What is the most ethical way to make difficult treatment decisions for a patient with dementia who has no living relatives and no advance directives?
Paul R. Helft, MD
A 72-year-old man with moderately advanced dementia who lives in a nursing home is admitted to the hospital for workup of a sore throat and persistent hoarseness. He has lived in the nursing home for more than 4 years and has no surviving relatives and no specific advance directives. He is oriented to person and place but thinks that it is 1987. He enjoys conversing with staff and other residents, and he enjoys watching television, particularly baseball. His hospital workup reveals a squamous cell carcinoma on the true vocal chord with extensive ipsilateral lymphadenopathy. Treatment options being considered include:
• Definitive chemoradiotherapy (CRT) plus or minus surgery.
• Surgery alone.
• Palliative radiotherapy (RT) alone.
• Palliative care alone.
How should the decision regarding treatment be made? What is the most ethically appropriate therapeutic choice?
Several issues are important in this case. These include:
• The patient was determined to lack the decision making capacity required to make such a treatment decision.
• The patient’s wishes could not truly be known
• The treatments and the disease itself were both likely to have a major impact on the patient’s overall condition and on those activities from which he seemed to derive pleasure, such as conversing and socializing
Surrogate decisions are best made when patients’ wishes are known; when they cannot be known, other valid bases for decision making include using substituted judgment or consideration of the patient’s “best interest.” In this case, the only available basis for the decision is consideration of the patient’s best interest, since no one knows his values and preferences well enough to be able to offer an informed opinion as to what he might want to do in such a circumstance. The question is what that “best interest” is.
Each of the radically divergent treatment options under consideration could have different significant effects on the patient and his quality of life. Importantly, arduous and prolonged treatments such as CRT would be highly disruptive to such a patient and would be very likely to lead to tremendous morbidity; they could also significantly worsen-perhaps permanently-the patient’s dementia and mental status, even permanently. On the other hand, such treatment regimens not infrequently lead to cures. Laryngectomy has the benefit of confining treatment to a briefer time course; however, it would have a radical impact on this patient’s ability to speak, one of the apparently most important aspects of his quality of life. RT alone might control local symptoms for a time and would have less morbidity than CRT, but it would be highly unlikely to cure the patient. Palliative care alone ignores the fact that his untreated cancer can itself lead to many problems and quality-of-life issues.
The chief problem with using a “best interest” standard for decision making on behalf of this patient is that several of the patient’s interests are in tension with one another. Should his cognitive function be the most important? His ability to speak? Should the fact that he might be curable (although potentially at great cost) take precedence? These and other dimensions of this patient’s case, and most other similar cases, make the determination of “best” interest extremely challenging.
The ethical part of the analysis of this patient’s case therefore concerns which of these options best balances the burdens and benefits of treatment when making a decision in line with the patient’s authentic preferences is not an option because these preferences are not known.
In discussion with the patient’s treating team, the consultation group recommended palliative RT alone as the option that would best balance the treatment- and disease-related toxicities, and that would preserve as much of the patient’s mental status and ability to interact with others as possible.
Disclaimer: The advice offered in this ethical consultation feature is based solely on the information supplied by readers, and is offered without benefit of a detailed patient history or physical or laboratory findings. The information is offered as a discussion of ethical issues and is not intended to be medical or legal advice and, therefore, should not be considered complete or used in place of a formal ethics consultation or in place of seeking advice from your ethics committee, legal counsel, or other available resources. One should never disregard or change medical advice or delay in providing it because of something that is printed here. The opinions expressed here are only those of the author and do not reflect the viewpoint of Cancer Network.