan at HSM figure that, like it or not, there will always be a slice of the population that is a good fit for hospice care. "We live in a country where we have so many medical advances that we can do a lot of things to postpone death, but unfortunately we haven't found a way to prevent it," says Deegan.
And the top priority for organizations that offer hospice service is to convince those people that hospice is the right choice. "What we find really changes how people think about end-of-life care is actually when you get consumers demanding change," says Kandyce Powell of the Maine Hospice Council. "That's the way it is with social change. And the critical mass you'd look for in social change, we haven't seen that yet in end-of-life care."
But Andrea LeBlanc ˆ together with many others in Maine's hospice industry ˆ wants to make sure that those conversations don't get shelved just because they're difficult or depressing. As hospice program director at Androscoggin Home Care & Hospice in Auburn, LeBlanc's mission is to help make the process of death and dying easier and less painful for patients with life-threatening prognoses. And while LeBlanc can't force people to have these conversations, she says that arming the general public with plenty of information about end-of-life options, including hospice care, will go a long way toward facilitating the discussion of what to do when death comes knocking. "Nationally, hospice is going through almost a growth in terms of cultural understanding and acceptance," she says. "And part of that is reaching out to the community and explaining what hospice is all about."
What organizations like AHCH have been trying to publicize in recent years is that hospice services offer patients approaching death an alternative to traditional medical care, whether delivered at home, in a hospital setting, at a long-term care facility or in a dedicated hospice facility. And those organizations say that hospice services often are a much more attractive option than what's typically offered at hospitals or long-term care facilities. They argue that hospice services can help patients near death by offering a range of services ˆ both to the patient and the patient's family ˆ that include direct care from health care providers and volunteers as well as visits from clergy and bereavement counseling for family members. Medical staff like registered nurses and physicians also help administer palliative care, which doesn't attempt to cure the patient's symptoms, but aims to treat the symptoms and their side effects. The goal is to improve the patient's quality of life.
"I think the more hospice services we can provide, the more people will realize that hospice isn't just about death, but about supporting the patient so they can have quality of life and not have to deal with pain," says LeBlanc.
One way LeBlanc and other hospice workers in Maine hope to spread the word about hospice care options is by upping the profile of such services. For example, AHCH in late October opened its new, $3.7 million Hospice House facility. The 14-room house features private patient rooms as well as separate areas for family members to stay the night. LeBlanc says Hospice House was designed to be more like a patient's home than a hospital room. (The length of patient stays varies from just a few hours to many months, but the treatments are similar regardless of how long they're under hospice care.)
Laurie Windsor, AHCH's marketing director, says the organization began planning in earnest for Hospice House in 2002 after completing an internal needs assessment. For starters, the study found that more people were using the organization's hospice program, and recent figures support the claim that the program is attracting an increasing number of patients: According to Windsor, AHCH in 2003 served 500 patients; through October of this year, the hospice program already had served 820. (Those figures mirror national trends: The Hospice Foundation of America reports that 885,000 patients died while under hospice care in 2002; that number jumped to 950,000 the next year and continues to grow, says Kate Viggiano, the foundation's program specialist.) What's more, the internal assessment pointed to a gap in AHCH's hospice program: "It became apparent that there was this group of patients that could benefit from something like the Hospice House," says LeBlanc. "For patients that could no longer stay at home, a number of them were ending up at the hospital. The hospital is not a place to die."
Sparking demand
In recent months, there have been a handful of significant developments in Maine's hospice industry. On the heels of AHCH's Hospice House ribbon-cutting in October, Portland-based Hospice of Southern Maine announced plans to build the second free-standing hospice facility in the state, an 18-room hospice center in Scarborough that CEO Jody Deegan expects will cost roughly $4 million. The plan has been finalized, says Deegan, and HSM expects to break ground on a 4.7-acre parcel of land off of Route One in the spring.
Many people who work in the hospice industry say such developments are helping to reinforce the fact that the hospice care market is expanding. Industry experts peg the growth of hospice on a few factors, including the aging baby boomer population. And in Maine, that aging population has contributed to a significant demographic shift: In March, Maine earned the dubious distinction of being named the oldest state in the United States by the U.S. Census Bureau, with a median age of 40.6 years. According to census data, 14.4% of Maine's population in 2000 was aged 65 and over. By 2004, that figure had increased to more than 16%; it is expected to hit 21.4% by 2025. Experts agree that the graying population also represents a growing potential market for hospice services. (For a look at baby boomers' impact on the funeral home industry, see "Ashes to ashes," cover.)
But hospice experts say that while they're likely to see an uptick in demand for hospice services as a direct result of that aging population, the real growth in hospice is going to come as the general population becomes more educated about end-of-life care and options like hospice. "There are a lot of misconceptions about what hospice is," says Viggiano of the Hospice Foundation of America.
Most hospice workers say the watershed moment in the industry was the 1995 publication of a Robert Wood Johnson Foundation study in the Journal of the American Medical Association. The study, which looked at hospital care for seriously ill patients, opened by noting that Americans with progressive illnesses increasingly are living longer and more productively thanks to advances in public health and clinical medicine. But some patients, the study says, experienced a period of prolonged dying marked by "substantial emotional and financial expense" as a result of that medical progress. "In the study, it was shocking [to discover] how many people died in pain," says Janet Neigh, vice president for hospice programs at the National Association for Home Care and Hospice in Washington, D.C.
Since the release of that study, the number of Medicare-certified hospice facilities in the United States has grown steadily, from 1,857 in 1995 to more than 2,670 last year. Meanwhile, the Centers for Medicare & Medicaid Services report that the number of patients using hospice services jumped more than 135% during the nine years through 2003, and that Medicare outlays for hospice patients topped $5.6 billion in 2003.
Still, not everyone is convinced that the general public's understanding of hospice has reached a critical mass. Barbara Shaw, chair of the board of directors of Portland-based Hospice of Maine, points to dramatically low usage rates in Maine as evidence that hospice services still are misunderstood. The Robert Wood Johnson Foundation reported that Maine and Alaska in 2000 had the lowest percentage of hospice utilization among residents 65 and older. Only 9.1% of Maine's residents aged 65 and older took advantage of hospice services ˆ well below the national average of 21.5%. "There's a problem in this state getting people to see hospice as a visible [option] and access it as a part of their health care," says Shaw.
Jody Deegan of Hospice of Southern Maine agrees, and adds that even though the benefits hospice services offer to dying patients are significant, the costs are not. That's because hospice care in Maine is fully covered by Medicare and Medicaid, as well as private health insurance companies like Anthem in South Portland, the state's largest private insurer.
What's more, Deegan says Maine residents are paying plenty of money into Medicare and Medicaid through taxes, but few Mainers are taking advantage of covered services like hospice care. According to Centers for Medicare & Medicaid Services figures, Maine hospice patients in 2003 used only $14 million in Medicare funding, ranking the state 36th in the country in such spending.
The fact that Maine residents weren't taking advantage of available hospice services was the impetus behind HSM's plan to build a freestanding hospice facility, says Deegan. The building, she says, is one way to inform people that hospice care is available ˆ a sort of brick-and-mortar reminder that such services exist. "It's horrific that Maine has the second lowest utilization of hospice," says Deegan. "You and I are paying into Medicare as residents in the state of Maine, and residents have the opportunity to be informed and make a choice. With a freestanding hospice, it becomes a visible thing."
A need for outreach
Meanwhile, other hospice organizations in Maine are devising unique ways to spread the word about the availability and benefits of hospice care. AHCH has been running a program for more than three years aimed at providing hospice services in long-term care facilities and encouraging local physician involvement. Hospice of Maine's Shaw says getting the medical community on board with hospice is a top priority: "It's a major hurdle," she says. "I don't think that many providers think about that. I think there sometimes is a reluctance to discuss hospice because it seems like [physicians] have given up on your care."
In an effort to better understand the public's perception of hospice care, the Maine Hospice Council recently commissioned a market research survey by The Potholm Group, a Harpswell-based research firm. MHC Executive Director Kandyce Powell says the survey, which was released in May, will serve as the basis for a new education and public relations push by the group, including public service announcements and brochures.
The survey relayed some good news, including findings that some 84% of those who have used hospice services ˆ both patients and family members ˆ described their experiences as positive. At the same time, the survey gauged how much confusion still surrounds hospice services, ranging from where to go for such services to how hospice services are paid for. For example, even though half of the survey's respondents said they'd consider seeking hospice care for a family member diagnosed with a terminal illness, 43% said they wouldn't know how to get in touch with an organization that offers such services. Ten percent of respondents said they thought hospice services were all-volunteer programs, while 16% said hospice was a medical-nursing program. A full 42% of respondents said they weren't familiar with the nature of hospice programs.
Meanwhile, Hospice of Maine outlined plans this fall to streamline its operations by ending its long-time hospice volunteer program. The organization's program provided volunteer hospice workers to groups like Hospice of Southern Maine and VNA Home Health Care, a South Portland affiliate of Portland's Mercy Hospital. Under the new plan, those volunteers will be transferred to those full-scale hospice organizations. And while Hospice of Maine's announcement to axe its volunteer program could be seen as a signal of weakness in the hospice market, Barbara Shaw denies that any internal problems at Hospice of Maine contributed to the decision, adding that the organization is on solid financial footing.
Instead, she describes the move as a well-intentioned effort to reduce consumer confusion about hospice services. "One of the things that's characteristic of hospice services in Maine is that it's very fragmented. Pieces of it can be found in various agencies," she says. "By transitioning our volunteers to the existing hospice services of VNA Home Health Care and Hospice of Southern Maine, it will provide a more coherent package for people."
Though the general consensus among hospice experts is that there's still plenty of work to do in Maine, most point to current hospice trends ˆ including the emergence of freestanding hospice facilities ˆ as proof that hospice care is gaining a foothold in a state that has been perennially underserved. Meanwhile, hospice workers like Jody Deegan at HSM figure that, like it or not, there will always be a slice of the population that is a good fit for hospice care. "We live in a country where we have so many medical advances that we can do a lot of things to postpone death, but unfortunately we haven't found a way to prevent it," says Deegan.
And the top priority for organizations that offer hospice service is to convince those people that hospice is the right choice. "What we find really changes how people think about end-of-life care is actually when you get consumers demanding change," says Kandyce Powell of the Maine Hospice Council. "That's the way it is with social change. And the critical mass you'd look for in social change, we haven't seen that yet in end-of-life care."
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