Hospice eNews 
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What the Media Said about End-of-Life Care This Week
Week of
September 26, 2005
…a
service of
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AARP MASSACHUSETTS
In 2004, AARP Massachusetts and the Massachusetts Commission on End of Life Care joined together to survey residents about their thoughts on death and dying, their preparation and planning for death, their opinions about dealing with various aspects of dying and the need for support from others and their awareness of hospice care. Three thousand AARP members received the survey, and 48% responded.
Key findings of the survey include the following facts:
* Eighty-four percent of the responders report that they are at least somewhat uncomfortable talking about death.
* More than half have spoken with significant others about their end-of-life issues, but only 17% have talked with physicians. Ten percent have not talked with anyone.
* Nearly 90% say that “total physical dependence would be worse than death,” and 70% believe that “not being able to communicate their wishes or living with great pain is worse than death.” A fear of being a financial burden is a concern for 65%. Over 80% fear dying in pain and 75% fear dying from a lengthy illness.
* Seventy-five percent say being pain free is very important, and 43% are afraid their doctors will not believe they are in pain. Nevertheless, 75% say they will only take medication if in severe pain, and 1/3 of the respondents fear becoming addicted to pain medication.
* Very important to respondents are honest answers from doctors (89%), understanding treatment choices (87%), not being a burden to loved ones (84%), having pain managed (83%) and knowing that medication is available (81%).
* While 69% have completed a will, 60% have named a healthcare proxy and fewer than half have a living will or other instructions.
When respondents were asked to identify the support that would mean the most to them as they near the end of life, they said that they hope others will listen to them (84%), help with chores (84%), know what they want when they die (82%), know about their illness (83%), offer encouragement to them (78%), provide transportation (71%), spend time doing fun things with them (71%) and help care for their other relatives (65%). At least 70% expect children to provide each type of support and many expect spouses and partners to provide the support.
While more than 90% of the respondents know
about hospice, fewer than 40% knew that Medicare will pay for hospice care. Respondents know about hospice primarily
through knowing someone who has used hospice (68%). Of those who know about hospice, 75% say they
would want hospice care if they were dying.
(AARP
CONGRESSIONAL SUBCOMMITTEE HEARS ABOUT PAINKILLERS
On
September 13, the Government Reform Subcommittee on Regulatory Affairs convened
a field hearing in
Dr. Robert J. Meyer, Director of the Office of New Drug Evaluation II, FDA, offered a background about the suffering of millions of Americans and inadequate treatment of pain. Meyer explained the FDA drug approval process and the FDA/DEA efforts to address illegal prescription sales. The FDA, says Meyer, “recognizes the serious problem of prescription drug abuse” and “will continue to take steps to curb abuse and misuse of prescription drugs.” Meyer also said that the FDA will collaborate with partners “to prevent abuse and help ensure that these important drugs remain available to appropriate patients.”
Joseph T. Rannazzisi, Acting
Deputy Assistant Administrator, Office of Diversion Control, explained the
agency’s efforts in education, regulation and enforcement. Senator Steven A. Tolman
(D-Massachusetts) summarized the concerns related to drug diversion and
addiction in
Janet
Abraham, co-director of the Dana Farber Cancer Institute, talked about the need
for good pain management and clarified the definitions of addiction, tolerance
and physical dependence. Abraham called
for excellence in pain management for all cancer patients and said, “The
American Cancer Society supports efforts to prevent the abuse and misuse of opioid analgesics and stands ready to work with federal,
state and local officials to find avenues to address escalating abuse problems
without contributing to the already gross under-treatment of pain.”
Karen
Stanley and Pearl Moore spoke on behalf of the Oncology Nursing Society (ONS)
and addressed the under-treatment of pain as a major public health
problem. ONS recommended that the
federal government:
*
“Establish and maintain an ongoing dialogue between the DEA, the FDA and
health care professionals” in order to encourage and ensure a balanced
approach;
* “Work
with health care professionals to develop guidelines for practice” to assure
competent medical practice;
* Create
educational materials for patients and families;
* Provide
resources to provide education to medical professionals;
*
Assist projects to address system-level barriers to effective pain
management, and
* “Assure
that federal publications delineate clearly between substance abuse and
legitimate pain management.”
The
American Pharmacists Association (APhA) expressed
recognition that medications such as OxyContin are “a
valuable tool in the management of pain.”
The APhA says, “Without an appropriate
balance of law enforcement and health care, patients suffer unnecessarily.” While APhA
recognizes that some action is needed to address diversion and abuse, APhA says, “Some well-intentioned interventions can
actually create new problems.” APhA characterized the DEA’s
withdrawal of support for the pain management guidance called “Prescription
Pain Medications: Frequently Asked
Questions and Answers for Health Care Professionals and Law Enforcement
Personnel” and the “release of an interim policy statement on the dispensing of
controlled substances for the treatment of pain” as “the DEA going one step too
far.” APhA
says that education, rather than restricted distribution, is the answer to
these concerns.
An overview of the hearing and complete text of the testimonies is available at http://reform.house.gov/RA/Hearings/EventSingle.aspx?EventID=34639. (Committee on Government Reform, Subcommittee on Regulatory Affairs Hearing, 9/13)
GALLUP
The Gallup Poll Tuesday Briefing,
September 13, published an article titled “Pain Management Still Tender Issue at Hospitals.” Dr. Dennis O’Leary, president of the Joint
Commission on Accreditation of Healthcare Organizations (JCAHO), says,
“Unrelieved pain slows patient recovery, increasing the burden for patients,
their families, and the healthcare system.”
Patients were asked, on
the Gallup 2004 patient loyalty database, how they felt about pain
management. Of those surveyed, “68%
of outpatient surgery patients, 55% of outpatient test and treatment patients,
and 53% of inpatients say they are ‘very satisfied’ that their pain was managed
effectively. In each of these groups,
however, patient satisfaction with the healthcare facility is higher than their
satisfaction with pain management.
Further, “despite a strong focus on pain management in most healthcare
systems, the numbers have not improved since 2002.”
Many groups are focusing
on improved pain management, says the article and, in October 2005, the
American Nursing Association will begin offering pain management
certification. In practice, however, the
author says, “Hospitals have made great progress in
treating patients at the end of the pain scale, but these patients make up a
relatively small percentage of the overall population. Little is done to help patients suffering
from less severe pain.” (
STUDY ASSESSES ISSUES THAT IMPEDE EOL CONVERSATIONS BETWEEN PARENTS AND
ADULT CHILDREN
An article in Seniorjournal.com, “Boomers Hesitant to Discuss End-of-Life Issues with Aging Parents,” says, “Baby Boomers have more trouble discussing sensitive matters about financial planning, medical care and end-of-life issues with their senior citizen parents than do these parents now in their 70s.” Hartford Financial Services Group sponsored research as a part of its “Family Conversations” series.
The researchers surveyed older parents between the ages of 70-79 and adults between the ages of 45-65 who have at least one living parent. Key findings indicate that:
* Seventy-six percent of older parents have a high level of comfort in talking about estates, while the same is true for only 45% of the adult children.
* While only 54% of the adult children were
comfortable discussing the content of their parents’ will, 70% of the parents
felt very comfortable doing so.
* Adult children tend to underestimate
how important their parents feel about providing for their heirs and for
providing financial support for their children and grandchildren.
* Parents report that they have completed
living wills and durable powers of attorney in greater numbers than their adult
children report awareness of such documents.
* While almost all parents report that
they have discussed their estate with their children, fewer children report
that such discussions have occurred.
* “In general, adult children say that
their actual knowledge about their parents’ issues is significantly less than
their parents claim.”
* “Focus first on things you agree on.”
* “Build on shared
values.” The research shows that parents
value their children’s help in planning and say that talking about shared
values can help in these discussions.
* “Parents should
reach out first.” Since most older parents are more comfortable with these
discussions than their adult children, it is easier for them to bring it
up. If children cut the conversation
short, the article says, pick another time for the discussion, but be
persistent.
* Children should ask how
they can help parents maintain their independence. Living wills, durable powers of attorney and
health care directives are important, the article stresses and can help
children ensure that parents wishes are honored.
The article is online at
http://www.seniorjournal.com/NEWS/Boomers/5-09-19EndofLifeIssues.htm
and includes links to the Hartford Investor.
(Seniorjournal.com, 9/19)
PAIN NOTE
An article called “Progress to Achieve Balanced State Policies Relevant to Pain Management and Palliative Care, 2000-2003,” was published in a recent issue of the Journal of Pain & Palliative Care Pharmacotherapy. The article “summarizes and discusses the evaluation and grading of state pain policies and reports on positive policy changes at the state level.” Go to http://www.medsch.wisc.edu/painpolicy/publicat/05jppcp/05jppcp.pdf for a PDF version of the article. (PPSG News Alert, 9/20)
RESOURCE NOTES
* NHPCO and WebMD will provide a second free online continuing education
course beginning on 9/30/05. Perry Fine,
MD, National Medical Director for NHPCO, developed “The Last Chance for
Comfort: An Update on Pain Management at
the End of Life.” According to the NHPCO
NewsBriefs, “The course is intended for primary care and
specialty physicians, nurse practitioners, registered nurses, physician
assistants, and other healthcare professionals with an interest in pain
management and end-of-life care.” This
course “will discuss pain assessment techniques, differential features of pain
states, and effective non-pharmacological interventions to relieve pain amongst
other topics.” (NHPCO NewsBriefs, 9/22)
*
* Calling the experience of pain “an overwhelming, whole-person experience with devastating effects on the experiencing person, the family witness, and the nurse,” Betty Ferrell encourages nurses to own their responsibility to respond to pain. In “Ethical Perspectives on Pain and Suffering,” Ferrell applies the field of feminist ethics to pain management. Ferrell examines feminist ethics, the moral crisis of untreated pain, the effect of unrelieved pain and suffering and the growing recognition of pain as a significant health problem and ethical concern. Ferrell says nurses are “guided by essential concepts of respect, relationship, and compassion through an ethical perspective of feminist ethics.” The entire article is available online at http://www.medscape.com/viewarticle/512438?src=mp. A one-time free registration with Medscape is required. (Medscape, 9/12)
* “A guide to geriatric medicine,” from Newsday, examines the growing need for “medical care specializing in the needs of older patients.” The article explains the training and work of geriatricians and their roles in geriatric psychiatry, Alzheimer’s disease, emergency care, otology, ophthalmology, dentistry, urogynelcology, extended care, geriatric case management, and geriatric social work. The article is online at www.newsday.com. Search “gerontologist” to get to the article. (Newsday, 9/17)