Pediatr Blood Cancer 2008;50:945–946

HIGHLIGHTby Johannes Wolff, MD* and Birte Wolff

Quality of Death in Children: Where Is it Higher—At Homeor in the Hospital?

(Commentary on Golan et al., page 949)

P alliative care in pediatric oncology as a research field isunderdeveloped. The care occurs diversely depending on

the patient’s medical needs, the family’s wishes, the physician’seducation and style, as well as the local medical culture.Standardization, clinical guidelines, and teaching lag far behindwhen compared to the initial care of pediatric malignancies.Highly protocol driven academic research has made hugeimprovements in frontline treatment and cure. Why doespalliative care in children lag behind? Certainly, the researchtarget plays a role in answering this question. It appears farmore attractive to save future children’s lives than to developpalliative care guidelines. But this might not be all of theanswer. It is also far easier to count survivors and to determinewhich of two chemotherapy protocols is better. It is moredifficult to measure the quality of life (QoL) among the sur-vivors, and even more difficult to measure the quality of death(QoD) to determine how good a palliative care guideline was.Without such measurements, determining which practice issuperior will remain subjective and further improvement mightlack scientific basis. The work of Golan et al. is a milestoneforward in our struggle to create meaningful numbers to helpimproving pediatric palliative care.

When curative medicine has come to an end in pediatric

malignancies, a common way to handle the situation, is to discuss

the situation with the family, put a ‘‘and do not resuscitate’’

(DNR)—order in place, and transferred the patient to hospice or

home care. An alternative way is to keep the child as inpatient on

the pediatric oncology ward, adjust the room, alter the hospital

furniture, and modify the daytime workflow so that it is more

adequate to a new situation, thereby allowing the same personnel to

continue the care without a change in faces for the patient. Both

ways have benefits and pitfalls.

Keeping the child in the hospital to die can deprive the patient

from contacts to friends, siblings, favorite animals and toys.

Normally, the child’s wishes are to be overridden in the child’s best

interest by parent’s decision when it comes to treatment of cancer,

ethically justified because the adults oversee the child’s future

better. This should change when there is no future. At least during

the last days of their life, the children’s wishes should be respected

as if they were an adult’s conscious decisions. How many children

have we ever heard to answer ‘‘in the hospital’’ when asked where

they want to be? Almost exclusively, the child wants to be at

home. Fulfilling this wish is one of the few goals that might still be

achievable in the last phase of live. There are also other aspects:

In times of limited budgets and tight controls it is a frequent

administrative experience that a dying child in the hospital can

absorb more of the available resources such as nursing working time

and medication budgets than planned for scheduled admissions

before. It is a frequent nursing leader experience that too many dying

children on a ward can bring the spirit of a whole team down,

jeopardize work satisfaction ratings, and cause nurses to quit. There

are many disadvantages to the child dying in the hospital.

In the western medical culture, the majority feels that death at

home, in the own personal environment is to be preferred over death

in the hospital. But sending the child home to die is frequently

considered ‘‘giving up on us’’ by the families [1] even with respect to

still possible medical care, and indeed the acuity and intensity of the

medical care needed by a dying child can exceed the assumption

of the mainly adult patient experienced hospice organizations.

Furthermore, the highly personal bonds, grown to the caregivers

during the time of fighting the cancer can be such a large part of

the patient’s and the family’s lives, that the hospital can be more

‘‘home’’ for them than their own house. Sending the child away is

not always right.

Many pediatric oncologists wish there were not just two choices

but a way that was in between sending the children home or keeping

them on the ward. The article of Golan et al. describes a way out of

this dilemma. They created a unique integrative model of a pediatric

palliative and terminal care unit, which is part of the pediatric

hematology oncology department in the Children’s Hospital. As

early as 1999, they had the vision to introduce palliative care to every

child with cancer at the time of diagnosis and to enable a gradual

transition from symptom control during cancer-directed treatments

to end-of-life care in children. They are not alone with this vision.

The WHO Definition of Palliative Care for Children is: ‘‘Palliative

care for children represents a special, albeit closely related field to

adult palliative care. Palliative care for children is the active total

care of the child’s body, mind and spirit, and also involves giving

support to the family. It begins when illness is diagnosed, and

continues regardless of whether or not a child receives treatment

directed at the disease [2,3]. . .’’ However having the vision and

putting it into reality are two separate steps.

� 2008 Wiley-Liss, Inc.DOI 10.1002/pbc.21517

——————Division of Pediatrics, Head Section of Pediatric Neuro-Oncology,

University of Texas/M.D. Anderson Cancer Center, 1515 Holcombe

Blvd, Unit 87, Houston, Texas 77030

*Correspondence to: Johannes Wolff, Division of Pediatrics, Head

Section of Pediatric Neuro-Oncology, University of Texas/M.D.

Anderson Cancer Center, 1515 Holcombe Blvd, Unit 87, Houston,

TX 77030. E-mail: jwolff@mdanderson.org

Received 28 December 2007; Accepted 28 December 2007

Now, the authors report their experience. The most important

message of the paper might be that this can be done. In addition, the

data they describe can give an important basis for administrative

decisions, and further research. Some of the numbers confirm

preconceived notions. With building the unit the number of patients

dying there increased and the number of patients dying on other

wards decreased. Some other observations are quite surprising.

While most people would agree that dying at home is a goal

superior to dying in the hospital, building the pediatric palliative and

terminal care unit resulted in the opposite: The number of patients

dying at home decreased. Under the general assumption, that

everybody means well, this data suggests that this development was

indeed better for the patients. However, preconceived notions and

general assumptions can be mistaken. If there was a way to confirm,

that these patients died indeed better, the lesson learned from those

data would even be more substantial.

How can anyone determine the QoD? The most important source

of information for quality of life is the patient, who is not around to

be asked any more when measuring the quality of dying. That leaves

as source the family and care givers to be asked after or the patient to

be asked before as sources. Significant steps forward have been

made already [4], and some still need to be translated from the

language of other age groups [5] or other countries [6,7]. And if

we learn how to use these measurements in innovative hospital

structure initiatives as described in the article by Golan et al. we will

be able to speed up the improvement of our dying patients, including

learning where the best place for them is.

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Pediatr Blood Cancer DOI 10.1002/pbc

946 Wolff and Wolff