by Naomi Naierman and Marsha Nelson
Since its inception, hospice has been ahead of its time, focusing on delivering high-quality, holistic care to patients and families, with features that are only recently being adopted by the rest of the healthcare system. National attention has belatedly turned to patient-centered care and improved care coordination, which have always been key tenets of hospice. Policies now aim to reduce unplanned hospital readmissions, excessive emergency visits, and overuse of services – all of which contribute to a sharp rise in healthcare costs and all of which have been shown to be reduced by hospice.
As the U.S. healthcare system evolves, we would do well to embrace and preserve the best of hospice care. For four decades, hospice has been quietly modeling a patient/family-centered approach to caring for people at the end of life.
- Whole-person care. A plan of care is based on the patient’s needs and wishes. This plan is re-visited weekly by the patient and his or her interdisciplinary hospice team. Grief support is an important aspect of the services offered by hospice. After the death, the family is offered bereavement support for at least one year. Such follow-up is not available even in trauma centers, where families who have experienced tragedies are sent home with little or no support toward their emotional recovery.
- Focused on comfort. Hospice puts an emphasis on managing pain and other symptoms. Quality of life is the guiding goal, and hospices address pain and discomfort on the physical, psychological, social and spiritual levels using both medical and non-medical interventions, such as massage, music and even pet visits.
- Interdisciplinary. Hospice is required by Medicare to be delivered by an interdisciplinary team, which includes nurses, doctors, health aides, social workers trained volunteers and clergy, and may also include dieticians and occupational, speech, and physical therapists, and dieticians as needed.
- Home-based (wherever that may be). In England, hospice was a hospital-based medical model but when it was introduced in the United States, it was adapted to a home-based model. Most hospice patients are cared for at home, where studies have shown most prefer to die. A patient’s home may be wherever he or she is living – a private home, a nursing home, or an assisted living facility. When it is not possible for hospice patients to die at home, they can receive inpatient hospice care in special inpatient units or hospice-contracted beds in hospitals or nursing homes.
- Efficient and high-quality care. Hospice patients are supported in a way that reduces emergency room visits and unplanned hospital admissions. While pain management is not a central focus in the health care system at large, hospice clinicians have considerable expertise in managing pain. Hospice contributes to better care, as its presence in nursing homes has been shown to correlate with better performance in pain management compared with nursing homes that do not partner with hospice providers. Patients with cancer who die in hospitals or intensive care units have been found to have a poorer quality of life compared with patients who die at home with hospice.
- Ongoing involvement. Medicare requires that bereavement support be made available to hospice family members for up to a year after a death. Some hospices go even further by offering support groups to the whole community, sponsoring grief camps, and training grief professionals.
What do we see in the future for hospice – and what do we hope that future will look like?
Consumers will be able to compare hospices based on their performance. Not all hospices are alike. Recent examination by the Washington Post showed that the type and quality of offered services can vary. That’s why consumers need – and want – data to compare alternative hospices in their community. Without reliable data, those looking for care have only anecdotes to help them make what is arguably one of the most important healthcare decisions they will ever make. There is currently no way to answer the question about which hospice is most appropriate, because there is no available comparative data on quality of care. Even the most well informed hospice experts are uninformed consumers as to which hospice to choose for themselves, their friends, their relatives.
Recently, there have been concerted efforts to bring hospice quality measures to the public. The Affordable Care Act of 2010 requires the Centers for Medicare & Medicaid Services (CMS) to publish a hospice public report, rendering hospice care more transparent and helping dying patients and their families make more informed choices about options for care at life’s end. CMS is building a survey tool to assess the experience of family caregivers, which will be used in a Hospice Compare website in the foreseeable future.
NQF convened a steering committee of experts who endorsed hospice measures for quality improvement and public reporting. These measures were designed for retrospective evaluation by family caregivers, but not for prospective comparisons among hospice providers. To ensure that the NQF measures would be useful to consumers in making prospective decisions, American Hospice Foundation, in collaboration with Altarum Institute’s Center for Consumer Choice, conducted a study to determine which NQF measures would be useful in comparing hospices and how consumers want that information displayed. Entitled “What Consumers Want to Know About Quality When Choosing a Hospice Provider,” and funded by the Agency for Healthcare Research and Quality (AHRQ), this study confirmed that most of these measures would be useful for prospective decisions, though some consumers would need an educational module in a hospice report card that explains how hospice works. (American Journal of Hospice and Palliative Care, March 4, 2014)
To move the industry closer to a hospice consumer report card that will be readily available and easily understood, the American Hospice Foundation funded Altarum Institute’s Center for Consumer Choice to develop a web-based tool that enables a user to select the best hospice for their situation, based on their preferences. This tool will build on available hospice quality measures.
Payers will pay differently based on hospice quality. Most people with a terminal illness are eligible for hospice care that is paid for by Medicare, Medicaid, Veteran’s Benefits, or private insurance. These payers need data that enable them to factor quality of hospice care into their reimbursement and contracting decisions. Hospice quality and value must be central in policy decisions.
The Medicare Payment Advisory Commission (MedPAC) recommended to Congress that Medicare Advantage (MA) health plans include the Medicare hospice benefit as a part of their benefits package in 2016. Access to comparative quality data for hospices allows payers to incorporate quality into decision-making. If MA plans incorporate quality data into their contracting process and select higher performing hospices, beneficiaries would be more likely to receive high-quality hospice care.
Barriers to care will be reduced. In the future, we hope Medicare eligibility rules for hospice will no longer require patients to “give up” their curative care benefits to access the Medicare Hospice Benefit. This is one reason so many patients enter hospice only in the last days of life. A more reasonable approach is to allow “concurrent care,” where hospice services can be started while someone is still receiving curative care. As we write this, the Center for Medicare & Medicaid Services (CMS) is about to embark on a three-year project to evaluate whether providing hospice services earlier in an illness alongside curative care can improve quality of life among patients and reduce Medicare spending.
If palliative care were to be provided soon after a terminal diagnosis, entry to hospice care would be more timely. Currently, about a third of hospice patients die within seven days of admission to hospice. This short length of stay compromises the quality of care that hospices can provide. We envision a future where regulatory reform facilitates broader access to hospice by funding palliative care in which hospices excel.
Employers will address the impact of unmanaged workplace grief. After a tragic loss, grieving employees too often return to an unsupportive workplace that only complicates their grief process. Colleagues may not be able to convey comforting words and supervisors expect high levels of productivity that are hard to resume soon after a loss. We envision a workplace where colleagues and supervisors readily offer condolences and willingly make accommodations that ease the painful grief journey.
Unaddressed grief costs not only businesses, but also the healthcare system at large. Grief reduces productivity due to absenteeism, mistakes, turnover and increased use of health benefits. As reported by the Wall Street Journal in November 2002, the annual cost of death-related grief to American business in lost productivity is estimated to exceed $37.6 billion. So aside from compassion for grieving employees, there is a business case to be made for addressing workplace grief head on.
American Hospice Foundation has made significant contributions toward this ideal workplace. Since launching its Grief at Work public awareness campaign in 1998, more than 3,000 employers have utilized AHF’s publications for employees and managers, including the U.S. House of Representatives, Bank of America, AT&T, and Exxon. In 1999, the Wall Street Journal was prescient in announcing that workplace grief would be one of the ten top issues to watch in the new millennium. Major companies are already recognizing this – for instance, AHF worked with a major financial company to train its counselors on ways to deal with newly bereaved clients who are confronted with significant financial decisions while reeling from the death of a relative.
Grief support will be mainstreamed in our schools. Regardless of their age, children do grieve and their performance at school can be negatively affected without appropriate support. Schools of the future will be equipped to support grieving children losing a family member or a friend or suffering the trauma of community-wide crises like hurricanes or shootings.
Toward that vision, American Hospice Foundation created a model Grief at School training curriculum that has been used by more than 3,500 schools and was endorsed by the national associations of school counselors, school psychologists and social workers. As part of their community service mission, many hospices have used this curriculum to train school staff to address the needs of grieving students and discuss grief and loss in the classroom.
Among the grieving children whose needs have not been fully addressed are those whose parents die in combat or return from war in an emotionally compromised state. Recognizing their need, American Hospice Foundation funded a new initiative by the Tragedy Assistance Program for Survivors (TAPS) to provide support for grieving children of veterans killed or wounded in service to the country.
Families of people who have experienced hospice – an estimated 1.6 million patients in 2011 –know well that it makes a significant contribution to the care of dying Americans. What is often overlooked is that hospice makes a significant contribution to the quality and efficiency of the rest of the healthcare system.
As hospice becomes more integrated into the healthcare system, it is imperative that in the future, we make every effort to conserve its principles to serve the needs of the most vulnerable among us.
The authors are the president and vice president, respectively, of the American Hospice Foundation. AHF closed its doors in June 2014 after nearly 20 years of improving access to quality hospice care through public education, professional training, and advocacy on behalf of consumers. AHF leaves a legacy of educating the public about hospice and heightening awareness of grief issues in the schools and workplace. AHF has contributed to the continuation of its important work with two legacy projects –funding Altarum Institute’s Center for Consumer Choice to develop a web-based tool that enables users to select the most appropriate hospice for their situation, and an initiative by the Tragedy Assistance Program for Survivors (TAPS) to assist grieving children of veterans.