**9. Impending death: At the end of life**

Despite the remarkable growth in the percentage of cures and the increasing sense of hope being given to newly diagnosed children and their families, many of the children are not able to be cured. Death for some remains a reality. There are three periods of time surrounding this final phase of life that have become the subjects of research. The first is the period when treatment is judged to be no longer effective and the difficult decision is made to move from curative intent to the palliative phase of care. The second is the period from the beginning of palliative care to the death of the child. The third is after the child dies, with the staff counseling the parents in their grief following the death of their child.

A child with cancer is considered by his/her physician to be moving from curative to palliative care when the child cannot be successfully treated by presently available therapies, and the child needs specific treatments, identified to be palliative and not

How to Accompany Children and

newness of their experience.

of communicating that awareness.

of the effectiveness of our interventions.

legal problems.

subtle forms of burnout.

that they can understand.

problems as they enter adulthood.

Parents During the Different Phases of a Severe Chronic Disease 261

1. As we health care professionals become more experienced in dealing with the children with cancer and their families, we cannot forget that for each newly diagnosed family, it is truly all brand new. Each case is individual. We should continue to bring to the newly diagnosed children and their family a fresh sensitivity that acknowledges the

2. Children, even the youngest, sense the seriousness of their illness. They pick up the fears and anxieties of the adults around them. They do their best to communicate with us, at all ages. Even the youngest try to talk to us, often without words, often just by their body language. How well do we listen? Do we truly listen? We need to develop more effective ways of attending to what the children are experiencing and their mode

3. Many of our interventions have proceeded far ahead of our success in measuring their effectiveness. While many new instruments have been developed and older instruments have been creatively applied specific to the study of the children and their families, we need to continue this creative effort and plunge more deeply into the study

4. Parent groups are critical to the continued success of each clinic's efforts, not only by forming support services for one another on mutual psychosocial needs, but as importantly in teaming with physicians in raising funds to keep the clinic up-to-date and growing both in research and in intervention. Health care professionals and parents should strengthen their alliance, making it a priority to continue sharing decisionmaking, not only in individual cases, but in parental support of the clinic's growth. 5. Among the newly diagnosed families, there will be a small percentage 15% or so who bring with them pre-diagnosis problems that can seriously interfere with the child's treatment. We should continue to develop ways to help identify these families at the very beginning, so that we can refer them for the extra psychosocial help that they will need in order to cope with the treatment. With our remaining resources, we will then be better able to help the families who bring with them a stronger history of coping abilities and who are less encumbered by long-standing behavioral, social, financial, or

6. Burnout is a very serious possibility for those working with children with cancer and their families. Acknowledging this very real fact and talking about it openly within the health care team can help prevent serious burnout and alleviate the milder and more

7. While there is an ongoing need for professionals to publish their findings in refereed journals, it is equally important to translate these findings into readable, clear, and simple booklets or pamphlets for the children, for their parents, and for their teachers. We owe it to the children and their families to continue developing clear and simply written booklets that can help explain some of the complexities of the treatment in ways

8. Much of our psychosocial long-term follow-up study during these past years has focused on potential negative sequelae of the illness and how best to prevent and/or ameliorate them. The next step in helping the children as they grow into adulthood should be to focus on the potential for growth associated with their illness. The children-becoming-young-adults, by overcoming their illness, have a golden opportunity to develop their skills in coping and learning to deal with future life's

curative, for physical or mental distress. There can be a long delay between the moment when the physician determines that the child will not be cured and the moment when everyone involved agrees that the child has entered the last or final phase of life.

In managing this transition from the curative to the palliative phase of the child's treatment, it is critical to protect the child. The expectations of the family must be considered to help them avoid feelings of guilt for not having done everything possible. However, a real dilemma is created for everyone if aggressive therapy is continued when the possibilities of cure are virtually not existent.

The decision to move from the intent to cure to palliative care should be made with the parents and the full health-care team, certainly including the nurses. Depending on age and level of development, the child should also be involved in the decision, with older children especially participating more actively. The child should know as much as possible and developmentally appropriate about the seriousness of his/her situation. However, if the child wishes to remain less informed, this wish should be respected, and whatever information is given should allow the child to retain a margin of hope.

The continuation of curative treatment beyond the point when cure is no longer possible should be avoided (the so-called ''ruthless obstinacy'' treatment).

After a child dies, that individual child's medical history should be evaluated. This evaluation should be made by the health-care team as a group. It is very important to reflect on all events, even minor ones, that occurred during the course of the child's treatment. It is critical to reflect on the choices that were made and why, in order to help the staff come to terms with their own grieving and to learn from the experience in order to help future families.

The center's health-care team should be prepared to modify its overall philosophical goals and reset directions and guidelines when appropriate, based on such review of individual cases and parental comments.

After the child dies, hospitals should offer bereavement counseling on the part of physicians and nurses to help clarify past care and guide future grieving. Parents and siblings, when appropriate, can be invited to discuss with the physician both the level of care and the surviving family members' current needs. A first-step aid to bereavement is for the physician, about three to four months after the child dies, to call back the parents (and siblings, when age-appropriate) and to discuss with them the details of the terminal phase, to help them work through their understanding of what happened. If at this point, some families need further help in grieving, they can be referred to parent-self-help grieving groups or to one-on-one therapy. For the majority of the families, the one follow-up interview appears to be a sufficient step in helping them to move forward through the grieving process.

#### **10. Final recommendations for application: Since diagnosis on**

Psychosocial interventions have become so fully incorporated into the care of children with cancer that they are now considered, not just an appendage, but a critical component in the care of the child with cancer. Where do we go from here?

curative, for physical or mental distress. There can be a long delay between the moment when the physician determines that the child will not be cured and the moment when

In managing this transition from the curative to the palliative phase of the child's treatment, it is critical to protect the child. The expectations of the family must be considered to help them avoid feelings of guilt for not having done everything possible. However, a real dilemma is created for everyone if aggressive therapy is continued when the possibilities of

The decision to move from the intent to cure to palliative care should be made with the parents and the full health-care team, certainly including the nurses. Depending on age and level of development, the child should also be involved in the decision, with older children especially participating more actively. The child should know as much as possible and developmentally appropriate about the seriousness of his/her situation. However, if the child wishes to remain less informed, this wish should be respected, and whatever

The continuation of curative treatment beyond the point when cure is no longer possible

After a child dies, that individual child's medical history should be evaluated. This evaluation should be made by the health-care team as a group. It is very important to reflect on all events, even minor ones, that occurred during the course of the child's treatment. It is critical to reflect on the choices that were made and why, in order to help the staff come to terms with their own grieving and to learn from the experience in order to help future

The center's health-care team should be prepared to modify its overall philosophical goals and reset directions and guidelines when appropriate, based on such review of individual

After the child dies, hospitals should offer bereavement counseling on the part of physicians and nurses to help clarify past care and guide future grieving. Parents and siblings, when appropriate, can be invited to discuss with the physician both the level of care and the surviving family members' current needs. A first-step aid to bereavement is for the physician, about three to four months after the child dies, to call back the parents (and siblings, when age-appropriate) and to discuss with them the details of the terminal phase, to help them work through their understanding of what happened. If at this point, some families need further help in grieving, they can be referred to parent-self-help grieving groups or to one-on-one therapy. For the majority of the families, the one follow-up interview appears to be a sufficient step in helping them to move forward through the

Psychosocial interventions have become so fully incorporated into the care of children with cancer that they are now considered, not just an appendage, but a critical component in the

**10. Final recommendations for application: Since diagnosis on** 

care of the child with cancer. Where do we go from here?

everyone involved agrees that the child has entered the last or final phase of life.

information is given should allow the child to retain a margin of hope.

should be avoided (the so-called ''ruthless obstinacy'' treatment).

cure are virtually not existent.

cases and parental comments.

families.

grieving process.


How to Accompany Children and

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9. Medicine advances most effectively by narrowing its scope. Psychology advances by broadening its scope and generalizing to theory. Both together are necessary in the treatment of the child with cancer. As we continue to develop the research and intervention efforts with the children with oncological and hematological illnesses, we have seen our biopsychosocial efforts become a model for the increasing integration of the psychosocial in the treatment of children with a variety of chronic illnesses (Roberts, 2003). We should continue to disseminate our research and intervention findings among pediatric practitioners who are dealing with similar issues in different settings and with different chronic childhood illnesses.
