Cultural differences complicate a terminal cancer diagnosis
By Lachlan Forrow, FACP
| Sidebars: |
An 83-year-old woman of Russian descent is hospitalized with progressive dyspnea and a chest X-ray highly suggestive of metastatic cancer, which is confirmed on bronchoscopy. Her two sons adamantly insist to the attending hospitalist that their mother not be told that her illness is terminal. Their father died of cancer when they were young, they explain, and their mother is consequently so terrified of cancer that she would be devastated by the diagnosis, even potentially suicidal. Besides, they say, in Russia it is considered cruel to tell someone that she has terminal cancer.
Dr. Forrow
Commentary
There are traditionally three exceptions to the usual requirement to inform the patient of her diagnosis and prognosis (informed consent): emergency, waiver and “therapeutic privilege.” In principle, “therapeutic privilege” may apply if informing the patient would cause clear and serious harm to her. In such a case the physician’s ethical obligations to promote the patient’s welfare (beneficence) and not to hurt the patient (non-maleficence) might outweigh the obligation to respect the patient’s autonomy.
Several decades ago, U.S. physicians commonly invoked therapeutic privilege in withholding a diagnosis of terminal cancer. Since the 1970s, however, greater public insistence on a patient’s right to make his or her own informed choices (“autonomy”) has almost eliminated this practice. The trend has been driven by an increased awareness that, despite the often quite severe immediate psychological impact of hearing devastating news, honest disclosure is necessary in the medium- to long-term in order to develop and implement a plan of care that maximally promotes the patient’s welfare.
Eric J. Cassell, MACP, a renowned clinician-educator, ethicist and pioneer in the field of physician-patient communication, has long argued against framing cases like this in terms of a moral dilemma of “autonomy versus beneficence.” Instead, Dr. Cassell insists that the central issue is the skill of a physician in communicating bad news. Competence in the care of seriously ill patients, he argues, requires being simultaneously honest with a patient and family and supporting them in ways that can ultimately lead to the healing of the person and family, even when the disease’s progression cannot be slowed. As Buckman et al. explain (see Sidebar box, “Additional resources”), these are skills that can be learned.
This case, however, also involves significant cultural issues: in Russia, Japan and elsewhere, it is still considered cruel to tell a patient that she has terminal cancer. Might not optimal care here involve respecting the patient’s own cultural traditions? For example, family support will be crucial in caring for the patient, and mobilizing that support may be more difficult if the physician alienates the family by insisting on U.S. standards of disclosure.
In this case, as a matter of “preventive ethics” it would have been preferable from the very beginning to ask the patient herself how she wanted information and decision-making to proceed. If she says she wants to know her diagnosis, she must be told the truth. If instead she prefers her sons to handle information for her, then doing as they insist would have at least some justification. However, it is often impossible in practice to provide effective care while successfully withholding a diagnosis. And if the patient learns, often inevitably, that her medical and family caregivers have hidden important information from her, her last phase of life may be dominated by anger and distrust.
In most if not all cases like this, a physician eventually must find a way to inform the patient and to support her and her family in dealing with the unavoidable challenges of her progressive disease. It may not be possible for the hospitalist, who has a very short-term role, to do this without seriously antagonizing her family. The bulk of the responsibility for disclosure and subsequent care, therefore, falls to the primary care physician.
Follow-up
The sons maintained a vigil in the patient’s room that made it impossible for the hospitalist to conduct an honest conversation with their mother. However, her primary care provider said that he knew the family very well and that he believed the patient would be able to handle learning her diagnosis from him during an outpatient visit immediately after discharge. He thought he could do so in a way that her sons would ultimately accept. Achieving this was crucial because they would be her most important caregivers.
As she was preparing to leave the hospital with her sons, she turned to her nurse and said “I know I have cancer. Am I going to die soon?” The nurse reassured her that her doctor would be talking to her about everything the next day.
Lachlan Forrow, FACP, is director of the Ethics Support Service at Beth Israel Deaconess Medical Center in Boston and associate professor of medicine at Harvard Medical School. E-mail your comments on this case and commentary to acpinternist@acponline.org.
Case of elderly woman refusing treatment raises questions
.Paula Lester, FACP, of Mineola, N.Y., sent these questions for Dr. Forrow after reading January’s column, “Examining ethical dilemmas that occur in everyday practice,” where Dr. Forrow discussed the case of an elderly diabetic patient who refused dialysis.
Question: Dr. Forrow talks about “extensive discussions explaining the need for dialysis.” Isn’t it better when speaking with patients and families to discuss the “reasons,” “indications” and “purpose” of medical interventions, which implies permission to decline the treatment?
Dr. Forrow: Your point is important and correct but I would not be too harsh on the physicians who used the word “need” here, since it was the judgment of the physicians involved that in order to have a reasonable possibility of achieving the patient’s goals (avoiding death and symptom control) immediate dialysis was needed.
The fact that the patient survived until her symptoms got worse and she agreed to dialysis was fortunate.
Question: Patients and families should always be aware that there are options for treatment even when life-prolonging treatment is declined. Shouldn’t any patient with serious illness who declines life-prolonging treatment, including dialysis, be considered for hospice care?
Dr. Forrow: You are completely correct. Another role I have in my medical center is Director of Palliative Care Programs, and one of the most common shortcomings in our care of patients with life-threatening illnesses is that clinicians do not even raise the option of hospice, which patients and families should be informed of from the first time that a possibly-soon-terminal illness is identified. In this case, hospice was explicitly considered but not implemented, because the patient did not believe that death was on even the medium-term horizon, and the family and the involved clinicians thought that if her symptoms worsened she would (as she did) want to come back to the hospital for life-saving/prolonging interventions (including dialysis).
Additional resources
.“How to Break Bad News: A Guide for Health Care Professionals,” by R. Buckman, with contributions by Yvonne Kason, MD. Johns Hopkins University Press. 1992
“The nature of suffering and the goals of medicine,” by E.J. Cassell, New England Journal of Medicine 1982; 306(11):639-45
“Changes in physicians’ attitudes toward telling the cancer patient,” by D.H. Novack, R. Plumer, R.L. Smith, et al. Journal of the American Medical Association, 1979; 241:897-900.
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