Original Article
Understanding the Views of Those Who Care for Patients With Cancer on Advance Care Planning and End-of-life Care
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(8) 802-809 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114540035 ajhpm.sagepub.com
Malcolm D. Mattes, MD1, Kaity Tung, BA1, Rachel Baum, BA1, Kapila Parikh, MD1, and Hani Ashamalla, MD1
Abstract An electronic survey was used to assess the views of a diverse nationwide cohort of health care professionals regarding advance care planning and end-of-life care. A total of 645 responses were received. If diagnosed with a serious incurable illness with limited life expectancy, 97% would want to discuss their prognosis, 74% would refuse cardiopulmonary resuscitation, and 72% favored supportive/comfort care to more aggressive life-prolonging treatments. However, prognosis was thought to be discussed with only 52% of such patients, and just 5% thought doctors were either very or extremely successful at explaining advanced life-sustaining treatments to patients. Greater than 90% believed these discussions should best occur when a patient is thought to have one or more years to live and 80% thought they are best initiated in the outpatient setting. Keywords advance care planning, advance medical planning, attitude to death, end-of-life care, cancer, oncology, prognosis, palliative care
Introduction End-of-life care in the United States is notable for marked contrasts between most Americans’ stated goals and the actual care received. For instance, the majority of Americans prefer full disclosure of prognostic information, but prognosis is infrequently discussed with patients, as physicians tend to focus on treatment plans instead.1-4 The majority of Americans also favor less aggressive treatments when a poor functional outcome is anticipated and approximately 75% would ultimately prefer to die at home, but more than 50% of Medicare beneficiaries die in a hospital or in a nursing home and only 33% die at home.5-11 Advance care planning is a process of formal decision making that aims to help patients establish decisions about future medical care that would take effect should they lose capacity.12 By nature these discussions are highly individualized to the patient and are challenging in the sense that defining a patient’s unique goals and wishes can be a dynamic process that fluctuates with their overall state of health, quality of life, family variables, and social factors. Nonetheless, randomized trials including those utilizing the Physician Orders for Life Sustaining Treatment (POLST) form and the Respecting Choices program have demonstrated that a coordinated approach to advance care planning can reduce the incidence of inappropriate resuscitations, improve outcomes for patients, and reduce stress, anxiety, and depression in surviving relatives.13-21 However, as the aforementioned studies suggest, adoption of advance
care planning by the medical community at large and improvement in end-of-life care has been slow, indicating that barriers to advance care planning continue to persist in contemporary practice. Several single-institution studies conducted in the 1990’s have assessed health care professional’s personal/institutional experience with advance care planning for both themselves and their patients,22-28 but there are limited data available on how a nationwide cohort of contemporary physicians who frequently manage patients with limited life expectancy view the efficacy of the health care system in general regarding advance care planning and end-of-life care in the United States. Health care professionals’ views on the optimal timing, setting, and personnel for these discussions are also not well defined. It is the goal of this study to better assess these topics, by surveying a cross-sectional cohort of physicians and other health care professionals who care for patients with cancer in the United States.
1
Department of Radiation Oncology, New York Methodist Hospital, Brooklyn, NY, USA
Corresponding Author: Malcolm D. Mattes, MD, Department of Radiation Oncology, New York Methodist Hospital 506 6th St, Brooklyn, NY 11215, USA. Email: [email protected]
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Methods
questions for a given respondent were included in the analysis of that question. Responses were anonymous, and participants were not asked to report their specific institution. Through use of an e-mail invitation that uniquely tied the survey link to a given e-mail address, it was ensured that each respondent only filled out a single survey. Participants were able to edit or go back to previous questions until the survey was submitted, at which point no further editing was possible. In order to protect against unauthorized access to personal information, the SurveyMonkey account was password protected and Secure Sockets Layer encryption was enabled. Descriptive (summary) statistics are reported for the entire population of participants, with data presented as frequency counts, percentages, medians (with range), and means (with standard deviation [SD]), as indicated. Likert-type scales were treated as continuous variables, with 2-tailed Student’s t tests used to compare the mean responses for some questions. Statistical analysis was performed using Statistical Package for Social Sciences 20.0 (IBM Corporation, Chicago, Illinois). This study was approved by the local institutional review board.
An electronic survey was developed by the authors of this article in order to address the objectives described previously, in accordance with applicable CHEcklist for Reporting Results of Internet E-Surveys (CHERRIES) criteria.29 All questions and answer choices can be found in Tables 1 and 2. The design of questions and their selection for inclusion was guided by our study group’s clinical experience as well as previously published surveys of patients and health care professionals on related topics.22-28 Question formats included multiplechoice and Likert-type scales (from 1 to 5, with 1 being the worst, lowest or least likely option and 5 being the best, highest or most likely option, depending on the question). The answer options to multiple-choice questions were chosen to be fully inclusive and as unambiguous as possible, including an opt-out type of answer (eg, ‘‘unsure’’ or ‘‘other’’). After every question, participants had the option to comment on the reasoning behind their answer choice. Several questions referred to a ‘‘serious incurable illness,’’ described as, for instance, a stage IV cancer or end-stage organ disease, which for some questions was stated as being associated with a specific prognosis/life expectancy of 6 months or less. Excepting the section assessing what participants would want for themselves, questions were worded to determine participants’ perception of doctors or the health care system in general rather than their own personal practice. The way in which participants interpreted the term ‘‘doctors’’ was not specified but was intended to refer to doctors in general (of no particular subspecialty). Questions were tested by administering the survey to volunteers from our institution in various disciplines to ensure that the questions were understood by respondents, and there were no significant impediments that might adversely affect survey cooperation. The survey was disseminated via personalized e-mail using SurveyMonkey to all health care professionals in the United States who were thought to have contact with patients with advanced stage cancer. This included all radiation oncologists, medical oncologists, surgical oncologists, nurses, and palliative care physicians listed in the 2013 American Society for Radiation Oncology (ASTRO, www.astro.org) and American Society of Clinical Oncology (ASCO, www.asco.org) online databases. The survey was disseminated between January and July 2013, with up to 5 monthly e-mail reminders sent to those who had not yet responded (those who did respond were not sent any further invitations to take the survey). The first page of the survey provided information on the investigator, length of the survey (15-20 minutes), purpose of the study, and electronic consent. Participation was voluntary. As an incentive to participate, those who completed the survey were offered the option of entering their contact information into a raffle to receive a US$10 gift card. Participants were encouraged to complete every question, although they were allowed to skip any questions that they preferred not to answer. Only respondents who completed at least 75% of the questionnaire were included in the subsequent analysis, and only fully completed individual
Results The survey was e-mailed to 5595 health care professionals, viewed by 763 unique survey visitors, and 645 visitors agreed to participate and completed the survey (12% response rate). The demographics of the participants are shown in Table 3. The median age was 49 (range 26-87). The majority of respondents were doctors, worked in oncology, had greater than 10 years of experience, were female, and were caucasian. Christianity was the most common religion, and the mean Likert rating regarding the importance of religion/spirituality in participants’ lives was 3.18 (SD 1.36) or moderately important. For patients with a serious incurable illness, participants believed that patients’ emotional needs were less adequately cared for than their physical needs (mean Likert rating 2.13 [SD 0.84] vs 3.11 [SD 0.90], P < .01). In addressing these needs, 77% felt that palliative care doctors were very or extremely helpful (mean Likert rating 4.08 [SD 0.95]). Patients who were more aware of their life expectancy were thought to be very likely to make better medical decisions for the remainder of their life (mean Likert rating 3.86 [SD 0.84], personal decisions for the remainder of their life (mean Likert rating 4.00 [SD 0.82]), and be more emotionally prepared for dying (mean Likert rating 3.81 [SD 0.90]). However, participants thought that only 52% (SD 24%) of patients with a serious incurable illness undergo a discussion about their prognosis with their doctor. In regard to advanced life-sustaining treatments in patients with a serious incurable illness, 84% of participants believed that more aggressive treatments toward the end of life do not usually lead to better patient and family satisfaction or quality of life. Ninety-four percent responded that when a patient is able to express their medical wishes for the end of their life and those wishes are successfully carried out the way they wanted, it decreases the amount of stress or anxiety that their
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Table 1. Survey Questions and Answer Choices Assessing Participants’ Views on Discussing Prognosis and Life-sustaining Treatments. Question
Answer choices
1a and b (Likert scale): How well do you think doctors know how to take care of the (1a) emotional and (1b) physical needs of patients with a serious incurable illness?
2 (Likert scale): How helpful do you think palliative care doctors tend to be at helping other physicians address the emotional and physical needs of patients with a serious incurable illness?
3a-c (Likert scale): For patients with a serious incurable illness, do you believe that patients who are more aware of their life expectancy tend to: (3a) make better medical decisions for the remainder of their life? (3b) make better personal decisions for the remainder of their life? (3c) be more emotionally prepared for dying? 4 (rating scale): What percentage of patients with a serious incurable illness would you say that doctors discuss prognosis with? 5 (multiple choice): For patients with a serious incurable illness, do you think that more aggressive treatments toward the end of life usually lead to better patient and family satisfaction and quality of life? 6 (multiple choice): Do you think that when a patient is able to express their medical wishes for the end of their life, and those wishes are successfully carried out the way they wanted, it would decrease the amount of stress or anxiety that their family experiences around the time of, and in the months after their death? 7 (multiple choice): Do you think that most patients have a clear enough understanding of CPR, in terms of its risks, benefits, and success rates, in order to make an educated decision as to whether they would want it performed on them? 8 (Likert scale): How successful do you think most doctors are at explaining/clarifying advanced life-sustaining treatments with their patients?
9 (multiple choice): In your experience, are these types of discussions easier if facilitated by a palliative care physician?
10 (multiple choice): When do you think would be the most appropriate time for a doctor to initiate a discussion with their patient about their (10a) life expectancy and (10b) medical preferences for the rest of their life (for instance, whether to undergo CPR, intubation, mechanical respiration, receive artificial nutrition, etc)? For this question, assume that medical preferences can be changed at any time if a patient’s values change. 11 (multiple choice): Who do you think is the more appropriate person to initiate the type of discussion described in the previous question?
12 (multiple choice): In what setting would it be best to discuss these sorts of issues with a patient? 13 (multiple choice): Do you think that if most patients were given a free opportunity to discuss their medical wishes for the end of their life with a health care professional when they are healthy (and at no risk of dying anytime soon) so as to plan for the future, they would take it? 14 (multiple choice): How would you feel about a policy requiring every person who reaches a certain elderly age to discuss their medical wishes for the end of their life with a health care professional (assuming that no decisions have to be made, and any decisions that are made can still be changed if the person’s values change with time)? 15 (multiple choice): How do you think most Americans would answer the previous question?
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(1) Not at all well (2) Slightly well (3) Moderately well (4) Very well (5) Extremely well (1) Not at all helpful (2) Slightly helpful (3) Moderately helpful (4) Very helpful (5) Extremely helpful (1) Not at all likely (2) Slightly likely (3) Moderately likely (4) Very likely (5) Extremely likely 0%-100% -
Yes No Not sure Yes No Not sure
- Yes - No - Not sure (1) Not at all successful (2) Slightly successful (3) Moderately successful (4) Very successful (5) Extremely successful - Yes - No - Somewhat/partially - Not sure See the Figure 1 legend for answer choices
- A doctor who has known the patient for many years - A doctor who has only recently met the patient - Both equally appropriate - Other - Inpatient - Outpatient - Other - Yes - No - Not sure - I would have no problem with that policy - I would have significant problem with that policy - Not sure - They would have no problem with that policy - They would have a significant problem with it - Not sure
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Table 2. Survey Questions and Answer Choices Assessing What Participants Would Want for Themselves. Question
Answer Choices
16 (multiple choice): At what approximate age do you plan to complete an advance - Never directive or assign a health care proxy? - Age 40-49 - Age 50-59 - Age 60-69 - Age 70-79 - Age >80 - Not applicable 17 (Likert scale): How much of the medical decisions you make about the end of - None of the decisions - Few of the decisions your life do you think you could make at a time when you are completely - Some of the decisions healthy? - Most of the decisions - All of the decisions 18 (multiple choice): If you were diagnosed with a serious incurable illness (with - Yes estimated life expectancy * 6 months), would you want your doctor to discuss - No - Not Sure your prognosis with you? - Yes 19 (multiple choice): If you had a serious incurable illness (with estimated life - No expectancy * 6 months), and CPR was acutely necessary to save your life, - Not sure would you want it done to you? 20 (multiple choice): If you were told by your doctors that you most likely have less - Active treatments (geared more toward extending life, than 6 months to live regardless of the treatments you receive, what kinds of with some possible associated side effects) - Supportive care (geared more toward maximizing treatments would be most important to you? comfort than extending life) - Both are equally important 21 (multiple choice): Is there such thing as a ‘‘good’’ and a ‘‘bad’’ death, or is all - Yes, there is a difference death equal? - No, all death is equal - Not sure - At home 22a-c (multiple choice): If given the choice, where do you think: - In a hospital (22a) you would want to die? - In a nursing facility (22b) most people in the USA would want to die? - Other (22c) most people in the USA actually die?
family members experience around the time of and in the months after the patient’s death. However, 89% of the participants believed that most patients lack a clear enough understanding of cardiopulmonary resuscitation (CPR; in terms of its risks, benefits, and success rates) in order to make an educated decision as to whether they would want it performed on them, and only 5% of the participants felt that doctors were either very or extremely successful at explaining advanced life-sustaining treatments to patients (mean Likert rating 2.56 [SD 0.71]). Seventy-eight percent believed that a palliative care physician makes these discussions at least somewhat easier. Participants’ views on the optimal timing to discuss life expectancy and medical preferences related to advanced lifesustaining treatments are summarized in Figure 1. A doctor who has known the patient for many years was considered more appropriate to initiate a discussion about advanced lifesustaining treatments than a doctor who has only recently met the patient (22% vs 2%, respectively), although 73% responded that either was equally appropriate. Furthermore, 80% believed that this discussion would best take place when the patient is an outpatient in a clinic (as opposed to during hospitalization). If a free opportunity was offered to patients to discuss their medical wishes for the end of their life with a health care
professional at a time when they are healthy (and at no risk of dying anytime soon), 60% thought that most patients would take this opportunity, 15% said most patients would not, and 26% were unsure. Similarly, 58% agreed with the concept of a policy requiring every person who reaches a certain elderly age to discuss their medical wishes for the end of their life with a health care professional, while 26% opposed such a policy and 16% were unsure. However, 62% thought that most Americans would be opposed to such a policy. Regarding what participants would want for themselves, by age 70, 95% of participants planned to complete an advance directive or assign a health care proxy. Of the participants, 77% felt that they could make most or all of their medical decisions regarding their end-of-life care at a time when they were completely healthy, and only 5% felt they could make few or none of these decisions. If the participant was diagnosed with a serious incurable illness (with estimated life expectancy *6 months), 97% would want their doctor to discuss their prognosis with them, and 74% would not want to undergo CPR even if it was acutely necessary to save their life (9% would want CPR and 18% were unsure). In this scenario, 72% favored supportive care geared more toward maximizing comfort, whereas 4% favored active treatments geared toward extending life, and 24% said that both were equally important. Ninety-two
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806 Table 3. Demographics of Participants.
50%
Characteristic
Occupation
Doctor Nurse Other allied health professional Oncology Palliative care Other Resident/fellow 1-10 years in practice 11-20 years in practice 21þ years in practice US$500 000 Female Male Christian Jewish None Other Caucasian Asian Other Democrat Republican Independent/none Other
Subspecialty
Experience
Household income
Gender Religion
Race
Political party
Life Expectancy
Percentage 62 26 12 66 28 6 17 25 18 40 25 45 20 10 60 40 59 12 12 17 83 9 8 48 17 32 3
percent believed in a difference between a ‘‘good’’ and ‘‘bad’’ death. If given a choice, 86% preferred to die at home (6% in a hospital, 1% in a nursing facility, and 7% other), and it was felt that most Americans had similar preferences (87%, 10%, 1%, and 2%, respectively). However, it was thought that 81% of Americans actually die in a hospital (12% in a nursing facility, 6% at home, and 1% other).
Discussion Recent data suggest that end-of-life care in the United States is characterized by an increasingly aggressive trend, as from 2000 to 2009, the rate of patient movement between settings in the last 90 days of life has tripled, intensive care unit (ICU) admission within the final 30 days of life has increased to 29%, and although hospice use has doubled, 30% of patients are in hospice for 3 days or fewer before dying and 40% come from an ICU before transfer.11 Although extraordinary interventions are clearly reasonable in most patients who are young or become seriously ill unexpectedly, for a patient who is elderly or has limited life expectancy from an incurable illness, it is less clear whether these aggressive measures do more good or harm. Previous studies have shown that most patients and physicians favor less aggressive treatments in the case of terminal illness or when a poor functional outcome is anticipated,23,30,31 and the participants in this study agree that for a patient with a serious incurable illness, more aggressive
Percentage of Respondents
Category
Medical Preferences
40%
30%
20%
10%
0% A
B
C
D
E
F
Figure 1. Optimal Timing for Initiating a Discussion About Life Expectancy and Medical Preferences. Participants were asked when the best time is for a doctor to initiate a discussion with their patient about their life expectancy and medical preferences for the rest of their life (for instance, whether they would choose to undergo CPR, intubation, mechanical respiration, receive artificial nutrition, etc). Answer choices included (A) The doctor should not initiate this sort of discussion. It should only take place if the patient initiates it; (B-E) When the patient is diagnosed with a serious illness and it is thought that he/she has less than 1 week, 1 month, 1 year, and 5 years to live, respectively; (F) When the patient reaches a certain elderly age (regardless of their state of health).
treatments toward the end of life do not usually lead to better patient and family satisfaction or quality of life. Furthermore, our findings confirm a discrepancy between the type of care health care professionals want and the care that they see most patients as receiving, as while the majority of our participants are proponents of discussing prognosis and advance care planning (both for themselves and their patients), most do not believe that doctors do an adequate job of initiating or carrying out such discussions, resulting in patients who are not felt to be well informed about these issues and doctors who are less able to meet their needs. Understanding the views and choices of physicians and other health care professionals about these issues is relevant to patient care because many of them have more experience with death, dying, and treatment options toward the end of life than other members of the general public and as such could provide valuable insight into these issues that patients and families might learn from as they make decisions for themselves. There is also a correlation between physicians’ attitudes and those of their patients,22,32,33 and as such it would be useful for physicians to have knowledge of the collective views of their colleagues when faced with questions like, ‘‘what would you do if you were me?’’ Interestingly, although our data indicate that 95% of participants plan to complete an advance directive or assign a health care proxy by age 70, Gallo et al showed that only 64% of older physicians (median age 68) in a variety of specialties actually completed an advance directive,28
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possibly suggesting that even among health care professionals (let alone the general public) barriers to advance care planning exist. Our participants’ comments regarding why they responded as they did help to define these barriers and highlight a number of areas for improvement, which included inadequate formal training in patient–physician communication related to these issues, medical-legal concerns regarding withholding advanced life-sustaining treatments at the end of life, a general lack of financial reimbursement to compensate physicians for the amount of time these discussions often entail, and a cultural incapacity of both physicians and the general public to confront issues related to mortality. Although our study does not evaluate solutions to all of these issues, we were able to obtain valuable information on what health care professionals see as the optimal clinical approach to the timing, setting, and personnel for advance care planning discussions, a topic which is not well addressed in previous studies. Interestingly, most participants believed that it was not essential for these discussions to be carried out by a health care professional who has a long-standing relationship with the patient, a finding which supports the role of palliative care physicians or other support staff who specialize in eliciting a patient’s goals and wishes to play an active role in this aspect of patient care. The majority of participants also believed that optimally these discussions should take place when a patient is diagnosed with a serious incurable illness and has one or more years to live (rather than 1 month or less) and are better undertaken in the outpatient rather than the inpatient setting. Several participants commented that a potential downside of advance care planning at a time when a patient is healthier is that their values may change as their health deteriorates or when they are actually confronted with the prospect of impending death. On the other hand, waiting until a patient is ‘‘on the brink’’ of death has the disadvantage that the patient may not be fully capable of expressing their wishes at that time, leaving family members in a difficult situation in which the potential guilt of not ‘‘doing everything’’ for their relative may overcome the fact that most patients and physicians do not believe in the medical or ethical value of the interventions that ‘‘doing everything’’ encompasses. The timing of initiating discussions related to prognosis and advance care planning is complicated by the fact that physicians have little confidence in their ability to predict life expectancy in the first place, even in the case described in this study of a known incurable illness, for which data from randomized controlled trials are generally available for guidance. Several participants commented that their feeling of inadequacy in prognostication is due to patient variability, difficulties in applying population statistics to individual patients, and a frank awareness that they are often wrong. However, given that doctors are known to consistently overestimate survival,34-37 and it was thought in this study that only about half of patients ever discuss prognosis with their physician, a better clinical approach may be to initiate advance care planning early on rather than delay until a time when the physician believes it is more appropriate but more often than not is
actually too late. This may be enabled by further training, research, or improvement of prognostic models/algorithms in order to help physicians counsel their patients, and thus remedy a seemingly important barrier to initiating advance care planning. Several possibilities for novel reforms to increase the prevalence of advance care planning were also explored in this study, and although there was no consensus on how more accessible (ie, free) or compulsory advance care planning would be viewed and utilized by the general public, most of the health care professionals in our study would welcome these approaches. Those opposed to such policies commented that most people do not want to think about death so as to avoid fear or loss of control, whereas those in favor commented that if advance care planning was seen as a routine part of patient care then it would be more accepted by the public. Another clinical area that appears to be in great need of reform based on the results of this study is the way in which patients are educated about advanced life-sustaining treatments like CPR and based on the cited barriers to these discussions that participants commented on, solutions may include better physician and support staff training to increase their comfort level in initiating these discussions and developing educational resources to prime the patients for these discussions so that they are less time consuming for physicians. The most important limitation to this study is the selfselection bias inherent to any survey of this nature in which those who chose to respond may not be representative of the entire population of health care professionals who treat patients with cancer in the United States. It should be noted, though, that low response rates are not unusual for voluntary electronic surveys,29 and our response rate is likely underestimated due to the spam filter effect and the fact that an unknown number of the e-mail addresses from these online directories may have been unused or obsolete. The variety of demographics encompassed by our participants does suggest a relatively representative sample or at least that these issues are important to a variety of health care professionals, providing some reassurance of the validity of our findings. Furthermore, the median age and racial distribution of our participants were also similar to that reported for US physicians and oncologists nationwide, and while our participants encompassed a higher percentage of women than the 28% of female oncologists reported to be in the ASCO workforce, this is likely a consequence of including nurses and other allied health professionals in our study.38,39 It should be noted that while some previous studies sampled a wider array of physicians, an advantage of our study is that it targeted a group thought to have significant experience managing issues related to death and dying in their clinical practice, providing unique insight into these issues that may not be fully captured by a broader target population. Our inclusion of a variety of health care professionals also strengthens the data since each of the individuals surveyed interacts with dying patients and other members of the health care team in different ways. Along these lines, we hope to address the impact of demographic variables on responses to individual questions in a future study.
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Conclusion Health care professionals’ perceptions of end-of-life care in the United States indicate that significant barriers exist that prevent patients from achieving what they desire. Although there are likely to be a variety of solutions to remove these barriers, our participants highlighted the importance of developing better tools for prognostication and platforms to educate patients on advanced life-sustaining treatments and channeling more resources toward training physicians, nurses, or other health care professionals in palliative care. In describing the collective views of those most experienced with death and dying, we also hope to help direct a generally less experienced public so patients can be stronger advocates for themselves, and physicians are empowered to best serve their patients’ needs. Acknowledgment The authors would like to acknowledge the additional effort provided by Rebecca Kirch and Rebecca Sudore for their guidance in preparing this manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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27. Mebane EW, Oman RF, Kroonen LT, Goldstein MK. The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. J Am Geriatr Soc. 1999;47(5):579-591. 28. Gallo JJ, Straton JB, Klag MJ, et al. Life-sustaining treatments: what do physicians want and do they express their wishes to others? J Am Geriatr Soc. 2003;51(7):961-969. 29. Eysenbach G. Improving the quality of web surveys: the checklist for reporting results of internet E-Surveys (CHERRIES). J Med Internet Res. 2004;6(3):e34. 30. Rivera JR, Velazquez I, Anselmi FJ. Cardiopulmonary resuscitation: personal choices of physicians and nurses. Bol Asoc Med P R. 1992;84(4-5):139-143. 31. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274(20):1591-1598. 32. Schneiderman LJ, Kaplan RM, Pearlman RA, Teetzel H. Do physicians’ own preferences for life-sustaining treatment influence their perceptions of patients’ preferences? J Clin Ethics. 1993;4(1):28-33.
33. Christakis NA, Asch DA. Physician characteristics associated with decisions to withdraw life support. Am J Public Health. 1995;85(3):367-372. 34. Glare P, Virik K, Jones M, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ. 2003;327(7408):195-198. 35. Mackillop WJ, Quirt CF. Measuring the accuracy of prognostic judgments in oncology. J Clin Epidemiol. 1997;50(1):21-29. 36. Llobera J, Esteva M, Rifa J, et al. Terminal cancer: duration and prediction of survival time. Euro J Cancer. 2000;36(16):2036-2043. 37. Christakis NA, Lamont EB, Smith JL, Parkes CM. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. Br Med J. 2000;320(7233): 469-473. 38. Kirkwood MK, Kosty MP, Bajorin DF, Bruinooge SS, Goldstein MA. Tracking the workforce: the American Society of Clinical Oncology workforce information system. J Oncol Pract. 2013; 9(1):3-8. 39. Boukus E, Cassil A, O’Malley AS. A snapshot of U.S.physicians: key findings from the 2008 health tracking physician survey. Data Bull (Cent Stud Health Syst Change). 2009;(35):1-11.
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Understanding the Views of Those Who Care for Patients With Cancer on Advance Care Planning and End-of-life Care
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(8) 802-809 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114540035 ajhpm.sagepub.com
Malcolm D. Mattes, MD1, Kaity Tung, BA1, Rachel Baum, BA1, Kapila Parikh, MD1, and Hani Ashamalla, MD1
Abstract An electronic survey was used to assess the views of a diverse nationwide cohort of health care professionals regarding advance care planning and end-of-life care. A total of 645 responses were received. If diagnosed with a serious incurable illness with limited life expectancy, 97% would want to discuss their prognosis, 74% would refuse cardiopulmonary resuscitation, and 72% favored supportive/comfort care to more aggressive life-prolonging treatments. However, prognosis was thought to be discussed with only 52% of such patients, and just 5% thought doctors were either very or extremely successful at explaining advanced life-sustaining treatments to patients. Greater than 90% believed these discussions should best occur when a patient is thought to have one or more years to live and 80% thought they are best initiated in the outpatient setting. Keywords advance care planning, advance medical planning, attitude to death, end-of-life care, cancer, oncology, prognosis, palliative care
Introduction End-of-life care in the United States is notable for marked contrasts between most Americans’ stated goals and the actual care received. For instance, the majority of Americans prefer full disclosure of prognostic information, but prognosis is infrequently discussed with patients, as physicians tend to focus on treatment plans instead.1-4 The majority of Americans also favor less aggressive treatments when a poor functional outcome is anticipated and approximately 75% would ultimately prefer to die at home, but more than 50% of Medicare beneficiaries die in a hospital or in a nursing home and only 33% die at home.5-11 Advance care planning is a process of formal decision making that aims to help patients establish decisions about future medical care that would take effect should they lose capacity.12 By nature these discussions are highly individualized to the patient and are challenging in the sense that defining a patient’s unique goals and wishes can be a dynamic process that fluctuates with their overall state of health, quality of life, family variables, and social factors. Nonetheless, randomized trials including those utilizing the Physician Orders for Life Sustaining Treatment (POLST) form and the Respecting Choices program have demonstrated that a coordinated approach to advance care planning can reduce the incidence of inappropriate resuscitations, improve outcomes for patients, and reduce stress, anxiety, and depression in surviving relatives.13-21 However, as the aforementioned studies suggest, adoption of advance
care planning by the medical community at large and improvement in end-of-life care has been slow, indicating that barriers to advance care planning continue to persist in contemporary practice. Several single-institution studies conducted in the 1990’s have assessed health care professional’s personal/institutional experience with advance care planning for both themselves and their patients,22-28 but there are limited data available on how a nationwide cohort of contemporary physicians who frequently manage patients with limited life expectancy view the efficacy of the health care system in general regarding advance care planning and end-of-life care in the United States. Health care professionals’ views on the optimal timing, setting, and personnel for these discussions are also not well defined. It is the goal of this study to better assess these topics, by surveying a cross-sectional cohort of physicians and other health care professionals who care for patients with cancer in the United States.
1
Department of Radiation Oncology, New York Methodist Hospital, Brooklyn, NY, USA
Corresponding Author: Malcolm D. Mattes, MD, Department of Radiation Oncology, New York Methodist Hospital 506 6th St, Brooklyn, NY 11215, USA. Email: [email protected]
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Methods
questions for a given respondent were included in the analysis of that question. Responses were anonymous, and participants were not asked to report their specific institution. Through use of an e-mail invitation that uniquely tied the survey link to a given e-mail address, it was ensured that each respondent only filled out a single survey. Participants were able to edit or go back to previous questions until the survey was submitted, at which point no further editing was possible. In order to protect against unauthorized access to personal information, the SurveyMonkey account was password protected and Secure Sockets Layer encryption was enabled. Descriptive (summary) statistics are reported for the entire population of participants, with data presented as frequency counts, percentages, medians (with range), and means (with standard deviation [SD]), as indicated. Likert-type scales were treated as continuous variables, with 2-tailed Student’s t tests used to compare the mean responses for some questions. Statistical analysis was performed using Statistical Package for Social Sciences 20.0 (IBM Corporation, Chicago, Illinois). This study was approved by the local institutional review board.
An electronic survey was developed by the authors of this article in order to address the objectives described previously, in accordance with applicable CHEcklist for Reporting Results of Internet E-Surveys (CHERRIES) criteria.29 All questions and answer choices can be found in Tables 1 and 2. The design of questions and their selection for inclusion was guided by our study group’s clinical experience as well as previously published surveys of patients and health care professionals on related topics.22-28 Question formats included multiplechoice and Likert-type scales (from 1 to 5, with 1 being the worst, lowest or least likely option and 5 being the best, highest or most likely option, depending on the question). The answer options to multiple-choice questions were chosen to be fully inclusive and as unambiguous as possible, including an opt-out type of answer (eg, ‘‘unsure’’ or ‘‘other’’). After every question, participants had the option to comment on the reasoning behind their answer choice. Several questions referred to a ‘‘serious incurable illness,’’ described as, for instance, a stage IV cancer or end-stage organ disease, which for some questions was stated as being associated with a specific prognosis/life expectancy of 6 months or less. Excepting the section assessing what participants would want for themselves, questions were worded to determine participants’ perception of doctors or the health care system in general rather than their own personal practice. The way in which participants interpreted the term ‘‘doctors’’ was not specified but was intended to refer to doctors in general (of no particular subspecialty). Questions were tested by administering the survey to volunteers from our institution in various disciplines to ensure that the questions were understood by respondents, and there were no significant impediments that might adversely affect survey cooperation. The survey was disseminated via personalized e-mail using SurveyMonkey to all health care professionals in the United States who were thought to have contact with patients with advanced stage cancer. This included all radiation oncologists, medical oncologists, surgical oncologists, nurses, and palliative care physicians listed in the 2013 American Society for Radiation Oncology (ASTRO, www.astro.org) and American Society of Clinical Oncology (ASCO, www.asco.org) online databases. The survey was disseminated between January and July 2013, with up to 5 monthly e-mail reminders sent to those who had not yet responded (those who did respond were not sent any further invitations to take the survey). The first page of the survey provided information on the investigator, length of the survey (15-20 minutes), purpose of the study, and electronic consent. Participation was voluntary. As an incentive to participate, those who completed the survey were offered the option of entering their contact information into a raffle to receive a US$10 gift card. Participants were encouraged to complete every question, although they were allowed to skip any questions that they preferred not to answer. Only respondents who completed at least 75% of the questionnaire were included in the subsequent analysis, and only fully completed individual
Results The survey was e-mailed to 5595 health care professionals, viewed by 763 unique survey visitors, and 645 visitors agreed to participate and completed the survey (12% response rate). The demographics of the participants are shown in Table 3. The median age was 49 (range 26-87). The majority of respondents were doctors, worked in oncology, had greater than 10 years of experience, were female, and were caucasian. Christianity was the most common religion, and the mean Likert rating regarding the importance of religion/spirituality in participants’ lives was 3.18 (SD 1.36) or moderately important. For patients with a serious incurable illness, participants believed that patients’ emotional needs were less adequately cared for than their physical needs (mean Likert rating 2.13 [SD 0.84] vs 3.11 [SD 0.90], P < .01). In addressing these needs, 77% felt that palliative care doctors were very or extremely helpful (mean Likert rating 4.08 [SD 0.95]). Patients who were more aware of their life expectancy were thought to be very likely to make better medical decisions for the remainder of their life (mean Likert rating 3.86 [SD 0.84], personal decisions for the remainder of their life (mean Likert rating 4.00 [SD 0.82]), and be more emotionally prepared for dying (mean Likert rating 3.81 [SD 0.90]). However, participants thought that only 52% (SD 24%) of patients with a serious incurable illness undergo a discussion about their prognosis with their doctor. In regard to advanced life-sustaining treatments in patients with a serious incurable illness, 84% of participants believed that more aggressive treatments toward the end of life do not usually lead to better patient and family satisfaction or quality of life. Ninety-four percent responded that when a patient is able to express their medical wishes for the end of their life and those wishes are successfully carried out the way they wanted, it decreases the amount of stress or anxiety that their
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Table 1. Survey Questions and Answer Choices Assessing Participants’ Views on Discussing Prognosis and Life-sustaining Treatments. Question
Answer choices
1a and b (Likert scale): How well do you think doctors know how to take care of the (1a) emotional and (1b) physical needs of patients with a serious incurable illness?
2 (Likert scale): How helpful do you think palliative care doctors tend to be at helping other physicians address the emotional and physical needs of patients with a serious incurable illness?
3a-c (Likert scale): For patients with a serious incurable illness, do you believe that patients who are more aware of their life expectancy tend to: (3a) make better medical decisions for the remainder of their life? (3b) make better personal decisions for the remainder of their life? (3c) be more emotionally prepared for dying? 4 (rating scale): What percentage of patients with a serious incurable illness would you say that doctors discuss prognosis with? 5 (multiple choice): For patients with a serious incurable illness, do you think that more aggressive treatments toward the end of life usually lead to better patient and family satisfaction and quality of life? 6 (multiple choice): Do you think that when a patient is able to express their medical wishes for the end of their life, and those wishes are successfully carried out the way they wanted, it would decrease the amount of stress or anxiety that their family experiences around the time of, and in the months after their death? 7 (multiple choice): Do you think that most patients have a clear enough understanding of CPR, in terms of its risks, benefits, and success rates, in order to make an educated decision as to whether they would want it performed on them? 8 (Likert scale): How successful do you think most doctors are at explaining/clarifying advanced life-sustaining treatments with their patients?
9 (multiple choice): In your experience, are these types of discussions easier if facilitated by a palliative care physician?
10 (multiple choice): When do you think would be the most appropriate time for a doctor to initiate a discussion with their patient about their (10a) life expectancy and (10b) medical preferences for the rest of their life (for instance, whether to undergo CPR, intubation, mechanical respiration, receive artificial nutrition, etc)? For this question, assume that medical preferences can be changed at any time if a patient’s values change. 11 (multiple choice): Who do you think is the more appropriate person to initiate the type of discussion described in the previous question?
12 (multiple choice): In what setting would it be best to discuss these sorts of issues with a patient? 13 (multiple choice): Do you think that if most patients were given a free opportunity to discuss their medical wishes for the end of their life with a health care professional when they are healthy (and at no risk of dying anytime soon) so as to plan for the future, they would take it? 14 (multiple choice): How would you feel about a policy requiring every person who reaches a certain elderly age to discuss their medical wishes for the end of their life with a health care professional (assuming that no decisions have to be made, and any decisions that are made can still be changed if the person’s values change with time)? 15 (multiple choice): How do you think most Americans would answer the previous question?
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(1) Not at all well (2) Slightly well (3) Moderately well (4) Very well (5) Extremely well (1) Not at all helpful (2) Slightly helpful (3) Moderately helpful (4) Very helpful (5) Extremely helpful (1) Not at all likely (2) Slightly likely (3) Moderately likely (4) Very likely (5) Extremely likely 0%-100% -
Yes No Not sure Yes No Not sure
- Yes - No - Not sure (1) Not at all successful (2) Slightly successful (3) Moderately successful (4) Very successful (5) Extremely successful - Yes - No - Somewhat/partially - Not sure See the Figure 1 legend for answer choices
- A doctor who has known the patient for many years - A doctor who has only recently met the patient - Both equally appropriate - Other - Inpatient - Outpatient - Other - Yes - No - Not sure - I would have no problem with that policy - I would have significant problem with that policy - Not sure - They would have no problem with that policy - They would have a significant problem with it - Not sure
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Table 2. Survey Questions and Answer Choices Assessing What Participants Would Want for Themselves. Question
Answer Choices
16 (multiple choice): At what approximate age do you plan to complete an advance - Never directive or assign a health care proxy? - Age 40-49 - Age 50-59 - Age 60-69 - Age 70-79 - Age >80 - Not applicable 17 (Likert scale): How much of the medical decisions you make about the end of - None of the decisions - Few of the decisions your life do you think you could make at a time when you are completely - Some of the decisions healthy? - Most of the decisions - All of the decisions 18 (multiple choice): If you were diagnosed with a serious incurable illness (with - Yes estimated life expectancy * 6 months), would you want your doctor to discuss - No - Not Sure your prognosis with you? - Yes 19 (multiple choice): If you had a serious incurable illness (with estimated life - No expectancy * 6 months), and CPR was acutely necessary to save your life, - Not sure would you want it done to you? 20 (multiple choice): If you were told by your doctors that you most likely have less - Active treatments (geared more toward extending life, than 6 months to live regardless of the treatments you receive, what kinds of with some possible associated side effects) - Supportive care (geared more toward maximizing treatments would be most important to you? comfort than extending life) - Both are equally important 21 (multiple choice): Is there such thing as a ‘‘good’’ and a ‘‘bad’’ death, or is all - Yes, there is a difference death equal? - No, all death is equal - Not sure - At home 22a-c (multiple choice): If given the choice, where do you think: - In a hospital (22a) you would want to die? - In a nursing facility (22b) most people in the USA would want to die? - Other (22c) most people in the USA actually die?
family members experience around the time of and in the months after the patient’s death. However, 89% of the participants believed that most patients lack a clear enough understanding of cardiopulmonary resuscitation (CPR; in terms of its risks, benefits, and success rates) in order to make an educated decision as to whether they would want it performed on them, and only 5% of the participants felt that doctors were either very or extremely successful at explaining advanced life-sustaining treatments to patients (mean Likert rating 2.56 [SD 0.71]). Seventy-eight percent believed that a palliative care physician makes these discussions at least somewhat easier. Participants’ views on the optimal timing to discuss life expectancy and medical preferences related to advanced lifesustaining treatments are summarized in Figure 1. A doctor who has known the patient for many years was considered more appropriate to initiate a discussion about advanced lifesustaining treatments than a doctor who has only recently met the patient (22% vs 2%, respectively), although 73% responded that either was equally appropriate. Furthermore, 80% believed that this discussion would best take place when the patient is an outpatient in a clinic (as opposed to during hospitalization). If a free opportunity was offered to patients to discuss their medical wishes for the end of their life with a health care
professional at a time when they are healthy (and at no risk of dying anytime soon), 60% thought that most patients would take this opportunity, 15% said most patients would not, and 26% were unsure. Similarly, 58% agreed with the concept of a policy requiring every person who reaches a certain elderly age to discuss their medical wishes for the end of their life with a health care professional, while 26% opposed such a policy and 16% were unsure. However, 62% thought that most Americans would be opposed to such a policy. Regarding what participants would want for themselves, by age 70, 95% of participants planned to complete an advance directive or assign a health care proxy. Of the participants, 77% felt that they could make most or all of their medical decisions regarding their end-of-life care at a time when they were completely healthy, and only 5% felt they could make few or none of these decisions. If the participant was diagnosed with a serious incurable illness (with estimated life expectancy *6 months), 97% would want their doctor to discuss their prognosis with them, and 74% would not want to undergo CPR even if it was acutely necessary to save their life (9% would want CPR and 18% were unsure). In this scenario, 72% favored supportive care geared more toward maximizing comfort, whereas 4% favored active treatments geared toward extending life, and 24% said that both were equally important. Ninety-two
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806 Table 3. Demographics of Participants.
50%
Characteristic
Occupation
Doctor Nurse Other allied health professional Oncology Palliative care Other Resident/fellow 1-10 years in practice 11-20 years in practice 21þ years in practice US$500 000 Female Male Christian Jewish None Other Caucasian Asian Other Democrat Republican Independent/none Other
Subspecialty
Experience
Household income
Gender Religion
Race
Political party
Life Expectancy
Percentage 62 26 12 66 28 6 17 25 18 40 25 45 20 10 60 40 59 12 12 17 83 9 8 48 17 32 3
percent believed in a difference between a ‘‘good’’ and ‘‘bad’’ death. If given a choice, 86% preferred to die at home (6% in a hospital, 1% in a nursing facility, and 7% other), and it was felt that most Americans had similar preferences (87%, 10%, 1%, and 2%, respectively). However, it was thought that 81% of Americans actually die in a hospital (12% in a nursing facility, 6% at home, and 1% other).
Discussion Recent data suggest that end-of-life care in the United States is characterized by an increasingly aggressive trend, as from 2000 to 2009, the rate of patient movement between settings in the last 90 days of life has tripled, intensive care unit (ICU) admission within the final 30 days of life has increased to 29%, and although hospice use has doubled, 30% of patients are in hospice for 3 days or fewer before dying and 40% come from an ICU before transfer.11 Although extraordinary interventions are clearly reasonable in most patients who are young or become seriously ill unexpectedly, for a patient who is elderly or has limited life expectancy from an incurable illness, it is less clear whether these aggressive measures do more good or harm. Previous studies have shown that most patients and physicians favor less aggressive treatments in the case of terminal illness or when a poor functional outcome is anticipated,23,30,31 and the participants in this study agree that for a patient with a serious incurable illness, more aggressive
Percentage of Respondents
Category
Medical Preferences
40%
30%
20%
10%
0% A
B
C
D
E
F
Figure 1. Optimal Timing for Initiating a Discussion About Life Expectancy and Medical Preferences. Participants were asked when the best time is for a doctor to initiate a discussion with their patient about their life expectancy and medical preferences for the rest of their life (for instance, whether they would choose to undergo CPR, intubation, mechanical respiration, receive artificial nutrition, etc). Answer choices included (A) The doctor should not initiate this sort of discussion. It should only take place if the patient initiates it; (B-E) When the patient is diagnosed with a serious illness and it is thought that he/she has less than 1 week, 1 month, 1 year, and 5 years to live, respectively; (F) When the patient reaches a certain elderly age (regardless of their state of health).
treatments toward the end of life do not usually lead to better patient and family satisfaction or quality of life. Furthermore, our findings confirm a discrepancy between the type of care health care professionals want and the care that they see most patients as receiving, as while the majority of our participants are proponents of discussing prognosis and advance care planning (both for themselves and their patients), most do not believe that doctors do an adequate job of initiating or carrying out such discussions, resulting in patients who are not felt to be well informed about these issues and doctors who are less able to meet their needs. Understanding the views and choices of physicians and other health care professionals about these issues is relevant to patient care because many of them have more experience with death, dying, and treatment options toward the end of life than other members of the general public and as such could provide valuable insight into these issues that patients and families might learn from as they make decisions for themselves. There is also a correlation between physicians’ attitudes and those of their patients,22,32,33 and as such it would be useful for physicians to have knowledge of the collective views of their colleagues when faced with questions like, ‘‘what would you do if you were me?’’ Interestingly, although our data indicate that 95% of participants plan to complete an advance directive or assign a health care proxy by age 70, Gallo et al showed that only 64% of older physicians (median age 68) in a variety of specialties actually completed an advance directive,28
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possibly suggesting that even among health care professionals (let alone the general public) barriers to advance care planning exist. Our participants’ comments regarding why they responded as they did help to define these barriers and highlight a number of areas for improvement, which included inadequate formal training in patient–physician communication related to these issues, medical-legal concerns regarding withholding advanced life-sustaining treatments at the end of life, a general lack of financial reimbursement to compensate physicians for the amount of time these discussions often entail, and a cultural incapacity of both physicians and the general public to confront issues related to mortality. Although our study does not evaluate solutions to all of these issues, we were able to obtain valuable information on what health care professionals see as the optimal clinical approach to the timing, setting, and personnel for advance care planning discussions, a topic which is not well addressed in previous studies. Interestingly, most participants believed that it was not essential for these discussions to be carried out by a health care professional who has a long-standing relationship with the patient, a finding which supports the role of palliative care physicians or other support staff who specialize in eliciting a patient’s goals and wishes to play an active role in this aspect of patient care. The majority of participants also believed that optimally these discussions should take place when a patient is diagnosed with a serious incurable illness and has one or more years to live (rather than 1 month or less) and are better undertaken in the outpatient rather than the inpatient setting. Several participants commented that a potential downside of advance care planning at a time when a patient is healthier is that their values may change as their health deteriorates or when they are actually confronted with the prospect of impending death. On the other hand, waiting until a patient is ‘‘on the brink’’ of death has the disadvantage that the patient may not be fully capable of expressing their wishes at that time, leaving family members in a difficult situation in which the potential guilt of not ‘‘doing everything’’ for their relative may overcome the fact that most patients and physicians do not believe in the medical or ethical value of the interventions that ‘‘doing everything’’ encompasses. The timing of initiating discussions related to prognosis and advance care planning is complicated by the fact that physicians have little confidence in their ability to predict life expectancy in the first place, even in the case described in this study of a known incurable illness, for which data from randomized controlled trials are generally available for guidance. Several participants commented that their feeling of inadequacy in prognostication is due to patient variability, difficulties in applying population statistics to individual patients, and a frank awareness that they are often wrong. However, given that doctors are known to consistently overestimate survival,34-37 and it was thought in this study that only about half of patients ever discuss prognosis with their physician, a better clinical approach may be to initiate advance care planning early on rather than delay until a time when the physician believes it is more appropriate but more often than not is
actually too late. This may be enabled by further training, research, or improvement of prognostic models/algorithms in order to help physicians counsel their patients, and thus remedy a seemingly important barrier to initiating advance care planning. Several possibilities for novel reforms to increase the prevalence of advance care planning were also explored in this study, and although there was no consensus on how more accessible (ie, free) or compulsory advance care planning would be viewed and utilized by the general public, most of the health care professionals in our study would welcome these approaches. Those opposed to such policies commented that most people do not want to think about death so as to avoid fear or loss of control, whereas those in favor commented that if advance care planning was seen as a routine part of patient care then it would be more accepted by the public. Another clinical area that appears to be in great need of reform based on the results of this study is the way in which patients are educated about advanced life-sustaining treatments like CPR and based on the cited barriers to these discussions that participants commented on, solutions may include better physician and support staff training to increase their comfort level in initiating these discussions and developing educational resources to prime the patients for these discussions so that they are less time consuming for physicians. The most important limitation to this study is the selfselection bias inherent to any survey of this nature in which those who chose to respond may not be representative of the entire population of health care professionals who treat patients with cancer in the United States. It should be noted, though, that low response rates are not unusual for voluntary electronic surveys,29 and our response rate is likely underestimated due to the spam filter effect and the fact that an unknown number of the e-mail addresses from these online directories may have been unused or obsolete. The variety of demographics encompassed by our participants does suggest a relatively representative sample or at least that these issues are important to a variety of health care professionals, providing some reassurance of the validity of our findings. Furthermore, the median age and racial distribution of our participants were also similar to that reported for US physicians and oncologists nationwide, and while our participants encompassed a higher percentage of women than the 28% of female oncologists reported to be in the ASCO workforce, this is likely a consequence of including nurses and other allied health professionals in our study.38,39 It should be noted that while some previous studies sampled a wider array of physicians, an advantage of our study is that it targeted a group thought to have significant experience managing issues related to death and dying in their clinical practice, providing unique insight into these issues that may not be fully captured by a broader target population. Our inclusion of a variety of health care professionals also strengthens the data since each of the individuals surveyed interacts with dying patients and other members of the health care team in different ways. Along these lines, we hope to address the impact of demographic variables on responses to individual questions in a future study.
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Conclusion Health care professionals’ perceptions of end-of-life care in the United States indicate that significant barriers exist that prevent patients from achieving what they desire. Although there are likely to be a variety of solutions to remove these barriers, our participants highlighted the importance of developing better tools for prognostication and platforms to educate patients on advanced life-sustaining treatments and channeling more resources toward training physicians, nurses, or other health care professionals in palliative care. In describing the collective views of those most experienced with death and dying, we also hope to help direct a generally less experienced public so patients can be stronger advocates for themselves, and physicians are empowered to best serve their patients’ needs. Acknowledgment The authors would like to acknowledge the additional effort provided by Rebecca Kirch and Rebecca Sudore for their guidance in preparing this manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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