There are very few critics of the Hospice organization, and rightfully so. Who could criticize such a helpful, vital organization? Indeed, if Hospice wasn't available to provide their pivotal services, then who would be there? A key reason for the value of the Hospice group is that there is a general acceptance among thoughtful people that Americans do not handle death very well. And when death hits someone in his or her family suddenly, or even when there is a long-term illness in the family, leading inevitably to death, most families are not prepared. Hospice delivers humanitarian care and nurturing to not only the terminally ill, but also to their loved ones, before and after the passing.
Meanwhile, the specific services offered through the interdisciplinary team of medical professions and trained volunteers that make up Hospice include the following: medical and personal care visits; inpatient and home respite care; interdisciplinary team services; prescriptions; medical supplies; durable medical equipment; outpatient chemotherapy or radiation; counseling and spiritual assistance for families; and bereavement services for up to one year for surviving family members (Ascribe, 2004).
Hospice Services and Successes
The coast-to-coast reach of Hospice is impressive, by any standards, when one is considering that this is largely a non-profit organization, and that death and dying is a topic and reality few people can relate to and deal with effectively. In fact, according to the National Hospice and Palliative Care Organization (NHPCO) (Ascribe, 2004), America's 3,200 hospice providers gave assistance to 885,000 dying citizens in 2002. That impressive number is up 15% from those cared for by Hospice in 2001 - when 775,000 were cared for.
One good reason for the increase in individuals served in 2002 is because of widespread knowledge among the ill that Medicare offers a Hospice Benefit - and upwards of 80% of those service by Hospice in 2002 had indeed received humanitarian funds from the Medicare Hospice Benefit program. That Medicare assistance is "considered to be one of the great humanitarian pieces of federal legislation" (Ascribe, 2004). Indeed, since Congress passed the Medicare Hospice Benefit in 1982, Ascribe reports that "more than six million Americans" have received "the highest quality of care at end-of-life."
Another likely reason that serves to explain the record number of terminally ill patients served by Hospice in 2002 is that, in a general way, families and patients are being turned off by less-than-helpful services in hospitals. According to the article in Ascribe, research conducted by Brown University found that "persons dying in institutional settings [e.g., hospitals and other health care facilities] received inadequate pain management, little emotional support, and poor communication from physicians."
Meanwhile, according to research published the Journal of the American Medical Association (Ascribe, 2004), "more than 70% of family members of patients who received hospice care at home rated care as 'excellent'." Further, the American Medical Association's published research reveals, "Bereaved family members of patients with home hospice services (in contrast to the other settings of care) reported higher satisfaction, fewer concerns with care, and fewer unmet needs."
The NHPCO group reports that although data shows that "one-third of hospice patients die within seven days" of entering hospice services, the group feels that a period of "one to two months or more" would be a great help to families in terms of saving exorbitant bills from hospitalization.
A Personal Observation of Hospice Care
In an article published by the Journal of the American Academy of Physicians Assistants (Fleming, et al., 2003), an RN named Skye O'Neil Fleming - whose husband had died of AIDS but also had received "wonderful" care from Hospice - discusses her concerns about the relative shortness of time the average family receives Hospice services. In her portion of the piece, Ms. Fleming was concerned about "the short length of care" provided, and also she was concerned about "the lack of education among health care providers" with reference to end-of-life care.
By admitting patients when their life expectancy "was just 24 to 72 hours," Ms. Fleming reports, did indeed provide "positive and significant" experiences for the families. However, she adds, "the question must be asked: How much more significant might that experience have been had the patient and family been referred to hospice months earlier?" She writes that even though the Medicare Hospice Benefit provides for up to six months of care, data from 2001 shows that 34% of those "served by hospice died with 7 days or less," and just 6% "died within 180 days."
So, armed with her experiences with Hospice during her husband's dying days, and with her own training as a PA-C, MS, Ms. Fleming conducted her own survey. She mailed her questionnaire to 100 "practitioners, both physicians and Pas, who specialized in oncology." She was disappointed to only receive 38 completed questionnaires back, but of those 38 respondents, 28 stated that they "had received formal training" for hospice services, and ten admitted that they had received no formal training.
In conclusion, Ms. Fleming offers this "essential truth: The provider must be comfortable with all aspects of death and dying, or [else] no amount of training will affect the provider's decision-making process."
Who are the People on the Hospice Team; What are their Views? A Survey of Hospice Volunteers and Staff Offers a Clearer Understanding of Hospice
The Robert Wood Johnson Foundation (RWJF) provided grant monies ($107,664) to the University of Virginia Center for Survey Research for a nationwide research project (Hannay, 2000) into the "activities, motivation, and experience of hospice volunteers." The survey was titled "Final Gifts." First, some background information will help set the stage for the data. The Final Gift survey found that some 16% of the roughly 2.5 million people who die in American annually rely on donated services (for administrative tasks, hands-on interaction.
The survey consisted of 45 questions, and it was mailed to 1,972 volunteers, and to 761 paid hospice staff; the response rate was approximately 68% - with 71% of volunteers responding and 66% of paid staff responding (Hannay, 2000). And the results of the research survey are very interesting and should be enlightening to the public at large - particularly those members of society who may at some point in the near future need hospice services. Over 80% of hospice volunteers are women, and their median age is 55, though 30% of those are 65 years of age or older.
About half of all hospice volunteers have full-time or part-time jobs, in addition to their humanitarian work with Hospice. The survey also revealed that more than 70% of all hospice volunteers have provided hands-on, "direct care" in the homes of patients, with each of those direct-care volunteers providing an average of 10 hours of service per month. And of those 70%, over half also participate in other charitable activities.
When asked if their work with Hospice is satisfying for them, the great majority, according to the Final Gifts survey, said "yes" they are satisfied, and in fact 36% responded that they are "extremely" satisfied with their involvement. Over 90% of the volunteers and professionals surveyed either simply "agree" or "agree strongly" that "volunteers are essential to the mission of hospice." And the primary value cited by those 90% is the fact that they "provide companionship, support, and respite for patients and families in times of crisis."
Among the criticisms the Final Gifts survey received about Hospice from those queried are the following: 30% of respondents said volunteers "get too emotionally involved with patients and families"; 22% reported that volunteers "exceed the boundaries of their volunteer role" and also "fail to do what they promise"; and 19% of respondents say volunteers "give inappropriate medical advice to patients and families."
One concern of those surveyed is that Hospice has difficulty…