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‘I don't want to burden my family’: handling communication challenges in geriatric oncology
symposium article
Annals of Oncology 23 (Supplement 7): vii30–vii35, 2013 doi:10.1093/annonc/mdt263
‘I don’t want to burden my family’: handling communication challenges in geriatric oncology M. O. Delgado-Guay, M. G. De La Cruz & D. E. Epner* The University of Texas MD Anderson Cancer Center, Houston, TX, USA
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Oncologists often face difficult conversations with patients relating to prognosis, code status, transition to palliative care, and other sensitive topics [1, 2]. Emotions, such as anger, shock, denial, or sadness, run high during such conversations. Conflicts arise when patient and provider are unable to agree on goals and expectations [3, 4]. Despite the importance of outstanding communication skills, medical education emphasizes biomedical knowledge at the expense of relational skills. As a result, many doctors lack nuanced skills necessary to engage in challenging conversations effectively [5–7]. For instance, many doctors avoid delivering bad news because they claim doing so extinguishes hope and causes despair and depression in their patients, even though the opposite is true [5]. Many physicians view questions about prognosis as purely factual, numerical questions rather than as opportunities to explore patients’ goals and fears [5]. Listening to patients and responding to their emotions empathically also takes time, which is limited in clinical encounters. Discussions about the end of life are particularly challenging and time consuming. As a result, patients often lack critical information they need to make well-informed health care decisions at the end of life [8]. Many people think of good communication, or ‘bedside manner’, as a mysterious art form [9]. However, several studies, including a few randomized, controlled trials, show good communication comprises discrete skills that can be taught and learned [10–14]. Physicians who understand the importance of communication skills and are receptive to communication skills training are more likely to acquire those skills [15]. *Correspondence to: Dr. D. Epner, The University of Texas MD Anderson Cancer Center, 1400 Pressler, Unit 1414, Houston, TX 77030, USA. Tel: +1-713-563-1247; Fax: +1-713-7452437; E-mail: [email protected]
Patient-centered communication is a key approach to navigating emotional conversations and establishing healing, trusting relationships. Important skills include eliciting patients’ and families’ perspectives in an open-ended fashion, listening intently, and responding to emotions with empathy [16, 17]. Self-reflection also permits physicians to step back from a conversation with the patient and family and reflect on ‘meta’ issues such as how his or her own emotions might influence decision making for the patient [10, 18, 19]. Patient-centered communication enhances the patient–clinician relationship, greatly improves the quality of care, and reduces stress and burnout among providers [20]. In this article, we focus on issues that make conversations with geriatric oncology patients particularly challenging [21–23]. Care of geriatric patients typically involves complex medical, functional, and social barriers that impact the therapeutic plan. We will describe some of these barriers and then present a clinical vignette that illustrates a few common challenges and strategies for approaching them.
barriers to communication with geriatric oncology patients Geriatric patients, defined as those over 65, lose physiological reserve and functional capacity as a result of genetic and environmental factors. The risk–benefit ratio of diagnosis and treatment tips precariously in older patients as a result of those losses. Nevertheless, many patients remain highly functional and healthy beyond their eighth decade. Physiological age is a much more powerful determinant of prognosis than chronological age. The comprehensive geriatric
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Oncologists need excellent communication skills to effectively handle challenging conversations regarding prognosis, transition to palliative care, code status, and other sensitive topics. Foundational skills include: 1) posing open-ended, exploratory questions, 2) allowing for appropriate silence in the conversation, 3) listening actively, 4) recognizing emotions, 5) responding to emotions with empathy rather than biomedical information, and 6) speaking with clarity by avoiding technical jargon and offering small chunks of information. Conversations about sensitive topics can be particularly challenging with geriatric patients, who experience functional and sensory limitations. The risk-benefit ratio of diagnostic and therapeutic interventions tips precariously in older patients as many develop geriatric syndromes. Older cancer patients have the unique perspective of looking back on a long life and looking forward to impending death. Higher order skills can be very powerful in helping geriatric cancer patients find meaning and dignity at the end of life. These skills include exploring spirituality and coping strategies and engaging the patient in conversation and reflection about their legacy.
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assessment (CGA) includes a battery of physical, psychological, and cognitive tests that help geriatricians assess risk from treatments such as surgery, radiation, or chemotherapy. CGA includes the assessment of co-morbidities and their severities, geriatric syndromes, nutritional status, and social environments [24–26]. Geriatric syndromes include delirium, dementia, frailty, falls, polypharmacy, incontinence, depression, and other clinical presentations common in older patients but not unique to them. The CGA is a powerful tool for developing a treatment plan [23, 27]. However, the CGA is time consuming and therefore beyond the scope of most oncology practices. Oncologists should partner with geriatricians in the care of particularly complex patients when possible, and remain aware of key barriers to communication and clinical challenges in all their geriatric patients.
Dementia and delirium are the two most common cognitive deficits associated with aging. Dementia is a progressive, usually irreversible loss of higher cognitive functions, such as short-term memory, problem solving, and language skills. Alertness often remains intact in demented patients until late stages. In contrast, delirium is characterized by acute onset of diminished alertness that waxes and wanes during the day, often worsens at night, and is often precipitated by metabolic
functional deficits Table 1. Foundational communication skills and illustrative phrases [45] Skill
Illustrative phrase
Give ‘warning shot’ before delivering bad news Name the emotion Explore, encourage expression
Mrs. J, I reviewed your test results, and I’m afraid I have some bad news. ‘You look sad today’ ‘Tell me more … ’ ‘It’s important for me to understand how you are dealing with all of this’. ‘I can’t imagine how difficult this must be for you’ ‘It must be difficult to see your loved one in this situation’ ‘I wish … ’ ‘People in your situation express similar feelings’ ‘I can understand why you are so anxious. Those feelings are normal’. ‘Let me be sure I understood you correctly … ’ ‘We just discussed a lot of information. I want to make sure I explained clearly. Can you please tell me what you take away from our conversation?’ ‘I am sorry to say you cancer has returned’ (wait silently for response). ‘Treatment will be unusually risky for you’. It must be hard for you to find yourself so sick. How are you holding up? How is your spirit doing? ‘I admire your courage’.
Empathize
Validate
Rephrase and confirm understanding
Communicate small chunks of information. Explore spirituality, coping strategies. Respect
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Hearing impairment affects ∼35%–50% of older adults [38]. In addition, up to 25% of older adults are visually impaired, and 7– 17% are both visually and hearing impaired [38]. These sensory deficits inhibit verbal and non-verbal communication and, combined with physical frailty and limited mobility, make instrumental activities of daily living (IADL) challenging if not impossible. IADLs include driving, taking the bus, managing finances, shopping, and other activities that allow independence in the community. As older people become less mobile, they rely more on family, friends, and social and health care services for transportation to medical appointments, which are physically and emotionally stressful for them and their caregivers [24, 25, 39, 40]. Interdisciplinary teams of nurses, doctors, social workers, chaplains, and other providers can support caregivers and reduce their stress by creating meaningful and long-term relationships with them [41]. If patients lack extensive support, their functional deficits ultimately lead to social isolation from friends and family, which predicts mortality. Elderly patients often feel as though they are burdens on others and struggle to find meaning at the end of life [42].
medical co-morbidities As people age, they often develop multiple co-morbidities, such as cardiovascular disease, diabetes, obesity, and lung disease, which dramatically increases their use of health care services [40]. Frail, ill geriatric patients require close medical supervision, and their providers must negotiate goals of care strategically in order to avoid undue toxic effect [21–23, 26, 39].
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cognitive deficits
disturbances, infection, pain, medications, or other insults. Dementia is a common risk factor for delirium. Clinicians often fail to detect mild dementia and delirium. Evaluating cognition with a mental status exam, the Memorial delirium assessment scale (MDAS), or similar instrument is therefore important for determining whether a geriatric patient is competent to make his own decisions and able to adhere to the treatment plan [28–30]. Cognitive deficits also make the assessment of pain and other symptoms difficult. Cognitively impaired patients often over or under express their symptoms, which cause distress for families and clinicians who have difficulty in managing them appropriately. Some patients with intact cognitive abilities have poor health literacy, which inhibits their ability to understand their condition, treatment options, and quality-of-life issues and communicate their preferences [31–33]. Family members and caregivers become surrogate decision makers for patients who are cognitively impaired or have low health literacy [34]. Having a surrogate increases the complexity of communication and decision making [35, 36]. Surrogates may be reluctant to make sensitive decisions concerning treatment plans, resuscitation, and end-of-life care without first consulting other family members, which create delay [37]. Decision making by surrogates is particularly challenging when the patient has not engaged in advance care planning.
symposium article the case: mrs. j
communication challenges that may arise in caring for mrs. j ‘doctor, i’m scared’ The doctor introduces himself and sits at eye level a comfortable distance from the patient. He silences his phone and removes other distractions. He also asks what she understands about her illness, listens intently, and watches for non-verbal cues, such as facial expressions and body language [43, 44]. He uses other foundational communication skills summarized in Table 1 [45]. Mrs. J verbalizes good understanding of medical findings, but seems anxious. During the course of the conversations, she says: ‘I’m scared’. How should her doctor respond? Many providers approach emotional statements like this by offering premature reassurance, such as: ‘Don’t worry. We will take good care of you’. However, this approach inhibits patient narrative and paradoxically creates more anxiety. Patients need to be heard. Other providers play cheerleader, saying ‘You need to fight this illness if we are going to beat it’. This approach can lead to feelings of shame or guilt, as if the patient gives up simply by expressing fear. The best approach to emotional expressions, such as ‘I’m scared’, or ‘I miss playing with my grandkids’, is to explore those emotions, listen for additional empathic opportunities, and then respond with empathy:
• Explore: ‘Tell me more about what frightens you’. • Listen for empathic opportunities [46, 47]: ‘I have cared for my husband every day for 60 years. I cooked all his meals and managed the house. We raised four kids together and helped raise 12 grand kids. I worry about what will happen to him when I die’. Active listening requires total focus and is hard work. Active listening is highly therapeutic, and it creates empathic opportunities. • Respond with empathy [46]: ‘I cannot imagine how difficult this illness must be for you and your family. It is normal for
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you to feel fear, uncertainty, and anxiety. I am inspired by the love between you and your family. I wish we could get rid of your cancer easily’. Offering reassurance is not wrong. However, reassurance is most effective late in the conversation after patient and family have had the opportunity to express themselves:
• Doctor: ‘This is a process, and we will develop the best plan of care and support you no matter what. We will do our best to balance treatment and quality of life’. The exploratory/ empathic paradigm briefly illustrated above applies to just about any emotionally charged, sensitive, or challenging conversation, including those described below.
‘how long do i have?’ Mrs. J says ‘My family doctor told us this cancer is growing quickly. How long do you think I have?’ Typical responses to this classic prognostic question include [48, 49]:
• ‘It depends on how well you respond to treatment’. • ‘It is impossible to say’. • ‘Median survival for your condition is X months’. While these statements are factually accurate, they do not get to the point of the question. A better strategy is to find out what lies beneath the question: I will give you numbers and statistics if you want. But first help me answer the question the best way possible. Tell me why you ask about prognosis. What is on your mind?
This exploratory approach allows us to tailor the response to the patient’s specific concerns. Some patients want to know if they are likely to survive to a landmark family occasion, such as a wedding or graduation. Some want to know whether to summon friends and relatives from out of town, whereas others simply want to become emotionally prepared. Open-ended exploration is also important for developing a treatment plan that is consistent with the patient’s goals, since older patients tend to be less assertive in asking questions than younger patients are [40].
mrs. j revisited Mrs. J begins chest radiation with sensitizing chemotherapy. Despite reduced doses of chemotherapy, she experiences severe anorexia, dysphagia, and volume depletion during the third week of treatment. She is confined to bed most of the day. She is also experiencing periods of confusion. She presents to the emergency center, where brief cognitive evaluation reveals mildto-moderate delirium. She can no longer tolerate anticancer treatment. She is admitted for intravenous hydration, correction of electrolyte disturbances, treatment of delirium, and discussion of goals of care. She is accompanied again by her daughter and husband. What communication challenges may arise at this point?
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Mrs. J is an 82-year-old woman who smoked one pack of cigarettes per day for 50 years but quit 15 years ago. She has moderate chronic obstructive pulmonary disease and compensated congestive heart failure, and she experiences shortness of breath on moderate exertion. She saw her doctor when she developed a persistent cough. Imaging, biopsy, and staging studies revealed stage IIIB non-small-cell lung cancer, with mediastinal lymph node involvement. She was referred to your oncology office for treatment. Mrs. J lives with her husband and her daughter, both of whom accompanied her to the clinic. Her daughter is divorced with three young children and employed full time. Mrs. J can perform activities of daily living (ADLs), such as bathing and dressing, and some IADLs, including cooking and cleaning, independently. However, she relies on her daughter to take care of other IADLs, such as shopping, finances, and transportation. She has mild bilateral cataracts and mild hearing impairment. She is cognitively intact as determined by mental status exam and MDAS. She has been very anxious since the time of her diagnosis and consequently, has had trouble sleeping.
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‘you mean you are just going to let her die?’
I also hope your mother recovers enough to receive more treatment. I know she is a fighter. I respect how you have supported her through her illness, staying by her side at all times. Having said that, I am concerned she may not recover sufficiently to receive more treatment.
Furthermore, the question ‘Are you the kind of person who finds it useful to hope for the best but prepare for the worst?’ facilitates discussions about goals of care [50]. Such exploratory conversations typically lead to acknowledgment by the patient and family that quality of life is a high priority. If so, the provider can say ‘I am afraid additional treatment directed at the cancer is too risky. I recommend we focus entirely on comfort and quality of life’. This recommendation may be met with: ‘You mean you are just going to let her die? I feel like we are giving up on her’. In addition, an exploratory empathic approach promotes trust and rapport: I know it may feel like we are just letting her die or giving up on her. I wish we had better treatments. I respect your fighting spirit and the love you are demonstrating for your mother. She is lucky to have you on her side. I just don’t want to make her feel worse than she already is. We can always hope for a miracle, but I think we should develop an alternate plan in the likely event we don’t get a miracle.
‘we want everything done’ Later in the conversation, her doctor discusses resuscitation status, since cardiopulmonary resuscitation essentially never yields meaningful recovery for patients with advanced incurable malignancy. When the topic arises, Mrs. J’s daughter says ‘We want everything done. We want to keep fighting’. Again the tendency in this case is to try to educate the family to discourage heroic measures. Unfortunately, this approach often leads to resistance, since it may feel like we are trying to withhold lifesaving interventions. The exploratory paradigm can yield meaningful information and lead to empathic opportunities. Useful responses include:
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• ‘Tell me what you mean by “everything”’ • ‘What is your understanding of what happens during cardiopulmonary resuscitation?’
• ‘Are you the kind of person who wants to go in peace to the Lord naturally when your time comes?’ A request to ‘do everything’ is often simply an expression of emotional, spiritual, and family distress about how to balance harm and benefit of treatments [51]. ‘Do everything’ usually does not mean the patient and family want every invasive and possibly life-prolonging treatment with a high burden and only a tiny chance of benefit [51–53].
speaking with a delirious patient Delirium and other cognitive deficits complicate communication between patients, their caregivers, and the medical team. Families often become distressed when they misinterpret what patients say. We should keep conversations simple by avoiding complex medical issues that are beyond the comprehension of delirious patients while still conveying empathy. If the patient is not severely delirious and therefore still somewhat conversant, it is often helpful to ask the patient’s permission to speak with her family separately, and then to discuss more complex or sensitive issues without the patient present.
the case continues Mrs. J’s delirium improves in response to supportive measures, but her overall functional status does not improve appreciably. She has become essentially bed bound, requiring nearly total care, including bathing and toileting. The team discusses hospice with Mrs. J and her family, and they meet with the case manager to discuss in-patient versus home hospice. Mrs. J’s daughter is employed full time and is divorced with three young children. She has already taken 2 weeks family medical leave. Mrs. J also has a grown son with a full-time job living in another state with two children of his own.
‘help me end my suffering. I don’t want to be a burden anymore’ Her doctor enters Mrs. J’s room one morning when Mrs. J’s daughter is out running an errand. Mrs. J appears sad and subdued, and she finally confides: I just want to end this now. I don’t want to be a burden anymore. Can you help me end my misery?
How should we respond to this common and extraordinarily emotional request? Again, many providers tend to offer reassurance, such as: You are not a burden. Besides, you deserve to be supported at this time. You paid your dues by supporting your family all these years. I am sure they want to support you now.
Other providers respond factually by saying: ‘You know I cannot hasten your death. Doing so is against the law’.
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The doctor enters the hospital room to discuss goals of care and resuscitation status with Mrs. J and her family. She begins by assessing their understanding of the situation. Mrs. J says she wants to return home as soon as possible to work in her garden. However, Mrs. J is still somewhat delirious, so her daughter does most of the talking on her behalf. Her daughter verbalizes good understanding of the proximate reasons for her mother’s hospital admission, and then says: ‘Once she recovers from this bout of dehydration, we expect to resume chemotherapy and hopefully cure this cancer’. What is the best response to Mrs. J’s daughter’s unrealistic expectations? Many providers attempt to keep hope alive by saying something like ‘Let’s see how she does in a few weeks and reassess after she receives physical therapy and gets stronger’. This approach is problematic, since it perpetuates unrealistic expectations and denies her the palliative care she so desperately needs. In contrast, an empathic approach lays the groundwork for better decision making:
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symposium article These responses may be factually accurate, but they inhibit expression. The exploratory/empathic paradigm also establishes trust and rapport and promotes healing by promoting expression. Consider the following example:
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conversation. This paradigm can be specifically adapted and expanded for patients who struggle to find meaning at the end of life. Legacy type questions encourage patients to take stock of their lives and help them find meaning and dignity as they approach death.
It must be difficult for you to be the one receiving care, when all your life you have taken care of your family.
In addition, the exploratory/empathic paradigm can be expanded and adapted specifically for patients like Mrs. J who struggle to find meaning at the end of life.
helping patients find meaning at the end of life
• Tell me a little about your life history:
• • • • • •
(i) Most memorable moments? (ii) Most important accomplishments? (iii) What made you feel most alive? Are there things you want your family to know and remember about you? What are/were your most important roles in life? (i) Why were those roles so important? (ii) What did you accomplish in those roles? What are you most proud of? Are there things you feel you still need to say (or say again) to your loved ones? What are your hopes and dreams for your loved ones? What have you learned about life that you want to pass along to others?
conclusion Conversations with geriatric oncology patients pose special challenges due to functional and sensory limitations that arise as people age. Geriatric patients have the perspective of looking back on long life and looking forward to impending death. Open-ended questions facilitate patients’ authentic narrative, which helps establish trust and rapport and creates emotional moments. Those emotional moments are healthy and represent empathic opportunities. Staying on the emotional plane by seizing those empathic opportunities and avoiding standard factual biomedical responses promotes healing. The exploratory/empathic paradigm is a powerful strategy for just about any emotionally charged, difficult, or sensitive
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The authors have declared no conflicts of interest.
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Recent work by Chochinov et al. [54–56] on dignity therapy informs our relationships with patients who struggle to find meaning at the end of life. Dignity therapy is a form of psychotherapy that involves audio recording patients’ responses to several legacy type questions. Responses are then transcribed, edited, and collated into an enduring document for the patient and family to cherish. Dignity therapy is time consuming and beyond the scope of most oncology or palliative care clinical encounters. Nevertheless, providers can integrate small pieces of dignity therapy by posing one or more legacy type questions during clinical encounters, even brief ones. Examples of questions used during dignity therapy include:
disclosure
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symposium article
Annals of Oncology 23 (Supplement 7): vii30–vii35, 2013 doi:10.1093/annonc/mdt263
‘I don’t want to burden my family’: handling communication challenges in geriatric oncology M. O. Delgado-Guay, M. G. De La Cruz & D. E. Epner* The University of Texas MD Anderson Cancer Center, Houston, TX, USA
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Oncologists often face difficult conversations with patients relating to prognosis, code status, transition to palliative care, and other sensitive topics [1, 2]. Emotions, such as anger, shock, denial, or sadness, run high during such conversations. Conflicts arise when patient and provider are unable to agree on goals and expectations [3, 4]. Despite the importance of outstanding communication skills, medical education emphasizes biomedical knowledge at the expense of relational skills. As a result, many doctors lack nuanced skills necessary to engage in challenging conversations effectively [5–7]. For instance, many doctors avoid delivering bad news because they claim doing so extinguishes hope and causes despair and depression in their patients, even though the opposite is true [5]. Many physicians view questions about prognosis as purely factual, numerical questions rather than as opportunities to explore patients’ goals and fears [5]. Listening to patients and responding to their emotions empathically also takes time, which is limited in clinical encounters. Discussions about the end of life are particularly challenging and time consuming. As a result, patients often lack critical information they need to make well-informed health care decisions at the end of life [8]. Many people think of good communication, or ‘bedside manner’, as a mysterious art form [9]. However, several studies, including a few randomized, controlled trials, show good communication comprises discrete skills that can be taught and learned [10–14]. Physicians who understand the importance of communication skills and are receptive to communication skills training are more likely to acquire those skills [15]. *Correspondence to: Dr. D. Epner, The University of Texas MD Anderson Cancer Center, 1400 Pressler, Unit 1414, Houston, TX 77030, USA. Tel: +1-713-563-1247; Fax: +1-713-7452437; E-mail: [email protected]
Patient-centered communication is a key approach to navigating emotional conversations and establishing healing, trusting relationships. Important skills include eliciting patients’ and families’ perspectives in an open-ended fashion, listening intently, and responding to emotions with empathy [16, 17]. Self-reflection also permits physicians to step back from a conversation with the patient and family and reflect on ‘meta’ issues such as how his or her own emotions might influence decision making for the patient [10, 18, 19]. Patient-centered communication enhances the patient–clinician relationship, greatly improves the quality of care, and reduces stress and burnout among providers [20]. In this article, we focus on issues that make conversations with geriatric oncology patients particularly challenging [21–23]. Care of geriatric patients typically involves complex medical, functional, and social barriers that impact the therapeutic plan. We will describe some of these barriers and then present a clinical vignette that illustrates a few common challenges and strategies for approaching them.
barriers to communication with geriatric oncology patients Geriatric patients, defined as those over 65, lose physiological reserve and functional capacity as a result of genetic and environmental factors. The risk–benefit ratio of diagnosis and treatment tips precariously in older patients as a result of those losses. Nevertheless, many patients remain highly functional and healthy beyond their eighth decade. Physiological age is a much more powerful determinant of prognosis than chronological age. The comprehensive geriatric
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Oncologists need excellent communication skills to effectively handle challenging conversations regarding prognosis, transition to palliative care, code status, and other sensitive topics. Foundational skills include: 1) posing open-ended, exploratory questions, 2) allowing for appropriate silence in the conversation, 3) listening actively, 4) recognizing emotions, 5) responding to emotions with empathy rather than biomedical information, and 6) speaking with clarity by avoiding technical jargon and offering small chunks of information. Conversations about sensitive topics can be particularly challenging with geriatric patients, who experience functional and sensory limitations. The risk-benefit ratio of diagnostic and therapeutic interventions tips precariously in older patients as many develop geriatric syndromes. Older cancer patients have the unique perspective of looking back on a long life and looking forward to impending death. Higher order skills can be very powerful in helping geriatric cancer patients find meaning and dignity at the end of life. These skills include exploring spirituality and coping strategies and engaging the patient in conversation and reflection about their legacy.
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assessment (CGA) includes a battery of physical, psychological, and cognitive tests that help geriatricians assess risk from treatments such as surgery, radiation, or chemotherapy. CGA includes the assessment of co-morbidities and their severities, geriatric syndromes, nutritional status, and social environments [24–26]. Geriatric syndromes include delirium, dementia, frailty, falls, polypharmacy, incontinence, depression, and other clinical presentations common in older patients but not unique to them. The CGA is a powerful tool for developing a treatment plan [23, 27]. However, the CGA is time consuming and therefore beyond the scope of most oncology practices. Oncologists should partner with geriatricians in the care of particularly complex patients when possible, and remain aware of key barriers to communication and clinical challenges in all their geriatric patients.
Dementia and delirium are the two most common cognitive deficits associated with aging. Dementia is a progressive, usually irreversible loss of higher cognitive functions, such as short-term memory, problem solving, and language skills. Alertness often remains intact in demented patients until late stages. In contrast, delirium is characterized by acute onset of diminished alertness that waxes and wanes during the day, often worsens at night, and is often precipitated by metabolic
functional deficits Table 1. Foundational communication skills and illustrative phrases [45] Skill
Illustrative phrase
Give ‘warning shot’ before delivering bad news Name the emotion Explore, encourage expression
Mrs. J, I reviewed your test results, and I’m afraid I have some bad news. ‘You look sad today’ ‘Tell me more … ’ ‘It’s important for me to understand how you are dealing with all of this’. ‘I can’t imagine how difficult this must be for you’ ‘It must be difficult to see your loved one in this situation’ ‘I wish … ’ ‘People in your situation express similar feelings’ ‘I can understand why you are so anxious. Those feelings are normal’. ‘Let me be sure I understood you correctly … ’ ‘We just discussed a lot of information. I want to make sure I explained clearly. Can you please tell me what you take away from our conversation?’ ‘I am sorry to say you cancer has returned’ (wait silently for response). ‘Treatment will be unusually risky for you’. It must be hard for you to find yourself so sick. How are you holding up? How is your spirit doing? ‘I admire your courage’.
Empathize
Validate
Rephrase and confirm understanding
Communicate small chunks of information. Explore spirituality, coping strategies. Respect
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Hearing impairment affects ∼35%–50% of older adults [38]. In addition, up to 25% of older adults are visually impaired, and 7– 17% are both visually and hearing impaired [38]. These sensory deficits inhibit verbal and non-verbal communication and, combined with physical frailty and limited mobility, make instrumental activities of daily living (IADL) challenging if not impossible. IADLs include driving, taking the bus, managing finances, shopping, and other activities that allow independence in the community. As older people become less mobile, they rely more on family, friends, and social and health care services for transportation to medical appointments, which are physically and emotionally stressful for them and their caregivers [24, 25, 39, 40]. Interdisciplinary teams of nurses, doctors, social workers, chaplains, and other providers can support caregivers and reduce their stress by creating meaningful and long-term relationships with them [41]. If patients lack extensive support, their functional deficits ultimately lead to social isolation from friends and family, which predicts mortality. Elderly patients often feel as though they are burdens on others and struggle to find meaning at the end of life [42].
medical co-morbidities As people age, they often develop multiple co-morbidities, such as cardiovascular disease, diabetes, obesity, and lung disease, which dramatically increases their use of health care services [40]. Frail, ill geriatric patients require close medical supervision, and their providers must negotiate goals of care strategically in order to avoid undue toxic effect [21–23, 26, 39].
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cognitive deficits
disturbances, infection, pain, medications, or other insults. Dementia is a common risk factor for delirium. Clinicians often fail to detect mild dementia and delirium. Evaluating cognition with a mental status exam, the Memorial delirium assessment scale (MDAS), or similar instrument is therefore important for determining whether a geriatric patient is competent to make his own decisions and able to adhere to the treatment plan [28–30]. Cognitive deficits also make the assessment of pain and other symptoms difficult. Cognitively impaired patients often over or under express their symptoms, which cause distress for families and clinicians who have difficulty in managing them appropriately. Some patients with intact cognitive abilities have poor health literacy, which inhibits their ability to understand their condition, treatment options, and quality-of-life issues and communicate their preferences [31–33]. Family members and caregivers become surrogate decision makers for patients who are cognitively impaired or have low health literacy [34]. Having a surrogate increases the complexity of communication and decision making [35, 36]. Surrogates may be reluctant to make sensitive decisions concerning treatment plans, resuscitation, and end-of-life care without first consulting other family members, which create delay [37]. Decision making by surrogates is particularly challenging when the patient has not engaged in advance care planning.
symposium article the case: mrs. j
communication challenges that may arise in caring for mrs. j ‘doctor, i’m scared’ The doctor introduces himself and sits at eye level a comfortable distance from the patient. He silences his phone and removes other distractions. He also asks what she understands about her illness, listens intently, and watches for non-verbal cues, such as facial expressions and body language [43, 44]. He uses other foundational communication skills summarized in Table 1 [45]. Mrs. J verbalizes good understanding of medical findings, but seems anxious. During the course of the conversations, she says: ‘I’m scared’. How should her doctor respond? Many providers approach emotional statements like this by offering premature reassurance, such as: ‘Don’t worry. We will take good care of you’. However, this approach inhibits patient narrative and paradoxically creates more anxiety. Patients need to be heard. Other providers play cheerleader, saying ‘You need to fight this illness if we are going to beat it’. This approach can lead to feelings of shame or guilt, as if the patient gives up simply by expressing fear. The best approach to emotional expressions, such as ‘I’m scared’, or ‘I miss playing with my grandkids’, is to explore those emotions, listen for additional empathic opportunities, and then respond with empathy:
• Explore: ‘Tell me more about what frightens you’. • Listen for empathic opportunities [46, 47]: ‘I have cared for my husband every day for 60 years. I cooked all his meals and managed the house. We raised four kids together and helped raise 12 grand kids. I worry about what will happen to him when I die’. Active listening requires total focus and is hard work. Active listening is highly therapeutic, and it creates empathic opportunities. • Respond with empathy [46]: ‘I cannot imagine how difficult this illness must be for you and your family. It is normal for
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you to feel fear, uncertainty, and anxiety. I am inspired by the love between you and your family. I wish we could get rid of your cancer easily’. Offering reassurance is not wrong. However, reassurance is most effective late in the conversation after patient and family have had the opportunity to express themselves:
• Doctor: ‘This is a process, and we will develop the best plan of care and support you no matter what. We will do our best to balance treatment and quality of life’. The exploratory/ empathic paradigm briefly illustrated above applies to just about any emotionally charged, sensitive, or challenging conversation, including those described below.
‘how long do i have?’ Mrs. J says ‘My family doctor told us this cancer is growing quickly. How long do you think I have?’ Typical responses to this classic prognostic question include [48, 49]:
• ‘It depends on how well you respond to treatment’. • ‘It is impossible to say’. • ‘Median survival for your condition is X months’. While these statements are factually accurate, they do not get to the point of the question. A better strategy is to find out what lies beneath the question: I will give you numbers and statistics if you want. But first help me answer the question the best way possible. Tell me why you ask about prognosis. What is on your mind?
This exploratory approach allows us to tailor the response to the patient’s specific concerns. Some patients want to know if they are likely to survive to a landmark family occasion, such as a wedding or graduation. Some want to know whether to summon friends and relatives from out of town, whereas others simply want to become emotionally prepared. Open-ended exploration is also important for developing a treatment plan that is consistent with the patient’s goals, since older patients tend to be less assertive in asking questions than younger patients are [40].
mrs. j revisited Mrs. J begins chest radiation with sensitizing chemotherapy. Despite reduced doses of chemotherapy, she experiences severe anorexia, dysphagia, and volume depletion during the third week of treatment. She is confined to bed most of the day. She is also experiencing periods of confusion. She presents to the emergency center, where brief cognitive evaluation reveals mildto-moderate delirium. She can no longer tolerate anticancer treatment. She is admitted for intravenous hydration, correction of electrolyte disturbances, treatment of delirium, and discussion of goals of care. She is accompanied again by her daughter and husband. What communication challenges may arise at this point?
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Mrs. J is an 82-year-old woman who smoked one pack of cigarettes per day for 50 years but quit 15 years ago. She has moderate chronic obstructive pulmonary disease and compensated congestive heart failure, and she experiences shortness of breath on moderate exertion. She saw her doctor when she developed a persistent cough. Imaging, biopsy, and staging studies revealed stage IIIB non-small-cell lung cancer, with mediastinal lymph node involvement. She was referred to your oncology office for treatment. Mrs. J lives with her husband and her daughter, both of whom accompanied her to the clinic. Her daughter is divorced with three young children and employed full time. Mrs. J can perform activities of daily living (ADLs), such as bathing and dressing, and some IADLs, including cooking and cleaning, independently. However, she relies on her daughter to take care of other IADLs, such as shopping, finances, and transportation. She has mild bilateral cataracts and mild hearing impairment. She is cognitively intact as determined by mental status exam and MDAS. She has been very anxious since the time of her diagnosis and consequently, has had trouble sleeping.
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‘you mean you are just going to let her die?’
I also hope your mother recovers enough to receive more treatment. I know she is a fighter. I respect how you have supported her through her illness, staying by her side at all times. Having said that, I am concerned she may not recover sufficiently to receive more treatment.
Furthermore, the question ‘Are you the kind of person who finds it useful to hope for the best but prepare for the worst?’ facilitates discussions about goals of care [50]. Such exploratory conversations typically lead to acknowledgment by the patient and family that quality of life is a high priority. If so, the provider can say ‘I am afraid additional treatment directed at the cancer is too risky. I recommend we focus entirely on comfort and quality of life’. This recommendation may be met with: ‘You mean you are just going to let her die? I feel like we are giving up on her’. In addition, an exploratory empathic approach promotes trust and rapport: I know it may feel like we are just letting her die or giving up on her. I wish we had better treatments. I respect your fighting spirit and the love you are demonstrating for your mother. She is lucky to have you on her side. I just don’t want to make her feel worse than she already is. We can always hope for a miracle, but I think we should develop an alternate plan in the likely event we don’t get a miracle.
‘we want everything done’ Later in the conversation, her doctor discusses resuscitation status, since cardiopulmonary resuscitation essentially never yields meaningful recovery for patients with advanced incurable malignancy. When the topic arises, Mrs. J’s daughter says ‘We want everything done. We want to keep fighting’. Again the tendency in this case is to try to educate the family to discourage heroic measures. Unfortunately, this approach often leads to resistance, since it may feel like we are trying to withhold lifesaving interventions. The exploratory paradigm can yield meaningful information and lead to empathic opportunities. Useful responses include:
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• ‘Tell me what you mean by “everything”’ • ‘What is your understanding of what happens during cardiopulmonary resuscitation?’
• ‘Are you the kind of person who wants to go in peace to the Lord naturally when your time comes?’ A request to ‘do everything’ is often simply an expression of emotional, spiritual, and family distress about how to balance harm and benefit of treatments [51]. ‘Do everything’ usually does not mean the patient and family want every invasive and possibly life-prolonging treatment with a high burden and only a tiny chance of benefit [51–53].
speaking with a delirious patient Delirium and other cognitive deficits complicate communication between patients, their caregivers, and the medical team. Families often become distressed when they misinterpret what patients say. We should keep conversations simple by avoiding complex medical issues that are beyond the comprehension of delirious patients while still conveying empathy. If the patient is not severely delirious and therefore still somewhat conversant, it is often helpful to ask the patient’s permission to speak with her family separately, and then to discuss more complex or sensitive issues without the patient present.
the case continues Mrs. J’s delirium improves in response to supportive measures, but her overall functional status does not improve appreciably. She has become essentially bed bound, requiring nearly total care, including bathing and toileting. The team discusses hospice with Mrs. J and her family, and they meet with the case manager to discuss in-patient versus home hospice. Mrs. J’s daughter is employed full time and is divorced with three young children. She has already taken 2 weeks family medical leave. Mrs. J also has a grown son with a full-time job living in another state with two children of his own.
‘help me end my suffering. I don’t want to be a burden anymore’ Her doctor enters Mrs. J’s room one morning when Mrs. J’s daughter is out running an errand. Mrs. J appears sad and subdued, and she finally confides: I just want to end this now. I don’t want to be a burden anymore. Can you help me end my misery?
How should we respond to this common and extraordinarily emotional request? Again, many providers tend to offer reassurance, such as: You are not a burden. Besides, you deserve to be supported at this time. You paid your dues by supporting your family all these years. I am sure they want to support you now.
Other providers respond factually by saying: ‘You know I cannot hasten your death. Doing so is against the law’.
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The doctor enters the hospital room to discuss goals of care and resuscitation status with Mrs. J and her family. She begins by assessing their understanding of the situation. Mrs. J says she wants to return home as soon as possible to work in her garden. However, Mrs. J is still somewhat delirious, so her daughter does most of the talking on her behalf. Her daughter verbalizes good understanding of the proximate reasons for her mother’s hospital admission, and then says: ‘Once she recovers from this bout of dehydration, we expect to resume chemotherapy and hopefully cure this cancer’. What is the best response to Mrs. J’s daughter’s unrealistic expectations? Many providers attempt to keep hope alive by saying something like ‘Let’s see how she does in a few weeks and reassess after she receives physical therapy and gets stronger’. This approach is problematic, since it perpetuates unrealistic expectations and denies her the palliative care she so desperately needs. In contrast, an empathic approach lays the groundwork for better decision making:
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symposium article These responses may be factually accurate, but they inhibit expression. The exploratory/empathic paradigm also establishes trust and rapport and promotes healing by promoting expression. Consider the following example:
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conversation. This paradigm can be specifically adapted and expanded for patients who struggle to find meaning at the end of life. Legacy type questions encourage patients to take stock of their lives and help them find meaning and dignity as they approach death.
It must be difficult for you to be the one receiving care, when all your life you have taken care of your family.
In addition, the exploratory/empathic paradigm can be expanded and adapted specifically for patients like Mrs. J who struggle to find meaning at the end of life.
helping patients find meaning at the end of life
• Tell me a little about your life history:
• • • • • •
(i) Most memorable moments? (ii) Most important accomplishments? (iii) What made you feel most alive? Are there things you want your family to know and remember about you? What are/were your most important roles in life? (i) Why were those roles so important? (ii) What did you accomplish in those roles? What are you most proud of? Are there things you feel you still need to say (or say again) to your loved ones? What are your hopes and dreams for your loved ones? What have you learned about life that you want to pass along to others?
conclusion Conversations with geriatric oncology patients pose special challenges due to functional and sensory limitations that arise as people age. Geriatric patients have the perspective of looking back on long life and looking forward to impending death. Open-ended questions facilitate patients’ authentic narrative, which helps establish trust and rapport and creates emotional moments. Those emotional moments are healthy and represent empathic opportunities. Staying on the emotional plane by seizing those empathic opportunities and avoiding standard factual biomedical responses promotes healing. The exploratory/empathic paradigm is a powerful strategy for just about any emotionally charged, difficult, or sensitive
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The authors have declared no conflicts of interest.
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Recent work by Chochinov et al. [54–56] on dignity therapy informs our relationships with patients who struggle to find meaning at the end of life. Dignity therapy is a form of psychotherapy that involves audio recording patients’ responses to several legacy type questions. Responses are then transcribed, edited, and collated into an enduring document for the patient and family to cherish. Dignity therapy is time consuming and beyond the scope of most oncology or palliative care clinical encounters. Nevertheless, providers can integrate small pieces of dignity therapy by posing one or more legacy type questions during clinical encounters, even brief ones. Examples of questions used during dignity therapy include:
disclosure
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