Ethics Question:
An 82 year old female enters a long term care facility. Upon intake the Primary (Attending) Physician asssessed her competence. The resident signs a Health Care Proxy naming the son as proxy, prohibiting any type of tubing for nutrition. Six months later, the resident becomes incapable of making decisions, has significant weight loss and the nurse manager recommends insertion of a feeding tube. The son wants to invoke the proxy and have the tube inserted, however, the surgeon in the hospital sees the health care proxy and refuses to do the procedure. The family argues they were never informed of the Health Care Proxy and, had they been informed, they would have said their mother had no capacity to execute a Health Care Proxy. A psychiatric evaluation had been conducted on the resident before she signed the Health Care Proxy--the resident, at that time, was determined not to have the capacity to make health care decisions. The family says they believe the Health Care Proxy should be invalidated and the Peg should be inserted. The ethics committee meets with the family and indicates that without the Health Care Proxy, the family will have no rights regarding Mother should her condition deteriorate.
Questions: Does the facility have an ethical and moral obligation to fulfill the HCP? Is the best interest of the resident served by having a Peg inserted so she may rally? Are there any court cases which would support a temporary insertion of a Peg which would provide the resident time to rally and not violate the HCP? As we live in a society of customer satisfaction, should the facility satisfy the wishes of the son and insert the tube?
We will begin the discussion with a response from Dr. Ellen Olson:
In general, the facility has an ethical and moral obligation to fulfill the HCP, if it feels the HCP is valid. The HCP should be evaluated independent of the fact that decision-making would be easier for the family down the road if there was a valid HCP on record. The validity of the HCP document itself must be explored, and done so on two levels. The first issue is whether the appointment of the resident's son as health care agent was valid. The second issue is whether the resident was indeed capable of specifying her wishes regarding tube feeding. There appears to be some disagreement as to whether the family is challenging the instructions regarding tube feeding, or the appointment of the son as health care agent, or both? Does the family or any one else involved in this resident's care have prior knowledge of her wishes? Did the Primary Physician facilitate the Health Care Proxy to help guarantee what he knew her wishes to be regarding tube feeding, or were those statements inserted at his or someone else's suggestion? Who were the witnesses to the conversation leading up to the signing of the HCP? Could they render an opinion about the resident's capacity for expressing preferences regarding health care agents and tube feedings? Why was the psychiatrist called to evaluate her decision-making capacity in the first place? Was her condition different at that time then when HCP was signed? Did he, or she address the resident's capacity to appoint a health care agent, specifically? All patients and nursing home residents are presumed capable of making health care decisions, including appointing a proxy, unless a court or two physicians determine otherwise, under the Health Care Proxy Law. The family can influence the decision, but they cannot nake that determination.
If the HCP is deemed valid, the facility has the obligation to abide by the health care agent's decision, unless the facility believes the agent is making decisions contrary to the resident's wishes, or not acting in the resident's best interest. In this case, if the instructions included in the HCP are also deemed valid, the son seems to be acting contrary to his mother's wishes. This is where the response of individual facilities might diverge, and where legal counsel would most likely be sought. Some facilities may be advised by their legal counsel to go to court, if they feel the health care agent is not representing the resident's wishes or best interests. This is what is recommended in the Health Care Proxy legislation. Others might be advised to act on what they know to be the patient's wishes, and let the proxy go to court, if he or she objects. Others may be advised to abide by the proxy decision, because going to court, or forcing the proxy to go to court, is expensive, risky, and time consuming. Tube feeding issues are usually very emotional ones, as well. Some facilities might have difficulty forcing a family to accept a decision not to provide tube feeding to a family member, when the family clearly disagrees. If it is determined that only the tube feeding instructions in the HCP are not valid, and nothing else is known about the resident's views on tube feedings, then the facility has less reason to challenge her son's request.
If the facility determines that the apponintment of the son as health care agent is invalid, the challenge remains to judge whether the statements made in the document still reflect the wishes of the resident. There are conceivably some nursing home residents who can express an opinion regarding a feeding tube, but not be able to appoint a health care agent. The primary obligation of the facility is to respect the resident's wishes for care. It is not to satisfy the family. If it appears the family is acting contrary to the resident's wishes, every effort should be made through education and counseling to make the family understand this goal. In general, time-limited trials are acceptable if they are needed to better determine long-term prognosis, or as in this one, to possibly give the family the time they need to work through the reality that their mother would not want to be maintained with tube feedings. Any time-limited trial should present the least possible burden to the patient, however. Feeding trials can often be accomplished with small-bore naso-gastric (NG) tubes with little discomfort to the patient. This avoids an invasive procedure such as a PEG. If it was ambiguous or not known under what circumstances the resident would not want tube feeding, a time-limited trial is ethically acceptable. If this resident had clearly stated she did not want tube feedings under any circumstances, even if her condition was potentially reversible, it would never be ethically acceptable to insert a PEG or a NG tube. That does not mean that a facility might not feel pressured to do so, however, if the family continues to insist. In that instance, the situation should be referred to legal counsel. Tube feeding is only in a resident's best interest if it is consistent with known wishes for care or the resident's values, or can be accomplished with few to no side effects, when wishes and values are not known. Current medical practice in the United States, and especially New York, provides tube feeding for patients who may have never wanted them but were given no choice, and for whom the burdens may be greater than any perceived benefit. Much more discussion is needed on this topic.
Please share your thougts on this case and Dr. Olson's comments with us-- they will be published in the next newsletter, along with a new case.
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