Pediatric Palliative Care Physicians Research Articles

Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital.

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success. The hospital-based palliative care team included trained pediatric palliative care physicians, a nurse, and a counselor. There was a steady increase in monthly referrals. There were 110 referrals in total, including 89 (81%) deaths and 18 (16%) babies were alive at the time of final follow-up, 10 months after the pilot program was completed. The program addressed physical symptoms, including providing morphine, as well as psychosocial and spiritual concerns of families. A model of hospital-based palliative care for neonates can be implemented within NICUs in tertiary government hospitals in India. Neonatal palliative care programs should include partnerships with charitable organizations to support implementation costs and provide palliative care training, mentorship, and capacity-building support.

Features of the Worldview of Pediatric Palliative Care Physicians: an Interpretative Phenomenological Analysis

Pediatric palliative care is a multidisciplinary branch of medicine and health care that includes both biomedical techniques of patient care and social and psychological practices. At the same time, its goal differs from that of curative approaches in medicine and is predominantly to alleviate patients’ suffering. We used the qualitative method of Interpretative Phenomenological Analysis (IPA), which allows us to uncover the «inside», emotional and existentially significant dimensions of respondents’ personal and intersubjective experiences. This method provides an «insider» perspective of the community under study. The article presents the results of IP. interviews with nine doctors of pediatric palliative care working in the Russian health care system and taking specialized advanced training courses. The goals of the study were to identify the most subjectively significant factors for physicians of palliative care for children, influencing the ethical and communicative aspects of interaction with patients and their parents, and to identify the most important problems and issues of concern to specialists, with an emphasis on worldview. Semi-structured interviews were conducted using a specially designed questionnaire and mainly addressed the topics and issues of worldview of palliative care physicians (including the role of faith and religion) in the context of communication with patients and their parents. As a result, it was found that doctors typically assess their work as a vocation (in a number of cases — with explicitly religious attribution), and this is used by part of the respondents as a justification of their activities in front of a critically minded environment. A common view of a hospice is that of a place that needs to be comfortable, home-like. Subjectively, the majority of respondents evaluate themselves as Orthodox Christians, but emphasize the «non-fanatical» nature of their faith. At the same time, respondents note the significant influence of parental religiosity on communication patterns and acceptance of inevitable disease outcomes. Most respondents noted a high need for a spiritual counsellor in the hospice. Respondents do not necessarily insist that the counsellor be a priest, but his or her figure in the physicians’ descriptions has distinct confessional features.

Comparing Pediatric Surgeons' and Palliative Care Pediatricians’ Palliative Care Practices and Perspectives in Pediatric Surgical Patients

PurposeThe nature of interactions between surgical and pediatric palliative care (PPC) teams caring for seriously ill children is unknown. This study compares pediatric surgeons' and PPC physicians’ perspectives and practices regarding PPC in surgical patients. MethodsA survey was administered to members of the American Pediatric Surgical Association and Pediatric Interest Group of the American Academy of Hospice and Palliative Medicine. ResultsOne hundred twenty-four pediatric surgeons (31% female, 17.2 mean years of experience) and 71 PPC physicians (69% female, 10.1 mean years of experience) participated. Forty-three percent of surgeons reported consulting PPC often for children with serious illnesses. However, most PPC physicians (67%), said they are rarely/never consulted by surgeons (p = 0.002). PPC physicians were more likely to report that PPC involvement was too late (43% vs 21%, p = 0.005). More surgeons than PPC physicians felt that an appropriate time for PPC consultation was during serious illness deterioration (30% vs 7%, p = 0.05), whereas PPC physicians preferred consultation at diagnosis (54% vs 34%, p = 0.05). More PPC physicians (67%) than surgeons (17%) agreed that invasive interventions could be considered a form of PPC (p = 0.002). The most reported barrier to PPC consultation by surgeons (29%) was concern that parents would think the surgical team was giving up. PPC physicians were more likely to perceive barriers to consultation by surgeons than surgeons themselves (p < 0.001). ConclusionWhile pediatric surgeons value PPC involvement, surgical culture and misperception of parental resistance to PPC involvement lead to palliative care consultation only when illness acuity and severity are high, the possibility of curability is low, and death seems imminent. Seeking to understand patient and family priorities in care, managing patient and parental psychological distress, and treating non-surgical symptoms are areas where PPC can improve patient care. Barriers to PPC use and self-reported knowledge gaps in PPC provision may be mitigated by formalized PPC training for surgeons and intentional collaboration between the two groups. Type of StudySurvey. Level of EvidenceN/A.

Dr. David Lysecki

Pediatric palliative care is often an overlooked field of medicine. As terminally ill children make up a small proportion of patients in Canada, a less robust network of resources is available to deliver end-of-life care for these patients. To gain a better insight into this field, we sat down with Dr. David Lysecki, a pediatric palliative care physician at McMaster Children’s Hospital. He is also the founder and head of the Quality of Life &amp; Advanced Care program at McMaster Children’s Hospital and the Division of Pediatric Palliative Medicine in the McMaster University Department of Pediatrics.

A "Good" Patient

A "Good" Patient Erica C. Kaye All I wanted was to be a mother. The yearning was an animal thing, instinctive and unconstrained, fierce and precarious. Everything else became surrounding noise. Each day, I went through the motions; but in a parallel world, fragile hope cyclically fractured, again and again. I've struggled with infertility and pregnancy loss for as long as I've been a doctor. Most memories from my medical training and career are tethered to the pain of childlessness. On 24-hour shifts, I hid in an empty parent room in the pediatric intensive care unit, injecting hormones into my knotted backside. Three hours after transferring a fragmenting embryo into my inhospitable, cramping uterus, I led a memorial service at the hospital for children who died. I received the call that I was not pregnant while sitting on a crowded city bus on my way to staff a resident clinic, tears streaming down my face. A decade later, the memories are still raw. Like visceral imprints, they silhouette and contour my sense of self. Across my training, so many people told me who I was "supposed to be." A dedicated clinician, dependable colleague, erudite researcher, thoughtful educator, devoted mentor. I tried hard to meet everyone's expectations, but I was compressed by misery. In my guts, I knew that what I was supposed to be was a mom. Anxiously, I sought out fertility treatment. As a physician, I thought I was prepared to navigate the healthcare system as a patient. In retrospect, I was brutally naïve and inexperienced. I was training to become a pediatric palliative care physician, and I saw the practice of medicine as a pathway towards holistic care for a person's physical, emotional, spiritual, and social wellbeing. I was learning to ask patients about their goals, values, hopes, fears. To see the whole patient and wonder about their personhood. To prioritize their dignity and humanity. When I entered the fertility healthcare system, I was disoriented and scared. The clinic was a cold, sterile space. When I felt invisible, I blamed myself for not being savvy enough to navigate the system. I think a part of me believed that, if I was a "good" patient, someone in the system would see me and care. It was strange to be wholly unseen, and yet completely, grossly exposed. Infertility stripped me bare—bodily, mentally, financially, existentially. I was systematically surveyed for defects, my failings interrogated, the broken parts scrutinized. Problems without a straightforward fix were discarded. Healthcare professionals calculated the sum of my deficits with ease, but no one noticed a person drowning in grief. Medical training conditioned me to take up as little space as possible, to apologize for the inconvenience that my issues or worries might cause for others. The fertility clinic made repeated mistakes: incorrect prescriptions, instructions that didn't make sense, communication breakdowns. But I was too overwhelmed to question or examine things closely, and I was incapacitated by isolation. My husband, also in medical training, was living in another state. We had not told anyone about our [End Page E1] infertility struggles, and I shouldered the weight of navigating my medical care alone. It's hard to think back to those days. Grief was a physical hole in my chest, sucking out air. I didn't know how to function, to be whole again. Anguish born from invisible, intangible loss is intense and alienating. I felt guilty about my degree of suffering when I lacked visible scars to justify the wound. Practically, I didn't have the emotional bandwidth to explore or tend to my grief; I was too overwhelmed and drained by the stamina needed to steer through a disinterested, chaotic healthcare system. After residency, I joined my husband in another state. We were devastated to learn that, in crossing state lines, we had lost our fertility coverage. We found a new clinic in the area and began draining our hope and savings. Across two subspecialty fellowships and an early faculty career, we did multiple IVF cycles and mourned the loss of five desperately wanted pregnancies. It was the darkest time in my life. As hard as it was...

Supporting Transition to the Bereaved Community After the Death of a Child.

Supporting Transition to the Bereaved Community After the Death of a Child.

When Following the Rules Feels Wrong.

The Covid-19 pandemic has created a clinical environment in which health care practitioners are experiencing moral distress in numerous and novel ways. In this narrative reflection, a pediatric palliative care physician explores how his hospital's strict visitation policy set the stage for moral distress when, in the early months of the pandemic, it prevented two parents from being together at the bedside of their dying child.

Decision-Making Regarding Ventilator Support in Children with SMA Type 1-A Cross-Sectional Survey among Physicians.

Spinal muscular atrophy (SMA) is a neuromuscular disorder characterized by muscle atrophy and severe proximal muscle weakness. In the absence of curative treatment, it has been controversial whether critically ill infants with SMA type 1 should receive ventilator support. The aim of this study was to investigate the process of decision-making regarding ventilator support in children with SMA type 1 from the perspectives of physicians. A web-based survey with 17 questions and 2 case vignettes was conducted in 671 physicians in Germany and Switzerland from 12/2016 to 03/2017. The survey focused on factors influencing the decision about ventilator support and the content in informed consent discussions. Additionally, physicians were asked about their general attitude towards mechanical ventilation in children with SMA type 1 and their hypothetical clinical management in emergency settings using case vignettes. Hundred and sixty-five physicians participated in the survey (50.3% child neurologists, 18.8% specialists for ventilator support, 6.1% pediatric palliative care physicians, and 6.1% with more than one of these specializations). Of all physicians, 44.2% confirmed to have experience with SMA type 1 patients using ventilator support. In summary, our results show that physicians' attitudes and experiences about mechanical ventilation in children with SMA type 1 vary considerably and are likely to influence the outcome in informed consent discussions and the hypothetical management in emergency settings.

Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children With Advanced Cancer

ContextMethadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. ObjectivesTo better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. MethodsA survey was sent to the American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV. Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. ResultsOne-hundred and five respondents (91%) provide palliative care to children ≥ 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board certified in Hospice and Palliative Medicine, and most (39, 63%) certified via the direct pathway (“grandfathering”). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended toward decreasing methadone dose more (40% ± 19%) than non–board-certified physicians (28%, ±20%) when changing from the oral to intravenous route (P = 0.07). Respondents defined a QTc interval as “prolonged” (mean ± SD) at 444 milliseconds (±68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (±33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). ConclusionsThere are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regard to methadone. More education is needed on the accurate value of a prolonged QTc interval.

Physician Shadowing for Development and Implementation of a Paediatric Palliative Care Service in Enugu, Nigeria

Background: The challenges facing Nigerian children with cancer and other chronic life-limiting illnesses are enormous, with many of them not surviving due to lack of supportive services. About 80% of children living with cancer in developing countries have no access to proper cancer care and usually present to institutions like ours with very advanced disease. Cost of treatment in hospital is astronomical, with most families having to pay out-of-pocket but being unable to do so. Also, many pediatricians are discouraged when they feel they are not capable of making progress with the child's treatment and are left with feelings of hopelessness, giving patients and families the impression they have given up. The combination of these factors usually results in patients absconding from inpatient admission, defaulting from treatment and eventually dying at home. Aim: The current practice of palliative care in our institution is near-completely adult-based with little pediatric involvement despite the huge pediatric palliative care burden. We want to change the current narrative and build the pediatric palliative care practice in our institution, through the practice of 'shadowing'. Methods: We intend to accomplish this through the opportunity of the 2018 UICC African Cancer Fellowship, by visiting the Paedspal, a nongovernmental South African pediatric palliative care organization affiliated with the Red Cross War Memorial Children's Hospital and the Rondebosch Medical Centre, that offers inpatient, outpatient and hospices services. Results: Outcomes from this project will define the probability of a clinical observer program in effectively serving as a catalyst for the development and implementation of a pediatric palliative care program and as well as a facilitator for the mentoring experience. Conclusion: We posit that 'the shadowing experience' may be an effective strategy to building capacity in hospitals with no specialist pediatric palliative care physicians.

Practices, Attitudes, and Beliefs of Palliative Care Physicians Regarding the Use of Methadone and Other Long-Acting Opioids in Children with Advanced Cancer.

Palliative care physicians often assist with pain management in children with cancer, but little is known about how they use long-acting opioids for chronic pain with these patients. To determine the practices, attitudes, and beliefs of palliative care physicians toward the use of long-acting opioids in children with advanced cancer. An electronic survey was sent to all members of The American Academy of Pediatrics (AAP) Section of Hospice and Palliative Medicine (SOHPM) and those identified as physicians who provide palliative care to children on the AAP SOHPM LISTSERV®. The response rate to the survey was 62% (116/188). A majority (66% [77/116]) of physicians are board certified in both pediatrics and hospice and palliative medicine. This represents 28% of all board-certified pediatric palliative care physicians. Most palliative care physicians report comfort in using long-acting opioids in children (84-94%), with the exception of long-acting hydromorphone (37%). Physicians perceived methadone as least costly (3%) but associated it with a higher perceived family resistance (51%). As compared with pediatric palliative care fellowship-trained physicians, nonpediatric fellowship-trained physicians perceived titration of oxycodone ER and morphine ER to be easier (p = 0.06, p = 0.07) and less likely to agree that the main reason for starting methadone is that the existing formulations of other long-acting opioids are unsuitable for children (p = 0.05). Most physicians who provide palliative care to children are comfortable using opioids but there is significant variation in the level of comfort with different opioids. This information will be helpful in developing targeted education for palliative care providers.

Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases.

A substantial number of children cared for by pediatric palliative care physicians have progressive non-malignant conditions. Some elements of their care overlap with care for children with cancer while other elements, especially prognosis and trajectory, have nuanced differences. This article reviews the population, physical-emotional and social concerns, and trajectory.

A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States.

Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores.Significance of resultsCF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.

Providing Pediatric Palliative Care Education Using Problem-Based Learning.

The Institute of Medicine and the American Academy of Pediatrics has called for improvement in education and training of pediatricians in pediatric palliative care (PPC). Given the shortage of PPC physicians and the immediate need for PPC medical education, this study reports the outcomes of a problem-based learning (PBL) module facilitated by academic general and subspecialty pediatric faculty (non-PPC specialists) to third year medical students. Objectives/Setting: To test the effectiveness of a PPC-PBL module on third year medical students' and pediatric faculty's declarative knowledge, attitudes toward, perceived exposure, and self-assessed competency in PPC objectives. A PBL module was developed using three PPC learning objectives as a framework: define core concepts in palliative care; list the components of a total pain assessment; and describe key principles in establishing therapeutic relationships with patients. A PPC physician and nurse practitioner guided pediatric faculty on facilitating the PPC-PBL. In Part 1, students identified domains of palliative care for a child with refractory leukemia and self-assigned questions to research and present at the follow-up session. In Part 2, students were expected to develop a care plan demonstrating the three PPC objectives. Measures included a knowledge exam and a survey instrument to assess secondary outcomes. Students' declarative knowledge, perceived exposure, and self-assessed competency in all three PPC learning objectives improved significantly after the PPC-PBL, p = 0.002, p < 0.001, and p < 0.001, respectively. There were no significant differences in faculty knowledge test scores from baseline to follow-up, but scores were generally high (median >80%). Students and faculty rated palliative care education as "important or very important" at baseline and follow-up. This study suggests that key concepts in PPC can be taught to medical students utilizing a PBL format and pediatric faculty resulting in improved knowledge and self-assessed competency in PPC.

293 - Can't be Fixed, but Still Alive: Planning a Rich Life for the Child with Life Threatening Heart Disease

Introduction: Despite advances in pediatric cardiac care, some children will have limited treatment options and a shortened life expectancy. Treatment goals for these patients then become how to extend their lives where possible, and how to improve their quality of life by minimizing both physical and non-physical causes of suffering. To achieve these goals at CHLA, a combined Cardiology and Pediatric Palliative Care (PPC) clinic was conceived and implemented. This “Total Life Cardiac” (TLC) clinic meets monthly and is housed in the patients' cardiology medical home. Patients are identified and referred from within cardiology. Core team members include the primary cardiologist, PPC physician, social worker, psychologist, care coordinator, and nutritionist. Multiple clinic rooms are available so that patients can see various team members without moving between rooms, in a flow based on a pre-visit discussion. A detailed post-visit meeting generates a comprehensive care plan. Results: From July 2013 to April 2017 the TLC program served 40 patients, with 99 total patient visits. Patient age at referral ranged from 2 weeks to 24 years (median 10.9 yr). Diagnoses varied, with 23 (57%) congenital structural heart disease, 12 (30%) cardiomyopathy, 4 (10%) secondary pulmonary hypertension and 1 (2.5%) primary arrhythmia. Significant co-morbidity from other organ systems, including orthopedic, genetic, pulmonary, metabolic and renal, existed in 13 (33%). Total visits per patient ranged from 1–10 (mode = 1, median = 2). There was on average a 10% yearly attrition due to death, (total 10 in 4 years, 2 with primary cardiomyopathy, 8 with structural heart disease). Of the 14 (35%) patients that came only one time, 10 (20%) had their needs adequately addressed at that first consultation, and 4 (10%) died before their next visit. Of the 10 (25%) patients referred for cardiac transplant evaluation, 3 had successful transplants, 2 single ventricle patients died while awaiting transplant, and 5 were not eligible for transplant. A total of 5 patients (13%) were medically improved since their first TLC visit after a medical procedure or with medical treatment. Significant logistical barriers regarding cost, resources, and administrative buy-in were overcome, and over time we have clarified the program's mission and values, decreasing some of the common misconceptions surrounding palliative care in these patients. We discuss the principal benefits of the TLC program to the patients, to the divisions of cardiology and PPC, to the primary cardiologist, and to the medical system. Conclusion: Our model demonstrates the feasibility and some of the potential benefits of an integrated PPC and pediatric cardiology clinic for patients with life limiting illness, including those who may not be candidates for further palliation with heart transplant.

Pediatric Palliative Care Training in Fellowship: A National Survey of Adult Palliative Medicine Fellowship Directors and Pediatric Rotation Directors (S731)

•Outline the current state of education and clinical training of adult hospice and palliative medicine (HPM) fellows in pediatric palliative care (PPC).•Compare responses between adult HPM fellowship and pediatric rotation directors regarding the future of PPC education and training. With only seven pediatric palliative care (PPC) programs in the country, there is a lack of PPC physicians. Large numbers of pediatric patients are cared for by palliative physicians trained in adult fellowships. Adult HPM fellowships require pediatric training, but little is known about what is taught and what educators’ thoughts are about this training. To describe adult HPM fellows’ clinical and educational exposure to PPC. An electronic survey was sent to adult HPM fellowship directors and their respective pediatric rotation directors. The survey elicited information about PPC learning objectives, didactics, and fellows’ PPC clinical experience. Finally, directors’ attitudes about the current and future state of PPC training was surveyed. Data was de-identified, and descriptive statistics, Chi-square, and sample t tests were analyzed. 41 of 98 adult HPM fellowship directors and 36 of 80 pediatric rotation directors responded (response rates 42% and 45%, respectively). Most programs indicated their fellows spend time observing PPC teams manage symptom and communication issues rather than independently managing patients with supervision. For example, only 9 of 36 programs allowed adult fellows to independently convert opioids with supervision. Fellowship and pediatric rotation directors felt somewhat (46%) or very (17%) uncomfortable with adult HPM fellows practicing PPC. Fellowship and pediatric rotation directors disagreed about whether they would be likely to develop a pediatric track within their programs (p=0.04). Most adult HPM fellows are observing PPC teams rather than learning to independently manage patients. Both groups of respondents indicated discomfort with adult HPM fellows practicing PPC.

To Begin at the Beginning: Determining Priorities for Pediatric Palliative Care Fast Facts with a Modified Delphi Study (TH346-A)

Discuss the Fast Fact topics that pediatric palliative care physicians and pediatric residency program directors agree are most important for the education of pediatric interns. Original Research Background: Palliative care Fast Facts—a collection of concise educational summaries on palliative care topics— enhance knowledge of internal medicine residents. There is no existing database of pediatric palliative care Fast Facts and no agreement on the core topics for which these summaries are needed. Research Objectives: To determine the core topics for pediatric palliative care Fast Facts for the pediatric intern. Methods: of experts on an issue where none previously existed. We surveyed expert pediatric palliative care physicians and expert pediatric residency program directors to reach consensus on the highest yield topics for pediatric Fast Facts for the pediatric intern. In the first round survey, experts rated (1-5 Likert scale) a list of 93 pediatric palliative care topics identified via literature review to indicate the top Fast Facts that should be written for the pediatric intern and suggested additional topics. Topics were categorized

The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

Can a Patient Designate His Doctor as His Proxy Decision Maker?

Most lawyers and bioethicists recommend that patients enact a durable power of attorney for health care designating somebody as their proxy decision maker should they become unable to make decisions. Most people choose family members as their agent. But what if a patient wants his or her doctor to be his or her proxy decision maker? Can the doctor be both physician and surrogate decision maker? Or should those roles necessarily be kept separate? We present a case in which those issues arose, and sought comments from Sabrina Derrington, a pediatric palliative care physician; Arthur Derse, an emergency department physician and lawyer; and Phil Black, a pulmonologist.

Trisomy 13 and 18 and quality of life: Treading “softly”

Not too long ago I was privileged to speak at an annual international conference of the Support Organization For Trisomy 18, 13 and Related Disorders (SOFT). I learned much more than I taught. There were over 200 families there. Approximately half of the families were bereaved parents of a child with Trisomy 13 or 18. But then there was the other half, the half with surviving children with a trisomy. The oldest child I met was a young lady with trisomy 18 who was celebrating her 30th birthday. She was beautiful. Well dressed and impeccably groomed. She was non-ambulatory, nonverbal, and had a gastrostomy. But she surely knew her parents, she smiled at them and touched them with affection. There were many others with a wide distribution of ages. I met 16-year-old Karah and her siblings 11-year-old Olivia and 9-year-old Spencer. Karah’s smile as she hugs her siblings is contagious (Fig. 1). Olivia had written a wonderful tribute to Karah in which she wished that others could see Karah’s heart in the same way she did. She loved her deeply and wanted others to do the same. I met a family with an adorable 3-year-old with trisomy 13. She was walking and squealing and smiling and relating to her parents. Must be a mosaic I thought but then her physician mom told me that chromosomes were done at Boston Children’s and she was a full trisomy. I saw a room full of families with children with trisomies and yes, they had profound disabilities. But the room was filled with smiles and laughter and all of the sounds of people enjoying one another. A room full of longterm survivors. After nearly 40 years as a neonatologist and now several years as a pediatric palliative care physician, I considered long-term trisomy survivors a statistical rarity. Forget the statistics and the rarity. This was a room full of families having fun with their children. Each one was different, each with a distinct personality, each with the dignity of full personhood. I do not want to minimize the struggles these families go through. One mom said that most were just inches away from losing it completely on many days and that sometimes it was just hard to get out of bed to face changing a diaper on her 20-year-old. But, these parents would not have it any other way. I learned very quickly that the three words these families never wanted to hear from physicians and others who provide care were ‘‘Quality of Life.’’ I was somewhat taken aback because as a palliative care physician I frequently use these words to describe what we do in terms of helping families cope, helping children deal with pain and other symptoms so that life may be as good as it can be up to and including the time of dying. Good palliative care is much more about living than dying. Apparently for these families, the phrase ‘‘quality of life’’ had been used by the medical establishment in judgmental ways perhaps in times of giving advice with regard to treatment or just general commentary. A remark soon after birth that sounds like, ‘‘I’m afraid your child won’t have a very good quality of life’’ may seem innocent but it is not. How easy it is to assume we know what a good quality of life is for anyone other than ourselves. We assess the burdens of care, the impact on siblings, the impact on parental relationships, the impact on finances and the utilization of resources. We perform ethical analyses assuming