571020 research-article2015
PMJ0010.1177/0269216315571020Palliative MedicineBoss et al.
Original Article
Novel legislation for pediatric advance directives: Surveys and focus groups capture parent and clinician perspectives
Palliative Medicine 2015, Vol. 29(4) 346–353 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315571020 pmj.sagepub.com
Renee D Boss1,2, Nancy Hutton1, Pamela L Griffin1, Beth H Wieczorek1 and Pamela K Donohue1,3
Abstract Background: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment. Aim: To explore pediatric clinicians’ experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for LifeSustaining Treatment. Design: Clinician surveys and clinician and parent focus groups. Setting/participants: Pediatric clinicians and parents from one of Maryland’s largest health systems. Results: Of 96 survey respondents, 72% were physicians and 28% were nurse practitioners. A total of 73% of physicians and 34% of nurse practitioners felt able to lead discussions about limiting therapies “most” or “all” of the time. A total of 75% of physicians and 37% of nurse practitioners led such a discussion in the prior year. A total of 55% of physicians and 96% of nurse practitioners had written no order to limit therapies in the past year. Only for children predicted to die within 30 days did >80% of clinicians agree that limitation discussions were warranted. A total of 100% of parent focus group participants, but 17% of physicians and 33% of nurse practitioners, thought that all pediatric inpatients warranted Medical Orders for Life-Sustaining Treatment discussions. Parents felt that universal Medical Orders for Life-Sustaining Treatment would decrease the stigma of limitation discussions. Participants believed that Medical Orders for Life-Sustaining Treatment would clarify decision making and increase utilization of palliative care. Medical Orders for Life-Sustaining Treatment communication skills training was recommended by all. Conclusion: A minority of clinicians, but all parents, support universal pediatric Medical Orders for Life-Sustaining Treatment. Immediately prior to the Medical Orders for Life-Sustaining Treatment mandate, many clinicians felt unprepared to lead limitation discussions, and few had written relevant orders in the prior year. Communication training is perceived essential to successful Medical Orders for Life-Sustaining Treatment conversations.
Keywords Advance directives, physician–patient communication, pediatric palliative care
What is already known about the topic? •• Durable orders for life-sustaining treatments are increasingly mandated for adult patients. •• Maryland is the first state to include pediatric inpatients in legislation regarding end-of-life care. •• The expectations that pediatric clinicians and parents have for such statewide legislation are unknown.
1Division
of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA 2Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA 3Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
Corresponding author: Renee D Boss, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, 1809 Ashland Avenue, Suite 212, Baltimore, MD 21205, USA. Email: [email protected]
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Boss et al. What this paper adds?
•• Parents endorse universal application of Medical Orders for Life-Sustaining Treatment for pediatric inpatients, and only a minority of clinicians agree. •• Clinicians are unsure which patients need Medical Orders for Life-Sustaining Treatment and feel ill-prepared to have Medical Orders for Life-Sustaining Treatment conversations. •• Parents and clinicians agree that advance care planning communication training is needed for pediatric clinicians. Implications for practice, theory, or policy? •• Many other states are in the process of devising policies for durable orders for life-sustaining treatments for pediatric patients. •• Parents should be an integral part of this policy development.
Introduction In many countries, advance care planning for life-threatening illness is evolving from individual discussions initiated at the discretion of clinicians and patients to mandated discussions for patient groups as stipulated by hospitals, insurances, or, increasingly, legislatures. In the United States, many individual states have adopted portable medical orders, often known as Medical Orders for Life-Sustaining Treatment (MOLST), which aim to standardize advance care planning for adults.1 While specifics vary across states, broad MOLST goals include facilitating discussions about end-of-life treatment options, so that patient preferences are incorporated into durable medical orders which are valid across health-care settings. Data from adult patients indicate that MOLST increases conversations about treatment preferences, facilitates understanding of patients’ wishes, and results in fewer unwanted resuscitations in emergency situations.2–4 While pediatric advance care planning programs are increasingly common in the United States, Maryland is the first state to mandate MOLST consideration for hospitalized children. When the legislation passed in 2011, it required all pediatric inpatients to have an MOLST.5 Prior to mandated statewide compliance on 1 July 2013, MOLST was amended to exempt any patient “younger than 18 years old and who is unlikely to require a life-sustaining treatment.”6 No definition of “unlikely to require” or “life-sustaining treatment” (LST) is specified, leaving room for interpretation. Licensed physicians and nurse practitioners are authorized to write MOLST. We know of no published data regarding MOLST for pediatric patients. We designed this study to examine existing practices of pediatric advance care planning just prior to MOLST implementation in Maryland and to assess clinician’s and family’s expectations of how MOLST would impact communication, documentation, and workflow.
Participants and methods This study was conducted in April–June 2013. All pediatric clinicians from one of Maryland’s largest academic medical
centers were recruited through email. The medical center includes the state’s largest level IIIB neonatal intensive care unit (ICU) and pediatric ICU, a pediatric trauma center, multiple pediatric subspecialties including oncology and cardiothoracic surgery, and a pediatric rehabilitation center. The survey was sent to all pediatric physicians and nurse practitioners caring for hospitalized children. Survey items targeted clinicians’ experiences with limiting LST, comfort with communicating about treatment limitations, and perceptions of which patients warrant MOLST. Participants were asked to distinguish which interventions listed on the Maryland MOLST form they felt were life sustaining. Survey participants were invited to volunteer for a focus group. Clinician focus groups explored understanding of MOLST requirements, recommendations for timing of MOLST conversations, strategies for discussing MOLST, and predicted impact of MOLST on patients and staff. Members of the medical center’s Pediatric Family Advisory Council (PFAC) were recruited for parent focus groups targeted at the same topics. PFAC parents are volunteers who advise the medical center on procedures and policies relevant to patient- and family-centered care; their children receive health care at the medical center. Focus groups were conducted by three trained investigators (R.D.B., P.K.D., and P.L.G.) using an interview guide with prompts. The guide was pilot tested with physicians and parents. Researchers are members of the faculty (R.D.B. and P.K.D.) and of the PFAC (P.L.G. and P.K.D.). Sixtyminute focus groups were held in a private location at the medical center and were audio recorded and transcribed. One researcher kept field notes. Survey data were analyzed with descriptive statistics. Focus group transcripts and field notes were reviewed independently by two investigators (R.D.B. and P.K.D.) who then met to discuss the full breadth of responses and to identify shared elements for each question. Confirmation of extracted elements was performed by a third investigator (P.L.G.). The study was approved by the institutional review board (NA_00081988), and informed consent was obtained.
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Results
Table 1. Clinician perceptions of life-sustaining treatments as indicated by MOLST form.
Clinician surveys Of the 255 eligible clinicians, 102 responded to the survey; complete data were available for 96 participants, 69 physicians (72%), and 27 nurse practitioners (28%). A total of 75% (52/69) of physicians versus 37% (10/27) of nurse practitioners felt able to lead family discussions about potentially limiting LST in “most” or “any” situation. A total of 6% (4/69) of physicians and 11% (3/27) of nurse practitioners felt “never” or “rarely” able to lead such a discussion. A total of 54% (37/69) of physicians and 33% (9/27) of nurse practitioners reported having talked with more than one family about limiting LST in the prior year. A total of 19% (13/69) of physicians and 48% (13/27) of nurse practitioners reported having no such discussions during that time. Only 45% (31/69) of physicians and 1 nurse practitioner had written at least 1 order to limit LST in the past year. Of the 17 physicians who reported feeling “sometimes,” “rarely,” or “never” able to lead a family discussion about potentially limiting LST, only two had written any order to limit therapies in the past year. Alternatively, of the 52 physicians who reported feeling able to lead a family discussion about potentially limiting LST in “most” or “any situation,” over half (56%) had written an order to limit therapies in the past year. The one nurse practitioner who had ever written an order to limit therapies felt able to lead family discussions in “most” situations. The Maryland MOLST form indicates multiple specific therapies or interventions which must be addressed in the medical order for LST. Table 1 summarizes clinician perceptions of how often these therapies or interventions are “life sustaining” for children. Almost all respondents agreed that two of the interventions (cardiopulmonary resuscitation (CPR) and mechanical ventilation) met the definition of LST. Clinicians were asked to indicate which conditions should prompt discussions with families about potential treatment limitations (Table 2). Only for children likely to die in the next week or month did >80% of physicians and nurse practitioners agree that discussions were warranted with families about limiting LST. A total of 17% of physicians and 33% of nurse practitioners indicated that discussions should be had with families of all pediatric inpatients. Table 3 summarizes clinician’s expectations of how MOLST would impact the delivery of pediatric health care in general and their own practice.
Focus groups Clinicians. Two months prior to MOLST rollout, two-clinician focus groups were held and included both physicians and nurse practitioners. All clinicians had at least 10 years
MOLST order form treatment
Considers as life-sustaining treatment for a hospitalized child
Physician (N = 69), n (%)
Nurse practitioner (N = 27), n (%)
Cardiopulmonary resuscitation Intubation or mechanical ventilation CPAP or BiPAP Feeding tube Central line IV fluids IV nutrition IV antibiotics Oral antibiotics Blood transfusion Dialysis Hospital transfer Medical workupa
69 (97)
27 (100)
69 (97)
27 (100)
44 (64) 41 (59) 33 (48) 36 (52) 41 (59) 35 (51) 17 (25) 44 (64) 54 (78) 13 (19) 13 (19)
14 (52) 17 (63) 18 (67) 17 (63) 19 (70) 12 (44) 8 (30) 18 (67) 23 (85) 8 (30) 5 (19)
MOLST: Medical Orders for Life-Sustaining Treatment; CPAP: continuous positive airway pressure; BiPAP: bilevel positive airway pressure; IV: intravenous. No difference between groups. aDefined on MOLST order form as “… any medical tests needed to diagnose and/or treat a medical condition.”
experience working with pediatric inpatients. Clinicians represented specialties very relevant to advance care planning, including general pediatrics, pediatric intensive care, pediatric oncology, and genetics. Clinicians articulated the tensions inherent in the transition from LST discussions initiated at the discretion of individuals to those prompted by a state mandate. They worried that statewide notification about the legislation would not reach most families, and that clinicians would bear the burden of explaining MOLST: Are parents going to know this? How are we transitioning our parents, because they’re going to freak out. I’d freak out if you approached me with [MOLST]. I’d be like, “Excuse me? Is there something you know that I don’t know?” (Neonatal Nurse Practitioner)
Clinicians did agree that routinizing such discussions could de-stigmatize them for both families and clinicians and may avert the appearance that a clinician had “lost hope” for a child’s recovery. They noted particular benefit for children with chronic conditions (e.g. cystic fibrosis) for whom there is uncertainty about optimal timing of discussions about LST: It is something I have thought a lot about because it is a struggle, I think, to do this well. For instance patients with sickle cell … what is challenging is that some of these
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Boss et al. patients live until they’re 60, and some could have a stroke tomorrow … Also children with special health care needs, I’m thinking about the children with intellectual disabilities who could live a really long time or could aspirate and die tonight. (Geneticist) Table 2. Clinician perceptions of pediatric conditions warranting discussions of treatment limitations. Pediatric condition
Should prompt discussion of treatment limitation
Physician (N = 69)
Patients in pediatric intensive care unit, n (%) Most or all 13 (19) 51 (74) Some Patients in neonatal intensive care unit Most or all 13 (19) Some 50 (73) Patients who received CPR in Last week 46 (67) Past month 37 (54) Past 6 months 34 (49) Patients with tracheostomies Most or all 14 (20) Some 28 (41) Patients likely to die in Next month 61 (88) Next 6 months 51 (74) Next year 48 (70) I do not know which pediatric 4 (6) patients should be considered I do not think any pediatric 0 patient should be considered I think all hospitalized pediatric 12 (17) patients should be considered
Nurse practitioner (N = 27) 7 (26) 15 (56) 6 (22) 20 (74) 20 (74) 14 (52) 12 (44) 7 (26) 9 (33) 24 (89) 21 (78) 14 (52) 0
I think, if you do it when it is almost irrelevant, you take away that tendency of the parents to think “They’ve lost hope in me, they’ve given up.” (Oncology Nurse Practitioner)
Clinicians believed that MOLST might help families who have chosen to limit treatments for a child, as the durable medical order would not have to be started anew with each new clinician: … I think it is really important for the order to be entered into the computerized medical record … Families who have come to this decision of limiting care, talk a lot about having to rehash it over and over. So its that balance of revisiting it, but if a family says my wishes are the same, then don’t … go into great detail. (Hospitalist)
Clinicians did worry that introducing MOLST for children with minor illnesses (e.g. a 3-day-old infant admitted for phototherapy, who would have qualified for an MOLST under the initial Maryland regulation) might harm families and the parent–clinician relationship. In general, for children unlikely to require LST during the current hospitalization, clinicians preferred delaying MOLST discussions to later in the hospital stay or just before discharge. They worried that regulating timing of MOLST discussions (e.g. upon hospital admission) would place many discussions outside of trusted patient–clinician relationships: Sometimes we have a really special relationship with a family, we know them well. And while those are still difficult, I think those are easier dialogues to have, because whatever their reaction they will kind of understand. They know you. Then some of us have very new relationships with families, we have never met them before. That is difficult. (Oncologist)
0 9 (33)
CPR: cardiopulmonary resuscitation. No differences between groups.
Clinicians had multiple misunderstandings about MOLST specifics, including legal signatories, specified treatments, paper versus electronic format, and effective date. They worried that the MOLST document seemed directed at adult patients and was confusing and sometimes
Table 3. Clinician perceptions of how MOLST will impact pediatric medical care. I think a state law requiring me to consider discussing with all families their wishes regarding life-sustaining therapies for their child will (check all that apply) …
Physician (N = 69)
Nurse practitioner (N = 27)
P value
Clarify medical decision making for very sick children Increase the likelihood that children who could benefit from limitations of therapies will have clear goals of care Increase the utilization of pediatric palliative care Harm families by forcing difficult discussions Improve clinician’s skills in having these discussions Cause me moral distress Be a burden on the workforce Not change my practice
39 (57) 40 (58)
21 (78) 22 (82)
0.063 0.035
35 (51) 10 (15) 29 (42) 2 (3) 31 (45) 21 (30)
23 (85) 2 (7) 18 (66) 3 (11) 3 (11) 6 (22)
0.002 0.50 0.041 0.133 0.002 0.462
MOLST: Medical Orders for Life-Sustaining Treatment.
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irrelevant for pediatric patients. They further wondered if the legislative ambiguities related to pediatric patients would result in no change in clinician behavior. Clinicians recognized that successful MOLST conversations would depend on their communication skills. Several described LST discussions as “an art form” where word choice and language are critical. Both physicians and nurse practitioners worried that they lacked the skills to discuss MOLST with families in a way that would enhance goals of care and trust: My fear would be that the reactions … of some families to get furious when you approach this. And I suppose a lot of that is dependent upon the skill of the proposer, which I am sure I will lack. (Nurse Practitioner)
Clinicians desired ongoing research about the effects of pediatric MOLST to guide best practices: … wish that we had more guidance. The adults have done more studies on this than we have in pediatrics, and I struggle a lot with when is the right time … (Hospitalist)
Parents. Two months before MOLST rollout, one-parent focus group with 10 participants was held. Parents unanimously agreed that universal MOLST requirements would decrease parent stress and minimize clinician bias. Parents felt that statewide media about MOLST, hospital admission documents including a MOLST description, and clinician emphasis that MOLST is a state mandate would make the conversation easier for families to accept. Unlike clinicians, parents supported MOLST for all pediatric inpatients, even those with minor illnesses: I just, I guess, wanted to really emphasize … that this should be given to EVERYONE. (Parent 1) If it is a legal document, there should be more news out there. Just like, when HIPAA came finally, people were talking about it in the news. Then you’re like, “Okay, I did hear about something like that at the hospital.” Then it doesn’t become so scary. (Parent 3)
In contrast to clinicians, parents felt that the best time for MOLST discussions would be at hospital admission, with routine follow-up after 24 h. Parents cautioned against initiating MOLST discussions at hospital discharge, as parents might feel that clinicians had been withholding prognostic information throughout the hospitalization. Parents felt that MOLST discussions should emphasize that revisions could be made any time by parent request: I think part of that [discussion] has to be that it’s a changeable document. I think if you make it factual, that it’s a statemandated, legal document … and that you can change it at any time, that would probably be okay for me. (Parent 5)
Parents felt that discussions should reflect a family’s education level. They identified several scenarios requiring additional communication skills, including parent– parent disagreement, and child–parent disagreement about MOLST. They saw MOLST as important for patient- and family-centered care and would empower parents to feel central to their child’s care: The other thing with the document is, as scary as it is, I think that, in a lot of ways, it’s going to empower families to … to feel like they are part of care. (Parent 2)
Continuity of care across hospital and other settings (e.g. school and home health care) was seen as another important advantage, although parents worried who would be responsible for distributing a child’s MOLST to all relevant providers. Parents did have concerns about how clinicians would approach MOLST discussions and agreed that these discussions require empathy and active listening. Faceto-face conversations without electronic interruptions were deemed essential. Parents recommended required communication training to help clinicians guide MOLST discussions: And I know that we’re going in the era of electronic medical records, but this is not the time for that person to be on any electronics. (Parent 1) This is a time for that person to be looking at me … and having a face-to-face conversation. (Parent 10) I think it would be important for doctors to role play this. I know maybe they’re not into role playing, but, they can’t go in cold to a room and not have practiced. (Parent 9)
Parents recognized that some families might be reluctant to consider MOLST but felt that there was a greater good in “forcing them to have a conversation they are avoiding.” In situations where a family might actively or passively avoid MOLST discussion, parents recommend that clinicians be clear that full resuscitation is the default management: It’s for the care of your child, so that decisions can be made in advance instead of in an emergent time. (Parent 5) It’s a conversation that needs to be had. Whether you’re talking about children, or … aging parents. (Parent 4)
Discussion Data suggest that many adult patients experience unwanted LST at the end of life, often in an ICU, and that many prefer a less medicalized death surrounded by people and things meaningful to them.7–9 Gaps between what patients want and what they experience have fueled efforts to
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Boss et al. promote earlier communication about preferences for LST.10 Although multiple studies document the barriers to promoting this communication and to honoring documented LST preferences,11–14 novel efforts to facilitate this planning continue.15–17 Applying these efforts to pediatric advance care planning is challenged by the developmental variability of children and by varying cultural norms for parents as surrogate medical decision makers. Pediatric advance care planning programs exist only in the United States and Australia, according to a recent systematic review.18 In the United States, Maryland is the first state to extend advance care mandates to pediatric patients. We found that in the year prior to MOLST, only about half of physician participants had led more than one discussion with families about limiting LST for a child. Fewer than half had written a treatment limitation order. A minority of nurse practitioners felt prepared to have these discussions, and nearly none had written relevant orders in the prior year. Notably, few physicians and nurse practitioners, but all parents, felt that all pediatric inpatients warrant an MOLST. Clinicians believed that MOLST discussions were most relevant for children in a neonatal or pediatric ICU or who received CPR in the last week or who were likely to die in the next 6 months. Clinicians thought that MOLST would enhance decision making for children who might benefit from treatment limitation and would increase utilization of palliative care. Clinician survey respondents felt that MOLST conversations would not harm families or cause clinicians moral distress, although focus group participants repeatedly raised concerns about damage to clinician–parent trust. Parents and clinicians agreed that clinician training for MOLST discussions should occur. Globally, only 15% of the 234 countries recognized by the United Nations have policy related to palliative care.19 Five European countries (Belgium, England, France, Netherlands, and Poland) have laws or regulations supporting advance directives, but these vary substantially and do not clearly include children.20 While there are advocates for global advance directive policies, the concept of patient autonomy—the underpinning of advance care planning—is not culturally universal and inherently modifies patient involvement in serious medical decisions.21,22 It is clear that geopolitics and legal renderings can directly or indirectly influence end-of-life care, whether by making advance directives nonpracticable23 or, in the case of the United States, by progressively making them essential. In this study of the first US state to legislate pediatric advance care planning, parents were much more likely than clinicians to think that all pediatric patients warrant MOLST. Challenging the notion that universal pediatric consideration would upset families, parents felt that a standardized approach would de-stigmatize the process. Pediatric advance care planning documents have been
shown to be well accepted by the US families in several settings.24–26 Wharton et al.27 found that 75% of parents of children with special health care needs support written guidelines for critical situations. Dellon et al.28 demonstrated that families of patients with cystic fibrosis agree that advance care discussions should occur prior to a medical crisis. Not surprisingly, parents and clinicians in our study recommend that MOLST conversations occur, whenever possible, in the context of a trusting relationship. Yet, expanding MOLST to more patients will inevitably result in conversations occurring outside of an established clinician–family relationship. Clinicians also worried that the language of the MOLST form, which is not tailored to pediatric patients, may be an additional barrier to quality communication. In the United States, approximately half of pediatric deaths occur among newborns and infants,29 with the majority occurring in hospitals.30 Of children aged 1–18 dying from nonaccidental causes, approximately 80% die in hospitals;30 these deaths often occur much farther from home than for adult patients.31 Large studies exploring why children are more likely than adults to die in hospitals, particularly in ICUs while receiving multiple LSTs, have not been done.32 The reasons likely reflect a combination of medical and psychosocial issues. One important factor may be lack of early communication and planning. Death during infancy or childhood is distressing for families and clinicians alike, which may delay discussions of LST. Pediatric clinicians care for dying patients less commonly than adult clinicians and often have less training and experience guiding families in LST discussions. While most neonatal and infant death occurs in the hospital, nearly half of graduating perinatal–neonatal fellows report receiving minimal training focused on end-of-life communication.33 Clinicians cite uncertainty of prognosis and lack of training as primary barriers to communication about advance care planning with families.34 Yet, Dussel et al.35 found that “comprehensive physician communication and home care involvement” were predictive of a child dying at home as desired by the family. A recent review of pediatric advance care planning programs suggests that more children die at home at the family’s request when planning and supports are available.18 We found that about half of physicians and most nurse practitioners thought that MOLST would clarify decision making and treatment goals. Similarly, clinicians thought that MOLST would increase utilization of palliative care, suggesting that clinicians believe that pediatric palliative care is currently underutilized. Parents and clinicians in this study agreed that targeted communication training for clinicians should occur as part of the MOLST process. Indeed, enhanced communication is an essential goal of MOLST legislation in the United States. Only about half of physicians, and very few nurse practitioners, felt able to lead relevant discussions in most situations. Of note, most clinicians who felt uncomfortable
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leading such discussions had written no order to limit LST in the past year. Of particular concern is that Maryland law authorizes nurse practitioners to sign MOLST, but in this study, only one nurse practitioner had ever written an order to limit LST and just over one-third felt prepared to lead relevant discussions. Communication trainings focused on leading difficult discussions regarding critically ill patients have been shown to increase confidence and skills of pediatric physicians and nurse practitioners.36 California, via the Children’s Hospice and Palliative Care Coalition, has created a communication skills training specific to the MOLST document.37 Since MOLST is an unfunded mandate, it is unclear what resources will promote communication training. Physicians worried about the impact of MOLST on workflow, which may underlie reluctance to support MOLST for all hospitalized children. Clinicians felt that MOLST was most appropriate for critically ill children or those likely to die within 6 months. These judgments about pediatric MOLST eligibility fall within the amended Maryland mandate which now exempts MOLST for patients “younger than 18 years old and who are unlikely to require a life-sustaining treatment.”6 Given the vagaries of the Maryland regulation, time will tell whether clinicians forego MOLST except in extreme clinical circumstances or will approach parent suggestions for broader patient consideration. Our study has several limitations. Participants came from a single center; practices regarding communication and treatment may vary across health-care systems.38 A total of 40% of eligible clinicians responded to the survey; if nonrespondents were more likely to believe that MOLST was irrelevant to their medical practice, we may have overestimated the clinicians with recent experience discussing and writing orders for LST. While a minority of surveyed clinicians thought that MOLST might harm families, this was a significant concern raised by clinician focus groups. Because survey respondents were invited to volunteer for focus group participation, perhaps volunteers had greater concerns about MOLST. Parent focus group participants were members of the PFAC and may not be representative of all parents at the institution. They may have been more inclined to favor parental participation in decision making. Only 10 parents volunteered for the study from the PFAC. More parent input may have given different results.
Conclusion MOLST now exist, or are in development, in most states across the United States. Maryland is the first to explicitly require pediatric consideration, despite little data about how MOLST affects pediatric advance care planning. We have shown that a minority of clinicians, but all parents, believe that MOLST should be universal for pediatric inpatients. Clinicians and parents agree communication skills underlie the success of MOLST; targeted training may be
warranted. Consideration should be given to developing pediatric-specific MOLST documents. Given variability in clinician perceptions about which children should have a MOLST, the next step is to determine how MOLST alters existing practices around pediatric advance care planning. Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This work was supported by the Thomas Wilson Sanitarium for Children of Baltimore City.
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in adolescent and young adult populations. J Palliat Med 2008; 11: 1309–1313. 26. Hammes BJ, Klevan J, Kempf M, et al. Pediatric advance care planning. J Palliat Med 2005; 8: 766–773. 27. Wharton RH, Levine KR, Buka S, et al. Advance care planning for children with special health care needs: a survey of parental attitudes. Pediatrics 1996; 97: 682–687. 28. Dellon EP, Shores MD, Nelson KI, et al. Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis. J Pain Symptom Manage 2010; 40: 821–828. 29. Mathews TJ, Minino AM, Osterman MJ, et al. Annual summary of vital statistics. Pediatrics 2008; 127: 146–157. 30. Feudtner C, Silveira MJ and Christakis DA. Where do children with complex chronic conditions die? Patterns in Washington State, 1980–1998. Pediatrics 2002; 109: 656–660. 31. Feudtner C, Silveira MJ, Shabbout M, et al. Distance from home when death occurs: a population-based study of Washington State, 1989–2002. Pediatrics 2006; 117: e932–e939. 32. Bluebond-Langner M, Beecham E, Candy B, et al. Preferred place of death for children and young people with lifelimiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 2013; 27: 705–713. 33. Boss RD, Hutton N, Donohue PK, et al. Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med 2009; 163: 783–788. 34. Durall A, Zurakowski D and Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 2012; 129: e975–e982. 35. Dussel V, Kreicbergs U, Hilden JM, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 2009; 37: 33–43. 36. Boss RD, Urban A, Barnett MD, et al. Neonatal Critical Care Communication (NC3): training NICU physicians and nurse practitioners. J Perinatol 2013; 33: 642–646. 37. POLST for Pediatrics. Children’s Hospice & Palliative Care Coalition, 2013, http://www.chpcc.org/education-research/ 38. Larochelle MR, Rodriguez KL, Arnold RM, et al. Hospital staff attributions of the causes of physician variation in end-of-life treatment intensity. Palliat Med 2009; 23: 460–470.
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PMJ0010.1177/0269216315571020Palliative MedicineBoss et al.
Original Article
Novel legislation for pediatric advance directives: Surveys and focus groups capture parent and clinician perspectives
Palliative Medicine 2015, Vol. 29(4) 346–353 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315571020 pmj.sagepub.com
Renee D Boss1,2, Nancy Hutton1, Pamela L Griffin1, Beth H Wieczorek1 and Pamela K Donohue1,3
Abstract Background: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment. Aim: To explore pediatric clinicians’ experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for LifeSustaining Treatment. Design: Clinician surveys and clinician and parent focus groups. Setting/participants: Pediatric clinicians and parents from one of Maryland’s largest health systems. Results: Of 96 survey respondents, 72% were physicians and 28% were nurse practitioners. A total of 73% of physicians and 34% of nurse practitioners felt able to lead discussions about limiting therapies “most” or “all” of the time. A total of 75% of physicians and 37% of nurse practitioners led such a discussion in the prior year. A total of 55% of physicians and 96% of nurse practitioners had written no order to limit therapies in the past year. Only for children predicted to die within 30 days did >80% of clinicians agree that limitation discussions were warranted. A total of 100% of parent focus group participants, but 17% of physicians and 33% of nurse practitioners, thought that all pediatric inpatients warranted Medical Orders for Life-Sustaining Treatment discussions. Parents felt that universal Medical Orders for Life-Sustaining Treatment would decrease the stigma of limitation discussions. Participants believed that Medical Orders for Life-Sustaining Treatment would clarify decision making and increase utilization of palliative care. Medical Orders for Life-Sustaining Treatment communication skills training was recommended by all. Conclusion: A minority of clinicians, but all parents, support universal pediatric Medical Orders for Life-Sustaining Treatment. Immediately prior to the Medical Orders for Life-Sustaining Treatment mandate, many clinicians felt unprepared to lead limitation discussions, and few had written relevant orders in the prior year. Communication training is perceived essential to successful Medical Orders for Life-Sustaining Treatment conversations.
Keywords Advance directives, physician–patient communication, pediatric palliative care
What is already known about the topic? •• Durable orders for life-sustaining treatments are increasingly mandated for adult patients. •• Maryland is the first state to include pediatric inpatients in legislation regarding end-of-life care. •• The expectations that pediatric clinicians and parents have for such statewide legislation are unknown.
1Division
of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA 2Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA 3Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
Corresponding author: Renee D Boss, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, 1809 Ashland Avenue, Suite 212, Baltimore, MD 21205, USA. Email: [email protected]
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Boss et al. What this paper adds?
•• Parents endorse universal application of Medical Orders for Life-Sustaining Treatment for pediatric inpatients, and only a minority of clinicians agree. •• Clinicians are unsure which patients need Medical Orders for Life-Sustaining Treatment and feel ill-prepared to have Medical Orders for Life-Sustaining Treatment conversations. •• Parents and clinicians agree that advance care planning communication training is needed for pediatric clinicians. Implications for practice, theory, or policy? •• Many other states are in the process of devising policies for durable orders for life-sustaining treatments for pediatric patients. •• Parents should be an integral part of this policy development.
Introduction In many countries, advance care planning for life-threatening illness is evolving from individual discussions initiated at the discretion of clinicians and patients to mandated discussions for patient groups as stipulated by hospitals, insurances, or, increasingly, legislatures. In the United States, many individual states have adopted portable medical orders, often known as Medical Orders for Life-Sustaining Treatment (MOLST), which aim to standardize advance care planning for adults.1 While specifics vary across states, broad MOLST goals include facilitating discussions about end-of-life treatment options, so that patient preferences are incorporated into durable medical orders which are valid across health-care settings. Data from adult patients indicate that MOLST increases conversations about treatment preferences, facilitates understanding of patients’ wishes, and results in fewer unwanted resuscitations in emergency situations.2–4 While pediatric advance care planning programs are increasingly common in the United States, Maryland is the first state to mandate MOLST consideration for hospitalized children. When the legislation passed in 2011, it required all pediatric inpatients to have an MOLST.5 Prior to mandated statewide compliance on 1 July 2013, MOLST was amended to exempt any patient “younger than 18 years old and who is unlikely to require a life-sustaining treatment.”6 No definition of “unlikely to require” or “life-sustaining treatment” (LST) is specified, leaving room for interpretation. Licensed physicians and nurse practitioners are authorized to write MOLST. We know of no published data regarding MOLST for pediatric patients. We designed this study to examine existing practices of pediatric advance care planning just prior to MOLST implementation in Maryland and to assess clinician’s and family’s expectations of how MOLST would impact communication, documentation, and workflow.
Participants and methods This study was conducted in April–June 2013. All pediatric clinicians from one of Maryland’s largest academic medical
centers were recruited through email. The medical center includes the state’s largest level IIIB neonatal intensive care unit (ICU) and pediatric ICU, a pediatric trauma center, multiple pediatric subspecialties including oncology and cardiothoracic surgery, and a pediatric rehabilitation center. The survey was sent to all pediatric physicians and nurse practitioners caring for hospitalized children. Survey items targeted clinicians’ experiences with limiting LST, comfort with communicating about treatment limitations, and perceptions of which patients warrant MOLST. Participants were asked to distinguish which interventions listed on the Maryland MOLST form they felt were life sustaining. Survey participants were invited to volunteer for a focus group. Clinician focus groups explored understanding of MOLST requirements, recommendations for timing of MOLST conversations, strategies for discussing MOLST, and predicted impact of MOLST on patients and staff. Members of the medical center’s Pediatric Family Advisory Council (PFAC) were recruited for parent focus groups targeted at the same topics. PFAC parents are volunteers who advise the medical center on procedures and policies relevant to patient- and family-centered care; their children receive health care at the medical center. Focus groups were conducted by three trained investigators (R.D.B., P.K.D., and P.L.G.) using an interview guide with prompts. The guide was pilot tested with physicians and parents. Researchers are members of the faculty (R.D.B. and P.K.D.) and of the PFAC (P.L.G. and P.K.D.). Sixtyminute focus groups were held in a private location at the medical center and were audio recorded and transcribed. One researcher kept field notes. Survey data were analyzed with descriptive statistics. Focus group transcripts and field notes were reviewed independently by two investigators (R.D.B. and P.K.D.) who then met to discuss the full breadth of responses and to identify shared elements for each question. Confirmation of extracted elements was performed by a third investigator (P.L.G.). The study was approved by the institutional review board (NA_00081988), and informed consent was obtained.
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Results
Table 1. Clinician perceptions of life-sustaining treatments as indicated by MOLST form.
Clinician surveys Of the 255 eligible clinicians, 102 responded to the survey; complete data were available for 96 participants, 69 physicians (72%), and 27 nurse practitioners (28%). A total of 75% (52/69) of physicians versus 37% (10/27) of nurse practitioners felt able to lead family discussions about potentially limiting LST in “most” or “any” situation. A total of 6% (4/69) of physicians and 11% (3/27) of nurse practitioners felt “never” or “rarely” able to lead such a discussion. A total of 54% (37/69) of physicians and 33% (9/27) of nurse practitioners reported having talked with more than one family about limiting LST in the prior year. A total of 19% (13/69) of physicians and 48% (13/27) of nurse practitioners reported having no such discussions during that time. Only 45% (31/69) of physicians and 1 nurse practitioner had written at least 1 order to limit LST in the past year. Of the 17 physicians who reported feeling “sometimes,” “rarely,” or “never” able to lead a family discussion about potentially limiting LST, only two had written any order to limit therapies in the past year. Alternatively, of the 52 physicians who reported feeling able to lead a family discussion about potentially limiting LST in “most” or “any situation,” over half (56%) had written an order to limit therapies in the past year. The one nurse practitioner who had ever written an order to limit therapies felt able to lead family discussions in “most” situations. The Maryland MOLST form indicates multiple specific therapies or interventions which must be addressed in the medical order for LST. Table 1 summarizes clinician perceptions of how often these therapies or interventions are “life sustaining” for children. Almost all respondents agreed that two of the interventions (cardiopulmonary resuscitation (CPR) and mechanical ventilation) met the definition of LST. Clinicians were asked to indicate which conditions should prompt discussions with families about potential treatment limitations (Table 2). Only for children likely to die in the next week or month did >80% of physicians and nurse practitioners agree that discussions were warranted with families about limiting LST. A total of 17% of physicians and 33% of nurse practitioners indicated that discussions should be had with families of all pediatric inpatients. Table 3 summarizes clinician’s expectations of how MOLST would impact the delivery of pediatric health care in general and their own practice.
Focus groups Clinicians. Two months prior to MOLST rollout, two-clinician focus groups were held and included both physicians and nurse practitioners. All clinicians had at least 10 years
MOLST order form treatment
Considers as life-sustaining treatment for a hospitalized child
Physician (N = 69), n (%)
Nurse practitioner (N = 27), n (%)
Cardiopulmonary resuscitation Intubation or mechanical ventilation CPAP or BiPAP Feeding tube Central line IV fluids IV nutrition IV antibiotics Oral antibiotics Blood transfusion Dialysis Hospital transfer Medical workupa
69 (97)
27 (100)
69 (97)
27 (100)
44 (64) 41 (59) 33 (48) 36 (52) 41 (59) 35 (51) 17 (25) 44 (64) 54 (78) 13 (19) 13 (19)
14 (52) 17 (63) 18 (67) 17 (63) 19 (70) 12 (44) 8 (30) 18 (67) 23 (85) 8 (30) 5 (19)
MOLST: Medical Orders for Life-Sustaining Treatment; CPAP: continuous positive airway pressure; BiPAP: bilevel positive airway pressure; IV: intravenous. No difference between groups. aDefined on MOLST order form as “… any medical tests needed to diagnose and/or treat a medical condition.”
experience working with pediatric inpatients. Clinicians represented specialties very relevant to advance care planning, including general pediatrics, pediatric intensive care, pediatric oncology, and genetics. Clinicians articulated the tensions inherent in the transition from LST discussions initiated at the discretion of individuals to those prompted by a state mandate. They worried that statewide notification about the legislation would not reach most families, and that clinicians would bear the burden of explaining MOLST: Are parents going to know this? How are we transitioning our parents, because they’re going to freak out. I’d freak out if you approached me with [MOLST]. I’d be like, “Excuse me? Is there something you know that I don’t know?” (Neonatal Nurse Practitioner)
Clinicians did agree that routinizing such discussions could de-stigmatize them for both families and clinicians and may avert the appearance that a clinician had “lost hope” for a child’s recovery. They noted particular benefit for children with chronic conditions (e.g. cystic fibrosis) for whom there is uncertainty about optimal timing of discussions about LST: It is something I have thought a lot about because it is a struggle, I think, to do this well. For instance patients with sickle cell … what is challenging is that some of these
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Boss et al. patients live until they’re 60, and some could have a stroke tomorrow … Also children with special health care needs, I’m thinking about the children with intellectual disabilities who could live a really long time or could aspirate and die tonight. (Geneticist) Table 2. Clinician perceptions of pediatric conditions warranting discussions of treatment limitations. Pediatric condition
Should prompt discussion of treatment limitation
Physician (N = 69)
Patients in pediatric intensive care unit, n (%) Most or all 13 (19) 51 (74) Some Patients in neonatal intensive care unit Most or all 13 (19) Some 50 (73) Patients who received CPR in Last week 46 (67) Past month 37 (54) Past 6 months 34 (49) Patients with tracheostomies Most or all 14 (20) Some 28 (41) Patients likely to die in Next month 61 (88) Next 6 months 51 (74) Next year 48 (70) I do not know which pediatric 4 (6) patients should be considered I do not think any pediatric 0 patient should be considered I think all hospitalized pediatric 12 (17) patients should be considered
Nurse practitioner (N = 27) 7 (26) 15 (56) 6 (22) 20 (74) 20 (74) 14 (52) 12 (44) 7 (26) 9 (33) 24 (89) 21 (78) 14 (52) 0
I think, if you do it when it is almost irrelevant, you take away that tendency of the parents to think “They’ve lost hope in me, they’ve given up.” (Oncology Nurse Practitioner)
Clinicians believed that MOLST might help families who have chosen to limit treatments for a child, as the durable medical order would not have to be started anew with each new clinician: … I think it is really important for the order to be entered into the computerized medical record … Families who have come to this decision of limiting care, talk a lot about having to rehash it over and over. So its that balance of revisiting it, but if a family says my wishes are the same, then don’t … go into great detail. (Hospitalist)
Clinicians did worry that introducing MOLST for children with minor illnesses (e.g. a 3-day-old infant admitted for phototherapy, who would have qualified for an MOLST under the initial Maryland regulation) might harm families and the parent–clinician relationship. In general, for children unlikely to require LST during the current hospitalization, clinicians preferred delaying MOLST discussions to later in the hospital stay or just before discharge. They worried that regulating timing of MOLST discussions (e.g. upon hospital admission) would place many discussions outside of trusted patient–clinician relationships: Sometimes we have a really special relationship with a family, we know them well. And while those are still difficult, I think those are easier dialogues to have, because whatever their reaction they will kind of understand. They know you. Then some of us have very new relationships with families, we have never met them before. That is difficult. (Oncologist)
0 9 (33)
CPR: cardiopulmonary resuscitation. No differences between groups.
Clinicians had multiple misunderstandings about MOLST specifics, including legal signatories, specified treatments, paper versus electronic format, and effective date. They worried that the MOLST document seemed directed at adult patients and was confusing and sometimes
Table 3. Clinician perceptions of how MOLST will impact pediatric medical care. I think a state law requiring me to consider discussing with all families their wishes regarding life-sustaining therapies for their child will (check all that apply) …
Physician (N = 69)
Nurse practitioner (N = 27)
P value
Clarify medical decision making for very sick children Increase the likelihood that children who could benefit from limitations of therapies will have clear goals of care Increase the utilization of pediatric palliative care Harm families by forcing difficult discussions Improve clinician’s skills in having these discussions Cause me moral distress Be a burden on the workforce Not change my practice
39 (57) 40 (58)
21 (78) 22 (82)
0.063 0.035
35 (51) 10 (15) 29 (42) 2 (3) 31 (45) 21 (30)
23 (85) 2 (7) 18 (66) 3 (11) 3 (11) 6 (22)
0.002 0.50 0.041 0.133 0.002 0.462
MOLST: Medical Orders for Life-Sustaining Treatment.
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irrelevant for pediatric patients. They further wondered if the legislative ambiguities related to pediatric patients would result in no change in clinician behavior. Clinicians recognized that successful MOLST conversations would depend on their communication skills. Several described LST discussions as “an art form” where word choice and language are critical. Both physicians and nurse practitioners worried that they lacked the skills to discuss MOLST with families in a way that would enhance goals of care and trust: My fear would be that the reactions … of some families to get furious when you approach this. And I suppose a lot of that is dependent upon the skill of the proposer, which I am sure I will lack. (Nurse Practitioner)
Clinicians desired ongoing research about the effects of pediatric MOLST to guide best practices: … wish that we had more guidance. The adults have done more studies on this than we have in pediatrics, and I struggle a lot with when is the right time … (Hospitalist)
Parents. Two months before MOLST rollout, one-parent focus group with 10 participants was held. Parents unanimously agreed that universal MOLST requirements would decrease parent stress and minimize clinician bias. Parents felt that statewide media about MOLST, hospital admission documents including a MOLST description, and clinician emphasis that MOLST is a state mandate would make the conversation easier for families to accept. Unlike clinicians, parents supported MOLST for all pediatric inpatients, even those with minor illnesses: I just, I guess, wanted to really emphasize … that this should be given to EVERYONE. (Parent 1) If it is a legal document, there should be more news out there. Just like, when HIPAA came finally, people were talking about it in the news. Then you’re like, “Okay, I did hear about something like that at the hospital.” Then it doesn’t become so scary. (Parent 3)
In contrast to clinicians, parents felt that the best time for MOLST discussions would be at hospital admission, with routine follow-up after 24 h. Parents cautioned against initiating MOLST discussions at hospital discharge, as parents might feel that clinicians had been withholding prognostic information throughout the hospitalization. Parents felt that MOLST discussions should emphasize that revisions could be made any time by parent request: I think part of that [discussion] has to be that it’s a changeable document. I think if you make it factual, that it’s a statemandated, legal document … and that you can change it at any time, that would probably be okay for me. (Parent 5)
Parents felt that discussions should reflect a family’s education level. They identified several scenarios requiring additional communication skills, including parent– parent disagreement, and child–parent disagreement about MOLST. They saw MOLST as important for patient- and family-centered care and would empower parents to feel central to their child’s care: The other thing with the document is, as scary as it is, I think that, in a lot of ways, it’s going to empower families to … to feel like they are part of care. (Parent 2)
Continuity of care across hospital and other settings (e.g. school and home health care) was seen as another important advantage, although parents worried who would be responsible for distributing a child’s MOLST to all relevant providers. Parents did have concerns about how clinicians would approach MOLST discussions and agreed that these discussions require empathy and active listening. Faceto-face conversations without electronic interruptions were deemed essential. Parents recommended required communication training to help clinicians guide MOLST discussions: And I know that we’re going in the era of electronic medical records, but this is not the time for that person to be on any electronics. (Parent 1) This is a time for that person to be looking at me … and having a face-to-face conversation. (Parent 10) I think it would be important for doctors to role play this. I know maybe they’re not into role playing, but, they can’t go in cold to a room and not have practiced. (Parent 9)
Parents recognized that some families might be reluctant to consider MOLST but felt that there was a greater good in “forcing them to have a conversation they are avoiding.” In situations where a family might actively or passively avoid MOLST discussion, parents recommend that clinicians be clear that full resuscitation is the default management: It’s for the care of your child, so that decisions can be made in advance instead of in an emergent time. (Parent 5) It’s a conversation that needs to be had. Whether you’re talking about children, or … aging parents. (Parent 4)
Discussion Data suggest that many adult patients experience unwanted LST at the end of life, often in an ICU, and that many prefer a less medicalized death surrounded by people and things meaningful to them.7–9 Gaps between what patients want and what they experience have fueled efforts to
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Boss et al. promote earlier communication about preferences for LST.10 Although multiple studies document the barriers to promoting this communication and to honoring documented LST preferences,11–14 novel efforts to facilitate this planning continue.15–17 Applying these efforts to pediatric advance care planning is challenged by the developmental variability of children and by varying cultural norms for parents as surrogate medical decision makers. Pediatric advance care planning programs exist only in the United States and Australia, according to a recent systematic review.18 In the United States, Maryland is the first state to extend advance care mandates to pediatric patients. We found that in the year prior to MOLST, only about half of physician participants had led more than one discussion with families about limiting LST for a child. Fewer than half had written a treatment limitation order. A minority of nurse practitioners felt prepared to have these discussions, and nearly none had written relevant orders in the prior year. Notably, few physicians and nurse practitioners, but all parents, felt that all pediatric inpatients warrant an MOLST. Clinicians believed that MOLST discussions were most relevant for children in a neonatal or pediatric ICU or who received CPR in the last week or who were likely to die in the next 6 months. Clinicians thought that MOLST would enhance decision making for children who might benefit from treatment limitation and would increase utilization of palliative care. Clinician survey respondents felt that MOLST conversations would not harm families or cause clinicians moral distress, although focus group participants repeatedly raised concerns about damage to clinician–parent trust. Parents and clinicians agreed that clinician training for MOLST discussions should occur. Globally, only 15% of the 234 countries recognized by the United Nations have policy related to palliative care.19 Five European countries (Belgium, England, France, Netherlands, and Poland) have laws or regulations supporting advance directives, but these vary substantially and do not clearly include children.20 While there are advocates for global advance directive policies, the concept of patient autonomy—the underpinning of advance care planning—is not culturally universal and inherently modifies patient involvement in serious medical decisions.21,22 It is clear that geopolitics and legal renderings can directly or indirectly influence end-of-life care, whether by making advance directives nonpracticable23 or, in the case of the United States, by progressively making them essential. In this study of the first US state to legislate pediatric advance care planning, parents were much more likely than clinicians to think that all pediatric patients warrant MOLST. Challenging the notion that universal pediatric consideration would upset families, parents felt that a standardized approach would de-stigmatize the process. Pediatric advance care planning documents have been
shown to be well accepted by the US families in several settings.24–26 Wharton et al.27 found that 75% of parents of children with special health care needs support written guidelines for critical situations. Dellon et al.28 demonstrated that families of patients with cystic fibrosis agree that advance care discussions should occur prior to a medical crisis. Not surprisingly, parents and clinicians in our study recommend that MOLST conversations occur, whenever possible, in the context of a trusting relationship. Yet, expanding MOLST to more patients will inevitably result in conversations occurring outside of an established clinician–family relationship. Clinicians also worried that the language of the MOLST form, which is not tailored to pediatric patients, may be an additional barrier to quality communication. In the United States, approximately half of pediatric deaths occur among newborns and infants,29 with the majority occurring in hospitals.30 Of children aged 1–18 dying from nonaccidental causes, approximately 80% die in hospitals;30 these deaths often occur much farther from home than for adult patients.31 Large studies exploring why children are more likely than adults to die in hospitals, particularly in ICUs while receiving multiple LSTs, have not been done.32 The reasons likely reflect a combination of medical and psychosocial issues. One important factor may be lack of early communication and planning. Death during infancy or childhood is distressing for families and clinicians alike, which may delay discussions of LST. Pediatric clinicians care for dying patients less commonly than adult clinicians and often have less training and experience guiding families in LST discussions. While most neonatal and infant death occurs in the hospital, nearly half of graduating perinatal–neonatal fellows report receiving minimal training focused on end-of-life communication.33 Clinicians cite uncertainty of prognosis and lack of training as primary barriers to communication about advance care planning with families.34 Yet, Dussel et al.35 found that “comprehensive physician communication and home care involvement” were predictive of a child dying at home as desired by the family. A recent review of pediatric advance care planning programs suggests that more children die at home at the family’s request when planning and supports are available.18 We found that about half of physicians and most nurse practitioners thought that MOLST would clarify decision making and treatment goals. Similarly, clinicians thought that MOLST would increase utilization of palliative care, suggesting that clinicians believe that pediatric palliative care is currently underutilized. Parents and clinicians in this study agreed that targeted communication training for clinicians should occur as part of the MOLST process. Indeed, enhanced communication is an essential goal of MOLST legislation in the United States. Only about half of physicians, and very few nurse practitioners, felt able to lead relevant discussions in most situations. Of note, most clinicians who felt uncomfortable
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leading such discussions had written no order to limit LST in the past year. Of particular concern is that Maryland law authorizes nurse practitioners to sign MOLST, but in this study, only one nurse practitioner had ever written an order to limit LST and just over one-third felt prepared to lead relevant discussions. Communication trainings focused on leading difficult discussions regarding critically ill patients have been shown to increase confidence and skills of pediatric physicians and nurse practitioners.36 California, via the Children’s Hospice and Palliative Care Coalition, has created a communication skills training specific to the MOLST document.37 Since MOLST is an unfunded mandate, it is unclear what resources will promote communication training. Physicians worried about the impact of MOLST on workflow, which may underlie reluctance to support MOLST for all hospitalized children. Clinicians felt that MOLST was most appropriate for critically ill children or those likely to die within 6 months. These judgments about pediatric MOLST eligibility fall within the amended Maryland mandate which now exempts MOLST for patients “younger than 18 years old and who are unlikely to require a life-sustaining treatment.”6 Given the vagaries of the Maryland regulation, time will tell whether clinicians forego MOLST except in extreme clinical circumstances or will approach parent suggestions for broader patient consideration. Our study has several limitations. Participants came from a single center; practices regarding communication and treatment may vary across health-care systems.38 A total of 40% of eligible clinicians responded to the survey; if nonrespondents were more likely to believe that MOLST was irrelevant to their medical practice, we may have overestimated the clinicians with recent experience discussing and writing orders for LST. While a minority of surveyed clinicians thought that MOLST might harm families, this was a significant concern raised by clinician focus groups. Because survey respondents were invited to volunteer for focus group participation, perhaps volunteers had greater concerns about MOLST. Parent focus group participants were members of the PFAC and may not be representative of all parents at the institution. They may have been more inclined to favor parental participation in decision making. Only 10 parents volunteered for the study from the PFAC. More parent input may have given different results.
Conclusion MOLST now exist, or are in development, in most states across the United States. Maryland is the first to explicitly require pediatric consideration, despite little data about how MOLST affects pediatric advance care planning. We have shown that a minority of clinicians, but all parents, believe that MOLST should be universal for pediatric inpatients. Clinicians and parents agree communication skills underlie the success of MOLST; targeted training may be
warranted. Consideration should be given to developing pediatric-specific MOLST documents. Given variability in clinician perceptions about which children should have a MOLST, the next step is to determine how MOLST alters existing practices around pediatric advance care planning. Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This work was supported by the Thomas Wilson Sanitarium for Children of Baltimore City.
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