end-of-life considerations in older patients who have lung disease
TRANSCRIPT
Clin Chest Med 28 (2007) 801–811
End-of-Life Considerations in Older PatientsWho Have Lung Disease
Renee D. Stapleton, MD, MSca,b,*, J. Randall Curtis, MD, MPHa,b
aDivision of Pulmonary and Critical Care Medicine, Department of Medicine, School of Medicine,
University of Washington, Seattle, WA, USAbHarborview Medical Center, Box 359762,
325 Ninth Avenue, Seattle, WA 98104-2499, USA
The United States population and populations
throughout the world are aging at increasingrates, and the proportion of people over age 65is growing faster than any other age group [1]. It
has been estimated that by 2030, more than 20%of Americans will be age 65 or older [2]. This in-crease in longevity, however, means that the geri-
atric population comprises a larger proportion ofpeople nearing the end of life and translates intomore deaths resulting from chronic, rather thanacute, illnesses [3]. The median age at death in
the United States is currently 77 years, withmost deaths occurring after age 65 [2]. Some liter-ature has suggested that the last year of life is of-
ten associated with multiple unpleasant symptomsand marked reductions in quality of life [4]. Im-provements in palliative care for older patients
are an important public health issue [5].With the aging population, lung disease has
become a major cause of morbidity and mortality
worldwide. Chronic obstructive pulmonary dis-ease (COPD) is the fourth leading cause of deathin the United Statesdexceeded only by heartdisease, cancer, and stroke [6,7]. While mortality
from cardiovascular disease, stroke, and cancerhas decreased over the last two decades, COPDmortality in the United States has doubled and
is increasing worldwide [8–10]. Although
* Corresponding author. Division of Pulmonary and
Critical Care Medicine, Harborview Medical Center,
Box 359762, 325 Ninth Avenue, Seattle, WA 98104-
2499.
E-mail address: [email protected]
(R.D. Stapleton).
0272-5231/07/$ - see front matter � 2007 Elsevier Inc. All rig
doi:10.1016/j.ccm.2007.08.002
mortality and morbidity from COPD vary consid-
erably around the world, it is the leading cause ofdeath in developed and developing countries[7,10]. Lung cancer, another category of lung dis-
ease that substantially contributes to mortality, isthe leading cause of cancer deaths in the UnitedStates, and its death rate is rapidly increasing in
developing countries [11,12].Along with mortality, health care use among
patients with lung disease is also increasingexponentially. Patients who have COPD in de-
veloped countries are often hospitalized three orfour times per year, and many of these hospital-izations are in an intensive care unit (ICU) [13–
15]. In 2005, the National Heart, Lung, and BloodInstitute reported that the annual direct healthcare costs for COPD were almost $22 billion,
and the indirect costs (lost productivity andwork days) were approximately $17 billion [16].
Palliative care includes management of symp-
toms, preservation of quality of life, communica-tion with patients and their loved ones, andsupport of the physical, emotional, and spiritualwell-being for patients and families [17]. As the
population ages, the prevalence of lung diseaseand other chronic diseases increases, the burdenof symptoms enlarges, anddbecause there are
more deaths from lung diseasedthere is a strongand increasing need for palliative care and end-of-life services for these patients [18,19]. Some re-
search, mostly in patients who have cancer, hasshown that delivery of palliative care is associatedwith reductions in pain and other symptoms, im-provements in quality of life, and enhanced family
and patient satisfaction [20–24]. A recent study
hts reserved.
chestmed.theclinics.com
802 STAPLETON & CURTIS
also showed that receipt of hospital-based pallia-tive care services is associated with significantlylower likelihood of admission to an ICU and
lower inpatient costs [25]. Available data suggestthat high-quality palliative care leads to improvedpatient- and family-centered outcomes and de-creased costs. This article highlights the major
factors involved in providing palliative and end-of-life care to older patients with lung diseases.
Quality of life and burden of symptoms in older
patients with lung diseases
Much literature over the past few decades has
focused on symptom management and palliativecare in patients who have cancer [26]. In contrast,only a few studies have examined quality of lifeand the burden of symptoms in chronic nonmalig-
nant lung diseases, most of which are in patientswho have COPD. Several studies have foundthat patients who have COPD have a reduced
health-related quality of life [27–31]; in most stud-ies, physical, emotional, and social functioning issignificantly decreased. Quality of life is also sig-
nificantly reduced in persons with other lung dis-eases, such as idiopathic pulmonary fibrosis andsarcoidosis [32,33]. The burden of symptoms in
these patients is also high and tends to correlatewith larger reductions in quality of life.
Using standardized questionnaires and inter-views, Gore and colleagues [34] compared symp-
toms and morbidity between 50 patients whohad severe COPD (FEV1 ! 0.75 L and at leastone admission for respiratory failure) and 50 pa-
tients who had inoperable non–small-cell lungcancer. The authors found that the patients whohad COPD had significantly worse physical,
social, and emotional functioning (P!.05) andmore anxiety and depression (90% versus 52%,respectively) than the patients who had cancer.
Only 4% of patients in each group reportedhaving been assessed or treated for mental healthissues. Eighty-two percent of the patients who hadCOPD were housebound, and 36% were chair-
bound, compared with 36% and 10% of patientswho had lung cancer, respectively.
As part of the US-based SUPPORT project
(Study to Understand Prognoses and Preferencesfor Outcomes and Risks of Treatments) [35], Lynnand colleagues [36] studied a cohort of 426 pa-
tients who had COPD who died within 1 year oftheir index hospital admission for a COPD exac-erbation. Nearly 40% of patients had three or
more comorbid illnesses, and between 15% and25% of the patients’ last 6 months of life werespent in a hospital. Twenty-five percent of patients
had serious pain throughout their last 6 months oflife, and 66% had serious dyspnea. Families werealso substantially impacted. In another studyfrom SUPPORT that examined burden of symp-
toms, Claessens and colleagues [37] compared pa-tients who had severe COPD to patients who hadadvanced non–small-cell lung cancer. These au-
thors found that pain and breathlessness werecommon symptoms in both groups. Among pa-tients who had COPD, 56% had severe dyspnea
and 21% had severe pain, whereas among patientswho had lung cancer, 32% had severe dyspneaand 28% had severe pain.
In a recent retrospective study in the United
Kingdom by Elkington and colleagues [38], prox-ies of patients who died from COPD were queriedabout their loved ones’ symptoms in the last year
of life. Breathlessness was present in 98% ofpatients; fatigue, weakness, low mood, and painwere also common. Finally, Solano and colleagues
[39] recently published a systematic review ofstudies reporting the prevalence of physical symp-toms in patients with five progressive diseases
(advanced cancer, AIDS, heart disease, COPD,and renal disease). Three common symptomswere present in more than 50% of patients acrossall five diseases: pain, breathlessness, and fatigue.
Together, the literature on the experiences ofpatients who have COPD suggests that they havea reduced quality of life and a heavy burden of
symptoms that is at least as greatdif not greaterdthan patients who have advanced lung cancer. Themost common symptoms are dyspnea, pain,
fatigue, and depression (discussed separately laterin this article). Although this information isinformative and definitely applies to older patientswho have lung diseases (the average age of
patients in these studies was 70 years), there areother symptomatic considerations in the geriatricpopulation. Not surprisingly, older patients may
differ from younger patients medically and psy-chosocially, and they have a higher likelihood ofhaving particular syndromes, such as dementia or
delirium [40].The prevalence of dementia is estimated to be
1% in persons aged 60 to 65 and increases to 40%
in persons older than 80 years [41]. One recentstudy by Evers and colleagues [42] compared pal-liative care consultations in patients older than 80years to those in younger patients. The authors
found that patients over age 80 had a much higher
803END-OF-LIFE CONSIDERATIONS IN OLDER PATIENTS WHO HAVE LUNG DISEASE
prevalence of dementia and incapacity for deci-sion making and a lower prevalence of cancer.Dementia, especially as it progresses, is often asso-ciated with a reduced life span, particularly when
combined with another event such as a hip frac-ture or pneumonia [43]. Concomitant dementiaaffects the prognosis of other chronic illnesses
and medical decision making; because many pa-tients with dementia are unable to make theirown decisions, involvement of and communica-
tion with loved ones and family members arecrucial.
Delirium is also common in older patients. It is
present is approximately 30% of all hospitalizedolder adults and 50% of all older adults un-dergoing surgery [44]. More than half of nursinghome patients and more than 80% of dying pa-
tients develop delirium [45,46]. Delirium oftenhappens during acute illness, and a subsequentprolonged period of cognitive impairment can fol-
low [47]. Delirium is also a risk factor for mortal-ity, functional decline, and institutionalization[48–50].
Overall, physical symptoms, such as pain anddyspnea, are highly prevalent in older patientswith lung disease, as are syndromes such as
dementia and delirium. These symptoms andconditions in older patients are major causes ofsuffering and play a significant role in morbidity.It seems that they may be underrecognized and
undertreated in this group of patients.
Palliative care, communication, and decision
making about end-of-life issues
Several studies have suggested that the qualityof and access to palliative care is not adequate for
patients who have chronic lung disease, particu-larly COPD. The SUPPORT study found thatpatients who had COPD were significantly more
likely to die in the ICU and be on mechanicalventilation compared with patients with lungcancer, despite generally wanting care that fo-cused on comfort [37]. In the study by Gore and
colleagues [34], which compared patients whohad advanced COPD to persons who had inoper-able lung cancer, none of the patients who had
COPD was offered or received input from pallia-tive care specialists, whereas 30% of the patientswho had cancer received such care and 56%
were aware of these services. Au and colleagues[51] recently published a large cohort study thatcompared health care use at the end of life
between US veterans who had COPD and lungcancer. During the last 6 months of life, patientswho had COPD were twice as likely to be admit-ted to the ICU, were five times more likely to be in
an ICU longer than 2 weeks, and received fewerpalliative medications.
Although it seems that patients with nonma-
lignant lung diseases receive less palliative carethan patients who have cancer, the reasons for thisdiscrepancy are not entirely clear. Whereas pa-
tients who have cancer often predictably declineuntil death, patients with chronic respiratorydiseases, such as COPD, usually deteriorate
slowly until an unpredictable exacerbationchanges prognosis or leads to death [52]. Some au-thors have suggested that the differences may becaused by physicians’ inability to provide accurate
prognostic information toward the end of life inpatients who have COPD because estimating lifeexpectancy is difficult in chronic lung disease
[53]. The SUPPORT study found that physiciansand prediction models were poor at predictingdeath in patients who had COPD, even 5 days be-
fore death [37]. Although disease-specific predic-tive models for death in patients who haveCOPD at the population level have been devel-
oped [54,55], it is likely that accurate prognostica-tion in an individual will remain difficult becauseof the variability inherent with chronic lung dis-eases. This fact has led to the proposal that
educating patients and families about the uncer-tainty in prognosis of lung diseases must be anessential feature of end-of-life care and decision
making [53].Research has shown that physician-patient
communication about end-of-life issues and treat-
ment preferences is commonly inadequate. Heff-ner and colleagues [56] asked 105 patients whohad chronic lung disease about their attitudesregarding advanced directives. Less than half of
the patients had completed an advanced directive,and although nearly all participants wanted infor-mation about advanced directives and life sup-
port, less than 20% had had such discussionswith their doctors and less than 15% felt that theirdoctors understood their wishes. In a study of 115
patients who had oxygen-dependent COPD, Cur-tis and colleagues [57] found that only one third ofpatients had discussed end-of-life care with their
physicians. Most patients reported that their phy-sicians did not discuss how long the patients had
to live, what dying might be like, or patients’ spir-ituality. In a qualitative study, Curtis and col-
leagues [58] also found that in comparison to
804 STAPLETON & CURTIS
patients who had AIDS and cancer, patients whohad COPD were more likely to be troubled aboutthe lack of education they received about their dis-
ease and were more likely to want more informa-tion from their physicians about several topics,including prognosis, advanced care planning,and what dying might be like.
Because patient-physician communicationabout the end-of-life care seems to be insufficientand leaves many patients with unmet needs, it is
important that we understand the barriers toeffective communication. Two studies have in-vestigated such barriersdone a US study of
perceptions of patients and physicians [59] andthe other a UK study of the views of general prac-titioners [60]. Barriers for patients to communicat-ing about palliative care include wanting to focus
on staying alive, unwillingness to discuss beingsick, changing treatment preferences, and lack ofknowledge about the type of care and who the
treating physician will be in the event of an acuteillness. Barriers for physicians include feeling illprepared to discuss the issue adequately, lack of
accurate prognostic information, lack of time,and difficulty in starting these discussions withpatients.
Even when communication between physiciansand patients does occur, there may be a mismatchof expectations when making decisions about end-of-life treatment preferences. In a study of more
than 5000 seriously ill patients (one third hadCOPD or respiratory failure), Wenger and col-leagues [61] found that 64% of patients wished to
receive cardiopulmonary resuscitation (CPR) and36% of patients wanted to forgo it. When patientswanted to receive CPR, physicians clearly under-
stood their preferences 86% of the time; however,physicians only understood patients’ wishes 46%of the time among patients wanting to forgoCPR. As a result of this misunderstanding,
many patients who wished to forgo CPR in thisstudy underwent a resuscitation attempt, andmost of them died in the hospital.
One aspect of communication with olderadults that is important for physicians to un-derstand is the increased importance that older
adults place on the burden of treatments. Foryounger adults, the burden of treatments isrelatively less important, but it becomes a much
more important issue with increased age [62,63].Consequently, physicians should include the po-tential burdens of short- and long-term mechani-cal ventilation in their discussions of treatment
preferences with older adults.
Current available data indicate that palliativecare for patients with lung diseases is ofteninadequate. This inadequacy may be largely
caused by poor or infrequent patient-physiciancommunication about end-of-life care and treat-ment preferences. Many barriers to effectivecommunication exist, and understanding these
barriers is likely an important step toward im-proving communication.
Role of depression in decision making
Depression frequently complicates the care ofolder patients and patients with chronic lung
diseases. Approximately 2% of older people inthe community and 9% of older chronically illadults are depressed, compared with 6% of thegeneral adult population [64]. Geriatric inpatients
and nursing home residents have a much higherprevalence of depression, estimated to be between36% and 47% [65,66]. Using the Geriatric De-
pression Scale and the Medical Outcome Sur-vey–Short Form 36 (SF-36) to assess depressionin 109 patients who had severe COPD (mean
age, 71 years), Lacasse and colleagues [67] foundthat 57% of patients had significant depressivesymptoms and that 18% were severely depressed.
Only 6% of patients who met the criteria for de-pression were taking an antidepressant drug. Inanother investigation, van Manen and colleagues[68] examined depressive symptoms in patients
who had COPD and in controls and found thatthe prevalence of depression was 25% in patientswho had severe COPD (FEV1 ! 50% predicted),
17.5% in controls, and 19.6% in patients who hadmild to moderate COPD.
We examined 101 patients who had oxygen-
dependent COPD (mean age, 67.4 years), and45% of patients had symptoms suggestive ofdepression as measured by the Center for Epide-
miologic Study – Depression survey [69]. Wefound that a higher burden of depressive symp-toms in these patients was significantly associatedwith a preference against CPR. These findings are
similar to two other studies, neither of which spe-cifically investigated patients who had COPD[70,71]. A prior report from the same group of
patients showed that patients who were depressedrated the quality of patient-physician communica-tion about end-of-life care significantly lower than
patients who were not depressed [57]. It is notclear whether this finding reflects an effect of de-pression on patients’ ratings of the quality of
805END-OF-LIFE CONSIDERATIONS IN OLDER PATIENTS WHO HAVE LUNG DISEASE
communication or whether the quality of patient-physician communication is negatively influencedby depression.
The fact that depression may influence decision
making about life-sustaining therapies impliesthat treatment of depression might change end-of-life treatment preferences for these patients,
and several studies have examined this hypothesis.The SUPPORT study found that among patientswho initially preferred do-not-resuscitate status,
persons whose depression score improved sub-stantially over 2 months of follow-up were fivetimes more likely to change treatment preferences
to wanting CPR than patients whose depressionscores did not improve [71]. Ganzini and col-leagues [72] examined the treatment preferencesof 43 elderly depressed patients before and after
treatment of the depression and found a clinicallyevident change in the preferences of the 11 pa-tients who initially were rated as more severely
depressed. Eggar and colleagues [73] also investi-gated the CPR preferences of 49 older depressedpatients before and after depression treatment
and found that 16 of 17 patients who initially de-clined CPR accepted CPR after treatment fordepression.
Coexisting depression plays a significant role indecision making at the end of life because it seemsthat depression may influence treatment prefer-ences for life-sustaining therapies. Because prior
research suggested that clinical depression amongpatients who have severe COPD responds toantidepressant therapy [74], clinicians who care
for older patients with lung diseases shouldevaluate patients for depression and realize thatspontaneous or therapy-induced improvement in
depressive symptoms should warrant a reassess-ment of patients’ treatment preferences.
Talking about end-of-life care with patients
and their families
When should we talk about end-of-life care with
patients and families?
It is difficult to be prescriptive about the‘‘right’’ time to discuss end-of-life care with olderpatients who have chronic lung disease, except to
say that we should talk about it as soon aspossible and earlier than we usually do. Often,clinicians fail to discuss end-of-life issues and
treatment preferences while their patients arerelatively well and able to participate in decisionmaking. If these discussions do not take place,
goals of care are not established, and a patientrequires hospitalization or even an ICU stay inwhich he or she may be unable to communicatewishes, the burden of decision making then falls
on family members and loved ones who may notknow a patient’s preferences. A potential solutionto these difficulties is to begin discussions with
patients who have chronic lung diseases early inthe course of their care. These discussions canoccur over the course of several outpatient visits
during which the focus can be on prognosis, goalsof therapy, minimally acceptable quality of life,and the patient’s values and attitudes toward
medical therapy. These discussions may fore-shadow or set the stage for subsequent discussionsabout withholding life-sustaining treatments, de-pending on each patient’s wishes.
How should we talk about end-of-life care?
Because discussing end-of-life care with pa-tients and families is an important part of pro-viding high-quality medical care, we should
approach these discussions with the same careand planning that we approach other importantmedical procedures. Box 1 outlines some of the
steps that may facilitate good communicationabout end-of-life care (described in more detaillater).
Making preparations before a discussion
A common mistake is to embark on a discus-sion about end-of-life care with a patient andfamily without having prepared for the discussion.
Clinicians should review the medical record andthe patient’s disease process, including the prog-nosis, treatment options, and likely outcomes. It isalso important for clinicians to review what they
know about the patient and family, including theirattitudes toward illness, treatment, and death. It isalso useful for clinicians to consider their own
feelings of anxiety or guilt. Acknowledging thesefeelings explicitly to oneself can help cliniciansavoid projecting feelings or biases onto patients or
family. Finally, if a patient has many health careproviders, the clinician leading the discussionshould attempt to ensure that all appropriateclinicians are consulted about their opinions of
the patient’s prognosis. It also may be appropriateto invite other providers to be present at one ormore of the discussions about end-of-life care.
Holding a discussion about end-of-life careThese discussions often start with opening
comments and introductions followed by an
806 STAPLETON & CURTIS
Box 1. Components of a discussion about end-of-life care
I. Making preparations before a discussion about end-of-life care:� Review previous knowledge of the patient and/or family� Review knowledge of the disease, prognosis, and treatment options� Examine clinician’s own personal feelings, attitudes, and biases
II. Holding a discussion about end-of-life care:� Introduce everyone present� If appropriate, set the tone in a nonthreatening way: ‘‘This is a conversation I like to have
with all of my patients and their families.’’� Find out what the patient or family understands� Discuss a prognosis frankly in a way that is meaningful to the patient and demonstrates
that the clinician cares for the patient and family� Avoid temptation to give too much medical detail� If the discussion leads to wishes to withhold life-sustaining treatment, make it clear that
deciding to withhold such treatment is NOT withholding caring� Use active listening and allow the patient and family adequate time to speak� Acknowledge strong emotions and use reflection to encourage patients or families to
talk about these emotions� Respond empathetically to tears or other grief behavior� Tolerate silence
III. Finishing a discussion of end-of-life care:� Achieve common understanding of the disease and treatment issues� Make a recommendation about treatment� Ask if there are any questions� Ensure a basic follow-up plan and make sure the patient and/or family knows how to
reach the clinician for questions
exchange of information in which a clinicianupdates patients and family about a patient’s
illness and treatments and the clinician, in turn,is made aware of the patient’s values. Theconversation often turns to discussion of the
future, including prognosis for survival and qual-ity of life. If a patient’s illness is advanced andsurvival is limited, this is also the time when the
discussion of death and what dying might be likeoccurs. Finally, there is often a discussion of thedecisions to be madedeither at this conference orin the futuredand closing comments are made by
the patient and clinicians.If multiple family members are present during
the information exchange, not everyone will have
the same level of understanding of the patient’scondition. It is often helpful to first find out whata patient or family understands of the patient’s
illness. This can be a useful way for the clinician todetermine how much information can be given,the level of detail that can be understood, and the
amount of technical language that can be used.Clinicians should be careful to avoid unnecessarytechnical jargon. It is important to avoid the
temptation to give too much detail about thephysiology or pathophysiology as a way to avoid
our own discomfort, but we should be aware thatsome patients or families may want to hear thistype of detail.
During these discussions, it is important todiscuss prognosis in an honest way that ismeaningful to patients and their families. For
example, median survival is not meaningful tomost patients. Most experts recommend thatclinicians use quantitative estimates of prognosis(such as 50% chance of surviving 1 year) rather
than qualitative statements (such as a ‘‘poor’’prognosis) because it increases the chances thatpatients will understand. In discussing prognosis,
clinicians also should be honest about the degreeof uncertainty in the prognosis, but it can behelpful to provide this information in a way that
makes it clear that the clinician cares for thepatient and the family.
It is important in discussions about end-of-life
care that the patient and family understand that ifthe decision is made to withhold life-sustainingtreatment, such as mechanical ventilation,
807END-OF-LIFE CONSIDERATIONS IN OLDER PATIENTS WHO HAVE LUNG DISEASE
clinicians themselves are not withholding from‘‘caring’’ for the patient. This information mayseem obvious to some clinicians, but it should bestated explicitly to patients and families to avoid
any misunderstanding. Patients and families wantto know that no matter what treatment prefer-ences they may have, they will be cared for,
comfortable, and not abandoned by their healthcare providers.
After discussing prognosis and treatment op-
tions, it is important to spend some time exploringpatients’ reactions to what was discussed. It canbe helpful to repeat what a patient has said as
a way to show that the clinician has heard him orher. This form of active listening can be particu-larly useful when clinicians and patients havediffering views. Second, it is important to ac-
knowledge emotions that come up in these dis-cussions. It is useful for clinicians to acknowledgeemotions in a way that allows the person with the
emotion to talk about his or her feelings. Inacknowledging such emotions, it can be usefulfor clinicians to use reflection to show empathy
and encourage discussion about the emotion. Forexample, a clinician can say ‘‘It seems to me thatyou are very scared of getting sicker. Can you tell
me more about that?’’ as a way to show someempathy and to allow a patient to talk about hisor her feelings. It also can be helpful for cliniciansto provide support for decisions that patients
make by acknowledging the difficulty of thesituation and valuing patients’ comments. Finally,another technique clinicians can use in discussions
with patients is tolerating silences. Sometimesafter what seems like a long silence, patients orfamily members ask a particularly difficult ques-
tion or express a difficult emotion.
How should we finish a discussion about end-of-lifecare?
Before finishing a discussion about end-of-lifecare, there are several steps that clinicians shouldmake. First, it is important that clinicians makerecommendations during the discussion. With the
increasing emphasis on patient autonomy, theremay be a tendency for some clinicians to describethe treatment options without making a recom-
mendation. On the contrary, it is important thatclinicians offer their expertise to patients, and partof offering their expertise is making a recommen-
dation. Second, it is important to remind patientsthat their decisions are not permanent and can bechanged at any time if they wish.
Before finishing a discussion about end-of-lifecare, clinicians should summarize the majorpoints and ask patients if they have any questions.This is a good time to tolerate silence, because it
may take a while for the uncomfortable questionsto surface. Before completing a discussion aboutend-of-life care, clinicians also should ensure that
there is an adequate follow-up plan, which oftenmeans a plan for ongoing discussions at futurevisits. Finally, it is important to outline the steps
that patients should take to make their wishesknown and recorded so that these wishes can beperformed in the event that their condition de-
teriorates (see following discussion).
How can we help patients with the decision
to withhold cardiopulmonary resuscitationor mechanical ventilation?
Frequently, part of the decision for patients
with lung disease is whether they want to receiveCPR in the event of cardiac arrest. In our opinion,in helping patients make this decision, it isimportant that advanced cardiac life support not
be broken into components but rather presentedas a package. Breaking advanced cardiac lifesupport into components (chest compressions,
antiarrhythmic drugs, vasopressor agents, intuba-tion) makes these decisions unnecessarily complexand can lead to an absurd resuscitation status,
such as compressions and all drugs but no in-tubation. With regard to mechanical ventilation inthe event of respiratory failure, the procedures of
intubation and mechanical ventilation should beexplained to patients in understandable terms.
How can we help patients carry out their wishes?Once patients have decided on their wishes for
end-of-life care, several important steps must be
taken that should be explained to the patient.First, clinicians should advise patients to legallydesignate a durable power of attorney for healthcare, who should be a person a patient trusts to
carry out his or her wishes at the end of life. Thisdecision is particularly important if a person thepatient would choose is not the person designated
by state law. Second, patients should clearlycommunicate their wishes to this power of attor-ney so that they are well understood. These wishes
should be clearly communicated with the patients’health care providers. Finally, if the decision hasbeen made to forgo CPR, the patient should
complete an advanced directive and tell the powerof attorney where it is kept so that it can be foundat a later date if needed.
808 STAPLETON & CURTIS
Understanding clinicians’ own discomfort
discussing death
Discomfort discussing death is universal. This
is not a problem unique to physicians, nurses, orother health care professionals but has its roots inour society’s denial of dying and death. Withmany medical schools, nursing schools, and health
care textbooks providing little education aboutend-of-life care, it is not surprising that manyclinicians have difficulty discussing this topic with
their patients and families. Clinicians also mayfeel that a patient’s eventual death reflects poorlyon their skills as health care providers and
represents a failure on their part to save a patient’slife.
It is important for clinicians to recognize thedifficulty they have discussing dying and death. If
clinicians acknowledge this difficulty, they canwork to minimize some of the common effectsthat such discomfort can take. For example,
discomfort discussing death may cause cliniciansto give mixed messages about a patient’s progno-sis or use euphemisms for dying and death. This
discomfort in discussing dying and death even cancause clinicians to avoid speaking with a patientor family. Recognizing this discomfort and being
willing to confront it are the first steps in over-coming these barriers to effective communicationabout dying and death with patients and theirfamilies.
Summary
The intent of palliative care is to prevent and
relieve suffering and support a reasonable qualityof life for patients and their loved ones. Over thepast few decades, palliative care measures havefocused largely on patients who have cancer.
Malignancy-based palliative care models, how-ever, have not been applied effectively to patientswho have chronic lung disease.
Patients with lung disease have a reducedquality of life and a burden of symptoms that isat least as great asdif not greater thandpatients
who have cancer. Patients with lung diseasecommonly experience significant pain, dyspnea,and fatigue. Dementia and delirium also can playa significant role in older patients. Research
suggests that patients who have COPD receivesuboptimal palliative care, which may be causedby inadequate communication with their physi-
cians. When patients have made decisions aboutlife-sustaining therapies, physicians often either
do not know patients’ wishes or misunderstandthem. Depression, which is common in olderpatients with chronic illness, may influence pa-
tients’ decisions about end-of-life care. Cliniciansshould realize that most patients want moreinformation about end-of-life care and that effortsto initiate and improve communication with
patients are important. Further research thatinvestigates and defines interventions to improveand optimize communication and delivery of
high-quality palliative care is sorely needed forpatients with chronic lung disease.
Discussing end-of-life care and death with
patients and their families is an important partof providing good quality medical care. Althoughthere is little empiric research to guide clinicians inthe most effective way to have these conversa-
tions, there is increasing emphasis on making it animportant part of the care we provide. Much likeother medical procedures or skills, providing
sensitive and effective communication about end-of-life care requires training, practice, and prepa-ration. Different clinicians may have different
approaches and should change their approach tomatch the needs of individual patients and theirfamilies.
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