Correspondence
Symptoms and Suffering at the End of Life in Children with Cancer
N Engl J Med 2000; 342:1997-1999June 29, 2000
- Article
To the Editor:
Wolfe et al. (Feb. 3 issue)1 provide a compelling and long-overdue assessment of deficiencies in the care of terminally ill children. Though long on evidence, their report is short on practical suggestions for meaningful intervention and changes in standards of practice. Their study clearly confirms what many have suspected: that for far too many children, “end-of-life” care is in fact “brink-of-death” care, and in this context, the poor outcomes documented by Wolfe et al. should come as no surprise. It is disappointing that the authors did not take this opportunity to advocate more strongly for pediatric hospice programs. Even Morgan and Murphy, in their accompanying editorial,2 add only faint praise for hospice care when they compare “free-standing” programs with care by a pediatric oncology team.
Hospice is not a location of care but, rather, an overarching philosophy of compassionate, multidisciplinary treatment that can be delivered in a child's home, a residential facility, or even an acute care inpatient setting. Our programs have forged a successful partnership between hospice care and pediatric oncology.3 This partnership is characterized by an emphasis on family-centered home care; strong support from the child's hospital team to assist with clinical protocols, continuity of care, and medical supervision; and a philosophy of “aggressive palliation,” including pain management and an openness to palliative interventions such as chemoradiotherapy, transfusions, and nutritional support. When children and families decline additional therapy of curative intent, pediatric hospice programs offer the ideal support structure for excellent palliative care.
3 ReferencesDorothy E. Deremo, R.N., M.S.N.
Hospice of Michigan, Southfield, MI 48075James B. Fahner, M.D.
DeVos Children's Hospital, Grand Rapids, MI 495031
Wolfe J ,Grier HE ,Klar N , et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326-333
Full Text | Web of Science | Medline2
Morgan ER ,Murphy SB . Care of children who are dying of cancer. N Engl J Med 2000;342:347-348
Full Text | Web of Science | Medline3
Fahner J . If I should die before I wake: children's hospice in the Kevorkian era. Int J Pediatr Hematol Oncol 1997;5:65-65
To the Editor:
It is quite disturbing that so many terminally ill children are still dying in the hospital. In my short career as a pediatric oncologist, I have actively participated in the care of five terminally ill children. My participation entailed daily telephone calls to the family and the hospice team, house calls in three cases, and attendance at each child's funeral. In each case, the families were grateful to have their children at home when they died. One teenage patient went fishing, dancing, and roller-skating covered with fentanyl patches. I will always remember the words of one mother: “I held him in my arms when he entered this world, and I held him in my arms as he left us.”
Even during the terminal stages of cancer, we must adhere to the principle of first doing no harm. We are not morally obliged to succumb to a family's desire to treat until the end. We are first and foremost the child's advocates. To this end, an open and candid relationship with the family must be established from day one. Terminally ill children must not be subjected to futile medical treatments or phase 1 trials. These children must be allowed to die at home with their loved ones. We must not abandon our patients and their families when they need us most.
Claudio Sandoval, M.D.
New York Medical College, Valhalla, NY 10595To the Editor:
Substantial differences may exist between the United States and Europe in the care of children with end-stage cancer. Wolfe et al. report that 49 percent of the deaths among children with cancer in their study occurred in the hospital, with about half of these occurring in the intensive care unit. In contrast, at two university-based pediatric oncology centers in the Netherlands, we found that 64 patients died of cancer during a four-year period, with the majority of deaths occurring at home (44 [69 percent]) and a minority occurring in the hospital (20 [31 percent]).1 In agreement with the findings of Wolfe et al., about half (11) of the deaths in the hospital occurred in the intensive care unit, largely as a result of complications of treatment or at the time of diagnosis and not as a result of progressive disease.
Policies for withholding or withdrawing life-sustaining therapy in patients with terminal disease are similar in the two countries. In our study,1 the nine patients who died in the hospital ward were admitted at the request of the parents for palliative care in the terminal stage of their disease, with the pediatric oncologist as the primary physician.1 All the other patients with end-stage disease died at home, surrounded by their parents or other family members, while care was provided by the general practitioner or local pediatrician. Oncologists were involved through regular visits at the outpatient clinic and telephone consultation with the providers of home care.
1 ReferencesReinoud J.B.J. Gemke, M.D., Ph.D.
Christian M. Zwaan, M.D.
University Medical Center Vrije Universiteit, 1007 MB Amsterdam, the NetherlandsTom Révész, M.D., Ph.D.
University Medical Center Utrecht, 3508 AB Utrecht, the Netherlands1
van der Wal ME ,Renfurm LN ,van Vught AJ ,Gemke RJBJ . Circumstances of dying in hospitalized children. Eur J Pediatr 1999;158:560-565
CrossRef | Web of Science | Medline
To the Editor:
In the United Kingdom, pediatric oncology centers have responded to the special needs of children dying of cancer and the needs of their families through the development of pediatric oncology outreach programs involving nurse specialists, who work alongside physicians. These nurse specialists coordinate palliative care, provide expertise in the management of symptoms, and offer families the psychosocial and practical help they need to make home care a realistic option. This help includes home visits, support for the families and local health care teams, and a 24-hour on-call service.1 With this program, 70 to 80 percent of children with progressive malignant disease in the United Kingdom die at home.
The United Kingdom Children's Cancer Study Group centers have undertaken a prospective survey of symptoms and their management, as assessed by professionals, among children with progressive malignant disease. Preliminary data on 152 children who died between May and November 1997 (Table 1Table 1
Most Common Symptoms among 152 Children during the Last Month of Life.) suggest that the most common symptoms correlate with those reported by Wolfe et al. However, in our patients, in contrast to the findings of Wolfe et al., if account is taken of which symptoms remained unresolved, it appears that some symptoms, including pain, nausea, vomiting, dyspnea, and constipation, can be substantially reduced through intense focus on symptom management.1 ReferencesAnn Goldman, M.B., B.Chir.
Great Ormond Street Hospital for Children, London WC1N 3JH, United Kingdom1
Liben S ,Goldman A . Home care for children with life-threatening illness. J Palliat Care 1998;14:33-38
Web of Science | Medline
Author/Editor Response
The authors reply:
To the Editor: We appreciate the thoughtful comments of Deremo and Fahner, Sandoval, Gemke et al., and Goldman. Deremo and Fahner propose a partnership between hospice care and pediatric oncology as one model to improve the quality of the experience of children with cancer at the end of life. Our data support further exploration of this approach, since we found that when hospice care was introduced earlier, parents were more likely to describe their child as calm and peaceful during the last month of life. Sandoval provides a personal account of how continued, active involvement on the part of the primary oncologist can result in improved outcomes. This observation is also supported by our data. We found that when the primary oncologist remained actively involved in the child's care at the end of life, the child experienced less suffering from pain. Gemke et al. and Goldman indicate that there may be substantial differences between the United States and other countries in terms of the approach to caring for children with advanced cancer and the resulting quality of the end-of-life experience. Others have demonstrated better outcomes in terminally ill children who are cared for under socialized medical systems.1
Clearly, our data suggest a need for the development and evaluation of interventions aimed at improving palliative care for children. In the United States, we must strive for interventions that are effective, economically feasible, and compatible with the culture and structure of medical care in this country. The intervention evaluated in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments failed to improve the quality of the end-of-life experience for terminally ill adults dying in the hospital.2 One of the criticisms of that study was the lack of a pilot investigation to assess the intervention before a costly randomized, controlled trial was begun.3 Delivering optimal end-of-life care in this country is complex. Interventions aimed at improving palliative care must be evaluated with rigorous, scientific methods. Unfortunately, good ideas do not always prove to be effective.
3 ReferencesJoanne Wolfe, M.D., M.P.H.
Holcombe E. Grier, M.D.
Jane C. Weeks, M.D.
Dana–Farber Cancer Institute, Boston, MA 021151
Sirkia K ,Saarinen UM ,Ahlgren B ,Hovi L . Terminal care of the child with cancer at home. Acta Paediatr 1997;86:1135-1130
CrossRef | Web of Science | Medline2
The SUPPORT Principal Investigators
CrossRef | Web of Science3
Lo B . Improving care near the end of life: why is it so hard? JAMA 1995;274:1634-1636
CrossRef | Web of Science | Medline
Author/Editor Response
Deremo and Fahner incorrectly infer that we have only faint praise for pediatric hospice programs. Nothing could be further from the truth. We support the hospice concept wholeheartedly and have developed a pediatric hospice program in our own institution. Nonetheless, we are concerned that reimbursement issues, regional variation in the delivery of care, lack of available pediatric expertise, and the potential risk of exclusion of the primary care team from end-of-life care for children dying of cancer currently preclude the simple application of pediatric hospice care as a universal solution to the challenges of end-of-life care for these children.
We were touched by Sandoval's personal investment in the care of his own patients dying of cancer. Although we agree with him that dying patients ought not to be subjected to futile treatments, we take issue with his blanket condemnation of phase 1 trials. Although the majority of children with cancer are cured by modern therapy, there still are many for whom therapy is unsatisfactory, and there remains a need to identify more effective, less toxic anticancer drugs for children. Phase 1 trials of new drugs must be conducted separately for adults and children, because it is known that drug tolerance and pharmacokinetics in adults differ from those in children. After conventional therapies have failed, some families and patients may simply feel that it is not yet time to give up hope and that something more can be done to forestall the progression of disease. They may also take comfort in the opportunity to continue to obtain care in the same hospital from familiar staff members and find altruistic satisfaction in contributing to the development of a new treatment. Thus, we contend that for selected children and families, participation in a phase 1 trial of a promising new anticancer drug is entirely consistent with good palliative care.
Elaine R. Morgan, M.D.
Sharon B. Murphy, M.D.
Children's Memorial Hospital, Chicago, IL 60614- Citing Articles (7)
Citing Articles
1
Boris Zernikow, Erik Michel, Finella Craig, Brian J. Anderson. (2009) Pediatric Palliative Care. Pediatric Drugs 11:2, 129-151
CrossRef2
Boris Zernikow, Erik Michel, Brian Anderson. (2007) Transdermal Fentanyl in Childhood and Adolescence: A Comprehensive Literature Review. The Journal of Pain 8:3, 187-207
CrossRef3
Stefan J. Friedrichsdorf, John J. Collins. (2007) Management of Non-Pain Symptoms in Pediatric Palliative Care. Medical Principles and Practice 16:1, 3-9
CrossRef4
Stefan J. Friedrichsdorf, John J. Collins. (2007) Principles of Pediatric Pain Management during the End-of-Life Period. Medical Principles and Practice 16:1, 10-15
CrossRef5
B. Zernikow, C. Wamsler, C. Schiessl. (2005) Medikamentöse Schmerztherapie in der Kinderpalliativmedizin. Monatsschrift Kinderheilkunde 153:6, 517-530
CrossRef6
S. Friedrichsdorf, C. Wamsler, B. Zernikow. (2005) Dyspnoe bei Kindern und Jugendlichen in der Palliativphase. Monatsschrift Kinderheilkunde 153:6, 531-537
CrossRef7
C. Wamsler, S. Friedrichsdorf, B. Zernikow. (2005) Therapie der Angst in der Kinderpalliativmedizin. Monatsschrift Kinderheilkunde 153:6, 538-544
CrossRef
