Hospice eNews

What the Media Said about End-of-Life Care This Week

Week of April 11, 2005

…a service of Florida Hospices and Palliative Care

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SENATE EXAMINES ITS ROLE IN EOL ISSUES

 

            For the first time ever, the Senate Health, Education, Labor and Pensions Committee discussed end-of-life issues last week.  Rather than focusing on legislative possibilities, committee leaders “sought to highlight the policies and issues that people confront in deciding whether they or their relatives should be kept alive by artificial means when death nears,” The Chicago Tribune reported. 

 

            Committee witnesses, all experts in some medical or social aspect of end-of-life issues, emphasized the lack of planning on the part of Americans that result in situations like Terri Schiavo’s.  J. Donald Schumacher, president and CEO of NHPCO, testified and said, “Most families spend more time planning for their annual summer vacation than they do for a health-care emergency.”  Some committee members asked how Congress could deal with the lack of preparation, and witnesses “cautioned against legislating anything too quickly and urged them to take the time to educate themselves thoroughly about end-of-life issues and the medical consequences of various actions.”  Schumacher encouraged Congress to pass a bill introduced by Senator Bill Nelson (D-Florida) that would allow Medicare payment for a patient visit to discuss end-of-life issues with a physician.

 

            One witness, H. Rutherford Turnbull, co-director of the Beach Center on Disability at the University of Kansas, said, “I hope Congress proceeds cautiously and deliberately.  This is not a time to rush into judgment.  It is the time for more hearings such as this, an extreme amount of staff work affecting all members of the disability and aging community and the time to think about the proper relationship between the federal government and the state governments.”

 

            Lawmakers traded jabs at each other over the Senate’s passage of a bill allowing Schiavo’s parents to plead their case in federal court.  Senator Edward M. Kennedy (D-Massachusetts) called the bill’s passage an abuse of power on the part of Republican senators.  Senator Richard Burr (R-North Carolina) countered, saying Congress’s action on the bill was “a great day for the House and Senate.”

 

            Representing the American Academy of Neurology, Dr. James L. Bernat told the committee that technology such as positron emission tomography (PET) scans play an important research role but are not “ready for prime time.”  Some Schiavo supporters advocated use of a PET scan as a way to determine whether she was in a persistent vegetative state.  (The Chicago Tribune, 4/7; The Kansas City Star, 4/7; Cox News Service, 4/6; Congressional Quarterly, 4/6)

DO DOCTORS SAY GOODBYE AT EOL?  SHOULD THEY?

 

            Those are questions asked by a recent Newsday article, which says, “The answers vary, doctor to doctor, and reflect the personality of the doctor and the chemistry that occurs at the bedside.”  But many agree that medical schools rarely teach such answers and writer Jamie Talan says, “Sensitivity to the patient, especially as the potential for healing has been exhausted, is sometimes lost in the corridors of modern medicine.”

 

            Dr. Timothy Quill, professor at the University of Rochester, says that physicians, in talking to patients about dying, “are confronted with the brutal finality of how impotent you are as a doctor.  It’s something that most doctors don’t want to think about.”  Dr. Kathleen Foley, a neurologist at Memorial Sloan-Kettering, agrees, saying, “The hard part is that doctors are delivering news that no one wants to hear.”

 

            Dr. Ronald Bash, an oncologist, has been involved with many families of patients, even after death.  He’s been to many funerals but says sometimes he found himself getting dressed but never making it to the service.  He no longer attends funerals but does call the family right after a death and always sends a condolence card.

 

            Quill says that the hospice movement has “helped show doctors how to say goodbye.”  Many doctors, he finds, stop making house or hospice calls when there isn’t a medical need any more.  “But often there’s a social need to be filled.  A lot of doctors are not comfortable with sadness.”

 

            Dr. Kanti Rai, of Long Island Jewish Medical Center, says he tempers bad news “by taking into account who is on the other side of me.  Brutal honesty is something I don’t practice.”  But once he’s talked with patients about a bad prognosis, Rai says he “maintains a fighting attitude.  That is just as important for patients to see.”  He also goes to as many funerals as possible, saying that he would like to think there’s something to be learned from each death.

 

            Dr. Daniel Blazer was an intern when first faced with the death of a patient.  One of his patients was dying of cancer, and Blazer grew steadily more uncomfortable entering his room.  One day he stuck his head in, and the patient said, “Come in.  You really are afraid of being around someone who is dying.”  The patient asked Blazer to spend a few minutes with him each day until he died, and Blazer honored the patient’s request.  “What I remember,” Blazer says, “is that I didn’t have to say anything.  We both knew what was happening.  He was just happy that I was there.”

 

            The article also contains a link to the Cancer Facts End-of-Life Care FAQ at NIH.  That website has a number of helpful hints, including ways that caregivers can provide emotional support to patients.  See cis.nci.nih.gov/fact/8_15.htm.  (Newsday, 4/5)

 

 

THE SCIENTIST ISSUES SPECIAL PAIN SUPPLEMENT

 

            The Scientist, a magazine targeted to researchers in the life sciences, has issued a special supplement on pain and the advances in biomedical research into pain.  The supplement, which can be found at www.the-scientist.com/supplement/2005-03-28, was made possible by contributions from Johnson & Johnson Pharmaceutical Research & Development.

 

            The issue contains many articles and links.  Among them are:

            *  “A Word From Our Sponsor,” which has a PDF titled “Developing Novel Treatments for the Complex Problem of Pain.’”

            *  “Dealing With Pain” examines how far we have come with pain control and relief during this decade, which was designated by Congress as the Decade of Pain Control and Relief.  The article says that the report would be quite positive if this were the decade of pain research and, that though the gap between the research and implementation of new drugs is narrowing, many are still in chronic pain.

            *  “Gateways to Pathological Pain” is a scholarly article on signal transduction and the immune system.

            *  “From Nerves to Immunity” looks at an important discovery from a chemotherapy side effect.  Children with neuroblastoma received an experimental antibody treatment, which got rid of their tumors but left them in intense neuropathic pain.  Investigation found that it was not due to nerve damage but to the presence of tumor necrosis factor.

            *  “Pain Hypersensitivity and Morphine Tolerance” examines shared mechanisms between the two.  Chronic morphine treatment activates spinal microglia and increases proinflammatory cytokines.  Cytokine inhibitors can restore the effectiveness of morphine.

            *  A section called “The Essence of Pain” gives a timeline of analgesia and anesthesia, tells the story of a child with a congenital insensitivity to pain and discusses the limitations of animal models of pain;

            *  “The Interpreter” is an article on brain imaging as it relates to the experience of pain.  Using PET scans, researchers find brain areas correlating to the experience of acute pain, but chronic pain has been more of a challenge. 

            *  “The Quest for Pain Relief” examines the history of pain medications.  The “gallery” of pain medication labels is from a history of pain collection.  Other articles in the section are on research on pain medication from sea snails, the role of nicotine, marijuana and tricyclic antidepressants in treating pain and on gabapentin.

            *  Other articles examine opiates, the future of Cox-2 studies, research on Cox-3 and research into the perception of pain.  (The Scientist, 3/28)

 

 

EOL & PAS NOTES

 

            *  Delegates to the Virginia House say that end-of-life issues will be on the agenda for next year’s session.  Delegate Robert G. Marshall (R) says, “At a minimum, we need to say that you can’t just starve someone to death if there is no written declaration by the person in question.”  (AP, 4/2)

 

            *  And A Time to Die:  How American Hospitals Shape the End of Life, by Sharon R. Kaufman, and Physician Assisted Dying:  The Case for Palliative Care and Patient Choice, by Timothy E. Quill and Margaret P. Battin, are both reviewed in NEJM.  Reviewer Dr. James L. Bernat, of Dartmouth-Hitchcock Medical Center, says that both books make important contributions to answering questions about whether physician-assisted suicide should be legalized, how physicians should integrate “vague” advance directives into clinical care and how “market forces or acculturated behavior determine medical practices at the end of life.” (NEJM, 2005;352:1500-1501)

 

            *  Charles Tiefer, of the University of Baltimore School of Law and the author of Veering Right, says that the Schiavo bill passed by Congress resembles “primitive legislative acts, such as when Parliament in the 19th century would pass bills of divorce for individuals.”  Tiefer sees the Schiavo law “as throwing the door open to” legislative action that leads to “deciding individual cases for political reasons.  I don’t see it as limited to what are called end-of-life cases.”  (National Law Journal, 3/28)

 

            *  “The Chicken and the Egg:  The Pursuit of Choice for a Human Hastened-Death as a Catalyst for Improved End of Life Care,” by Kathryn L. Tucker, originally published last year by the New York University Annual Survey of American Law, is available from the website of Death With Dignity.  The lead-in to the article on the website says, “The Oregon experience provides a strong basis to argue that when Death with Dignity is an available option, physicians redouble their efforts to become educated about current pain management practices.”  A link to the PDF is available at www.deathwithdignity.org/fss/news/nyu_tucker.asp.  (Death With Dignity National Center Website)

 

            *  Anne C. Klein, Rice University professor and the founding director of Dawn Mountain, a Buddhist study center in Houston, writes of the role of religious faith at the end-of-life.  Klein says that we do not know whether persons should “remain indefinitely at the mercy of a feeding tube” or whether “it is without question better to take that tube away.”  Given that lack of knowledge, Klein says, “To legislate aggressively on these delicate matters, and especially to do so in the name of religion, is quite counter to the mood of awe that comes about when we pray at the death of loved ones.  And we all pray precisely because we don’t have all the answers.  We pray we have done right when we have done our unknowing best.”  (The Houston Chronicle, 4/5)

 

            *  Robert A. Burt, JD, of Yale University Law School, reviewed Jocelyn Downie’s Dying Justice:  A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada in the latest issue of NEJM.  Burt calls the “distinctive aspect” of Downie’s ethical argument “the rigor of her reliance on the idea of individual autonomy,” in which she argues that mentally competent people should not need to be suffering terminal illnesses to choose suicide.  (NEJM, 2005;352:1501-1502) 

 

            *  Mordechai Halperin, a medical ethicist, speaking in an interview in The Jerusalem Report, says that three conditions are required before Jewish law allows care to be withheld from a patient:  1) the patient must be terminally ill; 2) the patient must be suffering terribly; and 3) the patient has said, or it can be assumed, that life should not be extended.  Halperin also says that Jewish law does not allow, under any circumstances, withdrawal of oxygen, hydration or nutrition.  (The Jerusalem Report, 4/18)

 

 

PAIN & MEDICAL MARIJUANA NOTES

 

            *  A bill before the Alabama House of Representatives would allow the medical use of marijuana for certain conditions.  The bill’s sponsor, Laura Hall (D), said of her son, who died of AIDS, “As a mother, I would have been relieved if he had had the opportunity for this particular act, for compassionate use.”  (The Birmingham News, 4/1)

 

            *  A Minnesota Senate panel recently voted to bar arrests of medical marijuana users and passed a bill allowing its use for those with debilitating illnesses.  Backers do not expect it to pass the full Senate this year, and Governor Tim Pawlenty (R) has said that he is unlikely to sign it if it does.  (Saint Paul Pioneer Press, 4/6)

 

            *  Researchers who used to think that the benefits of acupuncture were mostly due to the “placebo effect” now are not so sure.  “A growing body of evidence -- brain scans, ultrasound and other techniques -- shows that acupuncture triggers direct, measurable effects on the body…”  New research is targeting the mechanism by which acupuncture’s effects are achieved.  (Los Angeles Times, 4/4) 

 

 

OTHER NOTES

 

            *  An article from Guidestar, the national database of nonprofit organizations, reports that 46% of respondents to a survey cited finding money as the greatest challenge of their organization.  “Other,” which included items such as board-related issues and evaluation, was in second place at 21%.  Publicizing the organization’s mission and activities was rated as the third highest challenge at 17%.  (Guidestar, 4/2005)

 

            *  Progenics Pharmaceuticals, Inc., announced “positive top-line results” from the phase III clinical trials of methylnaltrexone, which treats opioid-induced constipation.  Laxation occurred within four hours much more often with MNTX than with placebo and the drug was “generally well-tolerated.”  (Lab Business Week, 4/10)

 

            *  Dr. Robert M. Arnold, co-author of a JAMA article on methods of handling conflict between physicians and families, says that “physicians often assume that conflict is a bad thing and something that should be avoided, yet conflict handled well can be productive and the clarity that results can lead to clearer decision making and greater satisfaction.”  The Law & Health Weekly article quotes Arnold, who says, “Dealing with conflict is a critical skill for physicians.  Recognizing and dealing with conflict can improve relationships and shed light on complicated clinical situations, and the rewards include a grateful family and a sense of both personal and professional satisfaction.”  (Law & Health Weekly, 4/9)