Download `I don`t want to burden my family`: handling communication

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
symposium
article
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.
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
© The Author 2013. Published by Oxford University Press on behalf of the European Society for Medical Oncology.
All rights reserved. For permissions, please email: [email protected].
symposium article
Annals of Oncology
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.
cognitive deficits
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
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.
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
Volume 23 | Supplement 7 | October 2013
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].
doi:10.1093/annonc/mdt263 | vii
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the case: mrs. j
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.
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
vii | Delgado-Guay et al.
Annals of Oncology
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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Annals of Oncology
‘you mean you are just going to let her die?’
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:
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’.
doi:10.1093/annonc/mdt263 | vii
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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:
Annals of Oncology
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
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:
• 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
vii | Delgado-Guay et al.
disclosure
The authors have declared no conflicts of interest.
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Volume 23 | Supplement 7 | October 2013
symposium article
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doi:10.1093/annonc/mdt263 | vii