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Home » Ethics

CONSULTATIONS IN ETHICS 

Hard Choices

By Paul R. Helft, MD | August 8, 2012
Dr. Helft is an Associate Professor of Medicine at the Indiana University School of Medicine; his clinical work is based in the Gastrointestinal Oncology Program at the Indiana University Melvin and Bren Simon Cancer Center. Dr. Helft is also director of the Charles Warren Fairbanks Center for Medical Ethics at Indiana University Health in Indianapolis.

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.

(MORE: Don't Tell Me Anything Negative)

How should the decision regarding treatment be made? What is the most ethically appropriate therapeutic choice?

Dr. Helft Responds


Paul R. Helft, MD

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. 

Follow-Up

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.

 

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by José Mauricio Flores Sosa | March 19, 2013 5:30 AM EDT

surgery alone, the wife , informate , escamous cell cncer is secondary to smoke, an auto damaging

by ML BERNSTEIN | March 15, 2013 6:02 PM EDT

The proper - and ethical - and most professionally enlightened and most sober course to follow is first to consult the applicable state or jurisdiction law which relates (1) to the definition of the legal terms of art "capacity"and "incapacity" or similar term; (2) to how and by whom these terms are applied; (3) to what procedures must be followed by all concerned, including relatives and the degree of due diligence to find them and in what order, resolution of conflicts which may arise and similar issues that treating personnel and facilities and courts that have jurisdiction over these matters must be aware of and must follow.

If a person cannot give - or is properly determined not to have capacity to give - "informed consent", as that term of art is defined in a particular jurisdiction, usually both by statute and by applicable case law, then each jurisdiction provides a means of determining who or what body can provide it and under what circumstances it can be provided.

Except under exigent circumstances, also defined by applicable law, decision-making relative to those persons determined to lack competence or capacity to make treatment-related decisions is usually resolved by application to a jurisdiction-determined and specified court to appoint a guardian or guardian ad litem or some other qualified and responsible person or persons to substitute its judgment in specified matters and to a specified extent for that of the incompetent person, with the court retaining jurisdiction over the guardian and of the matter.

However "well-meaning" and properly motivated and properly constituted any self-appointed "treating team" may be, it cannot and should not arrogate to itself healthcare or other determinations to substitute its judgment for that of its patient. The laws of the jurisdiction must be consulted, including consultation with knowledgeable and competent legal counsel in that jurisdiction, and the prescribed procedures must be - and ethically should be - followed. Doing anything less is unethical - and unprofessional.

Moreover, failure to adhere to the above could result in very serious adverse professional - and personal - consequences and liabilities, both predictable and foreseeable.

See, as representative of these statutes, that of New York State, New York Mental Health & Hygiene Law § 81.02, below.

The patient presented, as presented, should have a properly court-appointed guardian or representative, however denominated in the jurisdiction.


New York Mental Health & Hygiene Law § 81.02
Power to appoint a guardian of the person and/or property; standard for appointment.
(a) The court may appoint a guardian for a person if the court determines:
1. that the appointment is necessary to provide for the personal needs of that person, including food, clothing, shelter, health care, or safety and/or to manage the property and financial affairs of that person; and
2. that the person agrees to the appointment, or that the person is incapacitated as defined in subdivision (b) of this section. In deciding whether the appointment is necessary, the court shall consider the report of the court evaluator, as required in paragraph five of subdivision (c) of section 81.09 of this article, and the sufficiency and reliability of available resources, as defined in subdivision (e) of section 81.03 of this article, to provide for personal needs or property management without the appointment of a guardian. Any guardian appointed under this article shall be granted only those powers which are necessary to provide for personal needs and/or property management of the incapacitated person in such a manner as appropriate to the individual and which shall constitute the least restrictive form of intervention, as defined in subdivision (d) of section 81.03 of this article.
(b) The determination of incapacity shall be based on clear and convincing evidence and shall consist of a determination that a person is likely to suffer harm because: 1. the person is unable to provide for personal needs and/or property management; and 2. the person cannot adequately understand and appreciate the nature and consequences of such inability.
(c) In reaching its determination, the court shall give primary consideration to the functional level and functional limitations of the person. Such consideration shall include an assessment of that person's:
1. management of the activities of daily living, as defined in subdivision (h) of section 81.03 of this article;
2. understanding and appreciation of the nature and consequences of any inability to manage the activities of daily living;
3. preferences, wishes, and values with regard to managing the activities of daily living; and
4. the nature and extent of the person's property and financial affairs and his or her ability to manage them. It shall also include an assessment of (i) the extent of the demands placed on the person by that person's personal needs and by the nature and extent of that person's property and financial affairs; (ii) any physical illness and the prognosis of such illness; (iii) any mental disability, as that term is defined in section 1.03 of this chapter, alcoholism or substance dependence as those terms are defined in section 19.03 of this chapter, and the prognosis of such disability, alcoholism or substance dependence; and (iv) any medications with which the person is being treated and their effect on the person's behavior, cognition and judgment.
(d) In addition, the court shall consider all other relevant facts and circumstances regarding the person's:
1. functional level; and
2. understanding and appreciation of the nature and consequences of his or her functional limitations.

Consultations in Ethics

What Are My Responsibilities to Inform?

Hard Choices

A Patient “Disrespected”

Am I Obligated to Give Therapy Against My Better Judgment?

A Wife Asks for Futile Therapy for Her Husband, a “Fighter”: How to Respond?

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