March/April 2014

Critical End-of-Life Communication

By Mary Beth Happ, PhD, RN, FGSA, FAAN
Today’s Geriatric Medicine
Vol. 7 No. 2 P. 22

Providers must help direct treatment decisions and facilitate patients’ and/or families’ choices via compassionate communication.

Comprehensive, timely, and person-centered communication may be the most important intervention geriatric practitioners provide to older adults and their family caregivers, particularly as patients with life-limiting illness approach transitions to end-of-life care. The need to improve patient-provider communication at the end of life is, in fact, the topic of several national initiatives, such as Geritalk, Oncotalk, and The Conversation Project. 

Although older patients with multiple chronic conditions often survive and thrive for years after episodic acute events, an untoward event or new diagnosis may present an opportunity to reevaluate goals of care. The difficult challenge for practitioners “in the context of drug discovery and improved life expectancies is a lack of clarity regarding disease progression”1 and thus recognition of end-stage illness. For many elderly and critically ill patients, practitioners may present a treatment plan that includes invasive and painful tests without fully explaining or considering what such tests may disclose or the treatment options the results may indicate.

The burdens of diagnostic procedures and complex treatment in end-stage illness may extend to appointment scheduling, transportation, side effects, additional medications, aftercare, recovery time, and out-of-pocket expenses. Therefore, it is important for practitioners to be judicious in treating older adults with end-stage disease when testing and procedures may be painful and even futile.

Key Exchange of Information
Geriatric practitioners, their patients, and family caregivers often face complicated diagnostic and treatment decisions. Information is essential for patient and family participation in care and decision making. However, illness knowledge also has been associated with poorer emotional quality of life in individuals with particular coping styles (eg, denial based),2 and information about end-of-life treatment decisions can be especially difficult for patients and families to accept and comprehend.

Preferences for information and shared decision making regarding life-sustaining treatments vary considerably among seriously ill patients and their family members who serve as decisional surrogates.3,4 Moreover, participation in decisions to discontinue or withdraw life-sustaining treatments can result in symptoms of anxiety, depression, posttraumatic stress disorder, and complicated grief in family members who serve as decisional surrogates, lasting several months to years after a patient’s death.5

How then should practitioners address decisional conversations when chronic disease processes become end stage or new illnesses emerge that signal the end of life? What approaches balance truth with hope and compassion?6 I suggest utilizing these precepts of gerontology and individualized care for frail elders to guide communication and decision making: know the person; engage in relational communication; provide for patient-family participation and choice; and ascertain the meaning behind words and behaviors.7

Know the Person
Time spent understanding a patient’s life story and his or her representational understanding of an illness can help the geriatric practitioner frame end-of-life care and treatment discussions in a way that acknowledges the person’s illness narrative, family context, and the meaning the illness has for the patient and family decisional partner(s). A patient’s biography can be used to help patients and families make sense of a shift from aggressive treatment to palliative and supportive care. For example, a critical care physician used war metaphors with a decorated World War II veteran to convey that although they had “won some battles,” they were not “winning the war” against his far advanced lung disease.

An elderly patient initially may favor an invasive diagnostic procedure (eg, surgical biopsy) when facing the uncertainty of a less definitive diagnosis (eg, a mass). However, the risks of infection, bleeding, pain, and immobility must be presented in conjunction with discussions of the potential benefits the diagnostic information would confer. The practitioner bears responsibility for considering whether a patient truly is a viable candidate for surgery, radiation, or chemotherapy and including this judgment in deliberations.

Knowing the person requires ascertaining what is important in the older adult’s life; what constitutes his or her daily living; and his or her perceptions of quality of life. Quality time spent engaged with grandchildren or experiencing a treasured family vacation may be more important to a devoted grandmother than the chance of prolonging her life by a few months spent in aggressive treatment that requires isolation from small children.

Knowing the person does not require hours of dialogue or reminiscence. Selective use of open-ended queries during history taking, systems review, and psychosocial assessment, rather than strict adherence to a yes/no electronic checklist, can accomplish this goal. As practitioners, we often feel that we control the relationship. Sharing relational control and letting the older person tell us is very useful. Astute geriatric practitioners employ observations of the patient’s environment (eg, a photograph, sweater, TV show) to connect to and learn something unique and potentially important about the patient.

Finally, knowing the person is essential to realize the palliative and hospice care goal of living well at the end of life. The compassionate geriatric practitioner will ascertain the patient’s view of living well and then coordinate care in ways that optimize wellness at the end of life.

Engage in Relational Communication
Relational communication builds trust with older people and their families, which is essential to facilitating stable treatment decisions. Unfortunately, end-of-life communication, diagnostic, and treatment decisions often occur in acute-critical care settings, such as emergency departments and ICUs, with practitioners who have little or no prior relationship with the patient and family. Patients and family caregivers are vulnerable in this context, placing them at a disadvantage in decision-making conversations.

Acute-critical illness produces stress and anxiety and can leave a patient without a voice (as in the case of respiratory tract intubation) and/or unable to participate in treatment choices, (eg, sedation, delirium, or other mental status changes). Nevertheless, good relational communication techniques can go a long way in building trust and facilitating positive decisional communication with patients and/or family surrogates. Communication techniques that apply to patients with communication impairments can be found in the sidebar below.

Simple communication tools such as notepads and pens, alphabet or picture-word boards, hearing aids or amplifiers, glasses or magnifiers, flashcards, and iPads can help patients respond to practitioners, initiate questions, and communicate essential messages.8,9 Speech language pathologists and translators can help assess communication function and plan communication strategies appropriate to facilitate crucial conversations.8

While the assistive communication tips listed above both are commonsense and common courtesy, I have observed and experienced countless instances in which these basic communication practices are not used and even are abused. My mother, sisters, and I gently and persistently remind and coach practitioners about how to speak to my 88-year-old hearing-impaired father, who is cognitively intact and competent to make his own decisions. Although he wears hearing aids, my father misses words spoken in low or soft tones, and sounds run together or become garbled when speech is too rapid. When practitioners drop their voices at the end of a sentence, turn away as they speak, or talk several steps away from him, my father can miss or misinterpret the message.

Most often, practitioners acknowledge our communication advice, accommodate briefly, and then return to their usual pattern of speaking. My father’s condition is not unique; rather, it is emblematic of older people with hearing and other sensory impairments. Recently, he was unexpectedly diagnosed with a pancreatic mass highly suggestive of malignancy. An emergency department physician abruptly imparted the news to my mother, sister, and me without preamble, standing at the foot of my father’s bed. We suddenly were grateful for his hearing impairment.
Relational communication involves everyone: the older person, family, and even friends. While practitioners are instructed to be pragmatic and identify a family spokesperson, a primary support person, and decision-making surrogate, in truth, we all personally know that family networks often are extensive, and decision making may involve a network of people close to the older person, unknown or unseen by the practitioner.10 To avoid misunderstandings and plan decision-making conversations that are most useful for the older person, simply ask the patient who else is involved in decisions.

Relational continuity with the patient and family at the end of life can be achieved by a home visit or a phone call from geriatric care providers to assuage feelings of abandonment or confusion about whether there is something missed or a treatment has not been done. Strategies to maintain hope include emphasizing what can be done (eg, controlling symptoms, maintaining function, offering favorite foods, fulfilling desired outings), exploring realistic goals, and focusing on the present day-to-day routine.10

Provide for Participation and Choice
Many authors suggest practitioners should determine how active the patient and family decisional surrogate(s) want to be in treatment decision making.3,4 Even in fast-paced acute-critical care settings, not all decisions need to be determined quickly. Call a time out, slow down, and allow for careful consideration, information processing, discussion, and acceptance; then the presentation and delivery of information become most important. The table below lists essential communication skills and examples to elicit patient and family participation and choice in establishing goals of care and treatment decisions, particularly in end-of-life care.

Timing of information delivery also is important. Older individuals are not immune from the effects of information overload, and this is no more evident than during end-of-life care, treatment decision making, and care planning. Health care communication experts agree that patients “want to negotiate when and how information is given, but don’t want a greater amount of detail than they are ready to hear.”6 Patients and families want the geriatric practitioner to be open to discussing dying, but do not want to be pushed to talk about it before they are ready.11 Brochures and information packets that detail dying processes and what to expect should be used judiciously with appropriate timing and support.

All Behavior Has Meaning
When older people and their families seem anxious, indecisive, resistant, or want more information or second opinions, practitioners often assume that they are difficult or they “just don’t get it.” In such situations, repeating information usually doesn’t work. Factors that may affect information receipt and processing among older adults and their family caregivers include health literacy, cultural beliefs or influences, preferences for information or decisional participation, and past experiences with serious illness. Ascertaining the meaning behind the behavior is key and may require pulling it all together (knowing the patient, relational communication [listening], and providing opportunities for patient-family choice).

Patients or family members may respond with negative emotion, which is natural. Evidence suggests that the most effective responses to patient expressions of negative emotion are neutral acknowledgments (“Yeah,” “I see”); statements explicitly focused on the emotion, such as empathic comments (“I’m sorry,” “That’s so hard”); or naming the emotion (“You seem really frustrated”).12 These responses serve to encourage further discussion of emotion.12

Final Thoughts
Like me, all practitioners are family members, many with older parents who do or will require support during critical and complex illness and eventually at the end of life. Overall, my parents have been fortunate to have a cadre of community-based physicians, both primary care and specialists, who do know the person and engage in compassionate, relational communication that is truthful while maintaining hope through reassurance and a focus on the present. These practitioners have guided decision-making conversations and person-centered choices in a stepwise fashion toward a path that is most reasonable and least invasive to optimize comfort and quality of life.

The road still is rough and not one that my family is eager to travel, but each encounter with a practitioner who employs good relational communication helps us endure.

— Mary Beth Happ, PhD, RN, FGSA, FAAN, is a dean’s distinguished professor and the director of the Center of Excellence in Critical and Complex Care and the Hartford Center of Geriatric Nursing Excellence at The Ohio State University College of Nursing in Columbus.

Relational Communication Techniques With Communication-Impaired Patients9
• Maintain sustained eye contact; face the patient.

• Use slow, clear speech.

• Pause for 5 to 10 seconds to wait for responses.

• Augment spoken messages by writing key words, gestures, diagrams, or pictures.

• Validate or clarify understanding of the message.

Core Communication Skills6

References
1. Broom A, Kirby E, Good P, Wootton J, Adams J. The troubles of telling: managing communication about the end of life. Qual Health Res. 2014;24(2):151-162.

2. Jackson JL, Emery CF. Illness knowledge moderates the influence of coping style on quality of life among women with congestive heart failure. Heart Lung. 2011;40(2):122-129.

3. Johnson SK, Bautista CA, Hong SY, Weissfeld L, White DB. An empirical study of surrogates’ preferred level of control over value-laden life support decisions in intensive care units. Am J Respir Crit Care Med. 2011;183(7):915-921.

4. Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care. 2010;16(9):688-696.

5. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-346.

6. Back AL, Anderson WG, Bunch L, et al. Communication about cancer near the end of life. Cancer. 2008;113(7 Suppl):1897-1910.

7. Happ MB, Williams CC, Strumpf NE, Burger SG. Individualized care for frail elders: theory and practice. J Gerontol Nurs. 1996;22(3):6-14.

8. Radtke JV, Baumann BM, Garrett KL, Happ MB. Listening to the voiceless patient: case reports in assisted communication in the intensive care unit. J Palliat Med. 2011;14(6):791-795.

9. Garrett KL, Happ MB, Costello J, Fried-Oken M. AAC in intensive care units. In Beukelman DR, Garrett KL, Yorkston KM (eds). Augmentative Communication Strategies for Adults With Acute or Chronic Medical Conditions. Baltimore, MD: Brookes; 2007.

10. Lingler JH, Sherwood PR, Crighton MH, Song MK, Happ MB. Conceptual challenges in the study of caregiver-care recipient relationships.. 2008;57(5):367-372.

11. Clayton JM, Butow PN, Arnold RM, Tattersall MH. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer. 2005;103(9):1965-1975.

12. Adams K, Cimino JE, Arnold RM, Anderson WG. Why should I talk about emotion? Communication patterns associated with physician discussion of patient expressions of negative emotion in hospital admission encounters. Patient Educ Couns. 2012;89(1):44-50.