11. Telling the truth about terminal cancer
Most persons want to know if they have terminal cancer, but less people are willing to tell family members this bad news. The attitudes towards truth-telling are changing in every society even now, as they have over the past few decades.
This chapter aims to introduce:
1. A typical case of a patient with terminal cancer.
2. Explain the ways that people become aware of their disease.
3. To apply ethical principles to answering the question of whether people have a right to know the truth.
11.1. A case of terminal cancer
Recently, cancer has been the leading cause of death in many developed countries. When facing terminal cancer, both family and health professionals are in a dilemma of whether to tell the truth to the patient or not. In clinical practice the issues include not only ‘whether' but ‘when', ‘how' and ‘how much' to tell patients about their diagnosis, treatment choices and possible prognosis. These questions have troubled clinical doctors very much especially when they try to follow the principle of ‘doing good‘ to their patients.
Most people agree dying patients have a right to be well informed and to practice their autonomy of making decision for themselves about the medical choice and other options at the end of life. Nevertheless; a value commitment toward openness has not been achieved in the general population. A common reason for hiding the truth is the intention to protect dying persons from being harmed from knowing.
To balance doing good against a risk of doing harm, we need to clarify every consideration to make sure what is the real interest of a terminal cancer patient.
Case of Mr. G.
A mentally competent 70 year-old man Mr. G was diagnosed with invasive bilateral lung cancer with pleural effusion and bony metastasis a few days after he was sent to the hospital. The doctor gave the diagnosis and complete explanation to the patient's family and did not recommend giving operation since the disease is in late stage. He gave a prescription to try chemotherapy under the request of patient's family but did not expect it to work. According to the doctor, the survival time will be only 6- 12 months. Because of the insistence of family, the patient was kept unaware of his condition. The patient was a little bit nervous about his condition, while everyone in contact with him was warned not to disclose the information and to avoid any conversation concerning his condition…...
Q1: How would you feel if you were Mr. G?
11.2. Awareness of dying
In a hospital setting, we often experience four contexts of dying awareness by the patient with a life-threatening illness, as below:
Close awareness – nurses, doctors and family try to hide the truth and engage in conversations that avoid disclosure. They keep conversations to the minimum and steer away from talking about the future, especially when a patient is in a very advanced stage of cancer. Nevertheless, the patient may move to either suspicion awareness or to full awareness of their diagnosis at the latter stage.
Suspicion awareness – is a situation where patient begins to suspect the seriousness of their condition. The patient may attempt to confirm their suspicion by direct or indirect measure, such as sneaking a look at medical records, making direct requests of the staff or family, and inducing families and staff to adopt different strategies in response. As a result, the relationships between patient, staffs and their families are strained.
Mutual pretence – at a latter time, when staff, families and patient themselves all know the patient is dying, but choose to pretend that the patient is going to be all right. The dramas between them could last for a long time; as a consequence the patient will die without ever knowing the truth from family or staffs, although they may have full awareness of their condition.
Open awareness – open awareness results from when staff, families and patient know and choose to acknowledge in their actions that the patient is dying. This situation is by no means an easy one; however, it is an essential requisite to achieve patient's 'appropriate dying' expectation especially when their expectation is ambiguous and uncertain.
The exploration of four contexts of dying awareness gives much influence on people's approach to communication and interaction with dying persons. For our case, if hospital staff follow the request of Mr. G's family to hide the truth; Mr. G may constantly stay in close awareness before he dies, but more likely, he would move to either suspicion awareness or to full awareness of his diagnosis at the latter stage. Many ethical and social issues will then arise.
Q2. Would you like to know if you had terminal cancer? Would you tell your mother or father if they had terminal cancer?
9.3. What will happen if we continuously withhold the truth?
First, to be deceived into believing that he is all right, Mr. G will never have a chance to make choices about his medical treatment and care. Second, with limited conversations and interactions, Mr. G may feel he is being isolated or even being abandoned. He may have sensed his physical decline and felt distress of his disease but could not share the fears and anxieties with others. Third, it will be impossible for him to accomplish what he wills and his expectations before he dies. Finally, there will be a serious problem of faithfulness, which will challenge the relationship between health care professionals and patients. Mr. G. will probably either be suspicious or fully aware that people "lied" to him. He may choose to pretend he does not know in compliance with the family's wishes. He will have more distress from the kind intention of his family than if he had been told truthfully.
Q3. How would you feel if you learnt on the last day of your life that your family had not been telling the truth about your disease to you?
Q4. If you only had a week to live, how would you like to spend that week?
9.4. Consequences of awareness (Pros and cons)
According to research, compared with people in close awareness, people dying in full awareness are more able to plan their dying process, so that they and their family are more satisfied with the choice over the place of death. They are less more likely to die alone, and are more likely to die in their own home with close relative around.
Pros: If death is certain in the near future, the quality of life (QOL) should be the most important concern for the dying. Awareness of dying enables life planning to proceed and offers an opportunity to control the manner and timing of death. With the full information, Mr. G can make his own choices about the source of care. He may judge cancer chemotherapy as futile to him and refuse any aggressive or life sustaining therapy, but accept palliative therapies to maintain his QOL and achieve an end of dying in dignity. Mr. G can try his best to accomplish his missions and wishes, arrange his end-stage of life and what happens to his body after death.
Cons: The negative consequences of telling the truth include that it is possible that telling the truth will destroy hope and lead to irreversible depression. After being told the truth, Mr. G may experience the emotions of shock and denial, Anger, Bargaining or Depression. He may probably need a lot of guidance, support and companionship before he can reach the stage of Acceptance. It could be a critical moment for him that his families insist not to take the risk to tell.
Some people believe requests for euthanasia and desire to die sooner are associated with the awareness of the truth. While in reality, the opposite is those dying patients aware of their condition are more likely to choose hospice care and are less likely to have asked for euthanasia. The key elements of the desire to die should be the level of suffering and dependency which would be managed properly by modern palliative medicine like hospice care. Overall, if we may agree that the benefits from telling the truth should rely on open discussion and rational decision making; discussing the possibility of euthanasia should never be regarded as the negative effect of telling the truth.
9.5. Prevalence of dying awareness
Nowadays, more people have an open attitude towards life and death. The preference for open awareness of dying is being established in modern medical settings and among the general population.
Awareness of dying enables the patient to have life planning following the principle of autonomy. However, the desirability of awareness of dying varies in different areas and different situations. In many traditional oriental cultures, more people prefer to stay unaware. They feel more secure to give the right of decision making to the traditional source of authority like doctors or families. The family has traditionally played a more primary role in making medical choices for terminal ill patients. However in modern western approaches, more people respect individual liberty. Patients have a right to make choices about their care.
Social class may also make differences, for the degree of engaging in planning their own dying varies. The physical realities are also a variable, with people with a condition of medical uncertainty or tending to have mental disturbance should consider very carefully the disclosure of the "truth". The "truth" is often a percentage risk, which most people cannot grasp the meaning of. Thus, at a practical level, we have to admit that it is not always possible for individuals to become aware of how soon they are expected to die.
Even when the mainstream value of many societies is to be honest to the patients, open awareness of dying is still hard to achieve in practice. However, to respect the principle of autonomy, both family and health professions would agree that a patient has a right to deny to know, as well as to demand the truth of their own condition.
9.6. The influence of end of life medicine on truth telling
To accomplish the goal of a more peaceful end of life, modern palliative medicine has established the hospice model where the medical team shifts the goal of medical management of terminal patients from combating the disease to controlling symptoms, and improving QOL. In a hospice, while the patient may be dying they are always important and will never be abandoned by the health care staffs and families. Hope, openness and honesty are the elements to reach the holding of peaceful dying process. Thus, to be aware of the condition is the basic requisite for the patients to receive hospice care, and a prior commitment to openness and honesty is essential for nurses and doctors to offer hopeful palliative care.
The biggest challenge for nurses and doctors facing palliative care is how to break bad news and not to devastate the patient. The skills of communication and interaction with dying persons are the most important for health staff in carrying out the doctrine of truth telling.
We should not doubt the justification of telling the truth to the terminal patient, however the efficacy of truth telling should be considered more carefully. Hesitating to tell the truth which disrupts the principle of autonomy will bring sorrow and regret for both family and patient. A careless telling may cause more damage, which is against the principle of do not harm and doing good. With a holistic and humanistic viewpoint, telling the truth will accomplish the mission of being fully informed. Effective communication, good relationships among dying, families and health care providers, and sufficient support will make truth telling be practical. We need to progress to a proper dying process in human society.
Q5. Try to write a living will or advance directive (a document which says how you would like to be treated when dying) of your medical preference for your terminal stage.
Q6. Do you think you can make plan to negotiate your dying process only if you are fully informed of your terminal condition?
Q7. After reading the above chapter, can you discuss the benefits verse risks to disclose the sad and bad news of an illness?
Q8. Is truth telling to the patient a cultural artifact? How about it in your culture?
Extra reading: An Introduction to Hospice Care
Hospice is a concept of care designed to provide comfort and support to patients and their families when a life limiting illness no longer responds to cure-oriented treatments. The first Hospice began in the early 1960's when a British physician, Dr. Cicely Saunders, created St. Christopher's Hospice near London. With special emphasis on pain management and other symptoms control, hospice care can reach the goal of peaceful end of life by offering comfort and dignity to the dying patient.
The hospice care is usually provided by a team of specially trained professionals like nurses, doctors, social workers, dietitian and religious priests/counselors. Volunteers and family members are also very important in hospice care. All the team members work together to provide physical, emotional, psychological and spiritual care to the dying patients and their families. Since hospice focuses on caring, not curing, hospice care service are usually provided in the patient's home or care facilities other than the acute hospital setting. One consequence of palliative medicine of hospice is a reduction in health care costs.
In general, a patient can only enter a hospice program if certified by a physician to have a limited life expectancy, usually six months or less. However, to respect patient's autonomy, health care professions will consent that the patient can resume traditional care at any time. Beside, an individual's needs must be continually assessed and treatment options should be explored and evaluated in the context of the individual's values and symptoms.
With all these descriptions of modern palliative medicine model of hospice, we may realize the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. To accord with this, it is obvious truth that to offer an ideal hospice care without a prior commitment to openness and honesty is not possible.
What services are provided by hospice care?
Manages the patient's pain and symptoms;
Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
Provides needed drugs, medical supplies, and equipment;
Coaches the family on how to care for the patient;
Delivers special services like speech and physical therapy when needed;
Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
Provides bereavement care and counseling to surviving family and friends.
Teacher Resources and Notes
See also the chapter on Euthanasia. Usually there is information available from local hospitals and oncology departments that may be useful for informing to students.
Four contexts of dying awareness of life-threatening illness were described by Glaser & Strauss (1965). Mr. G maybe experiences the emotions of shock and denial, Anger, Bargaining or Depression (Kuber Rose 1969).
While in the argument of possible benefits of withhold the truth, Mr. G may be assumed to be well- protected away from the shock of the bad news, if he does not have to confront his terminal condition directly. According to his background (age and generation), he might have no intention to actively participate in his treatments but depend on his children and medical authority to rescue him. To keep the very sick person away from the cruel truth may sometimes be doing good, but many studies suggest it more often causes distress to the person when they learn that they were not told the truth. The cultural differences could be explored in class.
The Eubios CD or website provides a news section on euthanasia, with a number of papers discussing the topic.
Glaser and Strauss. Awareness of Dying, Chicago: Aldine; 1965
Kubber-Ross, E. On death and dying. New York: The Macmillan Company 1969.
Seale, C., J. Addington-Hall, and M. McCarthy. 1997. "Awareness of dying: prevalence, causes and consequences." Soc Sci Med 45:477-84.