- Email: [email protected]
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Brief Report
Insight Into Advance Care Planning for Patients on Dialysis Daisy J.A. Janssen, MD, PhD, Martijn A. Spruit, PhD, Jos M.G.A. Schols, MD, PhD, Frank M. van der Sande, MD, PhD, Leon A. Frenken, MD, PhD, and Emiel F.M. Wouters, MD, PhD Program Development Centre (D.J.A.J., M.A.S., E.F.M.W.), Centre of Expertise for Chronic Organ Failure (CIROþ), Horn; CAPHRI School for Public Health and Primary Care (D.J.A.J., J.M.G.A.S.), and Departments of General Practice and Health Services Research (J.M.G.A.S.), Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht; Proteion Thuis (D.J.A.J.), Horn; Division of Nephrology (F.M.v.d.S.), Department of Internal Medicine, and Department of Respiratory Medicine (E.F.M.W.), Maastricht University Medical Centreþ, Maastricht; and Department of Internal Medicine (L.A.F.), Atrium Medical Centre, Heerlen, The Netherlands
Abstract Context. Advance care planning is not included in regular clinical care for patients on dialysis. Insight into life-sustaining treatment preferences and communication about end-of-life care is necessary to develop interventions to improve advance care planning for patients on dialysis. Objectives. This cross-sectional observational study aimed to understand the preferences for life-sustaining treatments of outpatients on dialysis and to study the quality of patient-physician communication about end-of-life care and barriers and facilitators to this communication. Methods. The following outcomes were assessed in 80 clinically stable dialysis patients: demographics, clinical characteristics, life-sustaining treatment preferences (cardiopulmonary resuscitation and mechanical ventilation, and Willingness to Accept Life-Sustaining Treatment instrument), preference for site of death, quality of communication (Quality of Communication Questionnaire), and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire). Results. Patients were able to indicate their preferences for life-sustaining treatments and site of death. Preferences for life-sustaining treatments depend on the specific treatment, the expected outcome of treatment, and likelihood of an adverse outcome. Life-sustaining preferences were discussed with the nephrologist by 30.3% of the patients. Quality of the patient-physician communication about end-of-life care was rated poor. This study identified several barriers and facilitators to end-of-life care communication. Conclusion. Patients should receive information about treatment burden, expected outcome, and the likelihood of an adverse outcome when discussing
Address correspondence to: Daisy J.A. Janssen, MD, PhD, Program Development Centre, CIROþ, Centre of Expertise for Chronic Organ Failure, Hornerheide 1, Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
6085 NM Horn, The Netherlands. [email protected] Accepted for publication: January 19, 2012.
E-mail:
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2012.01.010
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life-sustaining treatments. Quality of patient-physician communication about end-of-life care needs to improve. Barriers and facilitators to communication about end-of-life care provide direction for future interventions to facilitate advance care planning for patients on dialysis. J Pain Symptom Manage 2013;45:104e113. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Chronic renal failure, end-stage renal disease, advance directives, advance care planning, life-sustaining treatment preferences, communication
Introduction The five-year mortality rate remains approximately 60% in patients on hemodialysis or peritoneal dialysis.1 Advance care planning is important to prepare patients on dialysis and their loved ones for the end of life.2 Nowadays, advance care planning is seen as a process of communication among the patients, their families, and professional caregivers, which includes, but is not limited to, discussing preferences for life-sustaining treatments.2,3 Previous studies suggest that advance care planning may improve the quality of end-of-life care for patients and their families.4,5 Achieving a sense of control and avoiding inappropriate prolongation of dying are important domains of quality end-of-life care for patients on dialysis.6 However, advance care planning is currently not included in routine clinical care for patients on dialysis.7,8 Only a minority of dialysis patients have prepared advance directives or discussed their preferences for lifesustaining treatments with their physicians.7,8 Moreover, neither family members nor physicians are able to predict accurately the preferences of dialysis patients for cardiopulmonary resuscitation (CPR).7 In patients with cancer, chronic obstructive pulmonary disease (COPD), or chronic heart failure, it has been shown that the preferences for life-sustaining treatments not only depend on the specific treatment but also on the expected outcome of treatment and likelihood of an adverse outcome.9,10 Singer et al.11 showed that illness severity and health state may have more influence on treatment preferences than on the description of the specific treatment in patients on dialysis. Communication about end-of-life care is an essential part of advance care planning.2 Indeed, studies in patients with renal disease
have shown the need for early communication about prognosis, the disease process, and endof-life care.12e14 Nevertheless, a recent study has shown that only 28% of the dialysis patients who died in the hospital had discussed issues concerning end-of-life care with their medical team in the year before their death.15 For the development of interventions to facilitate communication about end-of-life care, it is important to know, from the perspective of the patient, the current quality of patient-physician communication about endof-life care and barriers and facilitators to this communication. The objective of this observational study was to understand the preferences for life-sustaining treatments of outpatients on dialysis. Furthermore, we aimed to study the quality of patientphysician communication about end-of-life care and barriers and facilitators to this communication, as perceived by the patient.
Methods Design The present cross-sectional study was part of a multicenter, longitudinal, observational study concerning palliative care needs of patients with advanced chronic organ failure.16 Data about advance care planning in patients with COPD or chronic heart failure and about family caregiving and the stability of lifesustaining treatment preferences in COPD, chronic heart failure, or chronic renal failure were published previously.10,17,18
Study Population A convenience sample of patients was recruited at the dialysis department of one academic and five general hospitals in The Netherlands in 2008 and 2009. Patients were
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eligible if they had a diagnosis of end-stage renal disease requiring dialysis. Patients were excluded if they were not clinically stable for four weeks preceding the enrollment according to the referring nephrologist, were not optimally treated according to the available guidelines, or were living in a nursing home. The Medical Ethics Committee of the Maastricht University Medical Centerþ, Maastricht, The Netherlands, approved this study (MEC 07-3-054). All patients provided written informed consent. Data were collected from patients who were referred for the study but refused participation to compare demographic characteristics of participating and nonparticipating patients.
Measurements Patients were visited in their home environment or, if they preferred, during dialysis. Demographics, comorbidities (Charlson Comorbidity Index19), need for help with personal care, and self-perceived mobility problems were recorded. Health status was assessed by using the Dutch version of the Kidney Disease Quality of Life Short Form.20 Preferences for CPR and mechanical ventilation in their current health state (Table 1) were studied.21 Patients were asked where they preferred to be when they were likely to die (response options: home, hospital, care home, hospice, or ‘‘do not know’’). Patients’ life-sustaining treatment preferences were elaborated using the Willingness to Accept Life-Sustaining Treatment (WALT) instrument, which comprises six scenarios in which patients weigh treatment burden against treatment outcome, expressed in likelihood of different health states and length of life after treatment.9,22 Scenario 1 concerned low-
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burden therapy (a few days to a week in the hospital) and likelihood of death vs. return to current health. Scenario 2 concerned lowburden therapy and length of life after therapy (one week, one month, six months, or one year). Scenario 3 involved high-burden therapy (at least one month in the hospital and major interventions) and likelihood of death vs. return to current health. Scenario 4 concerned high-burden therapy and length of life after therapy. Scenario 5 concerned lowburden therapy and likelihood of functional impairment (being bedbound and needing help with all daily activities) vs. return to current health. Scenario 6 involved low-burden therapy and likelihood of cognitive impairment (not being aware of what is going on and not being able to recognize loved ones) vs. return to current health.22 Furthermore, patients reported the quality of communication with their nephrologist using the Quality of Communication (QOC) questionnaire.23 The QOC questionnaire consists of 13 items that form two domains (general communication and end-of-life care communication). Patients were asked to rate how good their doctor is at each of the items on a scale of zero to 10, with zero indicating ‘‘the very worst’’ and 10 indicating ‘‘the very best.’’ Patients were offered two additional response options: ‘‘My doctor did not do this’’ and ‘‘do not know.’’ Domain scores range from zero (worst) to 10 (best).23 Barriers and facilitators to communication about end-of-life care were assessed using the Barriers and Facilitators Questionnaire (BFQ).24 The BFQ comprises 15 barriers and 11 facilitators to communication about endof-life care. For each barrier and facilitator,
Table 1 Questions Asked of Patients About Their Treatment Preferences Treatment Mechanical ventilation
CPR
Question ‘‘The first treatment is short-term mechanical ventilation. You would be in an ICU, and a tube would be placed through your mouth or nose into your lungs. This tube would be attached to a breathing machine for a few days. During that time, you would have to be continuously on the breathing machine and would be unable to talk. If you were in your current health and were unable to breathe on your own, would you want to be on a breathing machine for a few days? There would be no guarantee that you would be able to come off the breathing machine and be able to breathe on your own.’’ ‘‘The second treatment is CPR, which consists of electric shocks to the heart, pumping on the chest, help with breathing, and heart medications given through the veins. Possible side effects of CPR include broken ribs and memory loss. Because you would be unconscious, other people would need to make the decision for you regarding your treatment. In your current health, would you want resuscitation (CPR) if your heart were to stop beating?’’
ICU ¼ intensive care unit; CPR ¼ cardiopulmonary resuscitation.
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the respondent was asked if the item applied to his/her situation (response options: applicable and not applicable).24 Finally, the nephrologists completed a written questionnaire concerning advance care planning for each patient. The questionnaire was developed for the present study and assessed whether the nephrologist discussed with the patient prognosis of survival, preferences for CPR and mechanical ventilation, the end of life, and palliative care. Response options were yes/no for each item.
Statistical Analysis All statistical analyses were done using SPSS 18.0 (SPSS Inc., Chicago, IL). Categorical variables were described as frequencies, whereas continuous variables were tested for normality and are presented as mean and SD or as median and interquartile (IQR) range. Frequencies are used to describe the patients’ life-sustaining treatment preferences as assessed with the WALT. We used a log-rank test to compare different WALT scenarios. A priori, a two-sided level of significance was set at a P-value of 0.05 or less.
Results Patient Characteristics In total, 109 dialysis patients were referred for the study and 80 patients agreed to participate (response rate 73.4%; Table 2). Participants were younger than nonparticipants (62.2 [15.6] years vs. 68.9 [13.1] years, respectively, P < 0.05). Most participating patients were male and living with a partner. Comorbidities were highly prevalent. In general, patients reported an impaired health status. More than half of the patients experienced mobility problems. Most patients (96.2%) were on hemodialysis.
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Table 2 Patient Characteristics (n ¼ 80) Age (years) Gender (male) Marital status (married/living with partner) Current smokers Body mass index (kg/m2) Charlson Comorbidity Index (points) Patients with $1 comorbidity Dependent in personal care Self-perceived mobility problems KDQOL-SF physical health composite KDQOL-SF mental health composite KDQOL-SF symptoms/problems KDQOL-SF effects of kidney disease KDQOL-SF burden of kidney disease Previous CPRa Previous mechanical ventilationa
62.2 48 52 12 25.5 4.0 56 19 45 38.4 52.0 75.5 68.1 46.7 7 17
(15.6) (60.0) (65.0) (15.0) (5.8) (2.0) (70.0) (23.8) (56.3) (10.3) (8.5) (15.5) (18.4) (24.4) (9.3) (22.7)
KDQOL-SF ¼ Kidney Disease Quality of Life Short Form; CPR ¼ cardiopulmonary resuscitation. Values are expressed as mean (SD) or n (%). a n ¼ 75.
likelihood of treatment outcome, as assessed with Scenarios 1, 3, 5, and 6 of the WALT (Table 3). The proportion of patients willing to accept treatment decreased as likelihood of death or functional or cognitive impairment as an outcome of treatment increased. The proportion of patients willing to accept treatment was statistically significantly different for Scenario 6 (low-burden therapy and likelihood of cognitive impairment) and Scenario 1 (low-burden therapy and likelihood of death; P < 0.005; Fig. 1). In addition, responses to Scenarios 2 and 4 of the WALT showed that the proportion of patients willing to accept treatment increased when extension of life after treatment increased (Table 4).
Preference for Site of Death About half of the patients (48.7%) preferred dying at home, whereas 32.5% of the patients preferred to die in a hospital, and 15.0% preferred to die in a hospice or a care home. Only 3.8% of the patients did not know where they preferred to die.
Life-Sustaining Treatment Preferences
Advance Care Planning
All patients reported a preference regarding CPR, and only two patients were unable to report their preference regarding mechanical ventilation. Most patients preferred CPR (82.5%) and invasive mechanical ventilation (81.3%). Patients were able to indicate their treatment preferences according to the treatment burden, treatment outcome, and
For 66 patients (82.5%), the nephrologists (n ¼ 15) returned the questionnaire concerning advance care planning. Nephrologists reported communication regarding CPR or mechanical ventilation in 57.6% of their patients, whereas only in 30.3% did the patient and nephrologist both report having discussed preferences for CPR or mechanical ventilation.
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Table 3 Proportion of Patients Who Would Want Treatment at Different Likelihoods of Death or Functional or Cognitive Impairment as an Outcome of Treatment (n ¼ 80) Likelihood of Outcome (%) WALT Treatment/Outcome Low-burden/likelihood of death (vs. current state) High-burden/likelihood of death (vs. current state) Low-burden/likelihood of functional impairment (vs. current state) Low-burden/likelihood of cognitive impairment (vs. current state)
0
1
10
50
90
99
100
Do Not Know (%)
95.0 92.5 d d
95.0 92.5 97.5 96.3
95.0 92.5 95.0 92.5
83.8 83.8 71.3 52.5
53.8 47.5 46.3 28.8
42.5 35.0 40.0 20.0
d d 36.3 10.0
2.5 1.3 d d
WALT ¼ Willingness to Accept Life-Sustaining Treatment instrument. Values are expressed as proportion of patients willing to accept treatment.
In addition, nephrologists reported communication regarding the end of life in 10.6% of the participating patients. Finally, they reported communication regarding palliative care in 10.6% of the participating patients.
and ‘‘asking you about important things in life’’ (62.5%).
Quality of End-of-Life Care Communication
The most frequently endorsed barriers to communication about end-of-life care were: ‘‘I do not know what kind of care I want if I get very sick’’; ‘‘I’m not ready to talk about the care I want if I get very sick’’; ‘‘I would rather concentrate on staying alive than talk about death’’; and ‘‘I’m not sure which doctor will be taking care of me if I get very sick.’’ The most frequently endorsed facilitators to communication about end-of-life care were: ‘‘I have been very sick’’; ‘‘I have had family or friends who have died’’; ‘‘I trust my doctor’’; ‘‘My doctor cares about me as a person’’; ‘‘My doctor is very good at taking care of renal disease’’; and ‘‘I feel sure that my doctor will be there for me if I get very sick’’ (Table 5).
Patients rated the general communication skills of their nephrologist high on the QOC questionnaire (median score 8.0 [IQR 7.3e9.0] points), whereas quality of communication about end-of-life care was rated very low (median score 1.1 [IQR 0.0e3.4] points). Low median scores for communication about end-of-life care were mainly because of the fact that most patients reported that items concerning end-of-life care were not discussed. Indeed, most physicians did not address ‘‘talking about your feelings concerning the possibility that you might get sicker’’ (70.0%), ‘‘talking about how long you have to live’’ (85.0%), ‘‘talking about what dying might be like’’ (91.3%), ‘‘asking about spiritual or religious beliefs’’ (87.5%), ‘‘involving you in treatment discussions about your care’’ (63.8%),
Barriers and Facilitators to End-of-Life Care Communication
Discussion Key Findings
Fig. 1. Proportion of dialysis patients (n ¼ 80) that accepts treatment according to the burden of treatment and likelihood of an adverse outcome. P-value less than 0.005 for comparison of scenario ‘‘low-burden therapy and likelihood of cognitive impairment’’ with scenario ‘‘low-burden therapy and likelihood of death.’’
The present study shows that dialysis patients are able to indicate their preferences for lifesustaining treatments. Preferences for lifesustaining treatments depend on the specific treatment, the expected outcome of treatment, and the likelihood of an adverse outcome. Only a minority of the dialysis patients had discussed preferences for life-sustaining treatments with their nephrologists. Moreover, aspects concerning end-of-life care were scarcely discussed and the quality of patient-physician communication about end-of-life care was poor. We have identified several barriers and facilitators to communication about end-of-life care that may provide direction for future interventions
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Table 4 Proportion of Patients That Would Want Treatment With Outcome of Different Degrees of Life Extension (n ¼ 80) Life Extension WALT Treatment Low-burden High-burden
1 week
1 month
6 months
1 year
Do Not Know (%)
50.0 41.3
62.5 57.5
87.5 82.5
90.0 86.3
3.8 2.5
WALT ¼ Willingness to Accept Life-Sustaining Treatment instrument. Values are expressed as proportion of patients willing to accept treatment.
to improve communication about end-of-life care.
Life-Sustaining Treatment Preferences A recent study has shown that dialysis patients have opinions about their willingness to undergo CPR and mechanical ventilation in several clinical conditions, such as dementia or a permanent vegetative state.25 Most dialysis patients in the present study reported to prefer CPR in their current health state. This is in line with a previous study.26 However, the present study also shows that dialysis patients determine their treatment preferences on burden of
treatment, treatment outcome, and the likelihood of an adverse treatment outcome. Most patients were unwilling to undergo a treatment with a low likelihood of success. So, they may not be aware of the poor outcome of CPR in dialysis patients.26 Indeed, we have shown that CPR and mechanical ventilation are only discussed with a minority of the patients. Therefore, dialysis patients may base their preference for CPR on the unrealistic outcomes as shown on television instead of information from their physicians.26 Discussing preferences for lifesustaining treatments should include discussing burden of treatment, treatment outcome, and
Table 5 Barriers and Facilitators to End-of-Life Care Communication (n ¼ 80) Items Barriers I do not know what kind of care I want if I get very sick I am not ready to talk about the care I want if I get very sick I do not like to talk about getting very sick My doctor does not like to talk about me getting very sick My doctor never seems to have the time to talk about issues such as end-of-life care I would rather concentrate on staying alive than talk about death I feel that talking about death can bring death closer I have a living will, and that means I do not need to talk with my doctor about the care I want if I am too sick to speak for myself My ideas about the kind of medical care I want change at different times I worry that talking about getting sick is too depressing for my doctor I do not want to make plans for the future I have not been very sick I have concerns about bringing up assisted suicide I am not sure which doctor will be taking care of me if I get very sick Doctors look down on people who developed disease because of smoking Facilitators I have been very sick I have had family or friends who have died I worry about the quality of my life in the future I trust my doctor My doctor cares about me as a person My doctor is very good at taking care of renal disease I worry that I could be a burden on my friends and family if I get very sick My doctor often asks me about end-of-life care My doctor is very good at talking about end-of-life care I feel sure that my doctor will be there for me if I get very sick Someone other than my doctor has talked with me about the care I would want if I got too sick to speak for myself (such as a nurse, home health worker, chaplain or clergy, and social worker)
Patients Responding, n (%) 63 52 37 12 10 60 13 12
(78.8) (65.0) (46.2) (15.0) (12.5) (75.0) (16.3) (15.0)
13 2 38 25 17 51 20
(16.3) (2.5) (47.5) (31.3) (21.3) (63.8) (25.0)
52 77 19 77 60 78 27 1 12 73 11
(65.0) (96.3) (23.8) (96.3) (75.0) (97.5) (33.8) (1.3) (15.0) (91.3) (13.8)
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the likelihood of an adverse treatment outcome to allow patients to make carefully considered decisions. Furthermore, life-sustaining treatment preferences may change during the course of the disease.18,27 Thus, discussing life-sustaining treatment preferences should not be limited to preparing advance directives. Discussing life-sustaining treatment preferences also should prepare patients and their loved ones to participate with physicians in making the best possible in-the-moment medical decisions. Indeed, advance directives can support in-the-moment decision making.28
Communication About End-of-Life Care The present study shows that the quality of patient-physician communication about end-of-life care is poor. Most end-of-life care topics, such as prognosis, the process of dying, and spirituality, are rarely discussed. This is in line with previous findings in patients with advanced COPD or chronic heart failure.10,29,30 Barriers and facilitators to communication about end-of-life care may provide directions for future interventions. For example, 79% of the patients reported ‘‘I do not know what kind of care I want if I get very sick.’’ This barrier is associated with fewer discussions concerning end-of-life care.24 At the same time, patients reported clear opinions about life-sustaining treatments and site of death. Most likely, patients are not aware of their treatment options at the end of life.8 Therefore, explaining treatment options may help to overcome this barrier. In addition, 65% of the patients reported that they were not ready to talk about the care they want if they get very sick. So, it is unlikely that these patients will initiate discussions concerning advance care planning. A previous qualitative study confirms that dialysis patients lack insight into the severity of their disease and will not initiate discussions concerning advance care planning. They expect their health care providers to initiate these discussions.31 Physicians report the fear of taking away patients’ hope as a barrier to the initiation of these discussions.24 Nevertheless, hope has a central role in the process of advance care planning. Hope is highly individual and helps to determine the future goals of care and a patient’s willingness to engage in discussions concerning end-of-life care.31 In fact, patients
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report that information about prognosis is vital in maintaining the ability to hope.31 For patients who are uncomfortable with talking about prognosis, a more indirect approach to discussing prognosis may be warranted.32 Physicians should take the emotional state of patients and their families into account when discussing prognosis.2,32 Also, physicians should be careful in being explicit in prognostic information. For example, addressing prognosis in terms of outcomes for groups rather than individuals may be more acceptable to patients.32 Patients should be reassured that they will not be abandoned at the end of life.32,33 Another important barrier to communication about end-of-life care is ‘‘I’m not sure which doctor will be taking care of me if I get very sick.’’ Therefore, continuity of care may be an important factor to consider in facilitating advance care planning. In fact, in patients with COPD, it has been shown that the length of the relationship with the clinician was related to the perceived quality of patient-clinician communication.34 Furthermore, only 15% of the patients reported ‘‘My doctor is very good at talking about end-of-life care.’’ The endorsement of this facilitator is associated with increased occurrence of end-of-life care communication.24 Physicians need the skills to guide the process of advance care planning. Training physicians in end-of-life care communication may be a target for future interventions.
Limitations Some limitations should be considered in interpreting the results. First, the study population consists of a relatively small convenience sample of dialysis patients. A percentage of the eligible patients (26.6%) refused participation, and it is unknown whether these patients were willing to discuss preferences for lifesustaining treatments and end-of-life care. This may limit the generalizability of the results. Second, participating patients were younger than nonparticipants. This might have influenced our results. However, previous studies did not show a relationship between age and treatment preferences or engagement in end-of-life discussions.35,36 Third, patients using peritoneal dialysis were underrepresented in this study. Although a previous study did not show a relationship between preferences
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for CPR and type of dialysis, the influence on our results may be a limitation.35 Fourth, the WALT, QOC questionnaire, and BFQ were used before in patients with other chronic diseases, such as COPD, chronic heart failure, or cancer,9,22e24 but were not validated for patients on dialysis. The questions we used to assess the patients’ preferences for CPR and mechanical ventilation in their current health state were modified before from an existing measure of preferences for life-sustaining treatments in different health states and were previously used in patients with AIDS or COPD.21,37,38 However, it is possible that some patients did not report their true preferences because they did not fully understand the questions and based their response on incomplete information. Finally, ethnicity may influence aspects concerning end-of-life care. For example, a previous study has shown a lower frequency of ‘‘do not resuscitate’’ orders in non-Caucasian dialysis patients.15 Only a few patients in the present study were non-Caucasian, and it is likely that this has influenced our results.
Conclusions The present study provides directions to facilitate the process of advance care planning for patients on dialysis. Patients’ preferences for life-sustaining treatments need to be understood in the context of the knowledge and expectations of life-sustaining treatments. Therefore, patients should receive information about treatment burden, expected outcome, and the likelihood of an adverse treatment outcome when discussing life-sustaining treatments. This will allow the patients to make carefully considered decisions about life-sustaining treatments. Furthermore, the quality of patient-physician communication about end-of-life care needs to improve. Nephrologists should include discussing topics such as prognosis and end-of-life care in the process of advance care planning. This study identified barriers and facilitators to communication about end-of-life care that should be taken into account in the development of interventions to facilitate advance care planning for patients on dialysis.
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Disclosures and Acknowledgments This project was supported by: Proteion Thuis, Horn, The Netherlands; Center of Expertise for Chronic Organ Failure (CIROþ), Horn, The Netherlands; Grant 3.4.06.082 of The Netherlands Asthma Foundation, Leusden, The Netherlands; The Weijerhorst Foundation, Maastricht, The Netherlands; and Stichting Wetenschapsbevordering Verpleeghuiszorg (SWBV), Utrecht, The Netherlands. No funding source had any role in design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The authors have no financial or personal relationships with individuals, organizations, or companies that might be perceived to bias the work. The authors are grateful to research nurses Els Verstraeten, RN, and Jamila DekkerHeuts, RN, for collection of the data and to Mrs. Linda Koolen for input of the data. The authors also are grateful to the doctors of the following collaborating hospitals for their participation in this study: Maastricht University Medical Centerþ, Maastricht, The Netherlands; Laurentius Hospital, Roermond, The Netherlands; Maxima Medical Center, Veldhoven, The Netherlands; Catharina Hospital, Eindhoven, The Netherlands; Atrium Medical Center, Heerlen, The Netherlands; and Orbis Medical Center, Sittard, The Netherlands.
References 1. Kramer A, Stel V, Zoccali C, et al. An update on renal replacement therapy in Europe: ERA-EDTA Registry data from 1997 to 2006. Nephrol Dial Transplant 2009;24:3557e3566. 2. Davison SN, Torgunrud C. The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 2007;49:27e36. 3. Fried TR, O’Leary JR. Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. J Gen Intern Med 2008;23:1602e1607. 4. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 2007;55:189e194. 5. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning
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on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
development and validation. J Chronic Dis 1987; 40:373e383.
6. Singer PA, Martin DK, Kelner M. Quality end-oflife care: patients’ perspectives. JAMA 1999;281: 163e168.
20. Korevaar JC, Merkus MP, Jansen MA, et al. Validation of the KDQOL-SF: a dialysis-targeted health measure. Qual Life Res 2002;11:437e447.
7. Miura Y, Asai A, Matsushima M, et al. Families’ and physicians’ predictions of dialysis patients’ preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis 2006;47:122e130.
21. Stapleton RD, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Association of depression and life-sustaining treatment preferences in patients with COPD. Chest 2005;127:328e334.
8. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 2010;5:195e204.
22. Fried TR, Bradley EH, Towle VR. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci 2002;57: S348eS354.
9. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002;346:1061e1066. 10. Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest 2011;139:1081e1088. 11. Singer PA, Thiel EC, Naylor CD, et al. Lifesustaining treatment preferences of hemodialysis patients: implications for advance directives. J Am Soc Nephrol 1995;6:1410e1417. 12. Russ AJ, Shim JK, Kaufman SR. The value of ‘‘life at any cost’’: talk about stopping kidney dialysis. Soc Sci Med 2007;64:2236e2247. 13. Davison SN. Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol 2006;1: 1023e1028. 14. Fine A, Fontaine B, Kraushar MM, Rich BR. Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study. Perit Dial Int 2005;25:269e273. 15. McAdoo SP, Brown EA, Chesser AM, Farrington K, Salisbury EM. Measuring the quality of end of life management in patients with advanced kidney disease: results from the panThames renal audit group. Nephrol Dial Transplant 2012;27:1548e1554. 16. Janssen DJ, Wouters EF, Schols JM, Spruit MA. Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol. BMC Palliat Care 2008;7:5. 17. Janssen DJ, Spruit MA, Wouters EF, Schols JM. Family caregiving in advanced chronic organ failure. J Am Med Dir Assoc 2012;13:394e399.
23. Engelberg R, Downey L, Curtis JR. Psychometric characteristics of a quality of communication questionnaire assessing communication about end-oflife care. J Palliat Med 2006;9:1086e1098. 24. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127:2188e2196. 25. Sanchez-Tomero JA, Rodriguez-Jornet A, Balda S, et al. Exploring the opinion of CKD patients on dialysis regarding end-of-life and advance care planning. Nefrologia 2011;31:449e456. 26. Moss AH, Hozayen O, King K, Holley JL, Schmidt RJ. Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit. Am J Kidney Dis 2001;38:847e852. 27. Fried TR, O’Leary J, Van Ness P, Fraenkel L. Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment. J Am Geriatr Soc 2007;55:1007e1014. 28. Sudore RL, Fried TR. Redefining the ‘‘planning’’ in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010; 153:256e261. 29. Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J 2004;24:200e205. 30. Janssen DJ, Curtis JR, Au DH, et al. Patient-clinician communication about end-of-life care for Dutch and US patients with COPD. Eur Respir J 2011;38:268e276. 31. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333:886.
18. Janssen DJ, Spruit MA, Schols JM, et al. Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure. Chest 2012;141:1251e1259.
32. Curtis JR, Engelberg R, Young JP, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008;11:610e620.
19. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies:
33. Back AL, Young JP, McCown E, et al. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity
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and lack of closure. Arch Intern Med 2009;169: 474e479. 34. Slatore CG, Cecere LM, Reinke LF, et al. Patient-clinician communication: associations with important health outcomes among veterans with COPD. Chest 2010;138:628e634. 35. Miura Y, Asai A, Nagata S, et al. Dialysis patients’ preferences regarding cardiopulmonary resuscitation and withdrawal of dialysis in Japan. Am J Kidney Dis 2001;37:1216e1222. 36. Kurella Tamura M, Goldstein MK, Perez-Stable EJ. Preferences for dialysis withdrawal and engagement in
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advance care planning within a diverse sample of dialysis patients. Nephrol Dial Transplant 2010;25: 237e242. 37. Patrick DL, Starks HE, Cain KC, Uhlmann RF, Pearlman RA. Measuring preferences for health states worse than death. Med Decis Making 1994; 14:9e18. 38. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS 1999;13:1123e1131.
Journal of Pain and Symptom Management
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Brief Report
Insight Into Advance Care Planning for Patients on Dialysis Daisy J.A. Janssen, MD, PhD, Martijn A. Spruit, PhD, Jos M.G.A. Schols, MD, PhD, Frank M. van der Sande, MD, PhD, Leon A. Frenken, MD, PhD, and Emiel F.M. Wouters, MD, PhD Program Development Centre (D.J.A.J., M.A.S., E.F.M.W.), Centre of Expertise for Chronic Organ Failure (CIROþ), Horn; CAPHRI School for Public Health and Primary Care (D.J.A.J., J.M.G.A.S.), and Departments of General Practice and Health Services Research (J.M.G.A.S.), Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht; Proteion Thuis (D.J.A.J.), Horn; Division of Nephrology (F.M.v.d.S.), Department of Internal Medicine, and Department of Respiratory Medicine (E.F.M.W.), Maastricht University Medical Centreþ, Maastricht; and Department of Internal Medicine (L.A.F.), Atrium Medical Centre, Heerlen, The Netherlands
Abstract Context. Advance care planning is not included in regular clinical care for patients on dialysis. Insight into life-sustaining treatment preferences and communication about end-of-life care is necessary to develop interventions to improve advance care planning for patients on dialysis. Objectives. This cross-sectional observational study aimed to understand the preferences for life-sustaining treatments of outpatients on dialysis and to study the quality of patient-physician communication about end-of-life care and barriers and facilitators to this communication. Methods. The following outcomes were assessed in 80 clinically stable dialysis patients: demographics, clinical characteristics, life-sustaining treatment preferences (cardiopulmonary resuscitation and mechanical ventilation, and Willingness to Accept Life-Sustaining Treatment instrument), preference for site of death, quality of communication (Quality of Communication Questionnaire), and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire). Results. Patients were able to indicate their preferences for life-sustaining treatments and site of death. Preferences for life-sustaining treatments depend on the specific treatment, the expected outcome of treatment, and likelihood of an adverse outcome. Life-sustaining preferences were discussed with the nephrologist by 30.3% of the patients. Quality of the patient-physician communication about end-of-life care was rated poor. This study identified several barriers and facilitators to end-of-life care communication. Conclusion. Patients should receive information about treatment burden, expected outcome, and the likelihood of an adverse outcome when discussing
Address correspondence to: Daisy J.A. Janssen, MD, PhD, Program Development Centre, CIROþ, Centre of Expertise for Chronic Organ Failure, Hornerheide 1, Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
6085 NM Horn, The Netherlands. [email protected] Accepted for publication: January 19, 2012.
E-mail:
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2012.01.010
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life-sustaining treatments. Quality of patient-physician communication about end-of-life care needs to improve. Barriers and facilitators to communication about end-of-life care provide direction for future interventions to facilitate advance care planning for patients on dialysis. J Pain Symptom Manage 2013;45:104e113. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Chronic renal failure, end-stage renal disease, advance directives, advance care planning, life-sustaining treatment preferences, communication
Introduction The five-year mortality rate remains approximately 60% in patients on hemodialysis or peritoneal dialysis.1 Advance care planning is important to prepare patients on dialysis and their loved ones for the end of life.2 Nowadays, advance care planning is seen as a process of communication among the patients, their families, and professional caregivers, which includes, but is not limited to, discussing preferences for life-sustaining treatments.2,3 Previous studies suggest that advance care planning may improve the quality of end-of-life care for patients and their families.4,5 Achieving a sense of control and avoiding inappropriate prolongation of dying are important domains of quality end-of-life care for patients on dialysis.6 However, advance care planning is currently not included in routine clinical care for patients on dialysis.7,8 Only a minority of dialysis patients have prepared advance directives or discussed their preferences for lifesustaining treatments with their physicians.7,8 Moreover, neither family members nor physicians are able to predict accurately the preferences of dialysis patients for cardiopulmonary resuscitation (CPR).7 In patients with cancer, chronic obstructive pulmonary disease (COPD), or chronic heart failure, it has been shown that the preferences for life-sustaining treatments not only depend on the specific treatment but also on the expected outcome of treatment and likelihood of an adverse outcome.9,10 Singer et al.11 showed that illness severity and health state may have more influence on treatment preferences than on the description of the specific treatment in patients on dialysis. Communication about end-of-life care is an essential part of advance care planning.2 Indeed, studies in patients with renal disease
have shown the need for early communication about prognosis, the disease process, and endof-life care.12e14 Nevertheless, a recent study has shown that only 28% of the dialysis patients who died in the hospital had discussed issues concerning end-of-life care with their medical team in the year before their death.15 For the development of interventions to facilitate communication about end-of-life care, it is important to know, from the perspective of the patient, the current quality of patient-physician communication about endof-life care and barriers and facilitators to this communication. The objective of this observational study was to understand the preferences for life-sustaining treatments of outpatients on dialysis. Furthermore, we aimed to study the quality of patientphysician communication about end-of-life care and barriers and facilitators to this communication, as perceived by the patient.
Methods Design The present cross-sectional study was part of a multicenter, longitudinal, observational study concerning palliative care needs of patients with advanced chronic organ failure.16 Data about advance care planning in patients with COPD or chronic heart failure and about family caregiving and the stability of lifesustaining treatment preferences in COPD, chronic heart failure, or chronic renal failure were published previously.10,17,18
Study Population A convenience sample of patients was recruited at the dialysis department of one academic and five general hospitals in The Netherlands in 2008 and 2009. Patients were
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eligible if they had a diagnosis of end-stage renal disease requiring dialysis. Patients were excluded if they were not clinically stable for four weeks preceding the enrollment according to the referring nephrologist, were not optimally treated according to the available guidelines, or were living in a nursing home. The Medical Ethics Committee of the Maastricht University Medical Centerþ, Maastricht, The Netherlands, approved this study (MEC 07-3-054). All patients provided written informed consent. Data were collected from patients who were referred for the study but refused participation to compare demographic characteristics of participating and nonparticipating patients.
Measurements Patients were visited in their home environment or, if they preferred, during dialysis. Demographics, comorbidities (Charlson Comorbidity Index19), need for help with personal care, and self-perceived mobility problems were recorded. Health status was assessed by using the Dutch version of the Kidney Disease Quality of Life Short Form.20 Preferences for CPR and mechanical ventilation in their current health state (Table 1) were studied.21 Patients were asked where they preferred to be when they were likely to die (response options: home, hospital, care home, hospice, or ‘‘do not know’’). Patients’ life-sustaining treatment preferences were elaborated using the Willingness to Accept Life-Sustaining Treatment (WALT) instrument, which comprises six scenarios in which patients weigh treatment burden against treatment outcome, expressed in likelihood of different health states and length of life after treatment.9,22 Scenario 1 concerned low-
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burden therapy (a few days to a week in the hospital) and likelihood of death vs. return to current health. Scenario 2 concerned lowburden therapy and length of life after therapy (one week, one month, six months, or one year). Scenario 3 involved high-burden therapy (at least one month in the hospital and major interventions) and likelihood of death vs. return to current health. Scenario 4 concerned high-burden therapy and length of life after therapy. Scenario 5 concerned lowburden therapy and likelihood of functional impairment (being bedbound and needing help with all daily activities) vs. return to current health. Scenario 6 involved low-burden therapy and likelihood of cognitive impairment (not being aware of what is going on and not being able to recognize loved ones) vs. return to current health.22 Furthermore, patients reported the quality of communication with their nephrologist using the Quality of Communication (QOC) questionnaire.23 The QOC questionnaire consists of 13 items that form two domains (general communication and end-of-life care communication). Patients were asked to rate how good their doctor is at each of the items on a scale of zero to 10, with zero indicating ‘‘the very worst’’ and 10 indicating ‘‘the very best.’’ Patients were offered two additional response options: ‘‘My doctor did not do this’’ and ‘‘do not know.’’ Domain scores range from zero (worst) to 10 (best).23 Barriers and facilitators to communication about end-of-life care were assessed using the Barriers and Facilitators Questionnaire (BFQ).24 The BFQ comprises 15 barriers and 11 facilitators to communication about endof-life care. For each barrier and facilitator,
Table 1 Questions Asked of Patients About Their Treatment Preferences Treatment Mechanical ventilation
CPR
Question ‘‘The first treatment is short-term mechanical ventilation. You would be in an ICU, and a tube would be placed through your mouth or nose into your lungs. This tube would be attached to a breathing machine for a few days. During that time, you would have to be continuously on the breathing machine and would be unable to talk. If you were in your current health and were unable to breathe on your own, would you want to be on a breathing machine for a few days? There would be no guarantee that you would be able to come off the breathing machine and be able to breathe on your own.’’ ‘‘The second treatment is CPR, which consists of electric shocks to the heart, pumping on the chest, help with breathing, and heart medications given through the veins. Possible side effects of CPR include broken ribs and memory loss. Because you would be unconscious, other people would need to make the decision for you regarding your treatment. In your current health, would you want resuscitation (CPR) if your heart were to stop beating?’’
ICU ¼ intensive care unit; CPR ¼ cardiopulmonary resuscitation.
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the respondent was asked if the item applied to his/her situation (response options: applicable and not applicable).24 Finally, the nephrologists completed a written questionnaire concerning advance care planning for each patient. The questionnaire was developed for the present study and assessed whether the nephrologist discussed with the patient prognosis of survival, preferences for CPR and mechanical ventilation, the end of life, and palliative care. Response options were yes/no for each item.
Statistical Analysis All statistical analyses were done using SPSS 18.0 (SPSS Inc., Chicago, IL). Categorical variables were described as frequencies, whereas continuous variables were tested for normality and are presented as mean and SD or as median and interquartile (IQR) range. Frequencies are used to describe the patients’ life-sustaining treatment preferences as assessed with the WALT. We used a log-rank test to compare different WALT scenarios. A priori, a two-sided level of significance was set at a P-value of 0.05 or less.
Results Patient Characteristics In total, 109 dialysis patients were referred for the study and 80 patients agreed to participate (response rate 73.4%; Table 2). Participants were younger than nonparticipants (62.2 [15.6] years vs. 68.9 [13.1] years, respectively, P < 0.05). Most participating patients were male and living with a partner. Comorbidities were highly prevalent. In general, patients reported an impaired health status. More than half of the patients experienced mobility problems. Most patients (96.2%) were on hemodialysis.
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Table 2 Patient Characteristics (n ¼ 80) Age (years) Gender (male) Marital status (married/living with partner) Current smokers Body mass index (kg/m2) Charlson Comorbidity Index (points) Patients with $1 comorbidity Dependent in personal care Self-perceived mobility problems KDQOL-SF physical health composite KDQOL-SF mental health composite KDQOL-SF symptoms/problems KDQOL-SF effects of kidney disease KDQOL-SF burden of kidney disease Previous CPRa Previous mechanical ventilationa
62.2 48 52 12 25.5 4.0 56 19 45 38.4 52.0 75.5 68.1 46.7 7 17
(15.6) (60.0) (65.0) (15.0) (5.8) (2.0) (70.0) (23.8) (56.3) (10.3) (8.5) (15.5) (18.4) (24.4) (9.3) (22.7)
KDQOL-SF ¼ Kidney Disease Quality of Life Short Form; CPR ¼ cardiopulmonary resuscitation. Values are expressed as mean (SD) or n (%). a n ¼ 75.
likelihood of treatment outcome, as assessed with Scenarios 1, 3, 5, and 6 of the WALT (Table 3). The proportion of patients willing to accept treatment decreased as likelihood of death or functional or cognitive impairment as an outcome of treatment increased. The proportion of patients willing to accept treatment was statistically significantly different for Scenario 6 (low-burden therapy and likelihood of cognitive impairment) and Scenario 1 (low-burden therapy and likelihood of death; P < 0.005; Fig. 1). In addition, responses to Scenarios 2 and 4 of the WALT showed that the proportion of patients willing to accept treatment increased when extension of life after treatment increased (Table 4).
Preference for Site of Death About half of the patients (48.7%) preferred dying at home, whereas 32.5% of the patients preferred to die in a hospital, and 15.0% preferred to die in a hospice or a care home. Only 3.8% of the patients did not know where they preferred to die.
Life-Sustaining Treatment Preferences
Advance Care Planning
All patients reported a preference regarding CPR, and only two patients were unable to report their preference regarding mechanical ventilation. Most patients preferred CPR (82.5%) and invasive mechanical ventilation (81.3%). Patients were able to indicate their treatment preferences according to the treatment burden, treatment outcome, and
For 66 patients (82.5%), the nephrologists (n ¼ 15) returned the questionnaire concerning advance care planning. Nephrologists reported communication regarding CPR or mechanical ventilation in 57.6% of their patients, whereas only in 30.3% did the patient and nephrologist both report having discussed preferences for CPR or mechanical ventilation.
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Table 3 Proportion of Patients Who Would Want Treatment at Different Likelihoods of Death or Functional or Cognitive Impairment as an Outcome of Treatment (n ¼ 80) Likelihood of Outcome (%) WALT Treatment/Outcome Low-burden/likelihood of death (vs. current state) High-burden/likelihood of death (vs. current state) Low-burden/likelihood of functional impairment (vs. current state) Low-burden/likelihood of cognitive impairment (vs. current state)
0
1
10
50
90
99
100
Do Not Know (%)
95.0 92.5 d d
95.0 92.5 97.5 96.3
95.0 92.5 95.0 92.5
83.8 83.8 71.3 52.5
53.8 47.5 46.3 28.8
42.5 35.0 40.0 20.0
d d 36.3 10.0
2.5 1.3 d d
WALT ¼ Willingness to Accept Life-Sustaining Treatment instrument. Values are expressed as proportion of patients willing to accept treatment.
In addition, nephrologists reported communication regarding the end of life in 10.6% of the participating patients. Finally, they reported communication regarding palliative care in 10.6% of the participating patients.
and ‘‘asking you about important things in life’’ (62.5%).
Quality of End-of-Life Care Communication
The most frequently endorsed barriers to communication about end-of-life care were: ‘‘I do not know what kind of care I want if I get very sick’’; ‘‘I’m not ready to talk about the care I want if I get very sick’’; ‘‘I would rather concentrate on staying alive than talk about death’’; and ‘‘I’m not sure which doctor will be taking care of me if I get very sick.’’ The most frequently endorsed facilitators to communication about end-of-life care were: ‘‘I have been very sick’’; ‘‘I have had family or friends who have died’’; ‘‘I trust my doctor’’; ‘‘My doctor cares about me as a person’’; ‘‘My doctor is very good at taking care of renal disease’’; and ‘‘I feel sure that my doctor will be there for me if I get very sick’’ (Table 5).
Patients rated the general communication skills of their nephrologist high on the QOC questionnaire (median score 8.0 [IQR 7.3e9.0] points), whereas quality of communication about end-of-life care was rated very low (median score 1.1 [IQR 0.0e3.4] points). Low median scores for communication about end-of-life care were mainly because of the fact that most patients reported that items concerning end-of-life care were not discussed. Indeed, most physicians did not address ‘‘talking about your feelings concerning the possibility that you might get sicker’’ (70.0%), ‘‘talking about how long you have to live’’ (85.0%), ‘‘talking about what dying might be like’’ (91.3%), ‘‘asking about spiritual or religious beliefs’’ (87.5%), ‘‘involving you in treatment discussions about your care’’ (63.8%),
Barriers and Facilitators to End-of-Life Care Communication
Discussion Key Findings
Fig. 1. Proportion of dialysis patients (n ¼ 80) that accepts treatment according to the burden of treatment and likelihood of an adverse outcome. P-value less than 0.005 for comparison of scenario ‘‘low-burden therapy and likelihood of cognitive impairment’’ with scenario ‘‘low-burden therapy and likelihood of death.’’
The present study shows that dialysis patients are able to indicate their preferences for lifesustaining treatments. Preferences for lifesustaining treatments depend on the specific treatment, the expected outcome of treatment, and the likelihood of an adverse outcome. Only a minority of the dialysis patients had discussed preferences for life-sustaining treatments with their nephrologists. Moreover, aspects concerning end-of-life care were scarcely discussed and the quality of patient-physician communication about end-of-life care was poor. We have identified several barriers and facilitators to communication about end-of-life care that may provide direction for future interventions
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Table 4 Proportion of Patients That Would Want Treatment With Outcome of Different Degrees of Life Extension (n ¼ 80) Life Extension WALT Treatment Low-burden High-burden
1 week
1 month
6 months
1 year
Do Not Know (%)
50.0 41.3
62.5 57.5
87.5 82.5
90.0 86.3
3.8 2.5
WALT ¼ Willingness to Accept Life-Sustaining Treatment instrument. Values are expressed as proportion of patients willing to accept treatment.
to improve communication about end-of-life care.
Life-Sustaining Treatment Preferences A recent study has shown that dialysis patients have opinions about their willingness to undergo CPR and mechanical ventilation in several clinical conditions, such as dementia or a permanent vegetative state.25 Most dialysis patients in the present study reported to prefer CPR in their current health state. This is in line with a previous study.26 However, the present study also shows that dialysis patients determine their treatment preferences on burden of
treatment, treatment outcome, and the likelihood of an adverse treatment outcome. Most patients were unwilling to undergo a treatment with a low likelihood of success. So, they may not be aware of the poor outcome of CPR in dialysis patients.26 Indeed, we have shown that CPR and mechanical ventilation are only discussed with a minority of the patients. Therefore, dialysis patients may base their preference for CPR on the unrealistic outcomes as shown on television instead of information from their physicians.26 Discussing preferences for lifesustaining treatments should include discussing burden of treatment, treatment outcome, and
Table 5 Barriers and Facilitators to End-of-Life Care Communication (n ¼ 80) Items Barriers I do not know what kind of care I want if I get very sick I am not ready to talk about the care I want if I get very sick I do not like to talk about getting very sick My doctor does not like to talk about me getting very sick My doctor never seems to have the time to talk about issues such as end-of-life care I would rather concentrate on staying alive than talk about death I feel that talking about death can bring death closer I have a living will, and that means I do not need to talk with my doctor about the care I want if I am too sick to speak for myself My ideas about the kind of medical care I want change at different times I worry that talking about getting sick is too depressing for my doctor I do not want to make plans for the future I have not been very sick I have concerns about bringing up assisted suicide I am not sure which doctor will be taking care of me if I get very sick Doctors look down on people who developed disease because of smoking Facilitators I have been very sick I have had family or friends who have died I worry about the quality of my life in the future I trust my doctor My doctor cares about me as a person My doctor is very good at taking care of renal disease I worry that I could be a burden on my friends and family if I get very sick My doctor often asks me about end-of-life care My doctor is very good at talking about end-of-life care I feel sure that my doctor will be there for me if I get very sick Someone other than my doctor has talked with me about the care I would want if I got too sick to speak for myself (such as a nurse, home health worker, chaplain or clergy, and social worker)
Patients Responding, n (%) 63 52 37 12 10 60 13 12
(78.8) (65.0) (46.2) (15.0) (12.5) (75.0) (16.3) (15.0)
13 2 38 25 17 51 20
(16.3) (2.5) (47.5) (31.3) (21.3) (63.8) (25.0)
52 77 19 77 60 78 27 1 12 73 11
(65.0) (96.3) (23.8) (96.3) (75.0) (97.5) (33.8) (1.3) (15.0) (91.3) (13.8)
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the likelihood of an adverse treatment outcome to allow patients to make carefully considered decisions. Furthermore, life-sustaining treatment preferences may change during the course of the disease.18,27 Thus, discussing life-sustaining treatment preferences should not be limited to preparing advance directives. Discussing life-sustaining treatment preferences also should prepare patients and their loved ones to participate with physicians in making the best possible in-the-moment medical decisions. Indeed, advance directives can support in-the-moment decision making.28
Communication About End-of-Life Care The present study shows that the quality of patient-physician communication about end-of-life care is poor. Most end-of-life care topics, such as prognosis, the process of dying, and spirituality, are rarely discussed. This is in line with previous findings in patients with advanced COPD or chronic heart failure.10,29,30 Barriers and facilitators to communication about end-of-life care may provide directions for future interventions. For example, 79% of the patients reported ‘‘I do not know what kind of care I want if I get very sick.’’ This barrier is associated with fewer discussions concerning end-of-life care.24 At the same time, patients reported clear opinions about life-sustaining treatments and site of death. Most likely, patients are not aware of their treatment options at the end of life.8 Therefore, explaining treatment options may help to overcome this barrier. In addition, 65% of the patients reported that they were not ready to talk about the care they want if they get very sick. So, it is unlikely that these patients will initiate discussions concerning advance care planning. A previous qualitative study confirms that dialysis patients lack insight into the severity of their disease and will not initiate discussions concerning advance care planning. They expect their health care providers to initiate these discussions.31 Physicians report the fear of taking away patients’ hope as a barrier to the initiation of these discussions.24 Nevertheless, hope has a central role in the process of advance care planning. Hope is highly individual and helps to determine the future goals of care and a patient’s willingness to engage in discussions concerning end-of-life care.31 In fact, patients
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report that information about prognosis is vital in maintaining the ability to hope.31 For patients who are uncomfortable with talking about prognosis, a more indirect approach to discussing prognosis may be warranted.32 Physicians should take the emotional state of patients and their families into account when discussing prognosis.2,32 Also, physicians should be careful in being explicit in prognostic information. For example, addressing prognosis in terms of outcomes for groups rather than individuals may be more acceptable to patients.32 Patients should be reassured that they will not be abandoned at the end of life.32,33 Another important barrier to communication about end-of-life care is ‘‘I’m not sure which doctor will be taking care of me if I get very sick.’’ Therefore, continuity of care may be an important factor to consider in facilitating advance care planning. In fact, in patients with COPD, it has been shown that the length of the relationship with the clinician was related to the perceived quality of patient-clinician communication.34 Furthermore, only 15% of the patients reported ‘‘My doctor is very good at talking about end-of-life care.’’ The endorsement of this facilitator is associated with increased occurrence of end-of-life care communication.24 Physicians need the skills to guide the process of advance care planning. Training physicians in end-of-life care communication may be a target for future interventions.
Limitations Some limitations should be considered in interpreting the results. First, the study population consists of a relatively small convenience sample of dialysis patients. A percentage of the eligible patients (26.6%) refused participation, and it is unknown whether these patients were willing to discuss preferences for lifesustaining treatments and end-of-life care. This may limit the generalizability of the results. Second, participating patients were younger than nonparticipants. This might have influenced our results. However, previous studies did not show a relationship between age and treatment preferences or engagement in end-of-life discussions.35,36 Third, patients using peritoneal dialysis were underrepresented in this study. Although a previous study did not show a relationship between preferences
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for CPR and type of dialysis, the influence on our results may be a limitation.35 Fourth, the WALT, QOC questionnaire, and BFQ were used before in patients with other chronic diseases, such as COPD, chronic heart failure, or cancer,9,22e24 but were not validated for patients on dialysis. The questions we used to assess the patients’ preferences for CPR and mechanical ventilation in their current health state were modified before from an existing measure of preferences for life-sustaining treatments in different health states and were previously used in patients with AIDS or COPD.21,37,38 However, it is possible that some patients did not report their true preferences because they did not fully understand the questions and based their response on incomplete information. Finally, ethnicity may influence aspects concerning end-of-life care. For example, a previous study has shown a lower frequency of ‘‘do not resuscitate’’ orders in non-Caucasian dialysis patients.15 Only a few patients in the present study were non-Caucasian, and it is likely that this has influenced our results.
Conclusions The present study provides directions to facilitate the process of advance care planning for patients on dialysis. Patients’ preferences for life-sustaining treatments need to be understood in the context of the knowledge and expectations of life-sustaining treatments. Therefore, patients should receive information about treatment burden, expected outcome, and the likelihood of an adverse treatment outcome when discussing life-sustaining treatments. This will allow the patients to make carefully considered decisions about life-sustaining treatments. Furthermore, the quality of patient-physician communication about end-of-life care needs to improve. Nephrologists should include discussing topics such as prognosis and end-of-life care in the process of advance care planning. This study identified barriers and facilitators to communication about end-of-life care that should be taken into account in the development of interventions to facilitate advance care planning for patients on dialysis.
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Disclosures and Acknowledgments This project was supported by: Proteion Thuis, Horn, The Netherlands; Center of Expertise for Chronic Organ Failure (CIROþ), Horn, The Netherlands; Grant 3.4.06.082 of The Netherlands Asthma Foundation, Leusden, The Netherlands; The Weijerhorst Foundation, Maastricht, The Netherlands; and Stichting Wetenschapsbevordering Verpleeghuiszorg (SWBV), Utrecht, The Netherlands. No funding source had any role in design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The authors have no financial or personal relationships with individuals, organizations, or companies that might be perceived to bias the work. The authors are grateful to research nurses Els Verstraeten, RN, and Jamila DekkerHeuts, RN, for collection of the data and to Mrs. Linda Koolen for input of the data. The authors also are grateful to the doctors of the following collaborating hospitals for their participation in this study: Maastricht University Medical Centerþ, Maastricht, The Netherlands; Laurentius Hospital, Roermond, The Netherlands; Maxima Medical Center, Veldhoven, The Netherlands; Catharina Hospital, Eindhoven, The Netherlands; Atrium Medical Center, Heerlen, The Netherlands; and Orbis Medical Center, Sittard, The Netherlands.
References 1. Kramer A, Stel V, Zoccali C, et al. An update on renal replacement therapy in Europe: ERA-EDTA Registry data from 1997 to 2006. Nephrol Dial Transplant 2009;24:3557e3566. 2. Davison SN, Torgunrud C. The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 2007;49:27e36. 3. Fried TR, O’Leary JR. Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. J Gen Intern Med 2008;23:1602e1607. 4. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 2007;55:189e194. 5. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning
112
Janssen et al.
Vol. 45 No. 1 January 2013
on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
development and validation. J Chronic Dis 1987; 40:373e383.
6. Singer PA, Martin DK, Kelner M. Quality end-oflife care: patients’ perspectives. JAMA 1999;281: 163e168.
20. Korevaar JC, Merkus MP, Jansen MA, et al. Validation of the KDQOL-SF: a dialysis-targeted health measure. Qual Life Res 2002;11:437e447.
7. Miura Y, Asai A, Matsushima M, et al. Families’ and physicians’ predictions of dialysis patients’ preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis 2006;47:122e130.
21. Stapleton RD, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Association of depression and life-sustaining treatment preferences in patients with COPD. Chest 2005;127:328e334.
8. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 2010;5:195e204.
22. Fried TR, Bradley EH, Towle VR. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci 2002;57: S348eS354.
9. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002;346:1061e1066. 10. Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest 2011;139:1081e1088. 11. Singer PA, Thiel EC, Naylor CD, et al. Lifesustaining treatment preferences of hemodialysis patients: implications for advance directives. J Am Soc Nephrol 1995;6:1410e1417. 12. Russ AJ, Shim JK, Kaufman SR. The value of ‘‘life at any cost’’: talk about stopping kidney dialysis. Soc Sci Med 2007;64:2236e2247. 13. Davison SN. Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol 2006;1: 1023e1028. 14. Fine A, Fontaine B, Kraushar MM, Rich BR. Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study. Perit Dial Int 2005;25:269e273. 15. McAdoo SP, Brown EA, Chesser AM, Farrington K, Salisbury EM. Measuring the quality of end of life management in patients with advanced kidney disease: results from the panThames renal audit group. Nephrol Dial Transplant 2012;27:1548e1554. 16. Janssen DJ, Wouters EF, Schols JM, Spruit MA. Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol. BMC Palliat Care 2008;7:5. 17. Janssen DJ, Spruit MA, Wouters EF, Schols JM. Family caregiving in advanced chronic organ failure. J Am Med Dir Assoc 2012;13:394e399.
23. Engelberg R, Downey L, Curtis JR. Psychometric characteristics of a quality of communication questionnaire assessing communication about end-oflife care. J Palliat Med 2006;9:1086e1098. 24. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127:2188e2196. 25. Sanchez-Tomero JA, Rodriguez-Jornet A, Balda S, et al. Exploring the opinion of CKD patients on dialysis regarding end-of-life and advance care planning. Nefrologia 2011;31:449e456. 26. Moss AH, Hozayen O, King K, Holley JL, Schmidt RJ. Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit. Am J Kidney Dis 2001;38:847e852. 27. Fried TR, O’Leary J, Van Ness P, Fraenkel L. Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment. J Am Geriatr Soc 2007;55:1007e1014. 28. Sudore RL, Fried TR. Redefining the ‘‘planning’’ in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010; 153:256e261. 29. Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J 2004;24:200e205. 30. Janssen DJ, Curtis JR, Au DH, et al. Patient-clinician communication about end-of-life care for Dutch and US patients with COPD. Eur Respir J 2011;38:268e276. 31. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333:886.
18. Janssen DJ, Spruit MA, Schols JM, et al. Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure. Chest 2012;141:1251e1259.
32. Curtis JR, Engelberg R, Young JP, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008;11:610e620.
19. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies:
33. Back AL, Young JP, McCown E, et al. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity
Vol. 45 No. 1 January 2013
Advance Care Planning for Dialysis Patients
and lack of closure. Arch Intern Med 2009;169: 474e479. 34. Slatore CG, Cecere LM, Reinke LF, et al. Patient-clinician communication: associations with important health outcomes among veterans with COPD. Chest 2010;138:628e634. 35. Miura Y, Asai A, Nagata S, et al. Dialysis patients’ preferences regarding cardiopulmonary resuscitation and withdrawal of dialysis in Japan. Am J Kidney Dis 2001;37:1216e1222. 36. Kurella Tamura M, Goldstein MK, Perez-Stable EJ. Preferences for dialysis withdrawal and engagement in
113
advance care planning within a diverse sample of dialysis patients. Nephrol Dial Transplant 2010;25: 237e242. 37. Patrick DL, Starks HE, Cain KC, Uhlmann RF, Pearlman RA. Measuring preferences for health states worse than death. Med Decis Making 1994; 14:9e18. 38. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS 1999;13:1123e1131.