EDN 812 Module 5 End-of-Life Treatment Disputes Policy Example

When a Family Asks for Everything: A Health System Policy for Disputes Over Potentially Inappropriate Treatment at the End of Life

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Doctor of Education Program, Aspen University

EDN 812: Legal and Ethical Issues in Health Care Administration

Instructor Name

Month Day, Year

When a Family Asks for Everything: A Health System Policy for Disputes Over Potentially Inappropriate Treatment at the End of Life

On his sixteenth day in Sable Creek Health's medical intensive care unit, a composite 79-year-old retired machinist remained on a ventilator and on dialysis after an out-of-hospital cardiac arrest. Neurologists had concluded that severe anoxic brain injury left him with no realistic chance of regaining awareness. His daughter, his appointed health care agent, asked for a tracheostomy, a feeding tube and continued dialysis so that he could be moved to a long-term acute care hospital. The critical care team believed these treatments would prolong his dying without any prospect of returning him to a life he would recognize, and several nurses described distress at continuing. Sable Creek had no policy for this kind of disagreement. This paper designs one, grounded in law, professional guidance and evidence, and organized around preventing disputes before resolving them.

The Legal Frame

Adults with capacity may refuse any treatment, and surrogates may refuse on their behalf, a principle well established in American law. Under the Patient Self-Determination Act, passed in 1990, hospitals that take Medicare and Medicaid must tell adult patients about their right to make treatment decisions and to prepare advance directives, and to record whether they have one. The law is far less settled when a surrogate demands a treatment that clinicians believe should not be given. A few states set out a statutory process; Texas, for example, allows a hospital to stop treatment after an ethics committee review and a waiting period during which the family may seek a transfer. Most states, including the composite state where Sable Creek operates, have no such statute, so a hospital must rely on a fair institutional process that a court would recognize as reasonable.

Prevention Comes First

Most end-of-life disputes grow out of missed conversations. Detering et al. (2010) randomly assigned 309 hospitalized medical patients aged 80 or more to usual care or facilitated advance care planning; among the 56 who died within six months, wishes were known and followed for 86% of the planning group and 30% of the usual-care group, and bereaved relatives in the planning group reported less stress, anxiety and depression. Wishes also need to travel as orders. In a study of 1,711 nursing facility residents, those with Physician Orders for Life-Sustaining Treatment forms were far more likely than others to have documented preferences beyond resuscitation, 98.0% compared with 16.1% (Hickman et al., 2010). Sable Creek will train facilitators in its primary care clinics and use the state's portable order form for patients with serious illness.

Supporting Families in the ICU

When a patient is already critically ill, the quality of communication with the family shapes whether disagreement hardens. In a stepped-wedge trial involving 1,420 patients at high risk of death in five ICUs, an intervention delivered by the ICU team, with a dedicated support nurse and scheduled family meetings, did not reduce surrogates' anxiety and depression at six months, but it improved their ratings of communication and of patient- and family-centered care and shortened ICU stays, mainly among patients who died (White et al., 2018). Sable Creek's policy therefore requires a structured family meeting within 72 hours of ICU admission for any patient at high risk of death, with nursing, palliative care and social work present, and a meeting at least weekly afterward.

Futile Versus Potentially Inappropriate

Words matter in these disputes. A multisociety policy statement recommended that the term futile be kept for the rare treatments that simply cannot achieve their physiologic goal, such as resuscitation that cannot restore circulation, which clinicians should not provide. Treatments that could achieve an effect the family seeks, such as keeping a patient alive, but that clinicians believe should not be given for competing ethical reasons, are better called potentially inappropriate and should be handled through a fair process of conflict resolution rather than a unilateral decision (Bosslet et al., 2015). The tracheostomy and dialysis requested for Sable Creek's patient fall into the second category: they would sustain life, so the disagreement is about values and must be handled through process.

The Dispute Process

When intensive communication has not resolved a disagreement, the policy moves through defined stages, following the elements the multisociety statement recommends: hospital review, efforts to transfer care to a willing provider and a chance for outside review (Bosslet et al., 2015).

When Time Is Short

Not every dispute allows days for review. When a patient is deteriorating quickly and the requested intervention, such as a further round of resuscitation, lies clearly outside accepted practice, the statement accepts that clinicians need not provide it, provided they seek as much procedural oversight as the situation allows (Bosslet et al., 2015). Sable Creek's policy requires the attending physician to consult a second physician and the on-call ethics consultant by phone in such cases and to document the reasoning the same day.

What the Policy Is Not

The process is not a tool for overriding a patient's own known wishes or for saving money. It applies only when the treatment team believes, after consultation, that a requested treatment should not be provided for reasons of the patient's own interests or professional integrity. Cost may not be offered as a reason in any stage. The policy also applies equally to disputes in the other direction, when a team wants to continue a treatment that a surrogate refuses, where the surrogate's decision generally prevails unless it clearly contradicts the patient's known wishes.

Culture, Trust and Religion

Requests for every possible treatment sometimes reflect religious conviction or distrust of a health system that has treated a family's community poorly in the past. The policy requires the team to ask about the family's values and beliefs early, to offer chaplains or community religious leaders of the family's choosing, and to use professional interpreters. Respecting a family's framework does not mean providing every requested intervention, but families who believe they have been listened to tend to accept a plan they did not at first want.

Moral Distress Among Staff

Nurses provide most of the hands-on care that a disputed treatment requires, and prolonged care they believe is causing suffering is a recognized source of moral distress and turnover. The policy lets any team member request an ethics consultation directly, without a physician's approval, and provides debriefings after disputed cases. Staff who object to providing a specific intervention on grounds of conscience may ask for reassignment, provided the patient's care is not interrupted.

Returning to the Case

Under the new policy, the machinist's daughter would have met with the team, palliative care and a chaplain in the first three days of his ICU stay, not after two weeks. When she still asked for a tracheostomy and feeding tube, a second physician would have reviewed the prognosis, and the ethics committee would have heard her in person. If the committee supported the team, case management would have contacted long-term acute care hospitals to find one willing to accept him, and she would have been told in writing of her right to seek outside review.

Measures

Sable Creek will track the share of high-risk ICU patients with a family meeting within 72 hours; documented goals-of-care conversations among clinic patients with serious illness; the number of disputes reaching committee review and their outcomes, including transfers; time from dispute to resolution; and staff moral distress scores on the critical care units each year. The ethics committee will review every case that reaches stage 3 for lessons about earlier communication.

Conclusion

End-of-life disputes are painful for families and clinicians alike, and in most states the law offers no clear path through them. A policy that invests first in advance care planning and early family support, uses precise language about futile and potentially inappropriate treatment, and provides a fair process with hospital review, transfer and outside review gives Sable Creek a way to respect families while protecting patients from treatment that serves no purpose they would have chosen.

References

Bosslet, G. T., Pope, T. M., Rubenfeld, G. D., Lo, B., Truog, R. D., Rushton, C. H., Curtis, J. R., Ford, D. W., Osborne, M., Misak, C., Au, D. H., Azoulay, E., Brody, B., Fahy, B. G., Hall, J. B., Kesecioglu, J., Kon, A. A., Lindell, K. O., & White, D. B. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318-1330. https://doi.org/10.1164/rccm.201505-0924ST

Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ, 340, Article c1345. https://doi.org/10.1136/bmj.c1345

Hickman, S. E., Nelson, C. A., Perrin, N. A., Moss, A. H., Hammes, B. J., & Tolle, S. W. (2010). A comparison of methods to communicate treatment preferences in nursing facilities: Traditional practices versus the Physician Orders for Life-Sustaining Treatment program. Journal of the American Geriatrics Society, 58(7), 1241-1248. https://doi.org/10.1111/j.1532-5415.2010.02955.x

White, D. B., Angus, D. C., Shields, A.-M., Buddadhumaruk, P., Pidro, C., Paner, C., Chaitin, E., Chang, C.-C. H., Pike, F., Weissfeld, L., Kahn, J. M., Darby, J. M., Kowinsky, A., Martin, S., & Arnold, R. M. (2018). A randomized trial of a family-support intervention in intensive care units. New England Journal of Medicine, 378(25), 2365-2375. https://doi.org/10.1056/NEJMoa1802637