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Catheter Insert

Truth Telling and Disclosure:
 Is it ever acceptable to lie to a patient?

Cases:

A 10 year-old boy has end stage kidney disease and needs a transplant. Among twelve family members an uncle is the only match. This man changes his mind and decides he does not want to be a donor. What will you tell the parents when they ask if a match has been found?

An elderly Korean woman has terminal pancreatic cancer. She wants to know about her condition, but her family members adamantly feel that for cultural reasons only they should know her diagnosis and prognosis.

A woman with a frail psyche has lymphoma. Complex chemotherapy will probably cure her but carries small but substantial risks for permanent lung or heart damage. If she knows these risks she will likely decline the treatment and succumb to the disease. Will you explain these small risks to her?

Central Issues:

Truth telling is itself a virtue and the lynchpin of all relationships, especially the therapeutic one between patient and physician. The foundation of trust, it is usually in the best interests of patients. Empiric studies show that patients invariably want to know the truth about their medical conditions.

It is also axiomatic in medicine that, whatever else they may or may not be able to do, physicians first must do no harm to the patient.

What if truth is harmful? In other words, is it ever ethical to deceive or lie to a patient for the greater good of not doing them harm?

Consider the cases above. Being truthful in each case is one option, but what would be the consequences? Lying to the family of the boy with kidney failure would obviate the harm of disrupted family relations, especially since the uncle will not be a donor anyway. Similarly, telling the truth to the Korean patient would be very insensitive to the family's cultural values. Family alliance will be crucial in later care of this patient and it would not be a good strategy to alienate them now or ever. The physician could defer all such inquires to the family. The risks of chemotherapy are relatively small for the woman with lymphoma so the physician might deceive the patient with a biased explanation of the risks.

The point here is that truth telling is not always straight-forward and must often be weighed against its possible harm.

Related issues:

Medical mistakes are common but not always important. Significant errors leading to morbidity, such as leaving a sponge in the abdomen after surgery, must be disclosed to patients. Should physicians also disclose less important mistakes, such a single inconsequential medication error?

Is it acceptable for physicians to modify medical information on insurance forms so companies would be more likely to reimburse patients? Outright erroneous information is fraud, but there are ways of gaming the system short of this.

Patients also have an obligation to tell the truth. Still, they deceive physicians for a variety of reasons: to hide conditions from insurance companies or their employers, to obtain narcotics for sale or personal addiction.

Guidelines:

Physicians have a basic obligation to be truthful to patients while being sensitive to cultural and emotional factors. The onus is on the physician to justify deception or lying. Regardless of its merits, if the lie is ultimately uncovered, trust is sacrificed and the patient-physician relationship will likely perish. This is a contingency the physician must accept with his decision.

Suggested Readings:

  1. Gallagher, T., Waterman, A., Eben, A., et.al., Patient and physician attitudes regarding disclosure of medical errors, Journal of the American Medical Association, 289 (8), 2003, p. 1001-1007. This article shows that patients want and expect full disclosure of errors and it stresses the importance of emotional support for the patient by physicians in this context.
  2. The, A.,Hak, T., Koeter, G., et.al., Collusion in doctor-patient communication about imminent death: an ethnographic study, British Medical Journal, USA, 1, 2001, p. 42-46. This piece gives an interesting slant to truth telling wherein physician bias and patient filters in the emotionally charged context of imminent death precludes truth being communicated or received.

 

Capacity and Informed Consent: How do physicians know patients are making the right health care decisions? When they cannot decide, who does it for them?

Cases:

A 45 yr old man has an acute bowel obstruction and needs emergency surgery. After an altercation with an admissions clerk over his insurance he leaves the hospital against medical advice.

An 85 year-old woman with several chronic but stable diseases declared in an advanced directive that she did not want any artificial life support mechanisms to be kept alive if her medical condition deteriorated. Now she is semi-comatose from drug induced kidney failure. A short course of dialysis will likely reverse her kidney problem and return her to her baseline health. However, the family wishes her directives be honored and she be allowed to die.

A 28 year-old man sustains severe multiple trauma in a car accident. He is a Jehovah's Witness and refuses to receive transfusions, even though surgery for his wounds will not be possible without replacing blood.

Central Issues:

Capacity generally means a person's ability to do certain things correctly and responsibly. In medicine it refers to a patient's ability to make his health care decisions. This entails understanding relevant information, deliberating and making a judgment about the information and arriving at a decision consistent with previously held values. Physicians have the responsibility clearly to communicate this information and to guide patient deliberation. They must also determine if patients have capacity. If there is clearly diminished mental status wherein understanding and deliberation are not possible, or if a decison is inconsistent with conventional wisdom or a patient's previously held values, someone else, a surrogate, must be enlisted for help with decison making.

Informed consent entails the optimal information, effectively communicated to a patient that will allow a proper decision. What is optimal is case specific. Generally, the higher the complexity and/or risk of the proposed treatment or test, the more information and time allotment for deliberation must be given. For example, informed consent for an elective skin biopsy would be considerably less than for a prolonged multi-drug cancer chemotherapy program.

For the physician, the elements of informed consent include explaining the nature and purpose of the treatment (or test), the risks involved, the chance of success, the alternative treatments and their relative merits, and the likely outcome if no treatment is given. He must also ascertain if capacity is present and that no coercion has occurred. The patient must hear and understand the information, weigh the alternatives, risks and consequences and make a free decision.

Providing all these elements were met, the Jehovah's Witness patient's decision would have to be respected, even though it is antithetical to most health care providers. They might attempt surgery with alternative fluids but the man would likely die in the operating room.

When capacity is lacking a surrogate must help with decision-making. Who this would be legally follows a hierarchy: a court appointee; a medical power of attorney stated in an advanced directive; the spouse; the majority of adult children; then parents and siblings. Knowledge of the patient as a person, specific portions of an advanced directive or verbal statements, and reasonable assessment of best interests, with input from the physician, are all factored into the decisions.

The woman with kidney failure obviously lacks capacity and her surrogates are aware of her wishes through her advanced directives. If the medical problem were chronic irreversible kidney disease there would be no question what to do. Here the dilemma for the doctor is that she has a relatively simple reversible problem that still needs high tech artificial life support. He might try to persuade the family to allow a brief trial on dialysis to confirm that the patient would recover to baseline. In other words, it would be in the patient's best interests to return to her stable baseline state with a short time on dialysis, whereas it would not be right to do dialysis for irreversible renal failure.

Related issues:

Sometimes physicians are prevented from giving all relevant information by so-called "gag rules". Managed care organizations may prohibit doctors from advising patients of treatment options that are more expense than those covered by the organization. Some religiously run hospitals or clinics prevent the discussion of sterilization, contraception and abortion.

Fear, depression and anxiety, particularly in emergency or life threatening situations, can cloud comprehension, judgment and decision making. Here it is often difficult for physicians to ascertain capacity. The first case represents this. The man may have been very fearful of surgery and used the excuse of the argument with the administrator to leave the hospital. The right strategy for his physicians would be to address the fears, possibly provide more information, and convince him voluntarily to stay for surgery.

The courts regard children incompetent to make health care decisions until they are 18. Most older children have some capacity to make their own decisions and their input should be sought when appropriate. Exceptions wherein children are deemed competent are in cases of pregnancy, contraception, and sexually transmitted disease and with emancipated minors i.e. being married or living independent of parents.

Informed consent can be ignored in emergencies where capacity is lacking and a surrogate cannot be located, when a patient waives the right, and with certain government waivers, as with preschool vaccinations and newborn genetic testing.

Guidelines:

Physicians are responsible for assessing capacity and effectively delivering optimal information for patients to make proper health care decisions. If capacity is lacking for whatever reason surrogate decisions must be made consistent with previously known patient wishes or what is perceived as his best interest. In emergencies, when capacity is lacking it is usually imperative to treat the patient until either capacity is restored or reliable surrogate decisions can be obtained.

Suggested Readings:

  1. Drane, J., Competency and giving informed consent, Journal of the American Medical Association, 252 (7), 1984, p 925-927. This is a practical bedside guide for assessing capacity.
  2. Brody, H., Transparency: informed consent in primary care, Hastings Center Report, Sept/Oct 1989, p. 5-9. This article emphasizes the role of openness in a doctor's thought process for enhancing patient understanding and subsequent decision-making.
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