One thing that I noticed stressed in the sources I found was that a
physician should always know exactly what the patients' illness is and
treatment options. If you've ever been given bad news or been around when
someone is receiving bad news, you may notice the doctor glancing at the
patient's chart. In medical schools, they teach that this is the worst
thing you can do when giving bad news because it gives the patient the
impression that you didn't even care enough to find out what they're dying
from. Also, reading off of a chart increases the chances that you will
use medical terms and it creates a barrier between you and the patient
so you can't fully gauge their reactions.
Throughout the meeting, you should ask the patient if they have any
questions and if they understand what you're telling them. Also, medical
school professors warn students that they should not let their feelings
be known during the meeting. Doctors often say they feel guilty, helpless,
fearful (of being sued), even agitated when they have to give bad news.
These feelings should be dealt with before the meeting and should never
enter into the conversation with the patient.
-Physician or designee
-Nurse/Social Services/Chaplain help educate and support
2) What is the method for telling a patient bad news?
-Physician tells patient what they have tested, results, treatment
-Patient denial vs. Communication of physician
-Nurse puts information into perspective on knowledge basis of patient
-Patient retains only 10% of what they hear
3) How long is the time period from onset of knowledge of disease to actual disclosure?
-Immediately after results have been confirmed
-Patient can't be kept in the dark
4) Are family members forewarned?
-If patient is in surgery then most likely physician will inform family first
-If patient is in clinic setting then recommended patient and family be informed
5) What is the best scenario for telling the patient (in hospital room, alone, in office...)?
-No best place, environment is limited
-Usually with patient one-on-one or with family members present
-Treat patient how you would want to be treated, okay to cry
6) How does the average patient generally react?
-No patient is "average"
-Depends on what your life has been like up to knowledge of bad news
-Examples: country boy, sing around bed, child with AIDS, shut out family
7) What if the family doesn't wish for the patient to know the bad news?
-Patient has right to know what health status is
-Recommended that unit of care (patient and family) know diagnosis
-You know when you are sick...(example of cancer patient)
-Physician difficulty in dealing with dying patient
8) What happens if the patient refuses to know the circumstances of their condition or the patient refuses to believe the medical professional's diagnosis/options of treatment?
-Patient denial ... eventually patient will come back when really sick
-Depends on relationship among patient-family-physician
-Usually everybody just wants to get better and go home
A. Patient autonomy is held in high regard in the US, but the American way of
sharing a negative prognosis with a patient may be considered strange, even
shocking to people of other cultures.
B. Italy- patients are protected from bad news by the family and physicians.
Autonomy is viewed as isolating and burdensome to patients.
C. Japan-it is considered inappropriate clinical behavior to disclose diagnosis and
prognosis and involve the patient in decision-making.
II. Leslie J. Blackhall MD (an ethicist and medical director at Assisted Home Hospice
in Los Angeles.)
-Recently published a paper in The Journal of the American Medical Association
comparing the attitudes on patient autonomy and end-of-life decision-making.
-4 groups studied with 800 participants in each group.
A. 47% of Korean Americans believed that a patient with cancer should be told
the truth about the diagnosis.
B. 65% of Mexican Americans wanted to also hear the news.
C. 90% of African Americans and whites wanted to hear the news.
*The Korean and Mexican Americans also believed more strongly that family
members should be the primary decision-makers when it comes to treating a
During a workshop on medicological issues, the risk manager noted that it was not the responsibility of the phlebotomist to inform the patient of the tests to be performed on the samples they obtained. This view was contradictory to the basic belief of the supervisor.
Surely the institution could not sanction lying to patients. If direct questions were posed by the patients, they had a right to a response if the care giver had the information. Providing no response, referring the question, or lying were all unprofessional and unethical in Ms. Jackson's mind.
The experienced phlebotomy staff concurred with the risk manager that they did not always feel a responsibility to answer truthfully. They made judgments about the impact of their answers; depending upon how well they knew the patient, what other information the patient had, the patient's prognosis and service, they would temporize or even lie. It was not always in the patient's best interest to tell the truth. They suggested that Ms. Jackson spend a two-week period functioning as a staff phlebotomist so that she might gain an appreciation for this situation.
Following her staff's advice, Ms. Jackson scheduled herself for two weeks of morning rounds on the medical-surgical wing. She found the experience to be very rewarding as she enjoyed the interaction with the patients and other health professionals. For the first week and a half, she was not presented with any situation in which she was not able to be completely honest. However, that changed.
A 47-year-old male was admitted to her floor as a follow-up of surgery for colorectal cancer six months earlier. He informed her on the first day of his hospital stay that he was greatly concerned about a recurrence of the cancer. He was adamant in his belief that it was better to die then, while he was feeling relatively well, than to live another year and suffer. He stated that he would take his own life if he learned that there was more cancer present in his bowel.
One of the tests performed on admission was a caracoembryonic antigen (CEA). Because of the patient's intense commentary, Ms. Jackson looked through the laboratory results and learned that his CEA level was elevated, which presented strong evidence for residual cancer. On his second hospital day, further lab studies were ordered, which required Ms. Jackson to perform a venipuncture. At that time she was asked if all the preceding day's tests were normal.
Ms. Jackson was certain that this patient would attempt to end his life if he learned that he probably had cancer, yet she did not want to compromise her own integrity by not telling the truth. The consequences of either action were unpleasant for her. What was the best course to follow?
Julia Olson is a 68-year-old woman who has been diagnosed as having breast cancer. She is referred to the Radiation Therapy Technology Department of the local hospital for radiation after a lumpectomy of her right breast.
Sally Gray is the radiation therapist assigned to give Mrs. Olson her treatment. As a part of the treatment routine, it is the responsibility of the therapist to explain thoroughly all the aspects of the treatment to the patient. When Sally begins her explanation, Mrs. Olson indicates that she really doesn't want to hear a long explanation, she just wants to get the whole thing over with.
Two additional attempts by Sally result in the same outcome--that Mrs. Olsen doesn't want to hear a lot of explanation about something that she really doesn't understand. Given this situation, should Sally proceed to administer the radiation, or should she insist that Mrs. Olsen not waive her right to information?
According to Ida Sim, MD, a professor at Stanford University Medical School, there are three stages to giving bad news: before, while, and after giving bad news (www1). These stages are used in teaching medical school students how to give bad news.
In preparing for a meeting about bad news, consideration should be given to where the meeting will take place and where the physician will sit in relation to the patient. The physician should ensure that the area is quiet, comfortable, and void of interruption. According to Dr. Sim, a physician should sit close to the patient, at eye-level, and with no physical barriers between them (www1). This is a way of minimizing patients' feelings of isolation and loneliness. In a study where patients were asked how physical barriers made them feel, most patients agreed with Dr. Sim. One subject said, "Why do the doctors not talk to me? Why do they just stand at the bottom of my bed?"(www2). However, I. Lichter, feels that there are things besides physical barriers and space that create the separation between doctor and patient. "Those caring for the patient may unwittingly use techniques which keep him at an emotional distance- jollying the patient along, telling him there is no reason to be upset" (www2). On the other hand, how close a physician sits while giving bad news may be dictated by his relationship with the patient. For instance, if the patient has expressed a dislike for doctors, sitting close might make her feel uncomfortable. Another consideration is who will be present besides the patient. The physician may want to ensure that family or clergy are available to offer the patient support. In addition, an interpreter should be available if there is a language barrier.
Beforehand knowledge of the illness and treatment options is recommended. Many doctors have a habit of glancing at charts and test results when they aren't fully aware of the illness. This makes the physician look unprepared and insensitive to his patient's individuality. Also, reading increases the chances of using difficult medical terms as well as creates a physical barrier that prevents the gauging of a patient's reactions.
Watching a patient's reactions, in fact, is important to the second stage of giving bad news. Body language, extent of eye contact, or verbal responses can reveal if a patient is understanding and accepting what is said and what emotions she's experiencing. Impressively, some doctors say they can tell if a patient is having suicidal thoughts just from watching their body language and facial expressions. Thus, the value of being tuned into the patient's nonverbal and verbal cues is indisputable.
Speaking clearly with the least amount of medical jargon is a key ingredient to ensuring patient comprehension. It's also suggested that the physician prepare the patient for what is about to be said with a statement like, "I examined your tests results and as we suspected¼". The reason for this is that many patients will undergo a sort of "emotional meltdown" if presented with bad news too soon. Also this presents a good opportunity to ask the patient if she wants to know the prognosis and if so, how much of it. It has been found that 50-98.5% of people don't want full disclosure of their illness (www2). An important step on the "bad news staircase" is the provision of adequate time for the digestion of information (www2). Another step is asking, throughout the meeting, for questions.
Physicians are warned to be aware and in control of their feelings because these, no matter how profound, should not be revealed to the patient. At most, the physician should express feelings of sympathy. Other feelings such as guilt, helplessness, fear, and even agitation must be dealt with before the meeting so they do not enter into the conversation.
After the bad news has been given, the meeting should not be ended abruptly. If possible, the physician should provide pamphlets that may be read for better understanding. Also this time should be used to reaffirm the doctor-patient relationship. One way to do this is to schedule an appointment with the patient some time shortly after the meeting. The appointment should at the very least to reassure the physician that the patient processed the bad news. Finally, the patient should be allowed some time alone or with family members. In this way the physician doesn't rush the patient out of his office yet is still able to leave himself to attend to other patients.
The next section of the presentation outlined and explained 7 good reasons for telling the truth, 4 exceptions to disclosure and discussed a case study dealing with giving bad news to a patient. The information on the good reasons and on the exceptions were found in the text, Doing Right ( 67-79). The case study was found in the optional text, Case Studies In Allied Health Ethics (88-90).
There are 7 good reasons for telling the truth that were given in the text. One good reason is that the truth promotes the patients well-being. By telling the truth the bond of trust between the patient and the physician can be strengthened and patient participation in treatment increases. Telling the truth has been shown to increase the patient's compliance with treatment while reducing the morbidity of medical interventions. Another reason to tell the truth is that it furthers the patient's life choices. When the patient knows the truth, he/she can make decisions about his/her future. Also, a patient should be offered the opportunity to know about any evils that threaten him/her if the physician knows of any. Telling the truth also rules out a lot of uncertainty on the behalf of the patient, the patient's family and the physician. The third reason is that it emphasizes the importance of good communication skills. The way the information is given is just as important as the information given.
Another reason is that the truth shows respect for the patient. Disclosure is not done just for the benefit of the patient; the physician may be giving terrible news. It is done out of respect for the patient. The fifth reason to tell the truth is that it prevents the physician from having to lie to his/her patient. Lying undermines the bond of trust that the patient and physician have between each other. It also undermines the public's faith in the medical profession. If a physician lied to a patient and the public found out about it, fingers would not just be pointed at the particular physician, but the profession as a whole.
Telling the truth reduces the risk of harm to the patients. If the truth is not told to the patient about a particular condition, they may not seek the medical attention that they need when it is necessary. Doctors are liable to charges of negligence if the patient is injured and they are also liable if the patient makes a decision that would not have been made had he/she known what the physician knew. The seventh and final reason to tell the truth is that it reduces the physician's liability. Since mistakes are extremely common they do not constitute evidence of medical negligence. However, failure to disclose information may be evidence for medical negligence. Medical negligence is a finding made by the court, not by the individual.
There are 4 exceptions to disclosure discussed in Doing Right. The first exception is if a patient has a waiver. The patient tells the physician prior to the diagnosis that he/she does not want to know a particular piece of information. The patient may waive the right to know if he/she has cancer. The second exception to disclosure is if the patient is incapable of receiving the information. A patient may be too mentally unstable to understand the information or, in the case of a child, too young to understand. In that case, the family would be informed and would decide what course of action should be taken with the child.
The third exception to disclosure is in the case of a medical emergency. If a patients medical condition is so unstable that disclosure is considered unsafe or too time consuming then the information will be withheld. The example of a depressed man on a window ledge is given. The physicians are informed that his daughter has died in a car accident on the way to see him. They are going to withhold the information for fear that if they tell him, he will in fact kill himself. The fourth and final exception to disclosure is called therapeutic privilege. This is the physicians decision. If the physician believes that it is in the best interest of the patient not to now certain information, then they can take therapeutic privilege and withhold the information. This is sometimes done because the physician fears that the patient may do something rash or lose hope.
Next, we discussed a case study in which a medical technologist struggles with whether or not to tell the truth to a patient. Up to this point, she thought that lying, providing no response and referring questions that patients ask were all unprofessional and unethical practices. However, this case was different for her. The patient had spoken with her about his condition and told her that he would rather die while he was still healthy than to find out that his cancer had recurred and live another year.
She was faced with many ethical dilemmas. As stated before, she thought that lying, providing no response and referring questions were unprofessional and unethical. However, that was before she had the experience of dealing with patients one on one. She did not want to tell him that his cancer had most likely recurred because she felt that he would commit suicide if he found out. If he did kill himself, she might feel some guilt, thinking that had she not told him, he would not have died. She had to second guess her own moral beliefs.
The next section of our presentation deals with the right of autonomy in different cultures. The information obtained was derived from an article entitled, "Cultural Gaps Leave Patients Angry, Doctors Confused". This article was written by Cori Vanchieri and was found on the Internet on February 18, 1998 (www3).
It was found that patient autonomy is not regarded as such an important factor in other countries like in the United States. Telling patients about their sickness was found to be shocking and strange to those living in foreign countries. In Italy, for example, autonomy is considered a burden and very isolating to patients. In Japan, autonomy is considered to be inappropriate clinical behavior. It is not acceptable in Japan to disclose diagnosis, prognosis, and to involve the patient in decision-making. These two examples from both Italy and Japan show how the American way of believing in Autonomy is not the norm of the rest of the world.
Survey results were also published in the article. The survey involved four groups of Americans and their opinion about patient autonomy. Leslie J. Blackhall MD, an ethicist and medical director at Assisted Home Hospice in Los Angeles, conducted the survey. Each of the four groups had 800 participants. Of the Korean-American group, 47% of the 800 felt that a patient with cancer should be told the truth about the diagnosis. Of the Mexican-American group, 65% of the 800, also wanted to hear about the bad news. In the African-American group 90% wanted to hear the news as well. The same resulted from the White-American group, having 90% of the participants wanting to hear the diagnosis. It was also stated in the article that the Korean and Mexican American groups believed more strongly that family members should be the primary decision-makers in regards to treating the patient.
The significance of this section of the presentation is to inform future healthcare workers of the opinions and beliefs of people of other cultures than one's own. It is important to respect the wishes of other people, even if their wishes are different than your own. It is also safer in terms of the Law to be aware of a patient's cultural beliefs as well as their personal beliefs. For example, Dr. Perring told of a situation where a Chinese woman was vacationing in the United States and had to be taken to the hospital. The doctor, not knowing that Chinese people do not wish to be told of their illness, informed the patient of her newly found cancer. The Chinese woman and her husband were irate and decided to sue the doctor. As one can see, though autonomy is very important to those who believe in it, it is also important to those who don't. As a healthcare worker, it is crucial to be aware of the different needs of different people.
A case study about a woman who was diagnosed with breast cancer was read in our presentation. The dilemma came about when the doctor started to tell her patient of the treatments she was to receive. The patient refused to listen and just asked for the treatment to be started so that it could be over with. The doctor felt as if she needed to tell the patient because of some of the side affects that may come about. As a group, like the class, we decided that the doctor needs to tell someone about the treatments so that she is covered by the Law. Telling a family member may be the best option.
The last topic of the presentation concerning how to tell a patient bad news was the interview with Sandy Mathes, a hospice nurse at Central Baptist Hospital. There were several reasons why a hospice nurse was chosen rather than a physician. First of all, most physicians at CBH are extremely busy and scheduling an interview was virtually impossible. Secondly, Sandy has dealt with delivering bad news to patients most of her career life. Being a hospice nurse involves working with terminally ill patients. Not only does Sandy relate to the patients what the doctors may have already informed them of, but she also educates and supports them of their condition. There were several questions prepared for the interview in hope that the class would benefit from the acquired information concerning the delivery of bad news.
Question #1: Who is ultimately responsible for telling the patient bad news, and if the person responsible for telling the news doesn't, then who takes the initiative to do so? In response to this question, Sandy said that the ultimate responsibility is the physician or his/her designee (nurse or medical trainee). Rarely would the physician not be the one telling the patient bad news. Along with informing the patient of the bad news, other medical staff offer education and support. Nurses, such as Sandy herself, and social workers often help educate the patient in terms of understanding the condition that they are in. Chaplains help the patient by offering spiritual support.
Question #2: What is the method for telling the patient bad news? Often the doctor will inform the patient of what was found in response to any testing or diagnostic procedures. For instance, the physician may inform the patient that he or she has cancer of the colon and explore several treatment options available. The patient sometimes translates this into the idea that treatment will make it better. This is not always true, and is not always explained thorough enough by the physician. In this aspect, the physician thinks that he has informed the patient of the condition without realizing what the patient may have really derived from the conversation. This results in the problem of patient denial vs. communication of the physician. After the patient is allowed sufficient time to ingest the bad news (usually a day), a nurse or other social service worker will put things more in perspective for the patient. This way, the patient can better understand the implications of their condition. The nurse tries to start from where the patient is in terms of understanding, not where the physician is. It is extremely important in what the patients themselves know. In most cases, the patient will only retain about 10% of what the doctor has informed them. This is why the nurse or other helps to clarify the gap in communication.
Question #3: How long is the time period from the discovery of the bad news to the actual disclosure to the patient? The disclosure usually takes place as soon as the physician discovers any implication in the patient's health status. Patients cannot be kept in the dark. They have the right to know what is causing the disturbance of their health. In a hospital setting (surgery), the physician will deliver the bad news as soon as it is discovered. The family is usually informed as soon as surgery has taken place. In a clinic setting, the physician will inform the patient and any family members present during the office visit.
Question #4: Are family members forewarned? As stated before, the family members are usually the first ones to receive the bad news if the patient has been in surgery, unless otherwise requested by the patient. It is ultimately a rule of confidentiality between the patient and the doctor as to whether or not the family members will be forewarned. It is extremely recommended for the patient to have as much support as possible. Family and patient are thought of as part of a care unit, and acknowledged as the best means of a support system. Hence, it is recommended that the patient and family members be informed together.
Question #5: What is the best scenario for telling the patient the bad news (in a hospital room, alone, in office…)? The environment for telling a patient bad news is virtually non-existent. There is no good place, especially if it is the hospital. A patient who may be really sick cannot move out of his/her room without going to extreme measures. This is usually too much of a hassle and most family members would prefer to remain in the room. The best scenario would most likely be one-on-one or with other family members in the patient's room, or doctor's office (if in clinic setting). A patient should always be treated with respect and dignity, just as anyone else would prefer to be treated. It should also be known that it is okay to cry and release any emotions that the patient may be experiencing.
Question #6: How does the average patient generally react? First of all, there is no definition for an average patient. All patients are unique in their own way due to the different medical complications that afflict them. Depending on how a patient reacts involves how his/her life has been like up until the delivery of bad news. If someone has never had to deal with morbidity, then most likely denial will take place. There will not be a lot of talk about it and this patient may try to go on with life as if nothing different has happened. On the positive side, those who have dealt with morbidity and realize that they are mortal will respond in a more open-minded way. This patient will realize that it is inevitable for all of us to eventually die. The bad news is accepted and the patient will probably make the experience as positive as possible for everyone around them.
Question #7: What if the family members do not wish for the patient to know the bad news?
The patient has the right to know what his/her health status is. This influences what and how the patient is told even if the family requests otherwise. It is suggested that the unit of care (patient and family) to know the diagnosis. This is the best means for emotional support. Even if the family does not want the patient to know of their condition, the patient always seems to eventually find out. Most people know when they are sick regardless of what they are informed.
Question #8: What happens if the patient refuses to know the circumstances of his/her condition, or the patient refuses to believe the medical professional's diagnosis/options of treatment? This is known as patient denial. "I'm going home. I don't care what the doctor says. I'm just fine!" This is a common remark of a patient in denial. Eventually, the patient will come back for help when they get sick enough. Whether or not the patient accepts or rejects the diagnosis depends on the relationship among their own self identity, family members and the physician. If honesty is a part of all of the relationships, then there will most likely be an overall better response. If the patient doesn't tell the whole truth, fails to unveil symptoms or gives an incomplete history to the physician, then the total response is not so good. The relationships discussed are very important; however, most patients put their faith in their doctors. Everybody just wants to get better and go home.
The responses to the above questions were answered by Sandy Mathes, hospice nurse at Central Baptist Hospital. All that she conveyed through the interview was explained as thoroughly as possible. It was a great privilege to interview Sandy and hopefully gave the presentation a bit of reality (interviewed at CBH on 3-2-98 by Kelly Kincer).
Herbert, Philip C. Doing Right. Oxford University Press. Toronto, 1996. pp. 67-80.
Veatch, Robert M, Flack, Harley E. Case Studies in Allied Health Ethics. Prentice Hall, Upper Saddle River, NJ, 1997. pp.88-90, 95.