(Author: Maurice Silbert, Vol. 64, No. 2, Rosh Hashanah 2009)
To tell or not to tell, particularly when it applies to breaking news to a patient regarding an illness feared to be serious or life threatening, has always been a controversial issue in medical practice and society at large, and raises numerous ethical issues. Moreover, there are distinct differences in the approach to this topic amongst various religious and cultural groups. This article attempts to define the Jewish approach, and hopefully to create better understanding of the subject amongst doctors and all health-care providers.
Although there has been a universal shift towards the right to know, in keeping with the culture of the open society, there is still a tendency to withhold the whole truth of the ultimate prognosis of the illness. Reasons for this include “perceived lack of training [of doctors and other health care providers], no time to attend to the patient’s [on-going] emotional needs, fear of negative impact on the patient, uncertainty about prognostications, requests from family members to withhold information, and a feeling of hopelessness regarding further curative treatment”.1 The traditional view amongst doctors is that most patients do not want to know of the terminal nature of the illness, and have difficulty in coping with the emotional trauma of such disclosures. Alternatively, it is felt that the whole truth, and the way it is often disclosed by doctors, can be insensitive or even brutal, as such lacking compassion on the part of the doctor, and thus being morally indefensible. The implication is that withholding some of the truth can be justified.
In a discourse on contemporary medical practice Rabbi Immanuel Jacobovits, former Chief Rabbi of the United Kingdom and noted bio-ethicist, stated in the context of imparting bad news, ‘…we are opposed to divulging the whole truth if there is the slightest suspicion that by doing so, we may cause a physical or mental setback to the patient…peace of mind takes priority over truth, and if necessary, for the sake of the health of the patient, we may play down and suppress the truth…[and] hope is not ultimately removed from the patient…2. Within the ethos of Judaism, it fulfils the Jewish recognition that the sanctity of life is paramount – very fraction of every second of life being of infinite value. Psalm 71, states ‘…when my strength faileth, forsake me not…but as for me, I will hope continually…’.3
Providing hope is not unique to Judaism. Eastern religions and Christianity profess their own particular approaches to providing hope. Relief of pain and suffering, for instance, provide the patient and family with hope and meaning from which they gain strength in the face of fear. Moreover, in the medical context it is realistic to provide hope in view of the vast improvement in the management and prognoses of malignant diseases.
Providing hope is, therefore, universally seen to be a central force between recovery, and belief in recovery. Withholding the truth in order to provide such hope is, however, fraught with problems and dilemmas for the doctor since ‘well-intentioned practices of withholding information may have detrimental consequences for patients, their families and friends, and the health-care team’.4 There is a distinct possibility that the patient may lose trust in the doctor when ultimately, and inevitably, s/he becomes aware of the true nature of the illness and its ultimate prognosis. Consequently s/he may also disbelieve what s/he is told thereafter, and this may seriously infringe on the doctor-patient relationship.
It may also be regarded as paternalism on the part of the doctor, who takes it upon him/herself to decide what, and how much, the patient ought to know, thereby failing to recognize the autonomy of the patient. There is a strong emphasis on patient autonomy and the right to know, which constitutes one of the most important ethical reasons for truthful disclosure. Patient autonomy is recognize by the South African Medical Association as an important ethic in doctor-patient relationship, and has incorporated it in the Association’s credo and code of conduct. The right to know enables the patient to share in decision-making about treatment, and in effect about his/her own life and destiny. Awareness of the diagnosis and its prognosis also provides opportunities for the patient to discuss his/her uncertainties and fears, and share feelings such as depression, anxiety, and isolation – not only with the doctor but also with family members, friends and other significant individuals who can provide support. Research has also found that being honest with patients rather than adopting an avoidance approach is a way of fostering hope.5 From a temporal perspective, patients may want to attend to more practical matters such as business or domestic affairs, and come to terms with personal relationships with family and friends. A large cross-cultural study endorses the fact that patients can discuss the topic without it having a negative impact on them.6
How then can the Jewish doctor resolve the dilemma between our moral obligations to show compassion, in accordance with the aforementioned Rabbinical injunctions, while at the same time fulfilling ethical commitment to disclosing the truth?
Awareness by the doctor of the coping or defense mechanisms of the patient, and the psychological stages which patients diagnosed with serious or lifethreatening illness experience, provide a model or basis for an approach by the doctor. In her widely acclaimed, groundbreaking book On Death and Dying, Elizabeth Kubler-Ross7 describes the stages of denial, anger, depression, and ultimate acceptance. Denial is the strongest human defense, and during this stage there is disbelief of the seriousness of illness. By way of example, patients may want to block out the fact that they have cancer and often it would be appropriate for the doctor initially to use terminology such as ‘growth’ or ‘tumor’. By informing the patient of the diagnosis the doctor is fulfilling his/her commitment to telling the truth. By initially withholding information about possible serious implications or prognosis of the illness, the doctor allows the patient time to gather him/herself: by so doing, he/she respects the patient’s defenses of denial and shows compassion towards the patient.
In the course of time, the patient’s defenses of denial gradually diminish and there is acceptance of the true nature of the illness. The general principle of the doctor’s approach, therefore, is that it is usually possible to temporise, and impart the news in stages in keeping with the patient’s defenses, withholding some of the truth when necessary, and allowing the patient time to set his/her own pace and mobilize less radical defenses as s/he becomes adjusted to the seriousness of the illness. The social worker Margaret Abeles states that Rabbinic law says, “…one should not divulge the truth”. She adds, however, “…there are also sources that teach us that if the patient is so disturbed by knowing it is permissible to tell him/ her, as the knowledge will be a source of relief. Therefore, it seems that Jewish law says that we must be guided by our patients”.8 Rabbi Jacobovits puts the Jewish approach succinctly: “…the patient should be allowed to buy time, gather himself and mobilize his resources…” This demonstrates compassion and is in keeping with Jewish humanistic philosophy.
The principles embodied in the above not only facilitate doctors’ communication with their patients, but also help to resolve many of the moral, ethical, and religious dilemmas facing them.
End of Life Decision-Making
Doctors’ undergraduate training emphasizes the importance of making diagnoses and curing illness, be it heart attack, pneumonia, or for that matter any illness, ailment, or injury. When cure is no longer possible, such as in chronic refractory or terminal illness, and ultimately in the dying process, relief of pain and suffering become preeminent. The adage coined by John Fry, a veritable doyen of family practice, to “cure sometimes, relieve often, and comfort always”, becomes singularly appropriate. Caring for our patients’ medical problems and caring about them as human beings, a paradigm for all doctors in all disciplines of medicine, becomes the defined role and elevates the role of curing to that of healing.
In the case of Jewish patients, there is the added responsibility for the doctor to have insight and sensitive to religious practices and Halachic imperatives, particularly so in terminal illness, and where life and death decisions present difficult dilemmas. Two cases are here presented which illustrate the role the doctor can play in resolving such problems.
Case no.1
Mike, aged 76, suffered severe head injuries for which he was hospitalized and subjected to brain surgery. Following the surgery, he remained deeply unconscious and had to be supported by artificial ventilation. The family who gathered around him on a daily basis suffered unendurable stress at observing their beloved Mike in so heart-rending a situation. In the company of their Rabbi, who was a close family friend, they would sit praying at Mike’s bedside. After two days, it was quite apparent that Mike’s comatose state was irreversible and he would not survive. The family’s agony had now reached breaking point and they were consulted about terminating life-support. This provoked a serious dilemma in view of the Halachic constraints expressed by their friend, the Rabbi.
The doctor consulted with the Rabbi, who with sublime generosity, insight and humanity, agreed to distance and recuse himself from any decisionmaking, while the same time reassuring the doctor that he would accord Mike a traditional Orthodox burial whatever decision would be taken by the doctor and family. The doctor visited the family and comforted them by relating the Rabbi’s sentiments, and advised them that the recommendation of terminating life support rested on the doctor’s shoulders, and that the Rabbi could not be expected to participate in such decision-making. The family agreed to the medical advice and the painful decision to turn off the ventilation was made. Within six minutes of doing so their beloved Mike’s life terminated. The family left Mike’s bedside and returned home in the comfort of their togetherness.
Termination of life and euthanasia are anathema to Judaism. The debate on termination of life in the terminally ill has prevailed over centuries and as far back as the Talmud which states that to hasten the death of a dying person is prohibited. More recent Rabbinic literature of the treatment of the terminallyill is that of Rabbi Feinstein,9 a noted bioethicist, who stated that for a patient with pain and suffering who cannot be cured and cannot live much longer, it is not obligatory for physicians to administer medication to prolong life and suffering, and nature may be allowed to its course. Therefore, although it is prohibited to administer medication to hasten death, it is not obligatory for doctors to administer medication to prolong life and suffering. In the case of Mike, the artificial ventilation with oxygen can justifiably be construed as administering medication to prolong life of a patient who cannot be cured and cannot live much longer. Withdrawal of life support would therefore be justified, not only on humanitarian grounds but also within the context of Rabbi Feinstein’s injunction.
Case no. 2
Sarah and her husband, Sam, had immigrated to South Africa from Germany in the mid-1930s. After some years, Sarah contracted a malignant illness to which she ultimately succumbed. She had stipulated in her will that she wished to be cremated – an anathema to Orthodox Judaism. Her family, who practiced Orthodox Judaism, expressed extreme discomfort about her request and insisted on a traditional burial. This was reinforced by the fact that Sarah’s father had been an Orthodox Rabbi. However, the request of an individual stipulated in a will is regarded as sacrosanct and should be respected.
The doctor counseled the family at great length, ultimately drawing their attention to the fact that many of Sarah’s acquaintances and family members had perished in the crematoria of the Nazi death camps, and that she was manifesting what was referred to as ‘survivor guilt’, and desired the same fate. The family gained insight into this dynamic and agreed to the cremation that was then to be conducted by an alternative congregation.
The term ‘survivor guilt’ has been documented by Holocaust commentators, such as Andy Doullard in 2005 in a lecture course on ‘interdisciplinary Perspectives in the Holocaust’. The dynamic which operates in such cases was verbalized in these words… “why am I still alive when others have perished…?” Survivor guilt is also connected to an unconscious feeling of powerlessness in the face of atrocities perpetrated against loved ones.
Dr Maurice Silbert is a family practitioner in Cape Town.
NOTES
- Hancock, K et al, Palliative Medicine 2007, Vol. 21, pp507-517
- Jacobovits I. ‘Ethical and moral issues in contemporary medical practice’. Proceedings of an in-house conference.Faculty of Medicine, University of Cape Town, 7-8 August,1985. Edited by Professor S R Benatar, p42.
- Ibid.
- Fallowfield, I J et al: Truth may hurt but deceit hurts more.Communication in palliative care. Palliative Medicine, 2002:16 (4): pp297 – 303
- Weinreich, et al. ‘Communication with dying patients within the spectrum of medical care from terminal diagnosis to death’. Arch. Intern. Med. 2001: 161 (6): pp868 – 74
- Hancock, K et al, Palliative Medicine 2007, Vol. 21,pp507-517
- MacMillan (N.Y.) 1969.
- M. Abeles. ‘Features of Judaism for careers when looking after Jewish patients’, Palliative Medicine, 1991, Vol. 5,pp. 201-205
- Feinstein, M, Responsa: Iggrot Moshe. Hebrew MishpatPart II. No. 73: 1, in Rosner Fred. ‘Rabbi Moshe Feinstein on the Treatment of the Terminally ill’, Judaism. Vol. 37. No.21955. p191
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