Hospice eNews

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

Week of January 23, 2006

…a service of Florida Hospices and Palliative Care

US SUPREME COURT RULES AGAINST GONZALES

In a 6-3 decision, the US Supreme Court rejected the efforts of the Bush Administration to use a federal drug law to punish physicians who, under Oregon’s Death With Dignity law, help terminally ill patients take their own lives. Former Attorney General John Ashcroft declared that the federal Controlled Substances Act gave him the power to prosecute physicians who wrote prescriptions for terminally ill persons, saying that such a use was not a “legitimate medical purpose.” The Court disagreed, with the majority opinion author Justice Anthony M. Kennedy writing that Ashcroft’s action was an effort by the Bush Administration to give “a single executive officer the power to effect a radical shift of authority from the states to the federal government.”

The Kansas City Star said that the ruling “clears a legal morass surrounding the long-embattled Oregon law and paves the way for other states to consider assisted-suicide measures that involve physicians.” Other observers expect that groups opposed to physician-assisted suicide will pressure Congress to pass one or more laws that permit the Justice Department to prosecute persons involved in assisted suicide.

A number of states have some form of end-of-life legislation in the works. California and Vermont are the only two with specific physician-assisted suicide bills, while four others are considering proposing such bills. Connecticut, Maine, Michigan, Washington and Hawaii have specifically rejected assisted suicide bills.

Many physicians and healthcare experts commented on the relatively few people who express an interest in suicide in the face of terminal illness. Most see the problem as one of good end-of-life care, particularly pain control. Dr. Ezekial Emanuel, NIH chairman of the department of clinical bioethics, says, “The central issue, we all realize, is end-of-life care. Assisted suicide is really a sideshow.”

Some organizations that oppose Oregon’s law predict problems for the elderly. Diane Coleman, president of Not Dead Yet, says, “Assisted suicide will discriminate against the old, the ill and the disabled.” She predicts that patients who are vulnerable and whose treatment is expensive will not be seen as having lives worth living and will get medications to help them die.

Others see a far less adverse effect of the ruling. Dr. Timothy Quill, palliative care expert, said, “The biggest impact will be on doctors prescribing medicine for terminally ill patients.” John Lantos, associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago, agrees. If the Supreme Court had supported the Justice Department, “It would have put the fear of the FDA into every doctor trying to provide hospice and palliative care in America today. … Doctors are already afraid to prescribe narcotics appropriately.” Additionally, pain specialists and their advocates hope that the ruling will help in the defense of physicians accused of illegally prescribing narcotics.

At least one columnist who opposes Oregon’s assisted suicide law applauded the Court’s decision. E. J. Dionne, Jr. wrote, “I believe that legalizing physician-assisted suicide is a mistake. I also believe that having federal courts and bureaucrats decide the issue is a mistake. This is a question that should be debated by the people and their representatives. … As it happens, assisted suicide is one issue on which my beliefs coincide with those of many conservatives. But I want my view to prevail through persuasion in the democratic process, not because an attorney general and sympathetic judges impose it on every state in the union.” (The Kansas City Star, 1/18; The Baltimore Sun, 1/18; The Chicago Tribune, 1/18; AP, 1/18; The Boston Globe, 1/18; The Seattle Times, 1/18; The Houston Chronicle, 1/20; The Washington Post, 1/22)

HOPE FOR THE ORIGINAL INTENT OF ADVANCE DIRECTIVES

“Hope for the Future: Achieving the Original Intent of Advance Directives,” from a recent issue of The Hastings Report, examines the limitations of traditional advance directives, suggests some models that are more effective and makes recommendations for establishing them as accepted practice. The article is authored by Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss and Susan W. Tolle.

The initial goal of advance directives – allowing patients control over their care by specifying treatment choices and naming surrogate decision-makers when they could no long make their own decisions – was “laudable and worth preserving,” the authors say, even though they have not been as effective as was initially hoped. Not only do less than 30% of Americans have them, but there are many other reasons why they haven’t worked well:

* With the focus on the legal right to refuse treatment, many patients who complete them get no assistance “in understanding or discussing their underlying goals and values.”

* Instructions in advance directives tend to be too vague to be of use, or too medically specific to apply in common situations.

* Vague instructions and conversations yield “vague expressions of wishes” which cannot be easily determined at a time of crisis.

* Once completed, advance directives are rarely reviewed even though the patient’s health status changes, usually when health is in decline.

* Advance directives are viewed as a patient’s right and thus are not incorporated into clinical care planning.

* Traditionally, advance directives assume that patient autonomy is the primary and desired mode of making decisions, but many non-Western cultures use a social network of family, friends and religious leaders in end-of-life decision-making.

* When surrogates are chosen, advance directives usually do not include directions about treatment preferences.

* Patients may prefer that surrogates base treatment decisions on what the surrogate thinks best, not on what they believe the patient might prefer were they able to do it themselves.

Several new models preserve the original intent of advance directives and address some of the shortcomings in the process.

* “Five Wishes” allows a patient to appoint a surrogate with information about wishes about medical, spiritual personal and emotional needs (see www.agingwithdignity.org). Its advantages lie in coverage of “how comfortable a person wants to be or how he or she wishes to be treated if unable to speak for him or herself.” “Five Wishes” is a legal advance directive in 37 states and the District of Columbia. No research studies support its efficacy in “guiding surrogates and health care professionals or in ensuring that wishes are honored.”

* “Let Me Decide” is a Canadian program with data supporting its effectiveness (see www.newgrangepress.com). Nursing home and hospital patients and families documented choices about levels of care, nutritional support and CPR. Staff received training on integrating advance directives into care planning. Analysis of the data showed that the plans had more specific instructions, patients were less likely to die in hospitals, fewer resources were expended in care and families were more satisfied than those who used a traditional advance planning approach.

* In LaCrosse, Wisconsin, “Respecting Choices” resulted in 85% of decedents in an 11-month period having advance directives and 96% of those were in the medical records of the place where the person died. Decedents were less than half as likely to die in a hospital as those without advance directives. See www.gundersenlutheran.com/eolprograms for an explanation of the program.

* Complementary to “Respecting Choices” is the POLST program, “Physician Orders for Life-Sustaining Treatment.” Designed for seriously ill and frail patients, POLST uses a medical order form that converts patient wishes into written medical orders. It transfers across care settings. At least thirteen states are using a variety of POLST and a National POLST Paradigm Task Force supports national growth of POLST.

All these newer programs share several key features, including “a facilitated process, documentation, proactive but appropriately staged timing, and the development of systems and processes that ensure planning occurs.”

* First, “successful advance directive programs are not limited to the content or rules relating to legal documents,” but develop a plan specific to a patient’s values, goals, relationships, culture and medical condition.

* Second, documentation of wishes, goals, plans, and the identity of a designated surrogate are required for advance directives to follow patients from one setting to another.

* Third, advance directive programs that work require “proactive but appropriately staged timing” and they must be revised as the patient’s health deteriorates.

* Last, the most crucial element of workable advance directive programs are the “policies, procedures, and teamwork within each part of the health care system that ensures advance care planning and implementation.”

The authors recommend that state coalitions of key end-of-life stakeholders “identify and overcome state-specific regulatory, legal, and cultural barriers to the implementation of optimal advance care planning.”

Finally, the authors conclude, systems to implement these new models “will need to be established in each state and within every health organization. These systems need to ensure that traditional and actionable advance directives are written at the appropriate time, that they are recognized and that they are honored. Given the initial success of these models, it is reasonable to believe that the original goal of advance directives – to ensure respect for patients’ treatment wishes at the end of life – can and will be more completely realized in the future.” (Improving End of Life Care: Why Has It Been So Difficult?)

Editor’s note: This is one of a series of articles from a recent The Hastings Report, “Improving End of Life Care: Why Has It Been So Difficult?” We will continue the series as space permits.

PUBLIC POLICY NOTES

* The CDC has a pandemic influenza page on its website, with links for persons and health organizations preparing for an outbreak of avian flu. HHS has a similar site focusing on what businesses, schools, and government organizations need to know and do to be prepared. The CDC site is www.cdc.gov/flu/pandemic/healthprofessional.htm, and HHS is www.pandemicflu.gov/plan/businesschecklist.html. (CDC Website; HHS Website)

* A bill before the Nebraska legislature would allow state residents to indicate on their drivers’ licenses whether or not they have an advance directive. Jonathan Krutz, director of the Nebraska Hospice and Palliative Care Association, says that putting the information on the driver’s license would create a “trigger point,” encouraging people to think about end-of-life decisions. It would also help medical personnel in emergency situations. Only one-third of Nebraskans have advance directives. (Lincoln Journal Star, 1/7)

* The New Hampshire legislature is considering legislation that would change regulations for living wills and healthcare powers of attorney and add guidelines for DNR orders. Supporters see a way for people to control end-of-life care by simplifying complex legal documents. Detractors object to both the wording and the philosophy of the law, fearing that it will be too easy for the rights of the elderly or disabled to be surrendered. (Concord Monitor, 1/13)

OTHER NOTES

* A severely beaten 11-year-old girl was breathing on her own and responding to stimuli after a Massachusetts court ruled that the state could remove her life support. The child sustained injuries to her brain stem last September and has been in a coma since then. Dr. Steve Williams, chief of rehabilitation medicine at Boston Medical Center, said that partial recovery from some brain stem injuries is sometimes possible but that patients rarely can feed themselves, communicate, or live ordinary lives. But, he added, children are more likely to recover than adults because there is more plasticity to their brains. (AP, 1/19)

* Using information from the US Census, Duke University researchers forecast “enormous inequalities” among baby boomers. While most are “generally better off than previous generations,” many will “struggle with poverty, declining health and lack of family networks as they age.” Late boomers – those born between 1956 and 1964 – “have the highest levels of poverty since the generation born before World War I.” Black baby boomers “are no better off relative to whites than their parents and grandparents.” (Duke University Press Release, 1/10)

* Researchers working on a Moroccan plant that produces resiniferatoxin (RST) have found that it poisons certain nerve cells that control one of the body’s pain-sensing systems. Pathways carrying pain sensations from heat or inflammation are affected, but not those from other painful stimuli. The chemical has produced a dramatic effect in dogs, and early next year, NIH researchers hope to test it in people with unrelieved pain from advanced cancer. (AP, 1/16)

* For the last 10 years, senior citizens in Portland, Maine, have been able to donate their automobiles in return for rides to the doctor’s office, mall or grocery store. Last year, the program provided 15,200 rides, using no taxpayer money at all. The value of the automobile is credited to the donor’s account and family and friends can add to the account by donating money or by volunteering as drivers. The story is online at www.cnn.com/2006/US/01/16/rides.seniors.ap/index.html. (CNN Website, 1/16)

Glatfelter Insurance Group is the national sponsor of Hospice News Network for 2006. Glatfelter Insurance Group provides property and liability insurance for hospices and home healthcare agencies through their Hospice and Community Care Insurance Services division. Ask your insurance agent to visit their website at www.hccis.com.