Consumers want EOL consultations at diagnosis of life-limiting disease
April 1, 2002
Consumers want EOL consultations at diagnosis of life-limiting disease
NHPCO calls upon providers, policy-makers to meet patients’ demands
More than two decades ago, hospices were on the fringe of the health care consumer’s consciousness, a feel-good movement rooted in caring for those whom traditional health care providers could no longer help. While hospices have a long way to go before they permeate America’s death-fearing culture, there are encouraging signs that increasing numbers of consumers want to know more about hospice care.
In a survey conducted by the National Hospice and Palliative Care Organization (NHPCO) of Alexandria, VA, nearly nine out of 10 respondents endorse a consultation with end-of-life experts to inform patients with life-limiting illness of their care options. The results of the survey lend credence to hospice industry efforts to position hospices as the providers of end-of-life consultations.
The survey was done in conjunction with Harris Interactive of Rochester, NY, and the results were released in February. It was conducted to examine the Medicare Hospice Benefit 20 years after the federal government began reimbursing hospices for the care they provide to terminally ill patients. The results support an earlier study done by the National Hospice Foundation, the charitable arm of the NHPCO.
Of the 88% of respondents who support end-of-life consultations, most cited a belief that the information provided during the consultation would result in increased control over decision-making, improved quality of life, and alleviation of financial concerns.
"In 1982, Congress provided funding for the end-of-life care Americans wanted, and the benefit has worked quite well when patients knew about it," says Jonathan Keyserling, JD, vice president of public policy/communications for NHPCO. "Twenty years later, people still want the same kind of care but, unfortunately, they still don’t know hospice is available or how to pay for it."
This is borne out by the fact that many hospices battle short length of service. Rather than receiving information about hospice care from a treating physician or from inpatient facility staff, patients and families are usually directed to hospice care within days of dying. In many instances, patients are not aware that Medicare or their private insurer pays for hospice services. Without timely admission, hospices complain, the full benefit of hospice services cannot be realized.
In addition, short lengths of service result in fewer per diem payments during the most cost-intensive periods — admission and the days leading up to the time of death — which places a financial burden on hospices and often leads to a shortfall that must be made up by fundraising efforts.
All things considered, hospice industry leaders point to the millions of patients and their families whose dying days were characterized by the compassion of caregivers, spiritual growth, reduced pain, and quality time with loved ones, rather than the disappointment of failed curative efforts that often led to increased pain and less quality time with family and friends. In 20 years, the hospice model has worked for those who have been lucky enough, but most people are unaware that hospice is an option when faced with the prospect of battling a potentially fatal disease.
"We have been encouraged by the increase in the number of hospices and the number of people served, but many others can be served," says Keyserling.
Striving for name recognition
Ultimately, hospices want the same level of brand recognition that other specialties in health care enjoy, says John Millett, director of media relations and publications for the NHPCO. Hospices want to be associated with end-of-life care in the same way that oncology is associated with cancer treatment.
The message of the survey, hospice proponents say, is that payers and providers of health care services should provide end-of-life care information not only because it is necessary for sound decision-making, but because consumers are clamoring for it. The survey shows exactly that.
For instance, nearly nine out of 10 respondents (88%) told researchers that patients with a life-limiting diagnosis would benefit from a consultation with end-of-life specialists to complement the care of their own physician. Of those, 30% say the consultation would give patients more control over end-of-life decisions, 21% say it would improve a patient’s quality of life, and another 20% say knowledge of the Medicare Hospice Benefit would allay patient worries about the financial impact of terminal illness. On the other hand, only 6% of those surveyed did not think such a consultation would be beneficial.
Financial considerations weigh heavily
But of those who had negative opinions regarding end-of-life consultation, it seems that financial considerations most influenced their answer. Specifically, 36% of those who doubted the value of end-of-life consultation said they believed it would increase health care costs. Another 23% said a terminally ill patient wants to have absolute trust in his or her physician. Eighty-one percent of Americans who favor such a consultation believe it should occur when patients are given a life-limiting prognosis.
Other findings include:
- Eighty-six percent say people with a terminal illness would most like to receive end-of-life care at home.
- When asked whether hospices, physicians, or hospitals are most knowledgeable about end-of-life care, 63% favored hospice, 17% said physicians, and 11% said hospitals.
- Gender differences are quite pronounced in this area, with significantly more females (74%) than males (51%) attributing end-of-life expertise to hospices.
- A slight majority of respondents say physicians are truthful about life-limiting conditions, and nearly half say physicians provide adequate information on end-of-life options.
- Overall, 62% of Americans believe that the health care system, including physicians, is truthful with patients about their life-limiting conditions, yet this confidence seems to wane as people age. For example, 49% of people 55 to 64 believe providers are forthcoming, compared to 67% of those ages 18-24.
- When asked if the health system, including physicians, adequately explains end-of-life options, nearly half of the general population (49%) said yes, but only 39% of those 55 to 64 answered affirmatively.
NHPCO officials claim that the survey findings point the way toward improving access to quality end-of-life care, including more timely hospice admissions. There is a belief among hospice industry leaders that given the opportunity to choose between hospice care and a continuation of curative efforts in the face of the inevitable, more patients will choose hospice care to ensure quality of life through the time of death.
Hospice leaders are hoping the message gleaned from the survey — that consumers want end-of-life care consultations — will encourage health care providers to begin engaging their patients in end-of-life discussions. Keyserling says educating other providers and payers is a job for everyone in the industry. That includes the NHPCO lobbying lawmakers and health care trade associations, state hospice organizations focusing on other state health care trade associations, and local hospices educating hospitals, nursing homes, assisted living facilities, and physicians about the need for end-of-life consultations.
Consumer education plays an important role, as well. Some in the industry believe that consumers will determine whether health care providers ultimately buy into the hospice movement. Like women in the 1980’s who in their demand for better maternity care sparked a revolution in labor and delivery care, hospice leaders say they believe that consumers will ultimately force physicians and other providers to change.
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