Protection from the Truth: A Challenge for Surrogates and Health Care Professionals

Truth telling is considered a cornerstone of the physician-patient relationship. Physicians depend on patients telling them the truth, without which it would be impossible to undertake making an accurate diagnosis and undertaking care. Patients depend on physicians being truthful so that they can make decisions about their illness and plan for the future. In the past, the idea of truth telling was sometimes compromised in order to “protect” patients’ best interests or to prevent emotional harm. However, with the move away from physician paternalism to an increased respect for patient autonomy, the idea of not telling the truth has been generally rejected as part of patient care. Family members acting as surrogates for their loved ones often request that the truth be withheld, usually to prevent what is perceived as possible terrible harm to their loved one. Physicians may have to work closely with these family members to make sure that their patients are well cared for and their autonomy respected while acknowledging the critical role that loving family members play in the process of achieving desirable care. Two illustrative cases are presented here.

CASE 1

The medical students were gathered in the seminar room for their weekly session on medical ethics. A newly appointed staff physician asked if she could join the seminar. One of the cases to be presented was of a patient on her unit. The staff was experiencing some discomfort and thus the case was being brought forward for discussion. “We need your help because the daughter is asking us to withhold information from her mother, which we feel she is entitled to know. There is a sense of urgency about this as we have to respond to the daughter’s request by tomorrow as her mother is booked for a breast biopsy.”

The ensuing story was told by the resident responsible for the 86-year-old patient’s care. The co-resident and staff physician added comments to clarify points brought up by the coauthors and the medical trainees attending this weekly geriatric ethics seminar:¹ “Mrs. R lives in the nursing home level of care. Other than some serious medical disabilities caused by diabetes and vascular disease, she is reasonably well-functioning with relatively mild cognitive impairment. She was sent to a general hospital a few weeks ago with an episode of poorly resolving pneumonia and was found to have thoracic nodes and an abnormal bone scan, suggestive of metastatic disease. A breast lump was found in her right breast. She was scheduled for a breast biopsy. As aforementioned, the daughter does not want the staff to tell her mother why she is having the biopsy or to disclose to her the abnormalities on the x-rays and scans.”

The resident continued with her narrative: “The daughter feels so strongly about the need to protect her mother that she has actually forbid us to tell her, and said as her surrogate it was her decision as to what information was to be given to her mother.” The resident noted that a younger brother did not feel as strongly as her sister about not telling their mother, but deferred to her as the primary care provider as he lived out of the city and was less involved in care or communication. Both children expressed their determination to protect their mother, who they felt would not deal well with the bad news. They could not see the benefit of telling her that she had metastatic breast cancer, should that diagnosis be confirmed.

The discussion revolved around the appraisal of and potential conflict between the concepts of autonomy and nonmaleficence. Following the concept of autonomy would involve treating Mrs. R in a respectful and dignified process, whereby she would be provided information regarding her state of mind and the opportunities to participate in informed consent and decision-making processes. This was translated by the medical team as meaning disclosing medical test results and possibly respective diagnoses. Nonmaleficence (“do no harm”) translated into the daughter wishing to protect her mother from possible bad news, should the biopsy turn out to be positive.

We discussed the ethical issues that were to be balanced in this case. These were respect for the patient’s autonomy, which under most circumstances would compel her physician, in a supportive and respectful way, to provide her with information necessary for her to make informed decisions while respecting the desire on the part of her children to prevent her from harm. This is a commonly experienced triad in end-of-life decision making in geriatric and long-term care: balancing autonomy, beneficence, and nonmaleficence. Intrinsic to being able to make informed decisions, apart from required competence, is being told the “truth.” Truth telling, while culturally based, is generally perceived by North American medical practitioners to be fundamental to the fiduciary relationship between professional caregivers and patients, and intrinsic to trust building.

-----
Ethical Issues
• Autonomy: What are Mrs. R’s current competent wishes, or if currently incompetent, what are her known past competent wishes?
• Beneficence: What would constitute “doing good” with respect to Mrs. R’s wishes? How do we engage the family system in a supportive role?
• Nonmaleficence: What constitutes reasonable avoidance of harm in this case? Is protection from the truth warranted or does it harm the patient?
-----

It was suggested in the seminar that the goal should be to promote and enhance the family fabric of caring and commitment. The approach would be to try and find common ground between the children and the health care providers, as both were clearly dedicated to the well-being of the patient, although from somewhat different vantage points. The mother felt that she was able to understand information about her illness and had inquired about the proposed biopsy. It was agreed that in the presence of the daughter, the physicians would tell her that she had a “lump” in her breast and that a biopsy would be performed to determine its cause. It was agreed that further questions from the patient would be entertained once the results of the biopsy became available. The group acknowledged that the difficult step would be what would be communicated should the biopsy come back positive. Decisions would have to be made about potential treatments. Everyone at the seminar felt that at that point they would not be able to withhold vital information from the patient if she asked to be informed—even at the protest of the children. The goal would be to include them in the deliberations as to possible treatments and prognosis, rather than creating potential conflicts between clinical practice and ethical principles that would ultimately not serve the patient, her family, or the staff.

A meeting took place with the social worker, attending physician, head physician, daughter, and clinical ethicist. The daughter immediately thanked the team for all their efforts and praised the care her mother had received. The team complimented her on being such a wonderful, devoted, and caring daughter, and assured her that everyone had her mother’s best interest at heart. At the same time, the team expressed their desire to support her and her brother during their difficult time in ways that could be morally justified.

Everyone agreed that there was a shared common goal: the welfare of the patient. It was also acknowledged that the staff might apply a different interpretation of what beneficence might be in the mother’s case, but respected that the daughter’s beliefs and desires are well intended and reflected her perception of what an act of beneficence might be by withholding the truth about diagnosis in order to protect her mother. Her desire to hide the truth was reframed as not being a problem, per se, but rather an act of benevolence. The staff were not convinced that the mother would have wanted to be shielded from the truth, that to act as her spokesperson or advocate might entail sharing the diagnosis with her and allowing her to plan her life accordingly. The staff members were concerned that failing to share the patient’s diagnosis with her might polarize all concerned. If she knew that she had metastatic cancer for which there was reasonably effective treatment, then she would be able to make critical decisions affecting her care and remaining life. Even if the staff agreed to withhold the diagnosis from her, it was likely that she would find out in other ways that could have been more startling and devastating.

The daughter was able to differentiate her own preferences from those of her mother. She provided a number of examples congruent with her mother’s wish to not know the “whole truth,” and how detrimental it had been in the past for her when she did hear “bad” news. Nonetheless, while it may have been detrimental to her mother, her mother may still have preferred to know. The daughter was adamant that the opposite was true—that she shared a very close relationship with her mother for many years, and that to know her is to know that she would prefer to avoid “bad” news.

The staff clarified the issue of competence, and it was clear to the team that her mother suffered from mild dementia and might require a degree of substituted decision making. They also learned that there was a significant family history and legacy of truth denial and/or distortion, and that to honor this family and their method of getting through life was to honor the role this particular behavior played in the ongoing family dynamics. The daughter pleaded with the staff to allow their family to continue to relate to each other in the way in which they found meaning. Health care providers should seek to understand “meaning” through exploration of religious, cultural, and spiritual beliefs held by the patient and family. Conflict may occur when the beliefs and value systems collide between the patient and/or family and professionals. In such circumstances, all attempts must be made to honor the wishes of the patient and family whenever possible. In addition, attempts should be made to understand the values and beliefs of the patient as early as possible, preferably directly accessed by the patient, or if not possible, through an existing advance directive or, if nonexistent, via a substitute decision-maker.

The staff let the daughter know that if the mother clearly asked them if she had cancer, they would not lie, regardless of what the daughter might say to her mother. They explained the ethical underpinnings of this position, and the daughter respectfully accepted and acknowledged the difference of opinions. The staff agreed that it would be insensitive to mention cancer without a formal oncology consultation. It might be unethical, in fact, to do so, as hope seemed to be a very meaningful and potent aspect for all members of this family. Furthermore, it raised the issue of repeating the diagnosis of cancer given the patient’s memory problems with potential consequences of retraumatizing the mother over and over.

The tensions inherent in the disparate poles, held by the professional team and the daughter, gradually melted away, solidifying into one mindset through their personal or professional ties, desire for the patient/mother that she herself would want in this situation if she could express it. There was no question that the daughter was in the best position to speak to that. At the same time, the trust and caring that occurred between the staff and daughter allowed for compromise that respected the underlying values of the daughter’s narrative, and allowed space for the professional team members to ally their actions in accordance with sound professional ethical principles.

A few weeks later while still awaiting the oncologist’s appointment, it was agreed that the team would tell her mother that she had a tumor/growth that had spread and required treatment. They acquiesced to the daughter’s request to avoid the word “cancer.” This was done without any untoward effect on the mother, and she agreed along with the daughter to tamoxifen therapy recommended by the oncologist, which was initiated with the hope of slowing the progress of the disease and moderating her symptoms. The daughter visits her mother daily and continues to love her and honor her. She says every day her mother lives is another victory, and she is grateful for the team’s understanding and support.

CASE 2

In a similar case that occurred more remotely, an elderly woman was found to have metastatic lung carcinoma of uncertain etiology complicated by a pleural effusion. She was transferred to a long-term care facility for palliative care. As soon as the decision was made to transfer her, the physician was approached by the patient’s three children. Two of the children were highly respected physicians, one a psychiatrist with the “demand” that she not be told of her diagnosis. All three concurred. When asked what they were to tell her about her diagnosis and the reason for the transfer to the long-term care facility, the treating physician was told, “Tell her she has some kind of mysterious inflammation, for which the treatment is not certain. She is from an era where the term inflammation was used a lot.” He reluctantly, and perhaps naïvely, agreed as they were so determined in their request and he had not yet had sufficient experience in this domain to give cogent reasons for not accepting their heartfelt plea.

The physician instructed the staff to use the term inflammation whenever her clinical condition was discussed with her. Over time her condition deteriorated, and the pleural effusion became increasingly symptomatic, requiring frequent pleurocentesis. Finally, a talc poudrage was instilled, which provided temporary and only modest relief. A member of the family stayed by the bedside at all times, preventing any private conversation between the patient and physician.

One day, the physician passed her room and noticed that no family member was with the patient. The patient beckoned the physician into her room. “Where is your family?” he asked. “They are all away at my grandson’s graduation from medical school today. I am too weak to go.” She went on, “Tell me, what is this terrible inflammation that I have? It is so mysterious. There just doesn’t seem to be any treatment for it. It is worse than cancer. At least with cancer you know what you are dealing with. With inflammation there just doesn’t seem to be any answer. I hope someone is doing research on this inflammation. It is a terrible disease.”

She died some time afterward, without the family ever having the opportunity to discuss the realities of her dying or give her the opportunity to reveal her deepest thoughts. The family could not bring themselves to discuss the reality of her malignant illness with their mother. Some years later the physician told the grandson, who was then a practicing physician, the conversation he had had with his grandmother. He acknowledged that the family realized that they had done his grandmother a terrible disservice by keeping the truth from her, thereby eliminating their ability to tell her things that they would have liked to say. It also prevented the patient from anticipating and planning a conclusion to her life. The so-called “conspiracy of silence” resulted in a loss for the last chances of intimacy between the patient’s children and herself.

DISCUSSION

Despite what appears to be a clear understanding of the implications of the primary ethical principles that govern medical care, it is quite common to experience conflicts with families as they struggle to make what they deem to be the “right” decisions for their loved ones.^2-8 Sometimes health care providers get so caught up in the clinical aspects of their patients’ care, as well as the ethical dilemmas, that they lose sight of the human aspect of end-of-life decision making.^9-17 We have to be very sure that before we invoke ethical principles to deal with family members, we remember that at the end of the illness and after the grieving and mourning period, it is the families that have to live with their decisions. It is for us to help them make the best decisions possible and try to shepherd them through the conflicting aspects of decision making.

In formulating an ethical approach, a correct decision intellectually may not translate into an emotionally sound approach for the family and patient. Our challenge as ethically based and clinically sound health care professionals must be to find the way through the emotionally charged and ethically challenging decision-making process. The goal should be that the family survivors and health care providers can live with themselves and feel that they did, to the best of their ability, the “right thing.” Sometimes we have to interpret the ethical principles and foundations that we use to guide us and that have become so important in the decision-making field in the context of that family’s dynamics and personalities.^2-4,18-22 As long as staff members are not asked to do something that is clearly unprofessional or that contradicts good clinical and psychosocial practices, we should allow our ethical interpretations to continue to reflect the commitment to humanity and respect for patients and their families that is the essence of geriatric and long-term care.

Please submit manuscripts on ethical issues in long-term care to Fred Feinsod, MD, MPH, CMD, Department Editor, at Feinsod@fmfmd.com.