Congenital heart disease (CHD) is a chronic illness. Few adults with CHD are cured and those with disease of moderate or great complexity remain at risk of premature death. Current adult CHD guidelines recommend that providers encourage their patients to complete advance directives. We evaluated the prevalence of completed advance directives by and the preference for information about life expectancy of outpatients at a large adult CHD program. Two hundred patients with CHD (52% men, 35 ± 15 years old, range 18 to 79, 81% with disease of moderate or great complexity) completed a survey that assessed knowledge of advance directives and nature of and preferences for advance care planning. Only 5% of patients reported that they had completed advance directives; 56% had never heard of them. However, most patients (87%) reported that they would prefer to have an advance directive available if they were dealing with their own dying and were unable to speak for themselves. Patients who had formally identified substitute decision makers (n = 34) were typically older (47 ± 16 vs 33 ± 13 years, p <0.001) and more likely to have partners (30% vs 6%, p <0.001). Most patients (70%) reported that they wanted general information about the average life expectancy for patients with their heart condition. In conclusion, in contrast to recommendations from published guidelines, advance care planning documents are infrequently completed by outpatients. Health care providers caring for patients with CHD should educate their patients about advance directives and assist them in preparing formal end-of-life-planning documents.
The aim of this study was to assess knowledge about and completion of advance directives by adults with congenital heart disease (CHD) attending outpatient clinics at a large university-based adult CHD program. Furthermore, we assessed attitudes of these patients toward advance care planning and their interest in information about estimates of life expectancy.
Methods
Participants were consecutively recruited from an outpatient clinic at a supraregional adult CHD center from December 2009 through March 2010. Patients had to be able to provide written informed consent and complete a questionnaire in English to participate. Information on cardiac diagnoses and treatment history was obtained by chart review. Cardiac diagnoses were stratified as defects of simple, moderate, or great complexity according to the 2008 American College of Cardiology/American Heart Association guidelines for management of adults with CHD. This study received institutional research ethics board approval.
The patient survey administered for this study has previously been described in detail. In the present study, we analyzed data from 3 sections of the survey: (1) sociodemographic background, (2) a short form-12 survey evaluation of perceived mental and physical health status, and (3) questions about preferences for advance care planning and information about life expectancy. Participants were instructed that “advance directives allow people to make their health care choices known before becoming very ill or dying.” They were asked whether they had ever heard about or completed an advance directive to “describe what you want to happen if you become severely ill.” Participants were asked whether they had heard about or completed a power of attorney for personal care, which was defined as a form “in which you name someone to make decisions about your health care in case you cannot.” Participants were asked about their preferences for involvement of family and health care providers at the end of life and the importance of various aspects of dealing with their own dying ( Tables 1 and 2 ). In addition, participants were asked whether they wanted information about the estimated life expectancy of patients with their heart condition (i.e., average life span for someone with a heart condition similar to theirs). Questions were adapted with permission from a published survey assessing advance care planning in adolescents.
| Yes, Very Sure | Somewhat Sure | Not Very Sure/Not Sure At All | No | Don’t Know | |
|---|---|---|---|---|---|
| Patient believes he/she can change his/her mind after making an important medical decision | 61 (31%) | 34 (17%) | 61 (31%) | 16 (8%) | 26 (13%) |
| Patient thinks his/her doctor knows the kind of care the patient wants if he/she becomes too sick to speak for him/herself | 20 (10%) | 37 (19%) | 57 (29%) | 67 (34%) | 18 (9%) |
| Patient thinks his/her doctor or the hospital will respect his/her wishes for end-of-life care | 74 (37%) | 74 (37%) | 31 (16%) | 5 (3%) | 16 (8%) |
| Patient thinks his/her surrogate understands his/her wishes | 72 (36%) | 54 (27%) | 38 (19%) | 16 (8%) | 20 (10%) |
| Patient thinks his/her surrogate will respect his/her wishes for end-of-life care | 92 (46%) | 64 (32%) | 28 (14%) | 5 (3%) | 11 (6%) |
⁎ Questions were used, with permission, from the Lyon Advance Care Planning Survey–Adolescent Version.
| Survey Item | Very Important | Somewhat Important | Not Very Important/Not Important At All | Not Sure/No Response |
|---|---|---|---|---|
| Honest answers from doctor | 188 (94%) | 6 (3%) | 2 (1%) | 4 (2%) |
| Understanding treatment choices | 166 (83%) | 25 (13%) | 4 (2%) | 5 (3%) |
| Visits from family and friends | 143 (72%) | 38 (19%) | 8 (4%) | 11 (6%) |
| Having said everything they want to say | 137 (69%) | 47 (24%) | 10 (5%) | 6 (3%) |
| Being free from pain | 131 (66%) | 50 (25%) | 17 (9%) | 2 (1%) |
| Being physically comfortable | 126 (63%) | 55 (28%) | 10 (5%) | 9 (5%) |
| Not being a burden to loved ones | 126 (63%) | 50 (25%) | 15 (8%) | 9 (5%) |
| Knowing how to say good-bye | 115 (58%) | 49 (25%) | 20 (10%) | 15 (8%) |
| Being at peace spiritually | 109 (55%) | 46 (23%) | 31 (16%) | 14 (7%) |
| Fulfilling personal goals/pleasures | 102 (51%) | 72 (36%) | 20 (10%) | 6 (3%) |
| Having a sense of their own value | 99 (50%) | 56 (28%) | 25 (13%) | 20 (10%) |
| Being able to stay in their own home | 90 (45%) | 72 (36%) | 32 (16%) | 6 (3%) |
| Dying a natural death | 70 (35%) | 63 (32%) | 25 (13%) | 42 (21) |
| Being off life-extending machines | 62 (31%) | 51 (26%) | 30 (15%) | 57 (29%) |
| Have caregivers visit them at home | 55 (28%) | 85 (43%) | 41 (21%) | 19 (10%) |
| Comfort from church services | 50 (25%) | 47 (24%) | 87 (44%) | 16 (8%) |
| Reviewing life history with family | 44 (22%) | 73 (37%) | 69 (35%) | 14 (7%) |
| Planning their own funeral | 35 (18%) | 57 (29%) | 87 (44%) | 21 (11%) |
⁎ Questions were used, with permission, from the Lyon Advance Care Planning Survey–Adolescent Version.
Descriptive statistics are presented as frequency or mean ± SD. Independent-sample t tests and analyses of variance were performed to investigate whether completion of power of attorney for personal care documents differed as a function of sociodemographic factors, medical variables, or perceived health status. A statistical significance level of a p value <0.05 (2-sided) was used for all analyses. Data analyses were conducted using SPSS 17.0 for Windows (SPSS, Inc., Chicago, Illinois).
Results
Patient demographics have been described previously. Of 216 patients approached in outpatient clinics, 200 consented and completed surveys (mean age 35 ± 15 years, 48% women, 81% with disease of moderate or great complexity). The denominator does not always equal 200 because not all patients responded to all items. Most patients (77%) reported that they had never written down thoughts about their future health plans. Only 5% had completed advance directives; 56% had never heard of such a concept. Although 147 of 193 patients (76%) reported that they had heard about a power of attorney for personal care, only 34 of 193 (18%) had completed such as directive. Patients who had completed a power of attorney for personal care were generally older (47 ± 16 vs 33 ± 13 years of age, p <0.001) and more likely to have partners (30% vs 6%, p <0.001). Patients with children tended to complete such documents somewhat more often than those without children (24% vs 13%, p = 0.054). Rates of completion of a power of attorney for personal care did not differ by gender or defect complexity. There were no differences in perceived mental or physical health status between patients who had and those who had not completed a power of attorney for personal care. In contrast to the low level of previous awareness and low frequency of completion of advance directives, most patients (168 of 193, 87%) indicated that they considered it “somewhat important” or “very important” to have an available advance directive that would let their loved ones know their wishes if they were dying and unable to speak for themselves.
In the event they were to become very ill and were not expected to become better, most patients (86%) preferred to have their families involved in their health care decisions, whereas only 50% preferred to have their doctors involved. Additional perceptions on end-of-life (EOL) decision making are presented in Table 1 .
Only 35 of 200 patients (18%) endorsed a preference to die in an institution (hospital, residential hospice, or nursing home), whereas 105 of 200 (53%) reported that they would prefer to die at home; the remainder reported having no preference or did not respond. Men were more likely than women to express a preference for dying at home (85% vs 66%, p = 0.008). Patients who expressed a preference for dying at home were generally younger (35 vs 41 years old, p = 0.030). There were no significant differences according to defect complexity, marital status, or whether patients had children. Information about patients’ preferences for dealing with their own death and dying are presented in Table 2 . The 2 factors most commonly deemed very important were honest answers from their doctors (188 of 200, 94%) and understanding treatment choices (166 of 200, 83%). Although only 69 of 200 patients (35%) endorsed wanting to know when they would die if someone could tell them that, 140 of 200 (70%) indicated a desire for general information about the average life expectancy for patients with their heart condition.
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