Supplemental Table 1.
Empirical Studies
| First Author, Country, and Objectives | Population, Setting, and Intervention | Design and Methodological Rigor (Strong/Moderate/Weak) | Key Results | How the Intervention Was Thought to Work | Contextual Features Thought to Influence Implementation |
|---|---|---|---|---|---|
| Systematic reviews | |||||
| Lim (2016), Australia. Objectives: To determine whether advance care planning in hemodialysis patients, compared with no or less-structured forms of advance care planning, can result in fewer hospital admissions or less use of treatments with life-prolonging or curative intent, and if patient's wishes were followed at end of life. |
Systematic review: RCTs or quasi-RCTs with hemodialysis patients. Intervention: ACP is where the responsible physician helps the patient (with their family) to reflect on their future care, consults the patient on their priorities and preferences and levels of care, manages transition from active to palliative care, and, together with any spokesperson appointed by the patient, acts as an advocate for the patient in the event of incapacity, drawing on the patient's documented preferences. |
Systematic review. Rigor: Strong (comprehensive search strategy and rigorous assessment of study quality). |
Two studies (three reports) that involved 337 participants investigated advance care planning for people with ESKD. Neither of the included studies reported outcomes relevant to the review. Study quality was assessed as suboptimal. The results suggested patients were highly satisfied with the quality of communication and greater levels of comfort. Discussion regarding ACP and end-of-life care did not destroy hope or cause unnecessary discomfort or anxiety to patients. Given the lack of evidence for advance care planning for people receiving hemodialysis, large scale, well-designed RCTs involving people with ESKD are necessary to determine the efficacy and value of advance care planning for patients. |
Aiding patients to establish options and priorities for end-of-life care enables preferences to be maintained according to individual wishes. ACP enables patients to prepare for death, strengthen relationships with loved ones, achieve control over their lives, and relieve burden on others. | The most significant barrier may be lack of physician intervention to initiate and guide advance care planning discussions. |
| Luckett (2014), Australia. Review objectives: 1) To identify what interventions have been developed, piloted, and evaluated. 2) To identify which measures have been used in intervention and other studies. 3) To establish evidence for the efficacy of interventions. 4) To inform understanding of barriers and facilitators to implementation as well as stakeholders' perceptions of ideal approaches. |
Systematic review: Samples had to be adults with a primary diagnosis of CKD and/or families and the health professionals caring for this group. Intervention: ACP was defined as any formal means taken to ensure health professionals and family members are aware of patients' wishes for care in the event they become too unwell to speak for themselves. |
Systematic integrative review using narrative and meta-analysis. Rigor: Strong (comprehensive search, assessment of study quality, rigorous meta-analysis/synthesis). | Fifty-five papers were included in the review. Seven interventions were tested; all were narrowly focused, and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient/family outcomes in the form of improved wellbeing and anxiety following sessions with a peer mentor. Qualitative studies showed the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis separately from “aggressive” life-sustaining treatments (e.g., ventilation). Of eight intervention studies identified, four were RCTs, two used a predesign/postdesign, and two reported postdata without comparison. Rating of bias identified six of these studies as poor quality and two as fair. |
Loss of cognitive capacity is common, leaving families and nephrologists to decide whether to withdraw dialysis, so that patients may continue on dialysis or be resuscitated or ventilated, when they would have chosen otherwise. ACP facilitates an opportunity for discussion of treatment preferences, ensuring health care providers and family members are aware of patients' wishes. | Interventions do not give comprehensive attention to patient, caregiver, health professional, and system-related factors. Implementation enhanced by educating staff on the benefits of early ACP and ensuring staff have time for ACP as “core business.” Patients tended to wait for health professionals to raise ACP and dramatically overestimated their life expectancy; nephrologists discussed EOL issues based on prognosis but struggled to identify a suitable juncture; nurses felt uncomfortable raising ACP for fear of upsetting patients, families, and senior staff; judging the optimal timing for the ACP was difficult. Surrogates are influenced by their ideas rather than patient preferences, leading to poor congruence concerning EOL care decisions such as discontinuation of dialysis. |
| Noble (2008), UK. Review questions: 1) What are the experiences of those opting not to have dialysis to treat renal disease and their carers? 2) What is the difference in experience and trajectory to death, for those withdrawing from dialysis compared with those choosing not to start dialysis? |
Systematic review: Studies were included if they had been peer-reviewed and included adult populations with a principal diagnosis of ESRD. No specific intervention but advance care planning was included. |
Systematic narrative review: Papers were themed. Rigor: Weak (quality of studies not assessed; analysis is not clearly reported). |
Fifty-one quantitative papers and three qualitative papers included in the review. The presence of an advance directive requesting the cessation of dialysis, in addition to the family preference to stop dialysis, led to most nephrologists saying that they would stop dialysis. American nephrologists were more likely to stop than German or Japanese nephrologists. If the family disagreed with the patient's advance directive, nephrologists were less willing to stop dialysis. |
Patients identified hope as central to the advance care planning process in that hope helped them to identify future goals of care and influenced their willingness to engage in end-of-life discussions. | Potential barriers to hope were a reliance on health care professionals to initiate end-of-life discussions and the need for staff to focus on their daily clinical work. |
| Randomized controlled trials | |||||
| Briggs (2004), USA Objectives: To examine feasibility of patient-centered advance care planning (PC-ACP) and reliability of data collection instruments. |
Patients aged 50 yrs or more (and surrogates) attending heart failure, renal dialysis, and cardiovascular surgery clinics. Intervention: One-hour PC-ACP interview, delivered by an experienced ACP facilitator; focused on patient understanding/misconceptions of condition and ACP; what the patient would want the chosen surrogate to understand and act on; summary of choices and need for future discussions. |
Pilot RCT: patient/surrogate pairs. Randomized to PC-ACP (n = 13) or “usual care” (n = 14)—written material on advance directives, with referrals to trained advance care planning facilitators if requested. Predialysis patients offered a class on dialysis treatment choices and consequences. Rigor: Weak (Randomization not concealed. Gender and surrogate (spouse/child) imbalance in the groups. Small sample size). |
The experimental group had superior outcomes in congruence in statement of treatment preferences, decisional conflict, and patient's perceived quality of communication; but not in surrogate's perceived quality of communication, patient knowledge of ACP, or surrogate knowledge of ACP. | Deeply involving the surrogate as the patient clarifies their values and preferences will enable them to better represent the patient. | Interviewer skilled in facilitating difficult conversations regarding future medical care. |
| Kirchhoff (2012); USA Objectives: 1) to identify patient choices using patient-centered advance care planning (PC-ACP) compared with usual care, and 2) for those patients who died, to assess whether their EOL care was in accord with their choices stated on study intake. |
Patients (and their surrogates) with a diagnosis of end-stage congestive heart failure (CHF) or ESRD; at risk of serious complication or death in the next two years; receiving outpatient medical care, from two centers in Wisconsin. Intervention: 1–1.5 hour PC-ACP interview, delivered by a trained ACP facilitator to assess the patient and surrogate understanding of illness; provide information about treatment options and their benefits and burden; assist in documentation of treatment preferences; help prepare surrogates to make decisions that honor the patient's preferences; ending with the documentation of patient preferences for care using the Statement of Treatment Preferences form. |
RCT: 313 patients with CHF (n = 179) or ESRD (n = 134) and their surrogates who were randomized to receive either PC-ACP (n = 160; CHF = 88, r = 70) or usual care (n = 153; CHF = 89, r = 64). Rigor: Moderate (clear objectives, adequate randomization, not blinded, good follow-up, underpowered). |
Among ESKD patients, significantly more experimental patients (37.7%) chose to withdraw from dialysis than controls (17%)—however, this was not discussed in the interview. Hundred and ten deaths; 74% (n = 81) of the patients made their own decisions until death and therefore received care in accord with their wishes. Patients and surrogates were usually appreciative of discussions. They asked why no one had raised these issues earlier. |
When we are doing disease-specific planning, we are really helping prepare both the surrogate and the patient to face future decisions in a more informed and prepared way. | The facilitators (selected nurses, social workers, and chaplains) were trained in delivery of the intervention and observed during the study. They received video-taping, evaluation, and feedback. Health professionals reluctant to hold sensitive discussions. Routinizing the discussions requires a facilitator and dedicated time, checking to see if preferences have changed. |
| Perry (2005); USA Objectives: To explore the impact of peer mentors (dialysis patients trained to help other patients) on end-of-life planning. |
Patients from 21 dialysis centers across Michigan. Intervention: Peers were trained through an advance directive (AD) workshop and also completed their own ADs. Eight contacts with patients over a two- to four-month period: three face-to-face and five by phone. Discussion of chronic illness experiences, values, spirituality, fears, AD issues, and documents. |
RCT: 203 participants in three groups: usual care (n = 81); printed material on AD (n = 59); peer intervention (n = 63). Rigor: Moderate (randomization briefly described; nonblinded outcome assessment). |
Peer mentoring significantly increased the completion of ADs overall; most prominently among African Americans, also improving comfort discussing subjective wellbeing and anxiety. Among white patients, printed material on ADs decreased reported suicidal ideation. | Face-to-face relationship with someone with similar experiences engenders trust, which motivates completion of ADs. | African Americans may be more open to peer interventions because their culture partakes of oral, rather than written traditions, which may be mistrusted. |
| Song (2010), USA Objectives: To determine the feasibility and acceptability of patient-centered advance care planning (PC-ACP) among African Americans and their surrogate decision-makers. |
African Americans over 18 with stage 5 CKD receiving either center hemodialysis or home peritoneal dialysis for at least three months and their surrogates. Intervention: One-hour PC-ACP interview, delivered by a trained ACP facilitator. Addressing: 1) representational assessment of participants' beliefs about their illness; 2) exploration of misunderstandings about CKD and life-sustaining treatment, including dialysis; 3) creation of conditions for conceptual change; 4) introduction of replacement information; and 5) summarization of the discussion. |
Pilot RCT: 19 patient/surrogate pairs. Randomized to PC-ACP (n = 11) or “usual care” (n = 8)—written information on advance directives provided by a nurse or social worker who encouraged patients to complete an AD and addressed their questions about life-sustaining treatment options. Questions about medical options were referred to physicians. Rigor: Moderate (clearly focused question, randomization acceptable, outcome data collectors blinded, very small sample size). |
Significantly greater congruence and quality of communication in the intervention dyads. No significant difference in patient-clinician interaction, patient's difficulty in making choices, surrogate's comfort in decision-making, or psychospiritual wellbeing of the patient and surrogate. A shift among participants toward using all possible life-sustaining treatments to prolong their lives. |
PC-ACP promotes skills related to initiating discussions, assisting individuals in the identification of values and goals related to their health care, and developing educational and organizational systems that are effective in implementing an individual's plan of care. | African Americans typically prefer continuing life-sustaining treatment. |
| Song (2015); USA Objectives: To test the effect of an ACP intervention on preparation for EOL decision-making for dialysis patients and surrogates, and for surrogates' bereavement outcomes. |
Patients dialyzed for at least six months and at risk of dying in the next 12 months, and their surrogates, from 20 dialysis centers in North Carolina. Intervention: A psychoeducational intervention to help patients clarify EOL preferences and prepare the surrogate for making decisions on the patient's behalf, with a trained nurse facilitator at the center and a follow-up session at home two weeks later, with completion of a “goals of care” document to indicate patient preferences and ADs. Facilitator adherence to protocol monitored. |
RCT: 210 dyads randomized to intervention (n = 109) and control (n = 101) groups. Rigor: Strong (concealed randomization, blinded outcome assessment, sample size adequate, although small for bereavement measures). |
Dyad congruence and surrogate decision-making confidence were better in the intervention group, but patient decisional conflict did not differ between groups. Forty-five patients died during the study. Intervention surrogates had less anxiety, depression, and post-traumatic distress than controls. |
ACP can help prepare patients and surrogates for treatment decision-making at the end of life by providing individualized information on effectiveness of mechanical supports at the end of life; by helping the patient to clarify values; and by actively involving the surrogate to help prepare for the emotional burden of decision-making. | Intervention sessions were audited for fidelity and refresher training offered. African Americans have been reported as less amenable to ACP, but the focus on decision-making rather than advance directives could have made this more acceptable. |
| Song (2016)*; USA Objectives: To compare the efficacy of an ACP intervention on preparation for end-of-life decision-making and postbereavement outcomes for African Americans and whites on dialysis. *A secondary analysis of data from Song (2015) |
Patients dialyzed for at least six months and at risk of dying in the next 12 months, and their surrogates, from 20 dialysis centers in North Carolina. Intervention: a psychoeducational intervention to help patients clarify EOL preferences and prepare the surrogate for making decisions on the patient's behalf, with a trained nurse facilitator at the center and a follow-up session at home two weeks later, with completion of a “goals of care” document to indicate patient preferences and ADs. Facilitator adherence to protocol monitored. |
A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants and 210 patient-surrogate dyads (67.4% African Americans). Rigor: Moderate (the study was not powered to test the interaction of the intervention with race). |
Among African Americans (but not whites), the intervention was superior to usual care in improving dyad congruence and surrogate decision-making confidence two months after intervention and in reducing surrogates' bereavement depressive symptoms. | ACP can help prepare patients and surrogates for treatment decision-making at the end of life by providing individualized information on effectiveness of mechanical supports at the end of life, by helping the patient to clarify values, and by actively involving the surrogate to help prepare for the emotional burden of decision-making. | It may be that the intervention aligns with African Americans' familial, religious, and communal frame of reference; whites in the control group seemed to benefit simply from being asked thought-provoking questions repeatedly. |
| Non-RCT intervention studies | |||||
| Eneanya (2015), USA Objectives: To test the shared decision-making renal supportive care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. |
Hemodialysis patients who are at high risk of death in the ensuing six months, attending 16 dialysis units associated with two large academic centers. Intervention: Nephrologists and social workers will communicate prognosis and provide EOL planning in face-to-face encounters with patients and families using a social work–centered algorithm. Follow-up sessions with the social worker will take place monthly to provide further support, education, information, and referral to resources such as hospice. |
Protocol for a prospective cohort study with a retrospective cohort serving as the comparison group. | Protocol: No results | The intervention systematically elicits patient preferences for EOL care, so that concordant care can be provided. | |
| Hayek (2014), USA. Objectives: To examine the effectiveness of an electronic medical record (EMR)-based reminder in improving AD documentation rates. |
Hundred and fifty-seven patients aged >65 yrs, CHF, COPD, AIDS, malignancy, cirrhosis, ESRD, or stroke attending a hospital outpatient clinic. Intervention: Adding a visual reminder of “Advanced Directives Counseling” to the EMR problem list of outpatients with high risk for morbidity/mortality. |
Design: Test-retest of nonequivalent groups—initial cross-sectional estimation of the percentage of patients with documented ADs; retested twice over the following year. Rigor: Weak (design open to confounding, fair sample size. Lack of detail on physicians' AD discussions with patients). |
Of the initial pre-intervention sample (n=100) none had AD documented. 588 patients were screened and 157 (26.7%) were eligible. Over 6 months, 64 of these patients were seen in clinic; 38 had AD on their problem list. By the end of the study, 29 (76%) charts with the EMR reminder had documentation of an AD, compared to 3 (11.5%) of those without. Results suggest that EMR reminders may improve AD documentation rates. | By adding AD to the patient's active problem list, its importance is highlighted and seen as equivalent as the patient's medical problems, therefore encouraging physicians to address them. | E-mail and visual alerts contribute to information overload, leading physicians often to either ignore or avoid them. The intervention in the present study was simple, cost-effective and did not require any extra financial or human resources. Combining AD discussions with the outpatient visit workflow serves as a reminder to the health care provider. |
| Seal (2007), Australia Objectives: To explain the role of patient advocacy in the advance care planning process. |
Nurses on the palliative care, respiratory, renal and colorectal pilot wards, and the hem-oncology coronary care, cardiology, and neurology/geriatric control wards. Intervention: The Respecting Patient Choices Program (RPCP) to improve use of AD through a framework of educative, patient information, safety and quality systems, and policy support for ACP, plus equipping mainly nurses, through a comprehensive two day training course, with skills and resources to facilitate the process. |
A prospective nonrandomized controlled trial, with focus groups. 74 in the intervention group; 69 in the control group. Rigor: Weak (nonvalidated questionnaires; nonrandomized trial with nonequivalent control group). |
Statistically significant differences in favor of the intervention wards in nurses' self-reported willingness, efficacy, and job satisfaction in relation to upholding patients informed choices about their end-of-life treatment, supported by focus group findings. | Being able to provide information to patients while they were still well enough to talk with their families stimulated communication, enabling people to determine their future care and easing their concerns about loss of control. The program provided a legitimate platform for nurses to empower patients and to advocate on their behalf. | Organizational endorsement of ACP with framework of RPCP encouraged nurses to be patient advocates. Pressure from medical staff and relatives to treat at all costs can prevent the patients' wishes being respected. |
| Weisbord (2003), USA. Objectives: To identify symptom burden, health-related quality of life (HRQoL) and advance directives in extremely ill hemodialysis patients to assess their suitability for palliative care and to ascertain the acceptability of palliative care to patients and specialist health professionals. |
Nineteen patients who received outpatient dialysis three times per week in a hospital, for at least three months, and had modified Charlson comorbidity scores of P8. | Single-group test-retest study. Each patient completed surveys to assess symptom burden, HRQoL, and prior advance care planning. Palliative care specialists then visited patients twice and generated recommendations. Patients again completed the surveys, and dialysis charts were reviewed to assess nephrologists' compliance with recommendations and nephrologists' documentation of symptoms reported by patients on the symptom assessment survey. Rigor: Weak (small, single-group test-retest study). |
Patients: mean age 67 yrs, majority male, six of the 19 patients died before end of the study. Advance care planning: Twelve patients (63%) had never spoken to their nephrologist about their wishes for care at the end of life; five (26%) had never spoken to their family or friends. Six (32%) had executed a living will, and of these, four had informed their nephrologist verbally and three had presented a copy of the document to their nephrologist. Seventeen patients (89%) reported having someone they desired to make medical decisions for them at the end of life; six (32%) had formally appointed this person in writing as a surrogate decision-maker. Postintervention assessment: no differences were observed in symptoms, HRQoL, or number of patients making advance directives as a result of the intervention. |
Patients have significant symptom burden and impaired HRQoL. Only a small number officially documented their wishes for their future care. | Nephrologists did not implement recommendations related to addressing advance directives or to pursuing workup for ongoing medical problems. Patients may discuss these issues with nurses, dieticians, and social workers, so incorporating palliative care may depend on their input. |
| First Author, Country, and Objectives | Population and Setting | Design, Methods of Data Collection, and Methodological Rigor (Strong/Moderate/Weak) | Key Results | Explanation of the Results | Contextual Features Thought to Influence Implementation |
|---|---|---|---|---|---|
| Observational studies | |||||
| Al-Jahdali (2009), Saudi Arabia. Objectives: To examine the preferences for CPR and end of life medical intervention among Saudi HD patients. |
Hundred patients from two hospitals hemodialyzed for two yrs or more (mean duration 6.0 years). | Multicenter cross-sectional, observational study. Data collection: questionnaire completed during dialysis capturing demographics, education, employment, family size, knowledge of CPR, mechanical ventilation, and ICU admission; and responses to scenarios on EOL decisions, medical interventions, CPR, ICU admission, and surrogate decision-makers. Rigor: Moderate (questionnaire trialed on a sample of patients, appropriate use of statistics to interpret data). |
More than 95% of patients had little or no knowledge about CPR, intubation, and mechanical ventilation; majority wanted their physician to make decisions about CPR if they did not have an AD, and only 22% believed that decisions should be made by family members. Overall, physicians should advise patients about their disease/prognosis and discuss the effects of future medical interventions. Informed patients can make rational choices about EOL issues. | Limited patient education about CPR and ventilatory support. ACP preferences are rarely discussed with patients and their families. Physicians may lack time, training, or be uncomfortable with EOL discussions. |
In Saudi society, ADs are not routinely discussed (not for religious reasons but) because physicians fear distressing patients. |
| Anderson (2006), USA. Objectives: To establish the preferences and directives of severely ill dialysis patients/surrogates and whether these change with time or are influenced by patient's functional status; and whether ACPs established by patients correlate with clinical outcomes. |
Hundred and nine peritoneal dialysis (PD) patients in an academic nursing home. | Design: Retrospective chart review of PD patients. Patients were followed up to death or loss to follow-up during a 14-year period (1986 to 2000). Rigor: Strong (all data extracted systematically and appropriate use of statistics). |
60.6% of patients were women, 54.1% were white, 45.0% African American, and 0.9% Asian. ACPs were obtained for 108 patients. Do not attempt resuscitation (DNAR) status was significantly associated with increased age, lower ADL scores, coronary disease, amputation, and dementia. In compliance with ACP: patients indicating do not hospitalize (DNH) spent as much time in hospital as those planning to accept hospitalization. Seven of 46 patients designated attempt CPR (ACPR) had CPR attempted. For these chronically ill patients, age and functional status strongly influence DNAR and DNH plans. ACP was not conclusive in determining events during acute illness. |
Nonadherence with DNH and ACPR plans may have occurred due to decisions about hospitalization during times of acute illness with patients who retained capacity (or their surrogates) who changed their minds. CPR not being attempted for ACPR patients may be because CPR is rarely performed in nursing homes. | The near-complete participation with ACP is attributable to the facility's explicit requirement for ACP, the commitment of staff in ACP participation, and high rates of face-to-face discussions with patients and family. African American patients participated in ACP as often as whites due to discussions and inclusion of family members. |
| Calvin (2006), USA. Objectives: To develop an instrument to assess readiness of patients with chronic kidney disease to discuss advance care plans. |
Questionnaire assessed for content validity by a panel of four experts in end-of-life care, and a patient panel of five persons currently being treated with HD in an inpatient setting. Thirty-item instrument piloted with another sample of 10 patients on HD. | Design: Development of a questionnaire. Rigor: Weak (content validity and reliability assessed in the instrument but only using a small sample. Inadequate reporting of results from the pilot questionnaire). |
Content validity—Most patients rated the items as very relevant and very clear, but the professional panel ratings were more varied. Reliability—Cronbach's alpha (0.88) for the 30-item questionnaire. Patients also reported the item was “helpful and not difficult” and “gave me something to think about.” |
The questionnaire has the potential to ease the initiation of ACP discussions for health care providers—AD completion may remain low among patients with kidney failure because health care professionals are not assessing patient readiness to discuss ACP. | |
| Collins (2013), Ireland. Objectives: To investigate the views of HD patients on death and dying; beliefs about what is worse than death; likelihood of talking about death and dying and issues related to end-of-life care and ACP. |
Fifty HD (minimum three months) adult patients attending a hospital dialysis unit. | Design: Cross-sectional, questionnaire (modified version of the EOL survey developed by Life's End Institute) survey with a convenience sample of all adult patients. Rigor: Moderate (clear objectives, adequately sized convenience sample). |
Most participants were comfortable discussing death, but not always among family, with most wanting medical interventions to extend life. The control of pain and other symptoms, being physically comfortable and being at peace spiritually were the most important issues at end of life. | Generally, dialysis patients believed that their chances of survival were as good as anyone else's and did not see themselves as having a terminal illness, so issues relating to death and dying were rarely considered. The majority wanted medical intervention to extend life. | ADs have no legal status in Ireland, and very few people are aware of their existence. Health care professionals developed good relationships with patients allowing the discussion of sensitive topics and providing accurate information supported informed decisions. |
| Davison (2010), Canada. Objectives: To evaluate EOL care preferences of CKD patients, highlight gaps between current EOL care practice and patients' preferences, and to help prioritize and direct future innovation in EOL care policy. |
Hundred CKD patients (stages 4 and 5) in dialysis, transplantation, or predialysis clinics in a university-based renal program. | Design: Survey development and implementation (n = 584). Survey developed from literature review aiming to identify patients' preferences and expectations of EOL care, such as place of death, symptom treatment, and advance care planning. Preferences for hypothetical clinical EOL scenarios were also included. Rigor: Strong (survey rigorously reviewed by experts and piloted in four dialysis units; large sample). |
Patients relied on decision-making by the nephrology staff for EOL care; pain and symptom management, ACP, and psychosocial and spiritual support. ACP: Patients were comfortable discussing EOL issues with family and nephrology staff, yet less than 10% had done so, and only 38.2% had completed an advance directive Patients had poor knowledge of palliative care options and of their illness trajectory; 84.6% felt well informed but only 17.9% felt that their health would deteriorate over the next year. 61% regretted their decision to start dialysis. EOL care that patients most wanted was better education and support for staff, patients, and families, greater involvement of family, more focus on pain and symptom management, what to expect clinically near the end of life, palliative care, and hospice services. |
CKD patients need to be better informed with EOL care issues; symptom management was a significant priority for patients but pain in CKD is both underrecognized and undertreated. Current EOL clinical practices do not meet the needs of patients with advanced CKD. |
Doctors and nurses are vital for providing emotional, social, and spiritual support. However, a focus on technology has drawn physicians away, leaving emotional and spiritual support mainly to nursing staff and other professionals such as social workers and spiritual counselors. |
| Feely (2016), USA. Objectives: To retrospectively examine the prevalence and contents of ADs used by HD patients. |
Review of medical records of all HD patients (n = 808) in an academic medical center. | Design: Retrospective review of medical records of all HD patients over a five-year period (2007–2012). Data collected: Demographics, prevalence of ADs, and content analysis of those ADs with emphasis on management of EOL interventions including dialysis. Rigor: Strong (large sample size, clear objectives, and results well described and discussed). |
Forty-nine percent had ADs; 10.6% mentioned dialysis; and 3% specifically addressed dialysis management at EOL. Patients who had ADs were older. For HD patients who had ADs, more addressed CPR, mechanical ventilation, artificial nutrition and hydration, and pain management than dialysis. | Patients may have had ADs because they are more aware of their reduced life span and are encouraged by health professionals, especially, when they have comorbidities and see a range of professionals. | Patients receiving in-center HD come into contact with several health care professionals and create multiple opportunities for this high-risk group to complete ACP. |
| Janssen (2013), The Netherlands Objectives: To investigate HD patient preferences for life-sustaining treatments; and to examine the quality of patient-physician communication about EOL care, including barriers and facilitators to this communication. |
Eighty ESRD HD patients attending dialysis departments in six hospitals. | Design: Cross-sectional, observational study examined palliative care needs using a convenience sample of ESRD patients. Validated questionnaires, administered at home or during dialysis sessions, to measure comorbidity, quality of life, willingness to accept life-sustaining treatment, and quality of/barriers to communication. Nephrologists completed a questionnaire on ACP for each patient to evaluate if they discussed prognosis of survival, preferences for CPR and mechanical ventilation, the EOL, and palliative care with the patient. Rigor: Moderate (small convenience sample but validated questionnaires used). |
All patients communicated their choices for life-sustaining treatments and place of death. Thirty percent of patients discussed life-sustaining treatments with their nephrologist, and quality of patient-physician communication about EOL care was rated poor. Barriers and facilitators to end-of-life care communication were identified, e.g., barrier's “I would rather concentrate on staying alive than talk about death”; and facilitators “my doctor cares about me as a person.” | Sixty-five percent of patients reported that they were not ready to talk about the care they want if they get very sick, making it unlikely that they would initiate ACP discussions. Patient-physician communication about end-of-life care is poor: prognosis, dying, and spirituality are infrequently discussed. Most patients stated that they wanted CPR but are likely not aware of low success rates with CPR. |
In this setting, continuity of care was lacking and patients did not know which doctor was going to be caring for them at the EOL, which hindered development of ACP. |
| Rodriguez Jornet (2007), Spain. Objectives: To investigate dialysis patients' wishes for health care if their condition became untreatable; and to provide patients the opportunity to create an AD. |
Hundred and thirty-five dialysis patients (aged 18–95 yrs) on dialysis for more than three months and not expected to die within three months. | Design: Questionnaire gathering data on demographics, medical status, and preference for interventions in the event of deterioration. Rigor: Weak (statistics not a good fit for the design and no details regarding validation of the questionnaire). |
Sixty-four patients (47.8%) did not want CPR, respirator, tube feeding, or dialysis in case of coma, persistent vegetative state, severe dementia or terminal illness. Preference for nonintervention associated with older age. ACP occurs with both the physician-patient and also within the family especially with their children as decision-makers. Reasons for not responding to the questionnaires were patient reluctance to think about those situations and fear of their answers being misinterpreted. |
Patients were more likely to create an AD if they had experience of a family member previously being ill. | Physicians are somewhat reluctant to talk about the issue of ADs with patients. |
| Kataoka-Yahiro (2010), USA Objectives: To ascertain the attitudes to death and dying and completion of ACP among Asian American (AA) and native Hawaiian (NH) patients receiving hemodialysis for stage 4–5 CKD; and to discover with whom such patients prefer to discuss ACP. |
Fifty outpatients from four dialysis centers; patients were of AA or NH ethnicity; stage 4–5 CKD. | Design: Descriptive, cross-sectional survey design. A convenience sample of 50 participants aged 30–82 yrs was interviewed face-to-face. Data collection: EOL survey (43-item questionnaire) along with demographic information such as gender, age, ethnicity, marital status, level of education, current employment status, and annual household income. Rigor: Moderate (limited sample and survey questions were not developed from the theory of planned behavior framework; therefore, concepts can only be described and explored and compared descriptively). |
Most participants perceived dying as an important part of life and were comfortable talking about death but expressed concerns and fears about EOL issues. Aspects of ACP, such as planning a funeral service, getting finances in order, and completing the will were important. Most participants' attitudes about ACP were positive, but less than half (40%) had completed ACP. AAs and NHs would prefer to discuss ACP with family members rather than health or legal professionals. |
If participants have strong beliefs about death, dying, and ACP and have a positive evaluation of ACP, they will more likely have a positive attitude toward ACP. | The authors commented that family involvement and discussion, and collective decision-making, are important among AAs and NHs. |
| Kurella Tamura (2010), USA. Objectives: To investigate whether preferences for withdrawal and engagement in ACP varies by age, race, or ethnicity. |
Sixty-one patients (black, Latino, Asian, white) from two dialysis units. | Questionnaire designed to ascertain dialysis withdrawal preferences in five health states. Questionnaire and dialysis unit records used to find out engagement in ACP, completion of advance directives, do-not-resuscitate (DNR) or do-not-intubate orders. Rigor: Weak (no information on who administered questionnaires; small sample and subgroups). |
Fifty-seven percent of participants reported EOL discussion with a health care provider; 38% had completed an advance directive, and 10% had a DNR order. Blacks and Asians were more likely to engage in EOL discussions, but no black or Latino participants completed DNR orders as compared with 10% of Asians and 24% of whites. Blacks less likely to prefer dialysis withdrawal compared with other ethnic groups; this difference not explained by age, education, comorbidity, and other confounders. Rate of engagement in EOL discussions higher than documentation of ACP for all age and most ethnic groups. |
The results show that in this diverse population, age and race/ethnicity had clear patterns of association with treatment preferences and with engagement in ACP. Unexpectedly, younger patients and minorities did not have lower rates of engagement in each of the various aspects of ACP; rather the specific pattern of engagement differed by age and race/ethnicity groups. |
ACP may be less likely to be completed in cultures where patients rely on family members to advocate for their care preferences. |
| Miura (2006), Japan. Objectives: To assess how accurately family members and physicians can predict patients' wishes about medical care and treatment (including dialysis and CPR) under various medical scenarios. |
Four hundred fifty dialysis patients in 15 hospitals and their family members and physicians. | Design: A questionnaire survey administered among 450 dialysis patients in 15 hospitals, along with their family members and physicians Data collection: Survey determined preferences for CPR and dialysis therapy under various circumstances. Rigor: Moderate (large, convenience sample; questionnaire was not validated, and patients and family had opportunity to discuss answers). |
Three hundred ninety-eight (88%) patients/family members/physicians responded. Sixty-eight percent of family members correctly predicted patients' preferences for CPR. Sixty-seven percent predicted patients' preferences for dialysis if they were severely demented. Sixty-nine percent predicted patients' preferences for dialysis if they had terminal cancer. Corresponding figures for physicians were 60%, 68%, and 66%. However, Kappa coefficient analysis indicated that neither family members nor physicians more accurately predicted their patients' wishes about life-sustaining treatments than expected by chance alone. (All kappa coefficients <0.4.) Patients with specific EOL preferences should leave better advance directives. |
Only half of patients expected their family members to correctly predict their wishes for CPR or continuation of dialysis therapy. These results suggest that it is impossible to know patient preferences without proper communication. | Japanese culture includes the belief that one's wishes are intuitively known to others; physicians may be paternalistic; and families may see withdrawal of treatment as abandoning their duty to the patient. |
| Nishimura (2007), USA. Objectives: To determine health care preferences expressed by patients in ADs and to identify characteristics of patients who completed them. |
Four hundred seventy-six participants who were inpatients or outpatients of a hospital, with a range of conditions (only 32 with renal insufficiency), who submitted an AD. | Design: A computer-generated random sample (of >25,000 patients) was selected. Data were extracted from the hospital's electronic patient information system on AD characteristics (e.g. type of AD and number of pages), and contents (e.g., designation of health care agent, decision-making powers given to the agent, and specific health care requests) were recorded. Rigor: Strong (large random sample and ADs assessed by at least two reviewers). |
Median age of patients when they submitted an AD was 67 yrs. Of the 476 patients, 434 had a designated health care agent, and 340 had granted the agent powers to consent for procedures, to access information and to withhold and withdraw life-sustaining treatments. Three hundred thirty-nine had submitted a combined AD (incorporating a living will and a power of attorney). Most patients expressed a desire for pain control (308). For the clinical situations of dying or permanent unconsciousness, most patients (371) expressed the preference to avoid general life-support but did not explicitly address common life-sustaining treatments including CPR, HD, mechanical ventilation, artificial nutrition and hydration, blood transfusion. |
Knowledge of what types of information patients include (and do not include) would highlight the EOL concerns that are important to patients and possibly point out inadequacies in the current use of ADs. The most effective AD should allow a patient to name a health care agent, to state their preferences, is detailed yet easy to use, and is disease specific. |
A combined AD seemed more convenient for the patients; long ADs could discourage patients; a variety of form types should be offered as some prefer writing more detailed comments and others not. |
| Sanchez-Tomero (2011), Spain. Objectives: To examine patient familiarity with an advance directive document (ADD) and the proportion with an ADD or a legal representative; acceptance of AD in dialysis units, and patients' opinions regarding the ADD and their attitudes to EOL care. |
Hundred and fifty-four dialysis patients in seven hospital or peripheral dialysis units. | Patients received information explaining AD and completed a questionnaire designed to discover their opinions of the ADD. Rigor: Moderate (unclear if questionnaires were validated; however, large sample size, number of sites, and appropriate statistical analyses). |
Questionnaires were distributed to 265 patients and 154 (58.11%) responded. Only 7.9% of patients had an ADD, and 6.6% had formally appointed a representative, but 60.9% had empowered another person to represent them and their wishes, should they lose capacity. Over 65% did not want mechanical ventilation, tube feeding, continued dialysis, or resuscitation if they had cardiac arrest. Most patients were clear as to their wishes for future care, but stating these in a written document was rare. Fifty-four percent said they would like to create an ADD, whereas 43.7% said they would not; 51.6% said that an ADD should be created before dialysis treatment begins, whereas 65% said that this option should only be given to people if they ask for it. |
The patients in this study had clear wishes regarding their EOL care, despite the lack of AD documentation. However, the authors commented on the importance of having these wishes written in an official ADD, which leads to a greater likelihood that they are respected. | In Spain, familiarity with ADDs is very limited, and patients may be suspicious that making an ADD will lead to doctors withholding necessary treatments. Hospital protocols would help facilitate ADDs. |
| Schmidt (2015), USA. Objectives: To review the effect of advance care planning on withdrawal from dialysis, use of hospice, and location of death. |
Sixty-five former dialysis patients who died over five years, who attended a rural outpatient dialysis unit. | Retrospective review of dialysis and medical records. Rigor: Weak (small sample, single center, little detail on data collection methods). |
Sixty-five deaths occurred during the five-year review period. Of these, 46 (71%) occurred out of hospital, and 33 (51%) followed withdrawal from dialysis. Advance care planning was associated with a low incidence of death in hospital and, among those who withdrew from dialysis, high use of hospice. |
Patients were routinely asked if they had an AD and completed a “scope of treatment” form. Physicians discussed withdrawal of dialysis with those considered likely to die within six months. | Hospice care was actively recommended by physicians. A reluctance of many rural patients to travel the necessary distance for tertiary care clearly contributes to the low prevalence of in-hospital death, and all patients who died in hospital did so after an acute event prompted hospitalization. |
| Song (2013), USA. Objectives: To describe how chronically seriously ill patients can be assisted to identify a surrogate who would act as their decision-maker if their condition suddenly deteriorates and whether these surrogates were the same as their documented emergency contacts. | Ninety-four African American or Caucasian patients attending outpatient dialysis centers in North Carolina for at least six months. | A descriptive cross-sectional study using eligibility assessment and baseline data from an ongoing efficacy trial of an EOL communication intervention. Rigor: Moderate (small convenience sample). |
Three of the 94 patients already had a surrogate documented in an AD. The remaining 91 came to that decision after working through guiding questions with the recruiter. Thirty-two patients (34%) named a spouse, 29 (30.9%) named a child, 17 (18.1%) named a sibling, five (5.3%) named a parent, three (3.2%) named a friend, and eight (8.5%) named another person. Of the 94 surrogates, 60 (63.8%) were listed as emergency contact; 34 (36.2%) were not. No differences in sociodemographic characteristics between those who appointed a different person for their surrogate versus those who appointed the emergency contact as a surrogate. |
Without a named surrogate decision-maker, people acting as emergency contacts may find themselves becoming the decision-maker, despite neither the patient nor the emergency contact agreeing to this. | Some states demand notarization for an advance directive, and this may cause a reliance on emergency contacts for decision-making. |
| Yee (2011), Singapore. Objectives: To explore the knowledge, attitudes, and experience of renal health care professionals in Singapore with ACP for patients with ESRD. |
Five hundred sixty-two renal physicians, renal nurses, renal medical social workers (MSWs), and other allied health professionals working in government hospitals, private sector, and voluntary groups offering subsidized dialysis. | Cross-sectional survey: 41-item questionnaire with four sections: demographics of respondents, knowledge of, attitudes to, and experience of ACP. Survey “distributed” to health care professionals working in renal units. Authors do not state how this was done, for example, by post or other means. Rigor: Strong (good sample size, high response rate, statistics were appropriate and well explained). |
Six hundred twenty surveys distributed; 562 returned (90.6% response rate). Hundred percent of MSWs considered ACP discussions part of their role, compared with 82.4% of doctors, 37.1% of nurses, and 38.1% of other health professionals. MSWs and doctors had higher knowledge scores than the other groups. Nurses were least confident in discussing ACP and most afraid of distressing patients and families, whereas MSWs were most confident. For doctors, the main barriers to discussing ACP were shortage of time, concerns about family reaction, and their belief that patients were not ready to discuss ACP. | Physicians fear upsetting family, report lack of time, and perceive that Singaporeans may not be ready for ACP. In Asian societies, the family plays an important role in health-related decision and may sometimes conflict with patient's preferences. ACP can be confused with AD (and AD with euthanasia) by professionals and patients. Nurses have most contact time with patients but most see ACP as part of the physician or MSW role. | |
| Qualitative studies | |||||
| Bristowe (2014), UK Objectives: To develop and pilot a REnal-specific Advanced Communication Training (REACT) program to address the needs of ESKD patients and renal professionals. |
Patients with ESKD and professionals from two large renal units in London teaching hospitals. | Two-part study: 1) development of REACT by one multiprofessional focus group and patient experience survey (n = 171) and 2) piloting of the program with nine nurses/health care assistants and seven renal consultants. Rigor: Weak (generic satisfaction survey; small sample for evaluation of training). |
Patient survey: 71% felt confident to ask questions; 65% felt treatment options had been clearly explained; but only 50% felt that their concerns were taken seriously; 48% felt that they had been sufficiently involved in treatment decisions. Focus group identified need for better information about EOL and patient/carer perspective; skills and practice for difficult discussions; opportunity to debrief. REACT was found acceptable, but no significant increase in staff confidence. |
Inadequacies in EOL care for renal patients must be addressed, but renal professionals need tailored training and support to optimize their skills and address concerns in managing ACP discussions. | Challenges remain in prioritizing communication training in busy renal units and identifying funding to provide high-quality training with adequate follow-up. |
| Bristowe (2015), UK Objectives: To investigate experience of patients starting HD, impact on quality of life, and preferences for future and EOL care to inform understanding and timing of ACP. |
Patients with ESKD from two NHS hospitals. | Qualitative study; semistructured interviews with 20 patients, from two NHS hospitals, purposively sampled for age, time on dialysis, and symptom burden. Thematic analysis. Rigor: Strong (careful data collection, analysis, and findings well described). |
Themes: Looking back, emotions of commencing hemodialysis; current experiences, illness, and treatment burdens; and looking Ahead, facing the realities. Challenges: Getting information, communicating with staff and “conveyor belt” culture of hemodialysis units, lack of opportunity to discuss their future if health deteriorated, and variable involvement in treatment decisions. Discussion of issues was more acceptable to some than others. |
Given a changing population, there is a need for a culture shift from a “disease-focused” model toward a “holistic care-based” approach, normalizing discussions about preferences, priorities, and future care. | “Conveyor belt” culture, with prioritization of “getting you on and off” rather than caring for the individual. This experience was compounded for those reliant on hospital transport, for which there was often a lengthy wait, with difficult recovery the next day. Staff avoid discussion of future due to fear of causing distress. |
| Calvin (2004); USA Objectives: To explore what happens as hemodialysis patients make decisions about EOL treatment and to develop a substantive theory to explain this phenomenon. |
Hemodialysis patients attending three outpatient centers in central Texas. | Grounded theory; semistructured interviews with 20 participants. Rigor: Moderate (insufficient data presented to support the findings). |
Patients chose to focus on living rather than dying. A substantive theory of “personal preservation” was developed. This consists of three phases: knowing the odds for survival, defining individuality (beating the odds, discovering meaning, being optimistic, and having faith in a higher force), and personal preservation (being responsible and taking chances). | When health care providers do not know what hemodialysis patients prefer with regard to life-sustaining treatment, they feel obligated to do everything possible to preserve patients' lives. | Patients protected themselves by trusting their family members with EOL decisions and distancing themselves from death. Some patients saw advance directives as, primarily, for others' legal protection, as opposed to their own autonomy. |
| Calvin (2014), USA Objectives: To explore hemodialysis patients' family members' understanding of EOL decision-making processes. Aimed to address 1) family members' constructions of ACP and 2) family members' perceptions of health care providers' roles and responsibilities in ACP. |
Family members of persons attending hemodialysis outpatient facilities in Houston. | A qualitative descriptive design, with a Glaserian approach to the analysis. Eighteen family members were recruited primarily from outpatient dialysis facilities and interviewed individually. Rigor: Strong (design and recruitment appropriate; analysis and findings clear). |
Family members feel a call to duty to protect patients by 1) sharing burdens, 2) normalizing life, and 3) personalizing care. Participants and patients live with burdensome uncertainties. Participants spoke of health care providers' general lack of care and struggled to articulate health care providers' responsibilities in ACP because they had not experienced ACP. Participants avoided thoughts of death and normalized life to protect patients. Personalizing care involved being present during encounters with health care providers and respecting wishes. |
To honor patients' values and medical treatment preferences, health care providers need to communicate with family members because of the patient's loss of decision-making capacity. | Lack of trust in health care providers. Patients, their families, and health care professionals are reluctant to discuss EOL treatment preferences or formulate advance directives. |
| Davison & Simpson (2006), Canada Objective: To understand hope in the context of ACP from the perspective of patients with ESRD. |
Patients with ESRD selected from the renal insufficiency, hemodialysis, and peritoneal dialysis clinics at a Canadian university–affiliated renal program. | Twenty-three individual interviews with 19 patients (14 expected to require dialysis within the next 12 months). Rigor: Strong (design and recruitment strategy appropriate, data analysis, and findings clear). |
Participants' hopes were shaped by personal values. They perceived ACP as a means of enhancing hope by providing information early in the illness that focuses on the impact on daily life, empowering patients, and enhancing relationships with staff and loved ones. These were key factors in sustaining patients' ability to hope and helped them to imagine possibilities for a future that were consistent with their values and hopes. | Comprehensive care of patients with ESKD requires skill in ACP to lay out a set of values and processes for approaching EOL decisions and identify preferences for future goals of care. | Participants were willing to discuss EOL but expected professionals to initiate and guide them through the process of ACP. They did not feel they should have to ask for prognostic information. Reliance on health professionals to initiate EOL discussions and the daily focus of clinical care were perceived to be potential barriers to hope. |
| Davison (2006b), Canada Objectives: To obtain views of patients with ESRD on the salient elements of ACP discussions and to discover their preferences regarding how ACP could be facilitated by the health care team. |
Patients with ESRD from renal insufficiency, hemodialysis, and peritoneal dialysis clinics; Northern Alberta Renal Program at the University of Alberta. | Ethnographic study consisting of personal interviews with 24 patients. Participants purposively selected on their willingness to discuss issues and were stratified by age, gender, and dialysis modality. Rigor: Strong (research design and recruitment strategy appropriate; findings and analysis clear). |
Patients' views on benefit of ACP varied significantly and reflected beliefs, fears, and wishes for EOL care. Patients wished for more information earlier in their illness, and information giving was viewed as a critical element of the ACP process. Patients also required information about the impact of interventions on daily life. Patients requested that health care professionals should initiate ACP, use lay language and be empathetic, and affirm self-worth in patients. |
Argument for shifting the focus away from the traditional information giving and document completion model of advance directives and replacing it with a relational, patient-centered process that focuses on broader goals of care. | Tension between patient priorities for ACP (focused on how care plans affect them and their loved ones in daily life) rather than that of clinical practitioners (statistical effectiveness of treatments). Physicians clearly seen by patients as having responsibility for initiating and guiding ACP. No standards of care regarding when to initiate or how to conduct ACP discussions. |
| Goff (2015), USA Objectives: To inform the development of an intervention focused on improving ACP. To elicit recommendations for how dialysis teams should discuss ACP. |
Patients and family members attending two dialysis units in Massachusetts and New Mexico. | Applied grounded theory approach. In-depth interviews with 13 patients and nine family/friends; interviews were audio-taped, professionally transcribed, and analyzed in an iterative process. Rigor: Strong (research design and recruitment strategy appropriate. Data analysis and findings clear) |
Most patients and family/friends felt options available for EOL care should be discussed through ACP, but few patients or family/friends reported discussing prognosis, life goals, or options for care with health care professionals. Several patients and family/friends had discussed ACP with the primary care physician, but this was not shared with the nephrologist. |
Patients' life experiences influenced their dialysis experiences and their views of ACP, for example, the suffering they observed in the dialysis unit affected their views. Patients less critical of their dialysis experience had higher education/income levels or were older. |
Negative dialysis experiences, including lack of a personal connection to the nephrologist and dialysis team, dissatisfaction with communication, and disenfranchisement may diminish trust in the dialysis team. Patients and family/friends with lower socioeconomic and/or minority status felt disempowered and discouraged from ACP. Some staff minimized the seriousness of dialysis, and staff could do more to reduce feelings of humiliation and dependency that patients experience as dialysis patients. |
| Hines (2001), USA Objectives: To determine whether differences in values and preferences for the ACP process may be reasons family members are inadequately informed to act as surrogates. |
Hemodialysis patients from two regions—New York and West Virginia, USA. | Face-to-face and telephone surveys using structured questionnaires. Participants: 242 dialysis patients and their designated surrogates Rigor: Moderate (rationale for how interview questions were decided upon not clear). |
Ninety percent of patients designated a family member as their surrogate. Generally, conversations about EOL issues did not increase surrogate knowledge of patients' values or preferences. Surrogates wanted written and oral instructions more often than patients wanted to provide them. Compared with patients, surrogates were less likely to want to prolong the patient's life if it entailed suffering and were more concerned about being certain before stopping life-sustaining treatments. |
Despite reliance on family member surrogates to make EOL decisions, surrogates often lack knowledge of the patient's values and preferences. Patients may overestimate the degree of autonomy their surrogates want to exercise. | Physicians may assume that patients who report having talked with their family will have adequately prepared them for surrogate decision-making. |
Abbreviations: RCT = randomized controlled trial; ACP = advance care planning; ESKD = end-stage kidney disease; CKD = chronic kidney disease; EOL = end of life; ESRD = end-stage renal disease; PC-ACP = patient-centered advance care planning; CHF = congestive heart failure; AD = advance directive; EMR = electronic medical record; HD = hemodialysis; CPR = cardiopulmonary resuscitation.