NR 579 Week 7 Ethical Dilemma Write-Up Example

Ethical Dilemma Write-Up: A Son's Request for a Tracheostomy and Home Ventilation for a Parent With ALS Who Has Declined It, and What the Clinician Says Next

Student Name

College of Nursing, Chamberlain University

NR 579: Palliative Care in Adult-Gerontology Across the Spectrum

Instructor Name

Month Day, Year

Ethical Dilemma Write-Up: A Son's Request for a Tracheostomy and Home Ventilation for a Parent With ALS Who Has Declined It, and What the Clinician Says Next

The Request

At a clinic visit in week 7, the patient's son, Michael, said: "I want you to put in the tube in the throat when the time comes. I'm not ready to lose my dad. You can't just let my dad go."

The patient, who has amyotrophic lateral sclerosis and communicates by tablet, had declined a tracheostomy in two documented conversations and in a signed medical order.

What the Treatment Would Involve for This Patient

A tracheostomy with long-term ventilation would mean, for this patient: an operation and an intensive care stay of one to three weeks; a ventilator running 24 hours a day; suctioning of the airway every few hours, day and night; at least one trained caregiver awake and present at all times; and, in most families without paid 24-hour nursing, a move to a long-term care facility. Readmissions for pneumonia are common. Communication would continue by tablet or eye-gaze device for as long as the eye muscles work, and the disease would continue to progress in every other muscle. In this family, the spouse is 64 and the only full-time caregiver; the son works full-time; the daughter lives in another state. The patient described the alternative in a previous conversation: "My uncle spent two years on one in a nursing home. No."

Competing Accounts of the Patient's Good

The son's account: more time is good, and time with a tracheostomy is still time with a parent. That account is sincere and not unreasonable; some people with ALS choose tracheostomy and value the years it gives.

The patient's account: a good life means staying at home, at the dinner table and in the shared bedroom, and being able to talk with the grandchildren; a life in a facility on a ventilator is the outcome the patient has named as worse than death.

The spouse's account, as health care agent: the decision is the patient's, and the spouse's role is to carry it out.

The clinical team's account: the treatment would very likely work in the narrow sense of extending life, so it is not futile in the physiological sense. The question is whose goal it serves.

The Patient's Own Words, Collected

The patient's view rests on three documented statements: in week 3, the memory of an uncle kept alive through the throat for years in a care home; in week 4, the signed order and a two-word reply typed during the son's video call; and in week 5, a closing statement at the family meeting that refusing the throat tube was a decision, not surrender. These are consistent across six weeks and three settings, with different people present each time. Nothing in the record suggests the patient has wavered or that the decision was made under pressure. The patient also has capacity now, so no surrogate decision is needed at this point.

Why Not "Futile"

Calling the tracheostomy futile would end the argument without saying whose goal it fails. A policy statement from several critical care societies advises against the word futile in such cases and prefers the term "potentially inappropriate" when a treatment might achieve its immediate aim yet clinicians judge it unjustified, with a process for resolving disagreement (Bosslet et al., 2015). Here the treatment would achieve the son's goal and fail the patient's, so the decision rests on whose goal governs.

Whose Goal Governs

The patient has capacity, has refused the treatment consistently and has a named agent who will state that refusal. A patient with capacity may refuse a treatment even if it would prolong life, and surrogate decisions, when needed, should follow what the patient would have chosen (Sulmasy & Snyder, 2010). The son's request cannot override the patient's refusal. That does not make the son's grief less real, and the paper's ending is about responding to it.

What the Son May Not Have Heard

The son was not present at the goals of care conversation in week 3, where the patient gave the reasons, or at the advance care planning visit in week 4. Both were reported to the son by video. It is possible that the son's request comes partly from never having heard the patient's reasons directly. Treating the request as a lack of information alone would be a mistake, because grief and fear are part of it too. But offering the son the chance to hear the reasons from the patient is one thing the team can do.

What Is Offered Instead

Refusing the request is not the end of the conversation. The team offers the son: a meeting with the patient present, so the son can hear the reasons in the patient's words; the noninvasive ventilation plan, which will continue as long as it helps; the feeding tube, which the patient has chosen, which the neurology practice parameter supports (Miller et al., 2009a) and which keeps the patient at the table; control of breathlessness and fear at the end, with hospice at home; and a social worker and a counselor for the son himself.

If the Son Still Disagrees

The son may still disagree after hearing the reasons. That is allowed. The team will not argue the son into agreement and will not change the plan because of the disagreement. If the son raises the request again in an emergency, the agent and the signed order govern, and the clinicians on duty will be told in advance that the son may ask. The social worker will stay in contact with the son through the illness and after the death.

What the Clinician Says

To Michael, in the clinic, with the patient's agreement that this conversation happen:

"Michael, I can hear how much you want more time with your dad. That makes sense, and you're not wrong to want it. Your dad has told us, more than once and in writing, that a tube in the throat isn't wanted, because of what happened to your great-uncle. We're going to follow that. What I can promise you is that we won't stop caring for your dad. The mask stays, the feeding tube is going in, and when breathing gets harder, we'll make sure your dad isn't struggling or scared. Would you be willing to sit down with your dad this week and hear the reasons in your dad's own words? I'll be there if you want me."

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

Miller, R. G., Jackson, C. E., Kasarskis, E. J., England, J. D., Forshew, D., Johnston, W., Kalra, S., Katz, J. S., Mitsumoto, H., Rosenfeld, J., Shoesmith, C., Strong, M. J., & Woolley, S. C. (2009a). Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 73(15), 1218-1226. https://doi.org/10.1212/WNL.0b013e3181bc0141

Sulmasy, D. P., & Snyder, L. (2010). Substituted interests and best judgments: An integrated model of surrogate decision making. JAMA, 304(17), 1946-1947. https://doi.org/10.1001/jama.2010.1595