END-OF-LIFE CARE
From a course on Pain Management and End-of-Life Care, sponsored by the University of California, San
Francisco, School of Medicine
| COMMUNICATING WITH DYING PATIENTS —Steven Z. Pantilat, MD, Associate Professor of Clinical Medicine and
Director, Palliative Care Service and Palliative Care Leadership Center, University of California, San Francisco School of
Medicine
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| Introductory remarks: communication can be difficult, even when talking about everyday issues and using same words;
when we start talking about issues like death and dying, prognosis, advanced care planning, suffering, and spiritual concerns,
communication becomes even more difficult, and when dealing with patients with whom we do not share common
language, it can be more difficult yet
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| Communicating about illness and death: patients want to talk about these issues, but studies suggest that physicians do
not communicate with patients about illness and death as well as they might
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Recommendations for Improving Communication
| Listen: speaker likes to ask broad open-ended question (eg, “how have things been going for you”), then give patient time
(≈2 min) to respond uninterrupted (typically, patients in primary care outpatient practice get to speak for ≈18 sec before
being interrupted by physician); often, most important thing patient wants to say to physician not first thing he or she
says; open-ended question actually extremely effective way of taking patient history (shown to be more efficient than
close-ended questions)
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| Make empathic statements: on average, seriously ill patient makes 2 to 3 statements each visit that have emotional content
(fear of illness worsening; anger); important for physician to offer empathic reply that reflects patient’s emotion (eg, “I
can see that what you’re facing is a scary experience, it must be petrifying”; “it must be really scary to think about being
that sick”); if unable to identify emotion underlying patient’s statement, can respond with, “tell me more about that”; if
one does not know what to say, even silence better than making unempathic statement; speaker listens for these types of
statements, as they provide great opportunity to connect with patient, to establish rapport and trust, and to let patient
know he is trying to understand his or her experience; if you misinterpret emotions behind statement (patient will correct
you, but also will give you points for trying to understand)
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| Eliciting values and goals of care: not easy; patients tend to speak to physicians in language of what they do in their
lives (eg, “I want to be able to go back to work”; “I want to be able to live independently”), while physicians often
speak in language of what they do to patients (eg, “do you want to be in the intensive care unit [ICU]?”; “do you want
to be intubated?”); challenge for physicians to interpret their language so that it speaks to language of patients; asking
for specific intervention directives not helpful; need to elicit from patients outcomes important to them and what they
value in their lives; may be specific issues (eg, cardiopulmonary resuscitation [CPR]) that need to be discussed with
hospitalized patients, but should be done in context of overall values and goals; recommended phrases for eliciting
values and goals—“when you think about what lies ahead, what worries you the most?”; “when you think about the
future, what do you hope for?”
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| Offer prognosis: prediction difficult; cannot know exactly what will happen to patient; yet, physicians often have much
more information than they are willing to acknowledge; reasons physicians do not like to offer prognosis—patients
want physicians to be overly accurate; physicians do not want to take away hope; reasons to talk about prognosis—
withholding prognosis can allow patient to have false hope (false hope is no hope); patients often want to know (true that
patients want prognosis to be positive, but they also want information); absent explicit discussions, patients have to infer;
information influences decisions; accuracy not critical; “we would all live our lives differently if we knew we had only
one year to live”; not suggesting physicians should discuss prognosis with every patient; in considering whom to talk to,
speaker asks himself “would I be surprised if this patient died in the next year?”
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| Discuss death explicitly: keep in mind that seriously ill patients already have thought about death and dying (for many patients,
first thought after being given diagnosis of serious condition, eg, cancer, stroke, heart attack is, “I am going to
die”); if physician can ask right question, it opens door for patient to talk about this, which can be great relief; even if patient
not yet ready to talk about death and dying, important for him or her to know physician willing and ready to talk
when he or she has questions; that said, death and dying not easy to talk about; speaker’s approach—“many patients
with [cancer] tell me they think about the possibility of dying; they have questions about this; how about you?”
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| Remain sensitive to patient’s culture: throughout United States, physicians have patients from many cultures, including
cultures in which talking explicitly about death and dying or about prognosis not valued as in dominant western culture;
cultural issues—desire for information varies with culture; best response is for physicians to be curious and respectful
of patients’ cultures and practices; patients usually know more than we (or their families) think they do; can discuss death
and dying or prognosis in third person; ask how doctor in patient’s culture would handle information
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| Informed refusal: patients can waive their rights to information about their condition; however, need to hear refusal directly
from patient, not just take it at face value from patient’s family; speaker’s approach—“I have information about
your condition; some patients want to know the details, others prefer to have me talk to someone else; how do you feel?”
(this statement gives patient opportunity to request that speaker talk instead to, eg, family member such as spouse or child
[which he is happy to do if that is what patient truly wants], and lets speaker hear request directly from patient)
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| Communicating with patients approaching end of life: establish what patient and family already know about his or her
illness; be aware of nonverbal communication (one’s own as well as patient’s); during these conversations, important to
sit down in presence of patient; use “I wish” statements (helps to put physician and patient on same side); realize this cannot
be just one conversation, but often series of conversations that unfold over time as patient’s status and ideas change;
prepare and practice (evidence shows that how bad news presented has impact on patient’s psychologic outcome, independent
of quality of news)
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| Language to avoid: “there is nothing more we can do”; “would you like us to do everything possible?”; “withdrawal of
care”
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| SUPPORTING FAMILY CAREGIVERS AT THE END OF LIFE —Michael W. Rabow, MD, Associate Professor of Clinical
Medicine, University of California, San Francisco, School of Medicine
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| Introductory remarks: case scenario of Mr. R (patient with pancreatic cancer); increasingly, death preceded by family
caregiving; family caregivers provide “whole host” of supports for seriously ill patient (transportation; shopping; homemaking;
emotional support; nutritional care; financial management); what is physician’s responsibility or opportunity for
supporting family caregivers at end of patient’s life?
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Burdens of Family Caregiving
| Time and logistics: takes up great deal of time (20% of caregivers provide full-time or constant care; nearly 60% feel on
duty 24 hr/day; treatment itself adds to burden of time); commitment unpredictable (determined by length of patient’s illness
and functional decline); enormous administrative and logistical needs associated with caregiving (most caregivers
report it “feels like reinventing the wheel”)
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| Physical tasks: physically difficult; caregivers typically elderly, may be ill or disabled; usually untrained (do not know how
to move or lift patient); consequently, at significant risk for physical injury
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| Financial costs: huge uncompensated financial burden (outright expenses and lost income and benefits); economic disruption
(20% of caregivers quit work to care for loved ones; nearly 33% of families lose all their income); worse for black
and Hispanic families; similar regardless of insurance coverage; government support limited (Family Medical Leave Act
provides only for unpaid leave to care for seriously ill family member; only few states allow eligible Medicaid personal
care benefits to be paid to family caregiver); patients and families feel differently about costs of caregiving (patients fear
being burden; families almost always willing to do anything); economic worries influence end-of-life care decisions
(more likely to request comfort care only or consider physician-assisted suicide if feeling financial strain)
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| Mental health risks: huge; while caregivers certainly feel positive emotions (eg, satisfaction, increased feelings of intimacy),
they can experience many negative emotions as well (eg, inadequacy; no matter how good caregivers are, they invariably
feel they are not doing enough); risk for depression and anxiety high (50% of caregivers suffer from clinical
depression; incidence probably even higher among those providing care >20 hr/wk); caregivers at greater risk for complicated
grief if unprepared for patient’s death
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| Physical health risks: caregivers tend to put needs of ill person ahead of their own (minimize severity of their own problems;
forego or delay their own healthcare; especially true for those with poor baseline health, limited education, or significant
social isolation); health risks (decline in immune function; accelerated aging; worsened mental health status;
increased cancer and mortality risks)
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| Physician’s role: physicians clearly have role with family caregivers (but role unclear); your patient may be family (physicians
who question their patient populations will find large number at home caring for individual even sicker than they
are; your patient’s family may need your attention as well); relationship can be intense (family members can challenge
physician’s authority; may disagree among themselves; there may be specter of litigation; family may be culturally or religiously
different from physician)
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| “The bare minimum”: physicians legally required to—address wishes of appropriate surrogate decision makers; report
suspected neglect or abuse
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| Basic care: recognize instrumental role of family caregivers; basic assessment of caregivers (ask questions like “how is it
going at home?”; “how are things going with you?”); most family caregivers berated by their loved one’s physician for not
giving medications properly (without getting much appreciation for what they do); at very minimum, must have clear
communication when “handing off” patients, between hospital and outpatient setting, and with families (to help them understand
what is going on)
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| Advanced doctoring: in 1993, American Medical Association (AMA) stated that “the primary care physician has a key
linkage role, assessing the caregiver as well as the patient in a comprehensive home-based approach that includes training
caregivers, validating the caregiver’s role, and case management”; physician in relationship with family caregivers
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Activities Physicians Can Pursue to Support Caregivers
| Excellent communication: family needs to know physician comfortable talking about death; family communication
needs—physician willing to talk; timely and clear information (information needs paramount [patients and families tend
to want prognostic information more than they want to make decisions; want control over timing of information]; physicians
can provide proactive guidance); physician able to listen (elicit family’s views with open-ended questions; keep in
mind difference between cognitive and communication; need to be sensitive to emotions behind caregiver’s cognitive
questions and/or statements)
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| Advance care planning and decision making: studies have shown that documents (eg, verbal power of attorney, advance
directives) do not have much influence on care; more important to make plans for care based on patient’s goals and values
than to make decisions; diversity in decision making (57% of Korean-Americans see family as primary decision maker
rather than patient; 45% of Mexican Americans; 24% of blacks; physician needs to recognize and be sensitive to this possibility)
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| Support for home care and hospice: family is medical team in home; provides incredible amount of medical services (20%
of caregivers do dressing changes; 40% administer medications [of those, 50% administer ≥5 medications]; one sixth manage
nonoral medicines); caregivers asked to make sophisticated medical assessments (when to give prn medications; when
to call physician; when to take patient to emergency department [ED])
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| Physician’s role in home care: write clear guidelines for medications (eg, rather than “prn,” can write “offer and refuse”);
let caregivers know whom to call for help and when; make sure caregivers part of well integrated interdisciplinary team;
orient and prepare caregivers
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| Benefits of hospice: often ideal system for home care at end of patient’s life; initiates and coordinates multiple services; associated
with clear reduction in risk for death of bereaved spouse; benefits may occur even when hospice care as short as
3 to 4 wk
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| Empathy for family relationships and emotions: increasing closeness and intimacy clearly one of benefits of family caregiving;
emotional strains—increased risk for illness and anxiety; reinforced dynamics of families that were estranged
(leading to forced reestablishment of ties); threats to dignity
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| Physician’s role in caregiver emotions: validate common feelings; reassure families about quality of care; listen to caregiver
needs and opinions; recommend interventions that can lessen caregiver burden and improve satisfaction (adult day care; caregiver
education; social work referrals; psychological support)
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| Attention to anticipatory grief and bereavement: research shows that support provided to caregivers before patient’s
death more important than support provided to family members when already bereaved; known that when caregivers unprepared
for loved one’s death, they are more at risk for complicated or traumatic grief
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Educational Objectives
| The goal of this activity is to review end of life care, with a focus on communicating with dying patients and supporting
family caregivers. After hearing and assimilating this program, the clinician will be better able to:
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 | 1. Utilize techniques such as effective listening, open-ended questions, empathic statements, and eliciting values and
goals in communicating with patients.
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| 2. Cite the reasons physicians are often reluctant to offer a prognosis and the reasons they should do so when talking
with patients at the end of life.
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| 3. Talk explicitly about issues of death and dying, while remaining sensitive to factors such as cultural differences and
nonverbal communication.
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| 4. Discuss the role of family caregivers and describe the 5 burdens of family caregiving.
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| 5. Consider and pursue opportunities to offer support and care to family caregivers who are caring for loved ones at the
end of life.
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Discussed on This Program
Atorvastatin calcium [Lipitor]
Suggested Reading
Clayton JM et al: When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients. J
Pain Symptom Manage 30:132, 2005; Emanuel EJ et al: Talking with terminally ill patients and their caregivers about
death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med 164:1999, 2004; Farber SJ et al: Issues in
end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med 6:19, 2003; Glajchen M: The emerging role
and needs of family caregivers in cancer care. J Support Oncol 2:145, 2004; Hanley E: The role of home care in palliative
care services. Care Manag J 5:151, 2004; Hauser JM, Kramer BJ: Family caregivers in palliative care. Clin Geriatr
Med 20:671, 2004; Hayman JA et al: Estimating the cost of informal caregiving for elderly patients with cancer. J Clin
Oncol 19:3219, 2001; Langa KM et al: Out-of-pocket health-care expenditures among older Americans with cancer.
Value Health 7:186, 2004; McPhee SJ et al: Finding our way--perspectives on care at the close of life. JAMA 284:2512,
2000; McSkimming S et al: The experience of life-threatening illness: patients' and their loved ones'perspectives. J Palliat
Med 2:173, 1999; Pantilat SZ: Care of dying patients: beyond symptom management. West J Med 171:253, 1999; Pantilat
SZ: End-of-life care for the hospitalized patient. Med Clin North Am 86:749, 2002; Pantilat SZ: Patient-physician
communication: respect for culture, religion, and autonomy. JAMA 275:107, 1996; Pantilat SZ, Markowitz AJ: Perspectives
on care at the close of life. Initiating end-of-life discussions with seriously ill patients. JAMA 285:2906, 2001; Rabow
MW et al: Supporting family caregivers at the end of life: "they don't know what they don't know". JAMA 291:483, 2004;
Rabow MW, Markowitz AJ: Perspectives on care at the close of life. Serving patients who may die soon and their families.
JAMA 286:1377, 2001; Rabow MW, McPhee SJ: End-of-life care. Pediatrics 108:1051, 2001; Redinbaugh EM et
al: End-of-life caregiving: what helps family caregivers cope? J Palliat Med 6:901, 2003; Rickerson EM et al: How well
are we caring for caregivers? Prevalence of grief-related symptoms and need for bereavement support among long-term
care staff. J Pain Symptom Manage 30:227, 2005; Tulsky JA: Beyond advance directives: importance of communication
skills at the end of life. JAMA 294:359, 2005; Waldrop DP et al: Final transitions: family caregiving at the end of life. J
Palliat Med 8:623, 2005.
Faculty Disclosure
In adherence to ACCME guidelines, the Audio-Digest Foundation requests all lecturers to disclose any significant financial
relationship with the manufacturer or provider of any commercial product or service discussed. The following has been disclosed:
Dr. Pantilat has received honoraria from Endo Pharmaceuticals, Janssen, L.P., Pfizer Inc., and Purdue Pharma L.P.
Drs. Pantilat and Rabow spoke at a course on Pain Management and End-of-Life Care, held June 9-10, 2005, in San Francisco,
and sponsored by the University of California, San Francisco, School of Medicine. The Audio-Digest Foundation
thanks the speakers and the UCSF School of Medicine for their cooperation in the production of this program.
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