End-of-life decisionmaking takes center stage.

Within a matter of months the United States Supreme Court will be ruling on two cases reflecting on the legality of physician-assisted suicide. The reverberations from any Supreme Court decision will be felt throughout society - but perhaps with particular emphasis among AAHSA members, 48% of whom are religious-sponsored providers, and almost all of whom confront end-of-life decisions on a daily basis. For this reason, AAHSA has filed a "friend of the court" brief opposing physician-assisted suicide, and distinguishing its "intent" from the intent of decisions to, for example, withhold life-sustaining medical care. All of this has focused renewed attention on end-of-life decisionmaking in general, including relevant legal considerations.

Nursing Homes interviewed three attorneys, including an AAHSA staffer, specializing in this field to update AAHSA members on points of particular concern on this, the eve of the landmark Supreme Court ruling. While any detailed legal assessment must depend on interpretations of varying state statutes, general principles remain concerning legal "best practices" for various situations:

Surrogate decisionmaking for Alzheimer's victims

Diane Hoffmann, Assistant Professor of Law, University of Maryland School of Law: "In general, a person is assumed to be competent to make decisions unless there is clear evidence to the contrary. If individuals do not have an advance directive upon admission and the facility or the individual's family would like one executed, the facility should be satisfied that the individual has the decisionmaking capability to do so. If the facility has doubts, it should probably request an assessment by a physician. If treatment decisions must be made for that individual absent an advance directive, then family members in virtually all jurisdictions can make them, but the law generally requires certification of incapacity by at least one physician."

Jody Noon, RN, Partner, Davis Wright Tremaine, Portland, OR: "Unfortunately, an advance directive does not always exist. When the resident is no longer capable of making decisions, the key is to identify what the person would want, if they were able to tell us. That is not always easy.

"An example is a case in which a woman in her advance directive had stated that she did not want to be transferred to a hospital. Did this mean that she would refuse transfer even if she broke her hip and could be easily treated in the hospital, as opposed to extraordinary measures to treat pneumonia? It is always more helpful to have available a person who knows the resident well enough to speak with some confidence about the resident's wishes.

"Another approach to decisionmaking in such cases is to conduct a care conference involving the family, the attending physician and, in particularly difficult cases, the state ombudsman and protective services agency. The goal is to arrive at a care plan that is consistent with the resident's wishes and to which all can agree. This is no guarantee that the decision won't someday be challenged, but it shows that a reasonable effort was made to act pursuant to the resident's wishes."

Facility/Physician Responsibility

Hoffmann: "It is always legally advisable to make the facility's policies and procedures regarding particular end-of-life decisionmaking known to prospective residents and their families before admission so that they may choose their facility accordingly. Once a resident has been admitted, though, it is less clear whether a facility's policy will prevail over a resident's wishes, and the handful of cases on this go both ways. In one New Jersey case, a patient had requested that artificial feeding be withheld if she became unable to eat, but the hospital's policy required that she be fed. The court upheld the patient's right to refuse artificial feeding and refused to order that she be transferred, on grounds this would be an extreme hardship. In a Rhode Island case, a Federal district court held that since the hospital had not informed the patient's family of its policy regarding tube feeding, the hospital could not refuse to comply with the patient's wishes. Other cases have not required a facility to compromise its principles, but simply required the facility to cooperate in the transfer of the patient. Some states spell out facilities' obligations in statutes."

Noon: "In general a physician is not required to provide treatment that is not medically indicated. A case in point involved a woman for whom one daughter, serving as legal guardian, had agreed to withdrawal of a feeding tube, but found herself unable to stand up to another daughter who demanded that the tube remain. The mother continued with the feeding tube, a tracheostomy, 24-hour nursing care and several resuscitations from heart failure until, finally, she experienced kidney failure. When the non-guardian daughter demanded a kidney transplant, the physician drew the line and refused to order the life-sustaining treatment.

"Under the Patient Self-Determination Act of 1990, Medicare-certified and Medicaid-licensed facilities are required to explain state law and their own policies and procedures before admitting someone. Once a resident has been admitted, however, it can get complicated. Nursing home transfer regulations, for example, require that a provider identify a facility that will admit the resident. This may be difficult to accomplish, and these are the cases that typically end up in court. The more usual situation is that the transfer is worked out informally, among all interested parties, on the principle that there are no 'rights and wrongs' or 'heroes and villains' here, but instead strong beliefs and feelings, and the goal is to arrive at a solution with which everyone is reasonably comfortable."

Interests of staff and other residents

Hoffmann: "Though AAHSA's 'Care at the End of Life' statement issued last year quite properly notes that other residents are 'stakeholders' in how a decision for a particular resident is made - these decisions do have psychological and physical implications for them all - this was expressed as an ethical concern, without particular legal implications."

Noon: "While residents may not have legal standing in a particular decision regarding another resident, a resident may choose to file a complaint with a state ombudsman or protective services agency on grounds of perceived resident neglect or abuse.

"Staff interests, too, can be a factor when staff disagree with a decision to withhold or withdraw treatment. There was an unusually difficult case in which a woman, who had declined tube feeding in her advance directive, was unable any longer to take in food or liquids by mouth without severe, life-threatening choking episodes. The decision was between trying to feed her, and risk administering (as one staffer put it) 'the fatal bite,' or allowing the woman to risk starving to death. To resolve the conflict, staff were allowed to participate in development of a plan of care that was consistent with the resident's advance directive and called upon staff who were willing to participate to feed the resident in the safest possible manner. Staff who chose not to be involved were allowed to withdraw from the case under a conscience clause. The woman passed away three days later."

Assisted Suicide 

Hoffmann: "It is anticipated that the Supreme Court decision will come down to whether or not states can criminalize this process. Whether or not such criminal statutes are found to be constitutional, though, states will still have the option to legalize assisted suicide, therefore the real question becomes regulatory - under what circumstances will this be permitted? Who may perform this? Will there be a 'conscience clause'? Providers should be giving all of this careful thought."

Noon: "If the ruling allows states the option to create assisted suicide statutes, I suspect the same guiding principles will apply in these cases as apply to other end-of-life decisions. However, it is very important that facilities become directly involved in development of these laws. It became clear during the debate over the Oregon statute (which is on-hold pending the Supreme Court decision), that health care institutions' interests were not directly considered in the decisionmaking loop; it was between a patient and a physician, and the institutional options - whether or not the institution approved of assisted suicide - were unclear."

Diane De La Mare, Public Policy Attorney, AAHSA: "Our organization plans to approach this issue in three ways: 1) to participate with as many other organizations as possible that are studying this issue, such as the Robert Wood Johnson Foundation's 'Last Acts' project; 2) to develop educational resources for members working to develop conscience clauses for state statutes, should this become necessary; and 3) to begin discussions with individual members on potential day-to-day operational problems. In short, we and our members have our work cut out for us."