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Challenges and opportunities: communication near the end of life.

John Gunther's 1949 memoir Death Be Not Proud describes his and his wife's efforts to keep hope alive for their son who was diagnosed with a malignant brain tumor. Not talking about the seriousness of their son's illness was thought to be a good thing. Upon reflection, however, Frances Gunther stated:
   It was only after his death,
   from his brief simple diaries ...
   that we learned he had known
   all along how grave was his illness,
   and that even as we had
   gaily pretended with him that
   all was well and he was completely
   recovering, he was pretending
   with us, and bearing
   our burden with the spirit of a
   singing soldier or a laughing
   saint (p.189).


Today, more than 50 years after Gunther's moving words, the practice of avoiding discussion of terminal illness and impending death still occurs. As the patient and family members struggle to cope with terminal illness, most of them will attempt to maintain a sense of cheerfulness and normalcy throughout the treatment phase. However, it is important to acknowledge that having a terminal illness is not easy and it does not create cheerfulness. Because cultural and ethnic differences can complicate the communication process further, nurses should recognize that communication with each patient and family is a unique experience. Evidence suggests that the terminally ill and dying patient desires open, honest communication with others (Barclay, Blackhall, & Tulsky, 2007). Several basic attitudes and behaviors can assist a nurse when communicating with the patient who is terminally ill and the patient's family. Openness, honesty, and understanding are foundations to this communication; thoughtful communication is based on awareness that life does not last forever and the end is drawing near.

Care on the Medical-Surgical Unit

One of the most important elements of end-of-life care from the perspectives of the patient and family members is honest communication (Heyland et al., 2006). Traditionally, nurses have viewed communication with dying patients and families as the purview of physicians. Additionally, speaking about dying to those who are near death is challenging for even the most talented and experienced nurse.

Many challenges on a busy medical-surgical unit create barriers for adequate or effective communication with a patient diagnosed with a life-threatening illness. Diagnostic studies typically are conducted daily in the setting. Findings indicating a terminal illness or poor prognosis are communicated to a patient by the physician, not the nurse. Barriers to patient-nurse communication begin when the nurse is unaware of what has been communicated to the patient and/or family by the physician. Misunderstandings and miscommunication between and among clinicians can complicate sensitive situations and frustrate patients and family members (Schirm & Sheehan, 2005). A common myth is that discussing dying and death will diminish the patient's hope (Knauft, Nielsen, Engelberg, Patrick, & Curtis, 2005). (see Table 1).

Because needs of the dying patient often involve emotional issues that the medical-surgical nurse cannot "fix," avoidance can become the nurse's mode of operation and communication. Research indicates that nurses generally have a high level of apprehension in caring for dying patients (Weigel, Parker, Fanning, Reyna, & Gasbarra, 2007). This apprehension, together with potential lack of experience in practical communication approaches and techniques, can lead the nurse to feel at a loss for words. In addition to not knowing what to say, the nurse may experience the added burden of balancing what the doctor has told the patient with the reality that death appears imminent.

On a busy medical-surgical unit, the nurse may find it difficult to round with each physician visiting each patient. However, to stay abreast of information being shared between physicians and patients, nurses should consider the act of rounding with physicians as an invaluable tool for communication and patient advocacy. When this is not possible, other strategies can be used. Briefly reviewing daily progress notes helps the nurse gain information about what has been discussed with the patient and/or family members. Another way to open the lines of communication is to state to the patient, "I noticed the doctor was speaking with you. Do you have any questions about your discussion?" Such an approach usually is more effective than directly asking, "What exactly did the cardiologist tell you?" Because the patient and family may be trying to decipher the physician's comments, asking that question may place additional stress on them (Penson, Kyriakou, Zuckerman, Chabna, & Lynch, 2006).

Not knowing what the primary physician and other health care providers have communicated to a patient or family member can place the nurse in an awkward position. Unclear communication can lead to frustration on the part of the patient and family as well as the nurse. Family members often approach the nurse to ask what they should do, as the following case illustrates.

Mr. A., who has advanced pancreatic cancer, is experiencing distressing persistent ascites, dyspnea, and pain. His daughter and his wife have been his major care takers. The daughter asks the physician for his opinion of his father's condition, and the doctor responds, "Your father's condition is terminal and no treatment will cure his condition. Something might be done to prolong his life, but nothing will fix him."

When the patient's nurse enters the room several minutes after the physician has left, his daughter asks, "The doctor just said there's nothing left to do for my father. What should we do?" Family members often are not asking about specific steps to take as much as indicating an overwhelming need for more information and support. In this case, the nurse was not present during the physician's visit; lack of awareness of the physician's actual communication places the nurse at risk of contributing to the patient and family members' frustration and anxiety. To be supportive, the nurse may ask, "What is your understanding of what the doctor just told you?" In this situation, the daughter may state, "The doctor just said that my dad is going to die and there is nothing you or the doctors can do for him." The nurse may consider this response, "I don't know exactly what the physician told you, but it would be helpful to know what your father's wishes are so that we can provide him the care that he desires. We will not abandon your father, and we will be available to all of you."

When the patient or family members ask, "What should we do?" or "What would you do?" the nurse should be cautious in giving advice. The nurse should focus on support and clarification of issues important to the patient and family.

An important approach that helps to open communication is for the nurse to actively seek the patient's perspective about his or her clinical condition. It is very important that the nurse refrain from making assumptions about what the patient or family members know (Mauk, 2003); several ways to inquire gently about what is known are presented in Table 2.

In the context of care for patients with life-threatening or terminal illness, the general rule is to listen more and talk less (Mauk, 2003). If a terminally ill patient is unable to make personal wishes or thoughts known, the nurse may consider asking the family, "What do you think your morn would say if asked what she would want at this time? What would be important to her?" Both the patient with life-threatening illness and his or her family members have reason for concern when they hear statements such as, "There is nothing left for us to do," or "There are no more treatments that will help your condition," or "We have reached the end of our abilities to help you." Such comments and others like them should be avoided because they communicate abandonment and a sense that health care professionals have nothing more to offer (Ngo-Metzger, August, Srinivasan, Liao, & Meyskens, 2008).

The patient and family members may feel alone in their efforts to gather information and grapple with insurance coverage as well as advanced or terminal illness (Penson et al., 2006). In the case of Mr. A., the nurse can comment further, "We need to know what your father's wishes are so his care can be guided by his wishes." In some cases, the patient may have let family members know his or her wishes, either verbally or in writing, and most family members are eager to honor their loved one's wishes.

Nurse's Role after Discouraging News

Physicians traditionally provide findings of diagnostic studies and poor prognoses. Hearing discouraging news can be overwhelming for the patient and family members. Nurses commonly are present after the sharing of difficult information, as in the following case.

Mrs. B. recently had surgery to remove a segment of her colon for treatment of adenocarcinoma. Mrs. B. was discharged from the hospital several weeks ago, weak and thin but in good spirits and expecting to make a "complete recovery." Readmitted because of progressive disease, she is now quite short of breath and in pain. As the nurse enters her room, the patient's husband says, "She is in a lot of pain. They told us there's not much the doctors can do. We thought she was going to get better."

To keep communication open and gain greater insight into the patient and family's perspective, the nurse should be aware that the statement, "There's not much the doctors can do," is often perceived by the patient and family members as the beginning of abandonment (Ngo-Metzger et al., 2008). In this clinical scenario, the nurse should make liberal use of several communication tools: acknowledging feelings, seeking clarification with an open-ended question, and using silence with active listening (Perrin, 2001). The nurse may consider saying, "This must be very hard for you and Mrs. B., What is your understanding of her condition?" Silence communicates empathy and a willingness to stay engaged; it allows a person to listen to the answers, paying attention to language content, emotional content, and nonverbal communication (Mauk, 2003). To foster more open communication, the nurse would listen and may respond, "Do you have any questions about what the doctors have told you?" Suggesting that the patient and family members write down questions or issues for future discussions is helpful (Perrin, 2001).

The patient and family members often ask in the same way, "Why is this happening?" Because honesty in communication is an invaluable principle, it may be appropriate for the nurse to say, "I don't know. I wish I had an answer, but I don't for why you are ill." Communication near the end of life should be based on several principles (see Table 3).

Dealing with fears and uncertainties is a challenge for the individual living with advanced disease and his or her family. One particular uncertainty is prognosis of a terminal condition. The patient and family members long for a prognosis, but the science of prognosis is not precise enough to allow physicians to know what will happen and when it will happen to a particular individual, regardless of the seriousness of the disease (Lorenz et al., 2008). The patient may hear many different versions of prognosis from a variety of health care professionals, fueling confusion and anxiety. Rather than an exact trajectory of life span, the patient and family most often want to know what is going to happen to them and how they will handle it. Helping the patient and family understand what they are told is an important role for nurses. Whether the nurse is clarifying a medical diagnosis or answering a concerned question such as, "What will happen to me?" he or she should cultivate gentle, genuine honesty. A possible response may be, "No one really knows what will happen in your particular situation. As time goes by, we will continue to reassess the situation and determine interventions for your comfort. We will strive to be honest and open with you despite the distress it may cause."

The patient's acceptance of the prognosis may not be a priority goal when considering a change from aggressive, curative to palliative/comfort care. In Gauthier's study (2005), persons living with terminal illness experienced a day-to-day existence on a continuum ranging from an awareness of the terminal illness to full acceptance of "terminality." Upon hearing of a 3-month prognosis, one person immediately may accept the incurability of the condition, and opt for palliative treatment and hospice care. However, the patient also may choose aggressive pneumonia treatment in the ICU in order to be alive for her daughter's wedding in 2 weeks. Acceptance of the reality of a terminal disease is an ongoing dynamic process, which becomes static for a patient and family only at the moment of death.

Family members are often starved for up-to-date details about the health of their loved ones. The following example (Penson et al., 2006) illustrates a common problem patients and family members experience in trying to get information.

A family member states, "I know more about how my dog is doing than how my dad is doing in the hospital." Penson et al. (2006) wrote:
   One of my patients recently
   told me, "My dog was recently
   admitted to a veterinary hospital
   and I can't tell you how
   different the experience was
   from when my dad was admitted
   to the hospital. The vet
   called me every single day and
   told me how my dog was
   doing and what the plan was
   for the day. When my father
   was admitted to the hospital,
   the doctors only spoke to us
   during their 'rounds.' It was
   very difficult to get information"
   (p. 522).


The nurse can assist as an advocate in filling in the information gaps, deciphering medical terms, and proactively giving information about how the hospital network works. The nurse can counsel the patient and family members on methods for effective communication with physicians. For example, the simple act of writing key questions or concerns should be stressed to the patient and family members. The nurse can reassure the patient that he or she is available to provide explanations or listen to concerns (Perrin, 2001).

The Hospice Referral

A nurse caring for a patient with advanced disease may hear statements such as, "I can't stand the thought of another procedure or surgery. Do you think we should call hospice?" The nurse then may suggest a discussion with the physician. However, if discussions about goals of care have not occurred and the physician's actions are directed at cure while the patient and family seek comfort, the hospice referral often will be delayed (Penson et al., 2006).

Many health care professionals see the actions directed toward cure and those directed toward comfort as different and separate. However, families should not have to choose between care that comforts and care that cures (Penson et al., 2006). The nurse has a unique opportunity to communicate confidently with the patient regarding available hospice or other palliative services if the patient and family members request it and physicians are not willing to begin the discussion.

Discussion of Resuscitation

Discussions about interventions and treatments are essential in end-of-life communication (Barclay et al., 2007). Advance directives could serve as a useful guide; however, less than 25% of the general population is believed to have such a document (Gerald et al., 2000; Kemp, Emmons, & Hayes, 2004). The nurse on a medical-surgical unit often is present during discussions about levels of care, including the use of a Do Not Resuscitate procedure.

In one clinical scenario, a physician may tell a patient, "Your cancer is growing despite the latest round of chemotherapy. I do not recommend the use of breathing machines or other artificial means to prolong your life. I do recommend a variety of interventions to help you remain comfortable and be as active as possible. I will visit later to discuss this more."

In this scenario, the nurse remains after the physician has left the room. The patient and family members appear dazed. The nurse may consider a period of silence. Responding too quickly with the wish to be supportive and instill hope, the nurse may begin and virtually end communication with a statement such as, "Don't give up. I have seen similar cases turn out just fine." Another temptation is to offer advice such as, "This is very serious and you should seek a second opinion." A better approach for the nurse to consider is to rely on the words, thoughts, and emotions of the patient and family members. Discovering those thoughts can be done by asking one of the gentle, probing questions, "Can you tell me in your own words what you understood the doctor to say?" or "This must be hard for you." The key then is to listen.

The nurse may be asked the question, "What would you do?" This question may not translate literally to a desire to get instructions. However, the question, "What would you do?" may serve a useful psychological need to deflect this daunting experience onto someone else for a brief moment. It may be communicating the need to share loss, grief, and suffering briefly. "What would you do?" takes the focus away from profound emotional feelings that may be causing a great deal of pain. The nurse may offer reflection in statements such as, "This must be a difficult experience for you" or "What are your greatest fears or concerns now?" The nurse should not only restate the doctor's comments. An unassuming approach toward giving the patient and family options for care may be useful: "Some patients with an illness such as yours come to the point where they decide they do not want to have any further tests, procedures, or hospitalizations, or they only want certain procedures. They find that what is important is to be comfortable and at home. Other patients are not ready for that; they still want everything possible done to maximize their time. How do you feel about these two approaches?"

Communicating to the Very End

The nurse communicates caring through a basic commitment to quality personal care. After death, by preparing the body and attempting to create a peaceful environment for the family, the nurse demonstrates an acceptance of death and respect for the family and the deceased. If the family was not present when death occurred, family members may want a description of the patient's last moments. Statements such as, "She was not alone," or "He seemed to be at peace and comfortable," can provide lasting comfort to the family (Perrin, 2001).

In addition to silence and presence, other suggested messages for the nurse at the time of death include, "I'm sorry for your loss," or "I'll keep you in my thoughts and prayers." Health care professionals should avoid the statements listed in Table 4.

Conclusion

While the nurse works on developing communication skills with the dying patient and his or her family, the goal should be to build an understanding of the patient and family's needs and goals. Communication helps to reach a consensus about the care path, and each patient and family will have a different path to follow. The care path of a terminally ill patient may include limited trials of certain treatments, or it may begin with a move to hospice or palliative care. It might involve fighting until the last breath, remaining alive until the last possible second using the latest medical technology. Communication efforts should always consider the values, attitudes, and goals of the patient and family.

For a few gifted persons, good communication skills are inherent. More often, individuals are unaware of the tacit rules of communication. When practicing some of the suggested approaches to communication, a nurse should use his or her own natural approach and style. New communication approaches should be adopted only if they seem to fit sincerely and naturally. Research into optimal professional behaviors and communication strategies is ongoing (Ngo-Metzger et al., 2008).

Prominent hospice physician Ira Byock (1997) described the profound and foundational focus of communicating with both words and actions for the patient who is near life's end:
   We will keep you warm and we
   will keep you dry. We will keep
   you clean. We will help you
   with elimination and your
   bowels and bladder function.
   We will always offer you food
   and fluid. We will be with you.
   We will bear witness to your
   pain and your sorrows, your
   disappointments and your triumphs;
   we will listen to your
   stories of your life and remember
   the story of your passing
   (p. 247).


References

Barclay, J.S., Blackhall, L.J., & Tulsky, J.A. (2007). Communication strategies and cultural issues in the delivery of bad news. Journal of Palliative Medicine, 10(1), 958-977.

Byock, I. (1997). Dying well: Peace and possibilities at the end of life. New York: Riverhead Books.

Gauthier, D.M. (2005). Decision-making near the end of life. Journal of Hospice and Palliative Nursing, 7(2), 82-90.

Gerald, L.B., Sanderson, B., Fish, L., Li, Y, Bittner, V., Brooks, C.M., et al. (2000). Advance directives in cardiac and pulmonary rehabilitation patients. Journal of Cardiopulmonary Rehabilitation, 20, 340-345.

Gunther, J. (1949). Death be not proud. New York: Harper Collins.

Heyland, D.K., Dodek, P., Rocker, G., Groll, D., Gafni, A., Pichora, D., et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 174(5).

Kemp, K.R., Emmons, E., & Hayes, J. (2004). Advance directives and do-not-resuscitate orders on general medical wards versus the intensive care unit. Military Medicine, 16, 433-436.

Knauft, E., Nielsen, E.L., Engelberg, R.A., Patrick, D.L., & Curtis, J.R. (2005). Barriers and facilitators to end-of-life care communication for patients with COPD. Chest, 127, 2188-2196.

Kristjanson, L.J. (2001). Establishing goals: Communication traps and treatment lane changes. In B.R Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (pp. 331-338). New York: Oxford University Press.

Lorenz, K.A., Lynn, J., Dy, S.M., Shugarman, L.R., Wilkinson, A., Mularski, R.A., et al. (2008). Clinical guidelines. Evidence for improving palliative care at the end of life: A systematic review. Annals of Internal Medicine, 148(2), 147-159.

Mauk, J. (2003). Communication at the end of life. In W.B. Forman, J.A. Kitzes, R.P. Anderson, & D.K. Sheehan (Eds.), Hospice and palliative care concepts and practice (pp. 67-85). Sudbury, MA: Jones & Bartlett.

Ngo-Metzger, Q., August, K.J., Srinivasan, M., Liao, S., & Meyskens, F.L. (2008). End-of-life care: Guidelines for patient-centered communication. American Family Physician, 77(2), 167-174.

Penson, R.T., Kyriakou, H., Zuckerman, D., Chabna, B.A., & Lynch, T.J. (2006). Teams: Communication in multidisciplinary care [Electronic version]. The Oncologist, 11, 520-526.

Perrin, K.O. (2001). Communicating with seriously ill and dying patients, their families and their health care providers. In M.L Matzo & D.W. Sherman, (Eds.), Palliative nursing: Quality care to the end of life (pp. 219-244). New York: Springer.

Schirm, V., & Sheehan, D. (2005). Conversations about choices for end of life care: Knowing and understanding preferences. Journal of Hospice and Palliative Nursing, 7(2), 91-97.

Weigel, C., Parker, G., Fanning, L., Reyna, K., & Gasbarra, D.B. (2007). Apprehension among hospital nurses providing end-of-life care. Journal of Hospice and Palliative Nursing, 9(2), 86-91.

Donna M. Gauthier, PhD, RN, is an Assistant Professor, College of Nursing and Allied Health Professions, University of Louisiana at Lafayette, Lafayette, LA. She serves locally on the Compassionate Care Coalition, an organization with a mission to advance quality end-of-life care; and is a member of The Hospice and Palliative Nurses Association.

Note: The author and all MEDSURG Nursing Editorial Board members reported no actual or potential conflict of interest in relation to this continuing nursing education article.
Table 1.
Common Myths: Communication About Dying

Dying patients and family member only want to talk about positive
things.

Asking patients questions about dying will remove all hope.

Patients and family members don't want you to ask questions about
dying and loss.

When a patient is dying, there is little health care professionals
have to offer.

Sources: Knauft et al., 2005; Kristjanson, 2001.

Table 2.
Gentle, Probing Questions

Tell me what the doctors have told you about your condition.

How do you see things going?

What do you see for the future?

Does the information given to you surprise you?

Do you have any questions about what the doctor has told you?

Sources: Barclay et al., 2007; Mauk, 2003; Perrin, 2001.

Table 3.
Principles to Guide Communication Near the End of Life

Be honest and truthful.

Ask about patient values and goals.

Help explore options within the context of their values and goals.
Encourage questions.

Ask yourself. "What would I do if this was me or my family member?"

Take time to listen.

Sources: Barclay et al., 2007; Mauk, 2003; Ngo-Metzger et al., 2008.

Table 4.
Non-Therapeutic Statements

She/He is better off now.

I know just how you feel.

You don't need to worry.

Everything will be all right.

It could have been worse.

Let me tell you what happened to me.

Source: Perrin, 2001.
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Title Annotation:CNE SERIES
Author:Gauthier, Donna M.
Publication:MedSurg Nursing
Article Type:Report
Geographic Code:1USA
Date:Oct 1, 2008
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