Hospice eNews

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

Week of October 10, 2005

…a service of Florida Hospices and Palliative Care

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US SUPREME COURT CONSIDERING GONZALES VS OREGON

Last week, the US Supreme Court heard arguments in the case of Gonzales vs. Oregon, in which the federal government challenged the right of Oregon physicians to prescribe controlled substances to terminally ill patients who choose physician-assisted suicide. Oregon’s voters have twice upheld the Death With Dignity Act, which makes physician-assisted suicide legal in the state. But, in 2001, then-US Attorney General John Ashcroft issued a directive saying that physicians who wrote lethal prescriptions would be prosecuted for violating the US Controlled Substances Act. Lower courts have supported Oregon’s case.

The New York Times clearly delineates the argument that though there are two “hot-button” issues in the case – the right of the terminally ill to choose to end their lives and how power is allocated between the federal government and the states – the appellate court “was right to resolve it more simply, through a careful interpretation of the Controlled Substances Act.” Oregon’s Statesman Journal quotes Willamette University law professor Valerie Vollmar as saying, “It sounds as though the court was asking questions as though it was viewing this case as a very narrow question. Specifically, the question of did Congress intend to delegate the authority to the (US) attorney general to say what constitutes a legitimate medical purpose. And by doing that, to say that physician-assisted suicide was not an appropriate medical purpose and that physicians could not use controlled substances for that purpose. (The court) did not seem to be looking at the question (of physician-assisted suicide) very broadly,” or whether it was desirable, or at the constitutional issues, or if Congress can prohibit a state from having an assisted suicide law.

Nationwide, commentators from the media, government, disability, legal and healthcare fields weighed in on the issue. Many newspaper editorials registered disapproval of Ashcroft’s original challenge to the law, as well as to the recent hearing before the Supreme Court. In the Palm Beach Post “Opinion” section, the editor writes that “then-Attorney General John Ashcroft should not have challenged the law in 2001, thus infringing on a state’s right, and the federal government should not be butting in today.” The editorial says that government intervention such as Ashcroft’s edict to the DEA threatening physicians with loss of license also “threatens to stifle the much-needed discussion – in homes, hospitals and hospices – about how best to care for those who are dying and how best to minimize their pain. Physicians must feel free to practice medicine as they have been trained to do, without fear of unwarranted prosecution. Patients, particularly in their last days, must be able to maintain the dignity that often accompanies a feeling of control.”

According to The New York Times, Mr. Ashcroft claimed that the law gave him the power to overrule Oregon’s assisted suicide policy. But when Congress passed the act, it clearly intended to prohibit ordinary drug abuse, not to set out a federal policy on assisted suicide. … “Mr. Ashcroft had no authority to interfere with the decision of Oregon’s voters.”

The St. Petersburg Times says, “This fight was joined because former Attorney General John Ashcroft vehemently opposed assisted suicide. … There are a number of grounds upon which the court could uphold Oregon’s scheme, not the least of which is that the states have traditionally been given power to regulate the practice of medicine. But what the court should not do is give the Bush administration the ability to scuttle the will of the people of Oregon by exaggerating the reach of the Controlled Substances Act.” An article in The Chicago Sun-Times says, “If only to be consistent with its advocacy of states’ rights, the Bush administration should never have taken up this fight.”

Those supporting the government’s case include Dr. Kenneth R. Stevens, Jr., vice president of Physicians for Compassionate Care, which opposes physician-assisted suicide. Writing in USA Today, Stevens says that nothing in Ashcroft’s original directive “prevents physicians from assisting suicides. The directive applies only to the use of federally controlled drugs. It has no effect on how states regulate the practice of medicine. … In Oregon, it is barbiturates and not pain medications that are being prescribed for the purpose of assisted suicide.”

Other supporters of the government’s case include Focus on the Family, a conservative Christian group, which says that the case is about the “sacred value” of life “made in the image of God.” Not Dead Yet, a disability rights group, says that “Oregon’s Death With Dignity Act encourages rather than discourages certain people to die solely because of their disability.” The Thomas More Society’s statement says, “Adoption of the majority’s reasoning (upholding the law) would inevitably result in the Balkanization of medical practice, in which each state would be free to decide for itself whether controlled substances could be used for a given purpose, no matter how unethical, unorthodox, untested or unusual.”

Supreme Court watchers and others closely following the case have noted that the justices seemed evenly divided on the case. New chief justice John G. Roberts, Jr. “did not tip his hand as to how he would vote,” the Los Angeles Times said. The New York Times writes that Justice Antonin Scalia felt that Congress’ silence on assisted suicide “left room for administrative regulation” when he said, “I would have thought that a doctor using drugs to kill a patient was unthinkable.” Justice Sandra Day O’Connor wanted to know why, given Solicitor General Paul D. Clement’s defense of Ashcroft’s actions, the government does not “punish doctors who use lethal drugs to carry out death sentences.”

Whatever the decision of the Supreme Court, the issue, since its inception, has put a “spotlight on end-of-life care,” Dr. Susan Tolle said. Tolle, who is director of the Center for Ethics in Health Care at Oregon Health & Science University, says, “We have a more knowledgeable public about end-of-life care and higher expectations.” Oregon’s Statesman Journal says that since the passage of the Death With Dignity Act, “Oregon has become a leader in many of the areas that define good end-of-life care: home hospice, advanced directives, a low rate of hospital deaths and more palliative care teams in the medical field than other states.”

Noting that Oregon’s rate of home hospice care is the highest in the country and that more than 75% of residents have advance care plans for end-of-life, Tolle says, “That is remarkable. (Home hospice) is what most people want. So it shows that advanced planning is completed and the plan actually works, which results in low rates of death in the hospital. The plans are made, the plans work and people are supported in the home.”

Still, Tolle says, it wasn’t only the vote on assisted-suicide that raised awareness of end-of-life issues. “There were two $5 million media campaigns – public education campaigns. That empowerment was part of the process, not the outcome.” Ex-governor Barbara Roberts says, “No state does it better than we do. … Those campaigns changed not only the law but also our awareness and attitudes, I think in a positive way.” (The New York Times, 10/5,6; Palm Beach Post, 10/5; St. Petersburg Times, 10/7; Los Angeles Times, 10/6; Statesman Journal, 10/4,6,9; USA Today, 10/5; Chicago Sun-Times, 10/5)

CHILDREN CAN MAKE COMPLEX END-OF-LIFE DECISIONS

Researchers at St. Jude’s Children’s Research Hospital and Sydney (Australia) Children’s Hospital have reported that “pediatric cancer patients as young as 10 years old who are aware that their disease is incurable have the ability to participate meaningfully in discussions of their own end-of-life with family members and the health care team.” The children “identified their deaths as an outcome of their decisions to end or limit treatment, understood that they were participating in decisions about the end of their own lives, and recognized the consequences of their decisions,” the report said.

The study involved 20 patients, 10 to 20 years old, who participated in one of three decisions: 1) participation in a Phase I study of a drug that would have no benefit to them in the terminal stage of their illness; 2) creation of a DNR order, or 3) initiation of aggressive treatment of disease symptoms rather than the disease itself. One “striking” finding was that the most frequently reported factor affecting decision-making was the “consideration of others’ preferences,” indicating that “human relationships strongly influence end-of-life decisions in pediatric oncology.”

More than half the patients said that a part of their decision-making process “included the wish to benefit others, even though they themselves would not benefit.” Investigators at St. Jude say that such behavior is not consistent with existing child development theories, which hold that “children expect personal benefit when they help someone else.” A report on this study, which was done as part of the Palliative and End-of-Life Care Program at St. Jude, appears in the September 19 online issue of the Journal of Clinical Oncology. (PR Newswire, 10/5)

PUBLIC POLICY AND ORGANIZATIONAL NOTES

* The NHPCO Board of Directors reviewed the organization’s statement regarding physician-assisted suicide, adopted in 1996, and found it to be appropriate. A new explanatory statement, which “helps provide the necessary context for a discussion that is extremely complex and challenging for all those concerned,” will accompany the older statement on distribution. Members may see www.nhpco.org for the narrative and statement. (NHPCO NewsBriefs, 10/6)

* The NHPCO Board of Directors recently approved a position statement regarding artificial nutrition and hydration (ANH) that was written by the NHPCO Ethics Committee. The statement says that withholding or withdrawing ANH should be treated in the same was as other medical decisions, “by evaluating the risks and potential benefits of available alternatives in light of the patient’s preferences.” The narrative and statement are available to members only at www.nhpco.org. (NHPCO NewsBriefs, 10/6)

* A new law in California will allow hospices in smaller counties to operate facilities with a maximum of twelve beds instead of the previous limit of six. Supporters of the law expect it to resolve the problem of hospice patients being admitted to facilities far from home because their local hospices are filled to capacity. (Oroville Mercury Register, 10/6)

* “Are penal decisions absolute, or should dying inmates be allowed out early?” The Wall Street Journal asks that question as it explores the aging of the nation’s prison population, noting that inmate healthcare costs rose 42% last year, to $3.7 billion. The state of Washington will release some seriously ill prisoners even if they are not terminally ill, “if so doing will save the state a significant amount of money and it is safe to do so.” In other states, prisoner review boards make the decisions. (The Wall Street Journal, 9/29)

END-OF-LIFE NOTES

* In The Year of Magical Thinking, Joan Didion writes of her grief after her husband, John Gregory Dunne, died of a heart attack at their dinner table. “Life changes fast,” Didion wrote. “Life changes in the instant. You sit down to dinner and life as you know it ends.” “I could not count the times during the average day when something would come up that I needed to tell him,” she said. “This impulse did not end with his death. What ended was the possibility of response.” (The New York Times, 10/4)

* Refusing treatment in the face of a terminal diagnosis is “not commonly perceived as a treatment option, but experts argue it’s a valid alternative that should be discussed more openly.” Speaking of death, James Cleary, medical director of the University of Wisconsin Comprehensive Cancer Center, says, “I actually use the ‘d’ word with my patients, but many physicians are afraid, they don’t want to talk about death and dying. But it’s ethically imperative to tell people the truth, because if you don’t tell them the truth, then how can they make an informed decision about what they want to do?” (The Bradenton Herald, 10/1)

* Ending Life: Ethics and the Way We Die, by Margaret Pabst Battin, and The American Book of Dying: Lessons in Healing Spiritual Pain, by Richard F. Groves and Henriette Anne Klauser, both explore whether there “are really choices to be made about our deaths that will allow us to die well.” Battin writes as “a social commentator,” on death and dying issues, which she has done for more than 25 years. Groves and Klauser write for the individual, their families and caregivers. (Arkansas Democrat-Gazette, 10/2)

* In “Do NOT Resuscitate,” internist David Muller looks at the horrifying death of one of his patients who had carefully planned with him for a peaceful death. When neighbors called EMS after hearing the family grieving after Ms. Santos’ peaceful death, the EMS technicians banned the family from the patient’s room, barred the door and attempted to resuscitate a woman who had been dead for half an hour. The article is online at www.medscape.com/viewarticle/512477_3. (Medscape, 9/19)

OTHER NOTES

* An online editorial in Chest, at www.chestjournal.org/cgi/content/full/128/3/1101, explores the current issue’s emphasis on family assistance programs for critical care patients. At the top of the page at www.chestjournal.org/current.shtml#CANCER, in the “Quick Search” box, enter “family-centered” (without the quotes but WITH the hyphen) as a keyword, 2005 for the year, 128 for the volume, and you’ll find links to several related articles. (Chest, 2005;128:1101-1103)

* The IRS’ recent increase of eight cents in the allowable mileage rate is a mixed bag for hospices and home health agencies. Where agencies can afford to increase their rates, employees will get the benefit of the increase without compensation or withholding taxes. Others will struggle, especially rural hospices that incur the most travel. Many providers don’t even meet the old rate of 40.5 cents per mile. (Eli’s Home Care Week, 9/19)

* Analysts expect hospice to continue as one of the strongest growth sectors of the healthcare industry because of “a favorable legislative environment, increased acceptance of the Medicare hospice benefit and changing demographics.” Recent growth started in 2000, when CMS reassured the industry that patients could remain on hospice longer than six months as long as eligibility criteria were met, and initiated the first of several rate increases of 3% or more. (Daily Deal, 10/3)